Pearls and Dreams

Bend but not break

2011-05-01T16:43:00.003-05:00

Isaiah 42:2 When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.

A blog friend posted a picture today, of rushing waters and lillies that normally stand strong, flattened in the rushing water. I immediately thought of the above verse.

There have been many times when I felt like I was drowning:
drowning in fear
drowning in nightmares
drowning in pain
drowning in confusion
drowning in poverty
drowning in fatigue

The fires burned oh so hot
as the questions for the future encroached on my every waking, and sometimes sleeping moments
my future
my son's future
my husband's future

There were days when I literally
could not lift the fork of food to my mouth
could not chew the scrambled eggs
could not hold my sons 4 oz bottle (of formula, because I was not strong enough to hold him to breast feed him)
could not dress myself
could not get my son into the program he so desperately needed
could not see how things could change

The realities of life seemed to be too big as
the roof didn't just leak, it poured
the doctors gave me one more
diagnosis
medication
prognosis
the teachers gave me one more note saying
he's failing
he's struggling
he's loosing
The bills piled higher
The budget got cut

No way out, no way in .. not way around it ...

and yet ..
The roof did not get fixed ..
we got a house through Habitat

The education did not get given
My son is a good guy, lots of character in
personality and
ethics

The body did not heal
But it did improve
My husbands did not die

The sun came out and a future was revealed

And when it comes right down to it .. I know that every last minute of every fear, depression, discouragement .. I knew that God was with me, holding me, knowing that the sun was coming out and I'd stand again ..

I was bent, and I was covered in water ..but I did not break. My roots learned that there are hard times and they planted just a bit deeper so the next time .. I'd have a better chance of standing strong.

It's funny how hindsight gives us that, but I can see each trial, each struggle, each chaotic situation left me slightly better able to handle the next ...

this is Lupus awareness month ..and I thought about writing about how lupus has effected me and inside I was fighting that .. i did not want to write about how it has effected me and seeing that picture .. I realized

I wanted to write about how lupus did not break me.

Perspective

2011-04-15T17:33:00.002-05:00

A few nights ago, I was unable to sleep. That, in and of itself is not uncommon at all. I was trying to figure out in my mind what my next steps in school should be. I started to think of all the classes I've had to repeat ...

those from when I went to school when I was too sick to be there and now i needed to repair my GPA

Speech
Developmental Psych
Humanities 2
Computer concepts

Those that I had to repeat because of my math issues
Beginning algebra
Intermediate algebra
Intermediate algebra

And those that I had to repeat because NSU told me to take classes at TCC and then did not allow the credits to transfer ..but they were still required.
Child Psych
Personality Theories

and all the extra time that it took and realized
if not for all the repeating ..
I'd be graduating in a month.

Wow, I've got 3 semesters to go but I theoretically *could* be graduating this semester if not for the time taken up taking these classes (let's not even start to talk about the money!)

Benjamin walked into my room and saw my face and asked what was wrong and I told him.

He quietly said
"yeah, and if my IEP had been followed and if I hadn't repeated any classes, I'd be graduating in a month too"

ouch

he's not said anything about not being in school, not being able to finish, but obviously it is bothering him.

And really ..what is 3 semesters? it's time, it's money and I'll be a year and a half older than planned when I finally get through, but the truth is, in a year and a half I'll still be 48 no matter if I'm working on my masters or finishing my bachelors ..and those 3 semesters won't prevent me from getting my masters and they very well may have me better prepared for my masters.

But my son? his lost opportunities? those will be much harder to bounce back from.

That is the true frustration.

Video .. Just Showed Up for My own Life

2011-03-30T21:35:00.000-05:00

By Sara Groves and Joel Hanson Back to Album
Back to Lyrics Menu
Spending my time sleep walking
Moving my mouth but not saying a thing
Hoping the changes would take by working their way from the outside in
I was in love with an idea
Preoccupied with how a life should appear
Spending my time at the surface repairing the holes in the shiny veneer

There are so many ways to hide
There are so many ways not to feel
There are so many ways to deny what is real

And I just showed up for my own life
And I'm standing here taking it in and it sure looks bright

I'm going to live my life inspired
Look for the holy in the common place
Open the windows and feel all that's honest and real until I'm truly amazed
I'm going to feel all my emotions
I'm going to look you in the eyes
I'm going to listen and hear until it's finally clear and it changes our lives

There are so many ways to hide
There are so many ways not to feel
There are so many ways to deny what is real

And I just showed up for my own life
And I'm standing here taking it in and it sure looks bright

Oh the glory of God is man fully alive
Oh the glory of God is man fully alive

There are so many ways to hide
There are so many ways not to feel
There are so many ways to deny what is real

And I just showed up for my own life
And I'm standing here taking it in and it sure looks bright

Self Hatred and refomatting the brain

2011-03-17T18:39:00.002-05:00

You're ugly.
You're stupid.
You're not liked.
You're immature.
You're a crybaby.
You're lazy.
You're in the way.
You're worthless.
You're boring.
You're a failure.

These are things that come to mind when I look in the mirror or think about myself.

They have permeated my life and the way I interact with the world.

They make me keep people at arms distance ... the fear that if they knew who I really was (which is the list above) then they would not only not like me, but be disgusted by me.

In the last several years I've been on a journey to change the way I live on this planet.
Somewhere on this journey I became aware of the fact that my filter that I see myself through is skewed.

While I'd never pretend that everyone loves me (I can list several who barely tolerate me off the top of my head and a few who outright dislike me) by and large, I have a lot of friends. I have people who tell me they respect me and love me.

I realized at some point that maybe rather than waiting for the other shoe to drop I needed to take a look through the filters that others see me.

I worked at that for a long time with some success, but limited.

Recently, I've taken to reformatting my brain ...through prayer, meditation, mindfulness, yoga and education.

This has caused me to exam my thoughts and compare them to the facts.
Some of these thoughts, I can't quite get around ... but some ...some I can truly defend to my innerself as being invalid.

You're stupid: You were in California's MGM program (mentally gifted minors ..is that not the most pretentious name for a program EVER?) You graduated with a high GPA. You interact with relative ease with those who society sees as intellectuals. You have gone back to school and maintained a 4.0 in credited classes.

You're not liked: You have too many friends for this to be true.
You're a crybaby: You can't even name the last time you truly cried.
You're lazy.You have worked with church ministries, you have raised 2 challenging children, been married for 23 years while combatting chronic illness, pain, a frustrating educational system. You are going to school full time and doing quite well.
You're worthless. You have friends who value you, who respect you. You have children who respect you and value your presence in their lives.

You're a failure. Your GPA is a 4.0 upon returning to school. You returned with a 2.1 GPA and have, through your 4.0 brought the cumulative GPA to 5.431. You are a member of Phi Theta Kappa, an officer in the regional alumni association. You are on track for being a member of Psi Chi. You have done all this inspite of MG, inspite of lupus, inspite of having family responsibilities.

In looking at those, it becomes glaringly clear ... self hatred has no true role in my life except to hold me down
keep me back
prevent me from living a full
fulfilling
enjoyable
and
delighted life.

re forming the way I think and looking at truths rather than thoughts is going to be necessary to combat the self hatred I've lived with for so long.

If Only In My Dreams

2011-03-07T23:59:00.003-06:00

I was asked today if I was able to have my dream job as a psychologist,what would it look like.

In 1972 two mothers, armed only with a dream and a passion and a raised $3000 opened school for their special needs children. The Little Light House was born out of a desperate need to fill a void that was dark and deep.

We had the privilege of being associated with the program while Benjamin was in kindergarten. That year remains in my heart as an oasis in a very dry, arid and frightenly vicious desert. Benjamin had a loving teacher, physical therapy, speech therapy and occupational therapy. For 1 very blessed school year, we got to take our son to school and did not have to cart him back and forth to 3 differnt types of therapy ... PT once a week, speech twice a week and OT three times a week .. from the age of 9 months till 11 years old ... except the year he spent at The Little Light House. We got a desperately needed break.

Not only that, but we, as parents were loved and encouraged.

If I were to dare to dream ... this is what my dream job as a psychologist would look like. The desire, the dream, the drive coming from much the same place as the founders of The Little Light House.

If I had my dream job:

I would have a place that housed
Physical Therapists
Occupational Therapists
Speech Therapists
Pediatric developmental specialist
Pediatric neuro
Pediatric psychiatrist
Pediatric Gastroenterologist
Pediatric orthopedist
Pediatric pulmonologist
Pediatric endocrinologist
Pediatric rheumatologist
Developmental Psychologists
Child Psychologists
Child Life Specialist

I would like there to be a small 'drop off'style day care where parents could drop the siblings of their child that is there to be seen, so they didn't have to bring them along to the appointment as an added distraction, hire a baby sitter or enlist family to help.
They would come in as a family, be serviced as a family and supported as a family.

A place where if an evaluation was done and it was decided that the child needed a certain specialist, they would be there, in that building, an appointment could be made.

You might be saying right now "That sounds like many children's hospitals all over america ... yes, probably so, but with one major difference: The family dynamic would be the focus.

The child's developmental needs taken into consideration, referrals would be primarily in house, saving on time, paperwork, lost communication and stress.

Therapies could be coordinated, treatments would be coordinated and the parents would be fully supported.

The child would get the developmental, physical and behavioral support needed. The focus would be on 'no ceiling' for the child, reach for the stars ...

The parents would be given the kindness, and support that is so often missing in the desert that is special needs. They would be given the tools they needed to feel like a competent parent. They'd be given time to enjoy their child .. to truly enjoy and laugh with their child.

If there was a school battle,we'd be able to help them. They'd be given the chance to form a stronger family unit. They'd be shown and told what they are doing RIGHT instead of the constant "you need to do this"

A fully integrated Clinic, prepared to fully deal with the dynamic that the child's special needs bring.

I am not a ground breaker, the chances are I will wind up at our already established Children's Hospital, I will work within an already functioning system ..

but ... if I had my dream job ... it would be one that helped the child reach for the stars and we'd celebrate with the whole family when the child does lasso their star!

Room full of tables.

2011-02-27T18:34:00.002-06:00

I found myself sitting in a room, a little too crowded, but not too bad. Another table or 2 in the room could have made for a little less knee knockage and plate clinking. But it was, in reality, not too bad.
I knew very few people in the room, just those at my little table, at least 4 of them.

I was listening to some of them give speeches, campaign speeches, in hopes of earning enough people's respect and trust to vote them into office for the Regional offices of Phi Theta Kappa OK/Ark region.

My fellow Alpha Mu Iota members and I kept our fingers, toes and anything we could cross, crossed for the youngest, newest member of our group. A young woman, 19, on the cusp of the reality that will be her future. Watching her give her story, knowing the back story, brought a tear to my eye.

I found myself looking around the room and I had this sudden flash back to an earlier time in my life. Another room full of round tables with chairs on them where knees knocked, cups spilled and people made general chaos. The tables were smaller, the chairs were tiny and the purpose was far different. I also was not sitting in the room with those who the chairs and tables were meant for.

I was sitting on my step fathers lap, my mother to my right and my kindergarten teacher across the table. I was 4 years old. The cut off for kindergarten was Dec 1, and my November 21 Birthday put me into the class much younger than the majority of my peers. An immature 4 years old, and rather small ... apparently, I was a handful for the teacher.

She showed my mom my file, my letters all learned and the only one in the class that could not only count to 100, with the next highest being somewhere in the 30's (not revealed who or how high into the 30's) but I was able to recognize the printed form of the letters in any order and put them in order. My letters were clearly, neatly written, in both capital and lower case and my reading skills unmistakable. They were allowing me to go to "The Big Library" that was reserved for the 2nd to 6th graders, when the rest of the class went to "The Little Book room" the library for the kindergarteners and first graders.

I can remember my step father patting either my hand or my chest. My mom nodding "hm hmms" acknowledging that they knew I could do all of these things. They, like my teacher were quite concerned with not my inability, but out right refusal to color within the lines, to write my letters on the line, in order as requested as well as my refusal to stay seated, not hollar out answers during story time and my insistance on chasing Harold around the playground.

I was sitting in this room of round tables and little chairs while grown ups talked about my abilities and my 'refusals' and then I heard it ... "She just won't make it in a classroom. You need to take her out, and put her back into pre school."

Maybe I shouldn't have understood, but I CLEARLY understood what was meant. I, was not going to be allowed to come back to school. I was being sent either home, or to school with 'little kids' back to preschool that I'd already graduated from.

I heard the words
All Day School
Immature
Stubborn
Leave.

I can remember clearly, starting to cry and asked "But aren't I smart enough?"

And I will never forget my mothers statement. In a matter of fact as if I should have understood this all along ... and if I'd wanted to, I could have had a different outcome ...she just looked at me and said
"Smart doesn't matter"

and with that, my world turned upside down. .

I went back to kindergarten the following year after spending the remaining of the world with an embarrassing pumpkin and jack and jill hill to play on. Only 'babies' would want these things!

I continued to read, and to count, and to color and to learn ... and the next year in kindergarten, on the playground the kindergarteners I was now with were about my size instead of much bigger. The bigger kindergarteners were now on the other side of the fence and at recess seemed to gather and point ... "There's Piggie! She flunked kindergarten!"

Somewhere in this time I first heard the term "Minimal Brain Dysfunction" ...so there it was, I had a brain that was broken (and somehow knew that was what dysfunction meant!) and I'd flunked kindergarten. What chance did I have? After all, I'd already been told smart did not matter.

That was it, I flunked kindergarten. It colored my thoughts of my school work clear through my high school graduation. I was not the high functioning student that could compete with my peers (and win) I was the person who flunked kindergarten.

So here I am, some 39 years later, 46 years old sitting in a room with larger chairs full of my peers. College students on the road to making a life for themselves. People of every race, color, socioeconomic status and age. I was by no means the oldest, not by a long shot. There were people who were much older, heavier and much younger and much thinner. There were people who were significantly healthier and some that were obviously in worse shape. I was a person in the middle of the room, watching speeches being given and I was suddenly struck with that memory of the round tables and smart didn't matter ... to realize I was here because Smart Does Matter ... to me .. it matters.

I was suddenly not the minimally brain dysfunctioned girl ... I was not the one that could not, would not, should not ... but the one that not onlyc ould ... should but WAS DOING ...
I was in a room full of Phi Theta Kappa students ... an honor society for those who had maintained scholarship levels that deserved recognition. I was here with people who not only thought I belonged, but wanted me here ...

I was a scholarly student whose stubborness is defined by one of the speakers (not about me directly, but boy did it feel that way!) as persistance ..the persisitance that would get me through to goal when the passion fades or seems far away. The persistance that once held me back was pushing me forward.

Tears welled up in my eyes and I realized that I'd worked very hard to get here ... and smart, for me, does count for something. It matters ...but more than that I began to understand

I matter.

Apologies to Rogers and Hammerstein

2011-02-09T09:50:00.003-06:00

There's a bright whitened haze on the meadow

There's a bright whitened haze on the meadow
The snow is as high as an elephants eye

And it looks like it's climbing clear up to the sky

Oh what a cold frigid morning

Oh what a cold frigid day

I've got a terrible feeling

More snow is coming my way

All the cattle are frozen like statues

They don't turn their heads as they see me ride by

But a little brown mav'rick has a glare in her eye

Oh what a cold frigid mornin'

Oh what a cold frigid day,

I've got a terrible feeling,
More snow is coming my way!

All the white on the earth is makin' me sick

The breeze is so busy it don't miss a tree

And an ol' weepin' willow is hiding from me!

Oh what a cold frigid mornin'

Oh what a cold frigid day

I've got a terrible feeling

More snow is comin' my way

Not quite the tribute that is normally on this date.

2011-02-05T14:00:00.002-06:00

I have sat here with an open screen for over 20 minutes, unsure of what to post.

It's annual post I make every year. Either on today, Feb 5, or on January 31st.

January 31st was my step father's birthday.

Febuary 5th is the annivesary of his death.

In 1979 he turned 50 years old on January 31st. On February 5th, he took his own life. I was 14 years old.

In 32 years he, by his own choice, has missed:
My high school graduation
My 1st wedding
My divorce
My 2nd wedding
My first pregnancy
My only stillbirth of a daughter ... my only daughter
My second pregancy
My first sons birth
My third pregnacy
My youngest sons birth
My diagnosis of chronic and at times, debilitating illness.
My sons diagnosis'
My oldests graduation from high school
My mother's decline .. emotionally, physically, socially, financially
My return to college
My induction into PTK

Those are the highlights and some of the lowlights ...

Everyone one of them, I needed him there.

When people say they've lost someone they love, they often mention that 'not a day goes by without thinking of them' and that is certainly true for me.

I have identified myself as a survivor of suicide for so long ... and today, as I've tried to write this ... I've realized that I am no longer identifying myself that way ...

I AM A SURVIVOR of LIFE.

You should be here, there is no doubt. Though, in recent months and years, I've started to realize that you may have died by other causes by now. Still, you would have only been 82. Your mother was alive and kicking, as were many of your aunts and uncles. Your cousin that is your age is still alive ... as are others. There is not real reason to think you might not still be here.

In 32 years, I've rarely allowed myself to be angry at you ... you were hurt and broken and desperate. I understand ... but ...

My tributes to you are normally filled with all the love I've felt for you ... how much I miss you. I guess, this year, it's filled with regret, some anger, a lot of frustration and ...more than I'd ever thought of ..

release.

I loved you. I LOVE you.
You taught me almost everything good about life. When people hear of my history they have asked "why are YOU ok?"
honestly it's because you taught me to pray, to look for good, to not give up. Ironically, that was the lesson you spent the most time on ...encouraging me to not give up .. not quit ...

but you did not live by your own lessons.

But you also taught me the worst pain and the worst trauma that I could have imagined.

I keep trying to end this on a good note. I guess, this year .. it's not going to happen. I will always miss you. I will always be grateful for your love. I will always be so glad of the lessons you taught me. I will always MISS you

and that

was your choice.

BILLY JOEL - Pressure

2011-02-04T16:24:00.000-06:00

15 inches of snow on Tuesday, and more today has cancelled school for the week. I should have met w/my classes 16 times and have met 10 times ... 6 classes cancelled for snow days! I recieved updated Syllabi today and have found myself humming Billy Joel's song "Pressure" ... Decided to post it ..and listened ...completely forgot "Psych 1 Psych 2" were part of the song!! "Psych major goes nuts while listening to Billy Joel sing the words "Psych 1 Psych 2 news at 11" .....

"Painting Pictures of Egypt" by Sara Groves

2011-01-09T23:06:00.000-06:00

I was wondering, today, why I'm working so hard ... will I ever get to where I'm going ...either in recovering from the eating disorder (ok, so that was what triggered the thoughts) or even with school ... been a bit discouraged of late ... got in the car and went to the grocery store ...punched in my new CD that Don gave me for Christmas and this song played ... I was painting pictures of Egypt ... I don't want to leave here, I don't want to stay ..it feels like pinching either way .. and the places that I long for the most are the places where I've been, they are calling out to me like a long lost friend.

It's not about losing faith,
It's not about trust
It's all about comfortable
When you move so much
And the place I was wasn't perfect
But I'd found a way to live
And it wasn't milk or honey
But then neither is this.

The past is so tangible
I know it by heart
Familiar things are never easy
To discard
I was dying for some freedom
But now I hesitate to go
And I'm caught between the PROMISE
and the things I know.

I've been painting pictures of Egypt,
I've been leaving out what it lacks
The future feels so hard,
And I wanna go back!
But the places that used to fit me,
Cannot Hold the things I've learned
Those roads were closed off to me
While my back was turned!

If it comes too quick
I may not appreciate it
Is that the reason behind it all
this time and sand?
And if it comes too quick
I may not recognize it
is that the reason behind it all
this time and sand?

Everything Matters ... Nothing Matters

2011-01-05T17:34:00.004-06:00

I heard a song today by Sara Groves that I'd not heard before. It's called "Rewrite this tragedy" and I realized .. it all matters ..and yet none of it matters.

Everything that has happened has made me who I am today ...good and bad.
I have made bad decisions, I have made good decisions.
People have hurt me, I have hurt people. I've been betrayed, I've betrayed. I've been abandoned and I've abandoned .. it all plays into how i make today's choices.

Yet in the grand scheme of things ...nothing NOTHING is so bad that it can't be undone.
Nothing is so good, so right so perfect that it can't be unstrung.

My heart can be broken today, and leaping tomorrow and visa versa.

Today, I can have a roof with a hole the size of a bucket ..and tomorrow I can be walking through the door of a house that love built.

Today, I can have the perfect job and tomorrow I can be laid off.
Today I can be in pain, unable to walk and tomorrow i can be running a marathon and tomorrow not walking again.

Everything changes ... every choice we make, every decision ... every move changes the next move and yet, in the end, it all seems to work out.
There is nothing that I can do, short of taking my own life, that is permanent.
The most consistant thing in life is change.

I can make choices that make life harder ... I could rob a bank and make life really hard.
There are choices I can make that make life harder in the short term but improve life ..like working to get a habitat house .. or a degree.

I can refuse to take algebra at 14 and struggle through it at 46 ..
I can refuse to take a supervisory job because I don't know that at 24 I'm going to be wiped out by my own immune system and have my disability payment significantly lower than it would have been had I taken the management payment.

I can quit ... or I can finish .. and in the long run it all seems to work out ...struggles come, struggles go .. but the consistancy of life is that it changes ...

Lyrics to Rewrite This Tragedy :
Tonight I forgot a
line in the play that you and I Have been rehearsing since the day we met
It made
me put down my script, made me look around a bit
And wonder how we came to play
these roles
I'm here to re-write this tragedy
One line at a time
Hold on,
I'm
changing all the scenery
It's okay we'll be fine
Cause we know how this
ends
Sometimes it's hard to tell what to keep and what to kill
What of this
makes us who we are
All that we love the most, all that we cannot let go
How much
of change can we survive?
I'm here to re-write this tragedy
One line at a
time
Hold on,
I'm changing all the scenery
It's okay we'll be fine
Cause we know
how this ends
We know there's a better story
There's a better story
Of true
love of true grace
There's the hope of glory
And our first chance to be truly
brave
It's the place we're goingWhen we can't stay where we are
I'm here to
re-write this tragedy
One line at a time
Hold on, I'm changing all the scenery
It's okay we'll be fine
Cause we know how this ends
We know there's a better
story
Tonight I forgot a line in the play that you and I Have been rehearsing
since the day we met
It made me put down my script, made me look around a bit
And
wonder how we came to play these roles
I'm here to re-write this tragedy
One
line at a time
Hold on,
I'm changing all the scenery
It's okay we'll be fine
Cause
we know how this ends
Sometimes it's hard to tell what to keep and what to
kill
What of this makes us who we are
All that we love the most, all that we
cannot let go
How much of change can we survive?
I'm here to re-write this
tragedy
One line at a time
Hold on, I'm changing all the scenery
It's okay we'll be
fine
Cause we know how this endsWe know there's a better story
There's a
better story
Of true love of true grace
There's the hope of glory
And our first
chance to be truly brave
It's the place we're going
When we can't stay where we
are
I'm here to re-write this tragedy
One line at a timeHold on,
I'm changing
all the scenery
It's okay we'll be fine
Cause we know how this ends
We know there's
a better story

This and That

2011-01-04T19:45:00.004-06:00

You can't ground children who have moved out of the house ... this is not a good thing.

My schedule for this spring is as follows:
Tuesday Morning 9-11:40 .. Physiological Psychology (or Psychophysiology same thing)
Tuesday Afternoon 4:30 - 7:10 Personality Theories (if this course looks familiar it's because I complained relentlessly about it spring of 2009 ..which apparently was an introduction level class ... and I could have gotten away with just this one. So sad)
Wednesday Afternoon 4:30 -7:10 Human Adjustment (follow up class to Intro to Counseling)
Thursday Afternoon 1:00-3:40 Infant/Child Psychology (what? what's that you say ... you remember me complaining last spring about child psych [in all fairness, I complained about instructor, not so much the class] ahhh good memory ... apparently a lot of what I took at TCC was considered 'introductory' and I get to retake ... sigh)

I think it will be nice just having class 3 days a week. Tuesdays have the promise of being tiring ...

Doogie Howser, M.D. - "A Mother-Son Relationship"

2011-01-02T16:42:00.001-06:00

It occurred to me that Doogie Howswer MD was on 20 years ago and maybe not everyone knew what I meant.
so in the spirit of trying to blog, even if it's short and sweet, I thought I'd post this ... ironic that I was thinking about a mother's love just this morning.

January 1, 2011

2011-01-01T15:00:00.003-06:00

1-1-11

I can remember watching science fiction TV show as a young teenager Space 1999 ... what worlds we'd thought we'd conquer before the end of the century.

As fast as technology was exploding, we, in our human imaginations, thought it would expand much faster ... and we, of coarse, having the power to creat such technology would also be able to control such technology.

I sit here, amazed at how life has changed in my 46 years on this earth.

I remember black and white TV ... I remember getting a color TV set and having the neighbors come to see it.
I remember the first tape recorder we had ... and what a treat it was ... we taped all our records onto tape so that we could listen to them and not worry about scratching them. (Ironic that CD's have brought us back to the days of scratching ... my very favorite song on my very favorite CD from my very favorite singer ... is scratched and unplayable :( .. a tad ironic)

I remember telling my sister, after she'd thrown a pillow at me and I missed something 'important' on Gilligan's Island (the nerve huh?) that we should have a TV that rewinds, fast forwards, allows us to see what we missed and not have to watch commercials. She told me I was crazy. I was 10. In less than 10 years my father had a VCR ...

I remember calling home one day after school to see if I could go to Jennifer's house ..and no one was home, yet the phone was answered! My step mother's voice said "You have reached the Mills Residence, please leave your name and number and we will get back to you as soon as we possibly can"
I freaked
I handed the phone to Jennifer
Jennifer said "this is Peggi. I'm going to Jennifer's. I'll be home before 5"
I got home and promptly grounded for 'lying' because I was too scared to talk to this machine. As most will tell you, I still hate to leave messages.

Not too long after that, I came home to my dad and step mother playing with this funny box on the counter. It took about a min to bring water to a fast/hard boil.

For the next 3 weeks, every meal we ate was microwaved. I still will not cook meat (rarely even defrost it) in the microwave.

My mom didn't get one until after my step father died in 1979. She used his life insurance to buy it and I always related the 2 in my mind. I refused to get a microwave ... till I had a baby and realized that life just could be easier without it having any weird meaning attached to it. Now, my microwaves are a daily part of my life ..but they have a bad habit of crashing on either christmas or Thanksgiving.
we call it the Eagler Curse ... either someone gets sick on a holiday or the microwave goes out. The microwave spent the week before Christmas acting funny, so we thought it was going to be the microwave ... I got the flu instead. I hate the flu, but honestly, it's cheaper.

I was a telephone teen. My step dad used to tell me that a potato was growing in there and we'd never know it because the phone was attached. (don't ask, I never did figure the logic out in that one). Shortly after he died a sales man showed up on our doorstep and changed my teenage years.
No more getting grounded for being on the phone longer than I was allowed. We had 30 min on, 30 min off rule (plus had to share with sister) so that parents could get through at some point. They didn't care if we stayed on all the evening if we left 30 min segments so they could get through. I had a bad habit of 2 hours on, 10 min off ... got me grounded frequently!
The salesman offered something called "call waiting" .. no more not getting through and I was able to keep the phone on my ear from the time I got home from school till I went to bed ....except for the times my sister punched me to force me off so she could make a call.

My sophomore year in high school a new elective was offered. There were those in the community that thought the school was nuts for providing it. Computer programming. TI 994A's were the computers ... and it seems that no one was really interested out side of the school. Computers ... in the house? Sure, why would anyone even NEED it?

10 years later we were discussing the oncoming world changing World Wide Web ... the internet highway that would change the world ...and how it has!

Computer speed, wifi, lap tops, phone computers ... streaming movies to our TV sets ... Wii ... video games ... and most importantly (said tongue in cheek , I assure you)
Blogging and Twitter!

through blogging I've poured out my heart
shared my poetry
told funny stories
told heartbreaking stories
Ranted
Raved
Relented
Wrote a novel w/NaNoWriMo
Shared my struggles with bad habits
shared my conquests
Shared my journey
Shared my progress
Shared my failures
Shared my HEART

It's a new year ..what technology will we see that we only saw in Sci Fi movies? what technology will be abused (texting was great till people started dying in car crashes and teens being victimized by sexting ..and not even knowing their being vicitmized ..what will psychologists be saying in 30 years over that current trend and it's fall out?)

I keep trying to decide if I'm going to blog more consistently or just stop. Stopping, is'nt likely, it's too handy of an outlet for the writer in me. I do think that I figured out that I think every post Must be profound ... and I'm not sure that is is a must. Maybe I just should work on writing a bit each day ... Doogie Howser style if necessary

January 1, 2011 ... I thought about what all I have to say today. I learned that sometimes saying a little is better than saying a lot or nothing at all.

(after thought here ...Was Doogie Howswer the world first blogger?).

Perspectives

2010-12-21T18:10:00.002-06:00

Apparently my neurologist and I have dramatically different ideas of what remission and partial remission are.

To ME ..remission is 100% symptom free without the aid of medication
To ME partial remission is 100% symptom free with the aid of medication.

Active disease on a regular basis is not remission.

Dramatic improvement to have full days ... even several days a week ...without symptoms ...
But as long as I'm having a couple of days a week where symptoms exist, I'm not sure I consider that a partial remission ...

Well Controlled
Not Brittle
Tolerable

but not remission

My neurologist, today, used the phrase 'partial remission' to describe my current state.
He emphasized the word 'partial'

When I said I still have symptoms, most days, although certainly not every day and the fatigue I deal with is more of a lupus fatigue than MG fatigue (yes, they are distinctly different and I have made enough progress to know the difference)

he responded with "yes, but unless you take a dangerous medication, ignore an infection or run yourself into the ground, you're not in danger of myasthenic crisis any longer. You don't have to worry about crisis coming up to bite you on the ass as it's done in the past."

he had a medical student with him and I chose to not remind him that most of my crisis' came on the heels of dramatic/fast weight loss due to severe restrictive behavior related to my eating disorder ...

I guess what I'm trying to decide is ... is this a difference of perspective? A difference of opinion? Is it medically significant?

He recognizes that I have symptoms on a regular basis and still need medication.
He recognizes that things are still difficult
He emphasized the word partial
He emphasized that my own behavior controls much of the symptoms (and oddly enough, it does. I do not have symptoms on days I don't do much unless I'm not doing much because I'm in a flare)
He made it clear that he knows it is medication related and therefore I need to be medically treated as if the disease were 'active'.

So, does it matter, in the long run, if I think partial remission is symptom free and he thinks it's well controlled?

Drive By Posting

2010-12-09T21:13:00.003-06:00

My semester is done ... it's been a nightmare of a semester. Not the one bad class I normally have, but 2 bad classes.

I felt the entire semester like I was caving under the stress ... and managed to pull out A's ... Sensory and Perception (one I had no idea what I was getting because he'd not returned 2 tests!) I got 913 out of 900
Abnormal Psych I got 609 out of 600
and Intro to Counseling I got 298 out of 300

Thank Goodness for Extra Credit!!
Extra Credit made a lot of difference and had i not gotten full credit on my big paper or my portfolio, I'd have been skimping the edge of the 90% range
I still don't know about algebra ... sigh.

Blogging the Time Away

2010-11-06T20:08:00.002-05:00

So, several years ago, a friend asked me to read her blog. I did, I kept reading. Then she tried to convince me to start blogging. She finally did.

6 years and a few days ago, I began my blogging journey. Soon after I found Grand Rounds and there I met a host of people ... many of which I'm still in contact with on a regular basis, others less often and some, I've lost contact all together.

Family have found my blog, friends have found my blog and an occassional friend or two has started their own blogs.

When I started, I had the intent of blogging primarily health issue, maybe eating disorder issues. It very soon turned into a general life issue.

I've blogged about lupus, about myasthenia gravis, about eating disorders, insulin resistantce, hospitalizations, surgeries, working for the opportunity to build a house through habitat for humanity, BUILDING said house through Habitat forHumanity, IEP struggles, homeschool problems, joys of parenting, pains of parenting, life chaos, life joy. I've poste pictures and poetry, failures and successes, depression and elation.
I've posted through my husbands brush with death,
my son's learning about life.
I've posted about going back to school.
I've posted much (but not all) of my life over the last 6 years. I'm not sure where it will lead or how long I will continue ... but for now it's here and it's been a great time, and an honor. Thank you to each and everyone who has read , commented and prayed.

It is what it is

2010-10-22T13:25:00.003-05:00

Recently, I was asked what it was like to be back in school at my age ... a few thoughts come to mind:

struggling to gain knowlege/skills in an area that I've always struggled with while watching students younger than my youngest is not fun and plays havok with my emotions.

Struggling to understand what comes so easily for others ... plays havok with my emotions

Remembering being given a list of facts to study for a test and reading it a couple of times and acing the test while I have to crack the books now, and actually STUDY to learn and understand because memorization is not going to happen like it did when I was a kid ... plays havok with my emotions.

Having a hot flash in the middle of algebra ...plays havok with my desire to not make a fool of myself. (this happened on Monday!)

Understanding concepts that seem foreign (and unfathomable) to my peers because they cannot imagine ever making the choices I've made or choices those we're studying have made ... boosts my self esteem.

Understanding that this will allow me to change my reality once I finally get those coveted letters behind my name is priceless and keeps me focused.

Knowing this is not an exercise in futility as some of my classmates fear ... is priceless.

Knowing it's improving who I am as
a woman
a wife
a mother
a citizen of Oklahoma
a citizen of the United States
a patient
a human
is unimaginable.

Being unsure of how this will all play out in the grand scheme of things .. a bit disconcerting.
Being unsure, at times, that physically this will work .. a bit disconcerting.

Being sure that I have no choice but to proceed because the what if's would haunt me forever ...comforting.

long semester

2010-10-11T17:27:00.003-05:00

August 30, Benjamin wakes up sick ...and today, October 11, is his first day back at school.

It's been a long several weeks.

We've had many concerns for the present and his future.

We've made some choices that others will not agree with, but ...we have to do what we feel is best. The scary thing is, on more than one occassion those choices did not turn out to be the best. But, I can only go with what I have now when making the choice.

Front and center in my mind is the choice to hold him back after kindergarten. The idea was that he'd have an extra year to learn the academics and mature. The maturity came, but the academics did not, and because he'd been held back, while the deficits between his age and his ability were strong, the deficits between GRADE and ability were not as strong. So, the district being who they are did not give him an IEP (without a court order) until 2nd grade.

Their idea of 'early intervention' is IEP by the 3rd grade ... that's not early ... when they qualify at age 3.

He's struggled for his entire life. He's been behind the 8 ball, so to speak from the moment he was born.

Our choices now seem to be the lesser of the evils, but by no means, a good choice!

I'm sure I post more later, but for now, those choices will remain private.

As far as me and the difficult class ...we're still on the eye. For 8 weeks, we've been on the eye and vision and at least one more week to go ... I'm ready for some other senses to study!

Breathing Again

2010-10-01T09:13:00.000-05:00

So, I get up at 6:30 to go to the Beginning Algebra class my instructor invited me to. I go to the 8 am class, come home and spend the day studying for tonight’s test. The information is dense, the topic is difficult and communication lacking with the professor.
Nothing with the referral has changed and my schedule seems impossible to keep up. Doubts about my physical ability to get through this process were creeping in …
Doubts about my ability to provide what my son needs were starting to overwhelm.
Doubts … doubts … and fear.
I drive to school and I tell God I cannot take yet another stress and have got to have some of the stressors removed.

I’m sitting in the middle of the test about ganglion retinal cells, LGN and parvocellular and it’s functions and a tune pops into my head … la lalala la la la…
A few more questions and the tune persists …
La lalalallalla …
As I look at the essay questions sure I do not know the answer for any of them I started to struggle to breathe …fighting the tears and the words
“you cannot loose my love” to the tune going through my head …
I finish the test, I go out to my car and turn on the CD in the car, the song playing finishes and the next song starts

You will loose your baby teeth, at times you’ll lose your faith in me. You will lose a lot of things, but you cannot loose my love.

I sit there for a few minutes, taking breathes that I’d not breathed in several weeks, if not since the day Benjamin got sick … feeling it go from my nose to my throat ..to my chest and into my abdomen …

I realize that I’d let stress take the place of my faith. I’d let my choices for coping loom as an option …

“you may lose your appetite, your guiding sense of wrong or right”

I’d let what I’d experienced replace what I knew to be true …

“You may lose your will to fight, but you cannot lose my love”

Something happened this time … nothing kicked in my fight mode, I was left feeling worn down, tired and helpless … When there is a fight, I know what to do. I know what steps to take. I know what the enemy is and where it is and how to fight it. But with this … this was just a reminder of all I was not, could not do and how helpless I was.

“you will loose your confidence, in times of trial your common sense”

I was putting all my eggs, all my sons eggs, into one basket, and the responsibility for the protection of those eggs were all on me. They weren’t God’s or my husbands … they were all up to me and I was seeing them flying through the air and being smashed in a gooey mess on the ground.

You may lose your innocence,
But you cannot lose my love.

I cannot lose His love … and the breathe reached my toes. I could feel the peace flooding over me, with each inhale and protection of my God with each exhale …

Many things can be misplaced;
Your very memories be erased.

I’d forgotten, briefly …what I believed. I put my faith for my child in my hands. I forgot that HE is my source of strength, not me.

No matter what the time or space,
You cannot lose my love.
You cannot lose,
You cannot lose,
You cannot lose my love.

One way or another, it will be ok. My son will be ok. I will be ok ..no matter the outcome … we will be ok. Not because I’ve done all the right things or never made a misstep ..but because my faith is in the one who made me … he’s been here with me each and every moment, waiting for the moment I turn to Him and let Him breathe in me.

You Cannot Lose My Love
By Sara Groves

You will lose your baby teeth.
At times, you'll lose your faith in me.
You will lose a lot of things,
But you cannot lose my love.

You may lose your appetite,
Your guiding sense of wrong and right.
You may lose your will to fight,
But you cannot lose my love.

You will lose your confidence.
In times of trial, your common sense.
You may lose your innocence,
But you cannot lose my love.

Many things can be misplaced;
Your very memories be erased.
No matter what the time or space,
You cannot lose my love.
You cannot lose,
You cannot lose,
You cannot lose my love.

so, nothing has changed ... no choice was made easier ... no new solution that was more palatable ... no sudden understanding of concepts that were wrapping me up in fear ... nothing changed except my focus.

The Unbreakable has Shattered

2010-09-26T23:27:00.001-05:00

This is unedited

A Diner opens it’s doors
and stays open day and night.
They feed food to all,
and coffee where conversation was bright.
The customer’s are loyal.
Morning, noon, night and even when the world is alseep.
The food is decent,
Conversation is better, laughter and even times to weep.
A small family forms,
We watch the others, to laugh, to cry, even to poke fun.
The door that lets them in,
Strong ‘unbreakable’ glass
(as all resteraunt doors should be!)
This door is the key to the fellowship,
It lets people in and keeps out the weather,
It allows the last wave
Till we can once again be together.
The winter wind freezes it
The summer heat bakes it
The spring and fall winds blow it
And it stands strong.
A drunk, or 2 or 10 or more
Tumble into it. A toddler bangs it’s cup on it.
A strong door, the entry to the place where
We all share our lives … and loves .. and disapppointment.
One day, a young 6 year old boy
His 8 year old brother tuants.
And the 6 year old boy goes to the parking lot
Picks up a pebble, the size of a pencil eraser
Or smaller
And he, in his anger … chuncks with all his might
This tiny pebble at his brother’s head
And the door shatters
Glass
Every where
Tiny shards
What once protected from the elements
What once allowed hello’s and good byes
Was now a pile of junk on the floor ..
The unbreakable …
it broke.
No. It shattered.
My heart felt that way …
Letting people in and out.
Sometimes frozen
Sometimes baking in the heat of
Pain that comes only from hell
Bumped into
Pushed into
Abused at times
But functional … and secure and unbreakable
But someone threw a pebble
With just the right force
With just the right ambient temperature
With just the right spot on the vunerability of my soul
And now I’m
Broken
Shattered
In pieces a shocking pile of broken unbreakables
And unable to fix myself.

World Suicide Prevention Day

2010-09-10T11:02:00.004-05:00

So today is World Suicide Prevention Day.

I've already seen a comment on twitter that it is 'just another day' the implication being that it's akin to "draw a flower day" (a silly day made up for purposes of this post)

The reality is ... for people like me .. we wish that this day had existed when suicide hit our family. We wish that more people understood the implications of suicide. We wish that things were different than they are.

I've blogged about my step dad on many occassions. If you've read this blog for any amount of time, you know that my step dad was my "Daddy". You know that the bond between him and I was stronger than any blood tie. You know that my world revolved around him.

He was 1 of 2 people in my life who I *knew* gave me unconditional love. (the other being my step mother)

When my world collided with suicide, I learned my world would never be the same.

One of my memories from childhood, well, several of my memories from childhood but I'll focus on this one, is of me coming home from school after a day of being bullied.

Dad was in the garden, so I changed clothes and went out to help him, something I did more often than not. I walked out to the garden and went to what was 'my' radishes. I bent down and started to pull the weeds out.

As I progressed, I realized tears were falling down my face. I wiped them away ... and my face became not only tear stained, but mud stained as well.
Daddy called me to the end of the radish row and then gave me a hug. He just stood there and let me cry. When I stopped crying, he pulled back a bit and sat down. I sat in his lap ...out there in the garden with all those plants that he and I tended to so carefully. The weed piles here and there ...ugly reminders that no matter how beautiful something is, there is something waiting to crowd it out if it's not carefully tended to.

He looked me straight in the eye and without blinking said "Darling, what is wrong?" Darling .. a word he used sparingly ... it meant "I'm focused on you, and only you. You, for this moment in time are the center of my world" (I was an adult before I realized that)

I told him about that days bullying episode. I still remember it, but it's not germaine to this story.

As I told him, the saddness on his face became apparent. When I finished, he hugged me again. He told me how sorry he was, and that he knew that his love didn't change the insults hurled at me by children who were my peers. But that his love was forever ...and their insults would fade ..some day. He was right. I still feel his love, but the insults ... they stay in the back of my mind, in a box ... where they belong. I no longer feel the impact of those insults.

When I was 14, his depression crowded out the love that we, as a family, had for him. His great tenderness ...the thing that made him such a wonderful father ... is the same thing that allowed him to feel the depression to such great depths. In his depression, he felt that we would be better off without him. He was oh so wrong. To this day, there are things that I wish I could tell him. Things I NEED him to do for me. Things I wish I could share with him. Not a day in my life has gone by that I haven't wished for a hug from him.

If you're considering suicide ... please know, that no matter how desperate you're feeling, no matter how alone, no matter how much you think that those around you would be better off ... they won't be. There will be a hole that nothing can fill in your absence. The world would NOT be better off without you. The pain and chaos left behind can only be prevented by your continuing presence in this world. Reach out. Accept the love offered. Let those reaching to you reach you.

No one exists in a vaccum. You matter ... to someone ... to me.

(the link is a poem I wrote to my Daddy on the 25th anniversary of his death)

What a Difference a Day Makes

2010-09-02T09:17:00.003-05:00

My life has entered a new phase.
My parenting has entered a new phase.
My marriage has entered a new phase.

My oldest son has left the nest. For those that have been reading my blog for years, you may be wondering how he got old enough to do such a thing? Apparently the same way I got to be the age I am .. one day at a time.

I'm, to be honest, ready. Maybe the key is that he brought his best friend to live with us 8 months ago, and then 4 months ago, Benjamin's best friend came to live with us. Maybe the key to being ready for your child to leave is them bringing home extra's .. to LIVE.

I was ready to have my bathroom back.
Ready to know how many I was cooking for. (who will be here? None of us, we've got ABC to do. Cook for 3, and they come home and say "where's dinner?" Or : who will be here? All of us, we're all off. Cook for 6 and 5 minutes before dinner was done ... they go trampsing out the door "oh, we decided to go get Buffalo Wings" ARGH!! that, was truly mind boggling, and aggrivating ..not to mention felt quite disrespectful at times)
I was ready to have my driveway back ...yes, my driveway. It is a 3 car driveway .. but all in length .. it's 1 car wide, 3 cars long. So if it rained, someone would have to move car so that I could get out, or I'd have to move car so they could get out.
Ready to know who was in my house at any given time.
I was ready to not have to worry about the washing machine and who had stuff in there when I needed it.
Ready to have some sense of privacy back.
Most importantly
I was ready for my youngest son to not have the intellectual competition around all the time. My sons friends are every bit as smart as Samuel ... my husband and I are not exactly lacking in the area of intelligence and that, is a lot, of intelligence in my son's face at all times. I was watching him feel like he had something to prove ... he has to face that at school, is it really fair to have to face it at home? He was becoming increasingly frustrated and his need to PROVE was increasing as the days went on. He is ready to not have to be anything but who he is, at least at home where it's always been safe to be so.

I have the normal concerns "will he be ok?"
Will he call ? Will he forget that he has a family? Will he behave? Will he act in a way that is not in keeping with the way he was raised? Will he get evicted for one reason or another? Will he pay his bills? Will he wind up right back in our house?

We've told him that we're proud of him (we are) and that we're excited for him ... but he needs to come back and call ..do not turn me into a "stalker mom" from a "soccer mom" who has to stalk her child to get a glimpse of what was once a huge part of her day ... and will always be a huge part of her heart.

We're proud of the choices he's making. They are smart ...but more importantly, they are wise.

We're proud of the friends he's chosen. We love them. The 2 that lived here, long before they lived here, had become known as son #3 and son # 4.

We're proud of who he is as a person but we're ready (more me than Don) for them to LAUNCH!

A week ago this morning, I didn't know they were moving out. Today, they are waking up in their own apartment.

And we have gone from 4 to 5 to 6 ... and then there were 3. *smile*

Epilogue

2010-08-21T00:50:00.005-05:00

So, after years of walling off and going numb the week of Jessica's birthday, a few years ago, with the death of my friends daughter, I knew it was time to mourn her and at the same time learn to celebrate the brief time she was a part of my life.

Last year, my friend went with me to pick out a bracelet with Jessica's initials and date of birth on it.

This year, I wondered what I'd do and decided to blog first thing in the morning, then release a balloon before class that evening.

I got up, I posted the tribute and then, as I do, I posted a link to twitter that I blogged.

I got immediate feedback ... twitters, direct messages, face book private messages and emails ... all saying "you've touched my heart " "you told my story" "I lost a daughter" "I lost a son"

Suddenly, yesterday, it seemed that my grief was shared ...and there is truth that says that a grief shared is a grief lessened.

I've been learning the truth of the idea that as I tell you my story, I heal, you heal. As you tell me your story, you heal, I heal. It is in the sharing of the stories that healing takes place.

On my way to get the balloon I thought of KylieBug (my friends daughter) I thought of those on Twitter and FB that had messaged me. I thought of the few others that I've known that have lost a child. So I got a balloon for Jessica, and one for Dr. Snit's child, and one for Kyle, and 1 for the person who DM'd me that she'd lost twin sons, and Dr. Gunter's son, and one for my niece who we never got to meet ...and one for the twitter friend who had 3 miscarriages and 3 failed adoptions ...

I took pictures of the individual balloons, and shared them ... and I tied them to a post so they could be seen together ... then, I let the group fly ... and I saw all our babies hearts together. I knew then, that I wasn't alone ...and neither was Jessica.

I have been amazed, humbled and encouraged by the outpouring of love that has come from this.

I'm grateful that others shared their stories with me, I'm grateful that they allowed me to experience this and I'm grateful they shared with me in this day!

For the babies we all loved and still hold close in our hearts, there will always be a bit of sadness,m sometimes a lot of sadness ...but all of us ..now know that we, and our babies, are not alone.

I See You In My Dreams

2010-08-19T11:46:00.004-05:00

It was a Tuesday Morning, August 16, 1988 and I had an OBGYN appt. They would be doing an ultra sound that day. *IF* we were lucky, we'd find out the gender.

I went off to my appt, waited to be called back, and they put that gel on my belly. The baby had lots of movement and the doctor squealed in delight when the baby decided that it would, in fact, reveal that it was more than just an 'it'.

I'd always dreamed of little girls. Bows in the hair, frilly dresses, Mary Jane shoes, or sharp white patent leather that goes clickity click click with Mamma's heels but at twice the speed.

I'd dreamed of girl scout camp outs with my daughter. I dreamed of throwing her her first slumber party. I dreamed of that first boy talk ...and the second and the third. I dreamed of dressing her up for the prom, I dreamed ...

The toddler girl dressing up in mamma's clothes, and lipstick smeared across the face. The pretty little plaid dress with black patent leathers for that first day of school.
Easter Bonnets and Easter dresses.

Baking cookies on a rainy day ...
This ...was my dream of parenting.

Quiet nights cuddled up reading Ramona the Pest, or Pippi Longstockings, sharing things like The Little House on the Prairie ..both books and TV.

Dressing her up for her prom ... watching her go off to college ... helping her plan her wedding and watching her dance her first dance as a married woman ...
These were the things I dreamed about when I thought of parenting.

I sat there with my mind like a whirling dervish and the doctor asked me if I had a preference. With tears in my eyes, I said "I'm terrible, but I WANT A GIRL"
She asked me if we'd had names picked out. "For a girl yes, we'd not agreed on the boy."

She smiled "Meet Jessica Eagler. Miss Jessica, we'll get to hold you in about 20 weeks"

I was 20 weeks along and my dreams of being a mother were coming true.
The doctor said she had a few concerns but didn't want me to worry. Take it easy, I could still work, but don't lift too much and don't do the walking in addition to working ... it was take my walks or work ..but not both in one day. Nothing heavier than a gallon of milk.

I went to work Thursday night at 10 pm. I reminded my co workers no bus tubs, but if I could help them to make up for it let me know.

The bar run had just finished. It was funny, There was less hitting on me now that I was showing, but the tips had almost doubled. I sat down to take a break, and evidently went white as a ghost. I told my boss I needed to go home ... NOW.
He let me go only I didn't go home, I drove myself to the hospital. They never asked about my marital status, they didn't ask if my parents were around, or family around .... did I have a friend they could call.

I was an invisible single, teenage pregnant teen as far as they were concerned, what was happening did not matter. I over heard the nurse say "We've got a late miscarriage happening. A teenager, here alone. "
The doctor came in and I said "I heard the nurse, I am NOT a teenager ... I was born in 1964 and am 23 years old. I'm married and was so when I got pregnant"

The doctor just said we have your age as 16 ... whoever wrote that is wrong! I actually, in the middle of a miscarriage had to pull of my drivers license.

At that point, a new nurse came in. This time, they took a history, a full history. Before they could complete it, I felt a sharp pain and doubled over and there was a gush that I'd not expected, but it sent the medical team into high gear. I've never asked if it was blood or amniotic fluid.

They gave me something in my IV, I assume it was versed. As I drifted off, I heard "Damn! this was a planned pregnancy, not a teenage mom!"

I woke up a few hours later. A doctor, nicer than the ones that I'd first dealt with came and sat down next to me. They told me that since I was 20 weeks along, the state would require a funeral, so to 'save me that' they put 19 1/2 weeks on the paper work. That difference made the difference between a miscarriage and a still birth. The problem had been an unusual one. My body was not built to have a baby, it essentially had smothered this baby and had not given it enough room to grow. They explained it to me in terms that I could not understand, using words I'd never heard before ..and I was still coming of what I assume to be versed. What I did hear and understand was "you will never be able to carry a baby to full term."

Not once during all this time had they offered to call anyone for me. I finally asked them to call my husband, then remembered we had no phone. So they called my mom. By the time she got there, I was standing outside the hospital, waiting.
Alone.
No Jessica
No dreams
No hopes
No baby.

That was 22 years ago today. My heart still wonders about Jessica.
Would she have my mousy brown hair or Don's dark curly. Would she be musical and drama oriented like me, or a math geek like Don? Would she have been popular, would she have struggled. What was my Jessica meant to be.

It took me a long time to get to the point where I didn't just zone out and let this week pass without consciousness. Last year, was the first time I celebrated her place in my life and heart.
This year, I wanted to honor her by telling her story. Recently it has been told to me that stories heal ... telling our stories heal ourselves and they heal others

Jessica Dawn Eagler ... you are forever loved.

Today's Thoughts

2010-08-07T20:17:00.001-05:00

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping and with a breath of kindness blow the rest away.
Dinah Craik

Yoga Revelations 3

2010-07-16T18:20:00.001-05:00

I went to a new class in Yoga today ... Deep Stretch. (interesting to say the least)

A lot went on, I'll just hit the highlights of the meditative ending. As I was laying there and I contemplated all she'd said during the class (different instructor, the studio owner) ... about body image and acceptance ..about ability ..about pushing to the limit, but not beyond .. etc
It struck me how much Yoga is like Phillipians 4.

Accept where you are .. how you are ..

Phillipeans 4:11 I am not saying this because I am in need, for I have learned to be content whatever the circumstances. 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.

About focusing on the hear and now and what the word Namaste encompases
7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things

About Being willing to push through the anxiety/fear/lack of confidence to the edge of ability

6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus
13 I can do everything through him who gives me strength.

She gave me a lot to think about.

There is more churning in my head ...

just not sure I can put it to words yet

It's Official

2010-07-12T16:49:00.000-05:00

Enrolled, student ID, all paper work turned in, set to start classes August 16 ... Abnormal Psych; Intro to Counseling; Sensory &Perception... Plus that dadgum intermediate algebra ... BUT as of this fall College Algebra is no longer required .. Math for Critical Thinking instead!

Profound Self Acceptance

2010-07-10T13:56:00.002-05:00

I'm listening to a CD on Profound Self Acceptance by Mary NurrieSterns

In the CD, there are many gems ...

"if you find a diamond in the dung, wash it off, and never forget it's a diamond"

But the one that keeps ringing in my ears

" Memories and stories are not the truth of who we are. But they can have great power over our lives. They are untruths that prevent us from knowing ourselves. They snuff out life and inhibit the unfolding of our innate potential. Repititious and immature they do not evolve in response to later life events. Instead they interpret on going life events through their filters, for example an innner theme: “ I’m not competent” may result in the need to be perfect to prove competency. Mistakes are seen as evidence of not being ok and result in ever greater pressure to get it right. Although people under the influence of a perfectionistic theme may be accomplished in their careers their ability to relax and enjoy is be inhibited by the endless pressure they do not know their innate worthiness. The thoughts and themes that make up our sense of identity are immature, they are literally interpretations of a childs thinking having arrived in our heads when we lacked the intellectual capacity to know that our conditioning is not who we are. They mirror the trauma’s events and attitudes that surrounded us in early life."

There is also the simple sentence:

We do not have to remain captive to our stories.

And then there is:

Our task is to remember that
Our Worthiness is our birthright, We are inherently worthy and precious. Just as a diamond is always a diamond.

and

We deserve to be here, just because we are here.

In Today's Email

2010-07-08T15:37:00.001-05:00

NSU-BA Application
From: Patty Kitchen

To: pearlsofaneagle
Date: Thu, Jul 8, 2010 9:48 am

ACCEPTANCE FOR FALL 2010
Congratulations on your admission and welcome to the Broken Arrow Campus of Northeastern State University. You will be receiving your printed acceptance letter by mail.
Academic Advisors work on an appointment basis only. Please call 918.449.6134 to set up your advisement appointment. We look forward to your phone call and seeing you on our campus.
Best Wishes,

Patty Kitchen
Admissions & Enrollment Specialist
Northeastern State University-Broken Arrow
www.nsuok.edu

The Child in Me

2010-07-07T21:39:00.001-05:00

Let’s go for a walk, while we share our heart,
Lessons for life, things in which you’ll take part.

Life can get hard; I know it doesn’t seem so
Let me tell you the things that you should know.

When darkness comes, and trust me it will,
Remember your faith, darkness can’t kill.

When loss and terror strike out of thin air,
Keep your heart open, remember to care.

Things will happen you can’t even dream,
Not in the darkest nightmare scream.

But you’ll come out fine, stronger and bright,
You’re so young now,some day you'll need insight,

You won’t deserve to live in that cage.
You'll need help to turn the page.

Destruction will happen, by you and by others,
You need to separate, yours from another’s.

The Grace of God, you’ll depend on often,
But it will take a while for your heart to soften.

In time you’ll understand what you need,
To breathe, to love, to hear your own plea.

But for now, let’s suffice it to say,
You’ll learn very early just how to pray.

Lessons you’ll learn, you’ll stand proud,
Even when you hear the voices a crowd.

You will find peace over and over again,
Even when all around you is dim.

If I could stop it, I promise I would,
Many times you will think that I should.

Someday, maybe not too far away,
Our hearts, together again to stay.

Listen up; you’re me, thirty years ago,
This path that we walk is not just for show.

A heart that is wounded, heals even stronger,
You can bear this all, just a little bit longer.

When in the future, I forget you’re me,
Remind me together the future we see.

A young girls dreams, I do treasure them alway,
I’ll lose the path, but come back some day.

Together we’ll face this … the adult in your eyes
The child in me, no more fright in the lies.

No longer, I promise, to ignore you inside,
No more will you worry that I too have lied.

It’s time to come play with me in the sand,
Swing high, climb low, play in the band.

Time to move forward, with one heart aligned,
It’s our future that we have yet to sign.

© Peggikaye Eagler

SEIZE THE DAY!

2010-06-29T19:54:00.003-05:00

Because I'm in school at this stage in life, I've developed friendships with people who are the ages of my sons. 18 to 25 year olds (my sons are 18 and 20) who have their entire lives in front of them.

Some of them are irresponsible, lackadasical and carefree.

Some are hard working, have a goal and working toward that goal, but love life, have fun with their friends and enjoy each moment of every day.

Other's are so focused on their futures that they have no time for the here and now.
Each grade, each class, each decision made, on a daily basis, impacts their future. (or so they think).
They spend their days fretting about how they are going to get there, what they are going to do when they get there, what job they will have, where they will do that job, what city they will or will not live in, who they will or will not be married to and how many kids they will or will not have.

They worry about if they will have kids, how they will balance their career with those kids and they worry about choosing a career NOW.

They spend so much time in the future that they are not experiencing life at it's fullest. They are missing out on the joys of early adulthood. They spend most of thier time with the older students like me, asking questions and basing decisions on choices that my peers and I did or did not make. They mistakenly see me as a peer, when in fact, my peers are the non traditional students going back to school in middle age.

Asking for our wisdom ..that's one thing, but balancing their lives on our answers ...seems to me to be a way to miss out on some important experiences.

I so wish that I could tell them ... for this night, put down the books (unless there is a test or a paper due tomorrow) and go to that pool party you were invited to. Go shopping with your girlfriend. Go watch that 4th of July fireworks display. Sit in awe at the meteorshower display with your friends ..while all those whose bodies have long since decided that midnight was too late to be up have gone to bed. Enjoy this moment of your life. It WILL pass too soon and when it is gone, you cannot retrieve it.

You cannot relive it. You cannot have these days back ... they are yours for the grabbing ...so grab them! SEIZE THE DAY!

The time for careers and choices is coming all too soon.
When you're 45 and you're in college and you have no degree ...that clock is truly ticking ...when you're 20 and you're in collge ...do your best ...get the grades, but live this life ... your clock is ticking too ..but not the same clock ... it's a different one .. one of freedom and fun and fearlessness ...

Please .. please put down the goals for tonight and pick up the beach towel ... enjoy yourself while you can. Your career will be there ... I promise you ..tomorrow will be here all too soon and you'll wish these days were here again.

More Revelations

2010-06-20T20:43:00.002-05:00

He Knows My Name (Tommy Walker)
I have a maker He formed my heart
Before even time began
My life was in his hand
Chorus
He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call
I have a Father
He calls me his own
He'll never leave me
No matter where I go
Chorus
He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call.

My name, something I've blogged about a few times. It was a source of irritation to me on many occassions but the one thing that God used to get my attention.

Recently, it has been brought to my attention,by God that he wants more from me ... for me to do more than serve him ...but to rely on HIM instead of me. To break down the walls that I've had up and to allow not only Him, but others in as well.

So, this morning, I go to church and we sing a couple of songs that have really hit home over the years and then ...we sang the one above ... He knows your name
...
He sees each tear that falls
...and there I was, again, in public with tears falling down my face.

I wish I could see where this journey is taking me.

800 and counting

2010-06-12T21:26:00.002-05:00

In November 2004 I began my journey into the blog world. I had no earthly idea of what I was getting into, the people I'd 'meet' and the things that were in my head just aching to get out.

As I pondered this 800th post, I thought about doing a review of my favorite posts. A review of the different type of posts. A review of ... and I worked on one and wound up feeling rather tangled in the mess that is my blog. I started to blog with the idea of it being a medical blog. Though, honestly I didn't know what that was at the time. It wasn't very long before I found Grand Rounds and participated.

I also found that I have little tolerance for blogging much about my health issues. Most of the posts have been done because I was emailed a question. That was the other odd thing I found. People not commenting but emailing me. In an attempt to get more commenters, for a while I removed my email ...but all it did was reduce the feedback. Commenters that did comment were still commenting, but those that had communicated through emai, stopped. So I put it back.

One of the most important aspects of my blog, for me, was the ones I posted on my eating disorder. It brought a very secret habit to the open ... honest and sometimes raw ... it left very little room for me to ignore the self destructive nature of the habits I'd worked my way into participating. I wonder, at times, had I not come out with the eating disorder if I'd not have retreated fully into that until it took my life.

I posted about my journey to get a house through Habitat for Humanity. I posted about my health. I posted about my issues with my sons education. I posted about my family issues. I've posted about many different area's of my life. The one I've enjoyed the most ... my choice to go back to school and the journey that has taken me on.

When I started to post, I was a mother of young boys, I was fighting Lupus and Myasthenia Gravis. I was the wife of someone who had a significant battle with polio and post polio syndrome. I did not see into the future ... I was too busy fighting today. Through many processes, including being successful at the difficult process of getting a house through Habitat for Humanity, learning I had more to offer a church than wishing I could do more .. I learned to find a dream ...and I learned I had what it takes to make those dreams come true.

Probably more importantly, I learned that I value my health ... and will do anything to be the healthiest I can be ... including learning to eat right and to not participate in the slow self destruction that I'd done since I was 14. I wish I'd learned before I developed gastroperesis, lost my teeth and developed polyps on my throat ...but I have learned.

I have learned that I can stand on my own. I've learned I can do things that are hard. I've learned I can be what I never dreamed I could be. I've learned that I am a person.

While I've made quite a few strides in the treatment for the eating disorder, my therapist has decided it's time to address some of the peripheral issues. Some, I agree with (my perfectionism) some ... not quite so sure (body image). I honestly don't see the point of working on body image while I'm on prednisone. While I'm the weight/size that I am ...what good will it do to try to appreciate what is not appreciable? I'm willing to work on it..but it does seem a bit of a waste of time/energy. *shrugs* I will possibly post about it as time goes by.

So, here I am ... finishing up the 800th post having said not much of anything, except that my blog has been a journey that I'm glad I have taken. I appreciate those that I've 'met' through this blog and have enjoyed reading many blogs out there of many different styles. Thank you, the few readers I have left, for sticking with me. Thanks for the encouragement that you've offered, particularly when Don was in the hospital 3 years ago and as I've headed back to school.

I looked at him ...and it didn't make sense.

2010-06-04T00:33:00.003-05:00

Benjamin was not even 3 yet. The Sunday paper had a great big article on autism. Coming from a family of special education teachers, it caught my eye. I became alarmed as I read the check off list.

Delayed speech ...check
Little to no eye contact ...check
Little or no response to name ...check
Appears deaf at times ...check (he'd had his hearing checked 6 times before his 2nd birthday because of this trait)
Plays alone in a group of kids ...double check ...unless he can hide in a closet ..then he won't even parrallel play
Robotic speech ...check

by this time, I was terrified. We'd already had so much going on with him ... starting at less than a week old.

Self stimulating behavior ...check ..but that was the first time I could put a label on his constant spinning, banging into walls and hand flapping.
Inflexibility (routine oriented) ... CHECK
Moves constantly ...check, double check and triple check ... this was one way he earned his nickname Tazmanian Devil
Reactive to sounds, lights, textures, smells and flavors ...HUGE CHECK
He had all that and then some. He threw up daily because of his sense of smell, taste and reaction to textures of food in his mouth. He would not ..could not ..mix textures. No casseroles, no sausage biscuit, no biscuits and gravy, hamburgers were taken apart to eat .an if food was mixed ... there was no way in God's green earth it was going to be eaten by him.
He could only wear clothes of certain textures and socks were pulled over the toes on top of them because the seam of the sock was unbearable.

The next morning I called the family doctor for an appt. I couldn't talk. I handed him the newspaper and this giant, gentle man had been standing and suddenly was sitting down ...with a bit of color lost in his face.

He said it was all too possible. He would make an appointment for him to see the neurologist (Benjamin had been with a neuro since he was 2.5 months old)

We got into the neuro the next day.Again, I couldn't talk. I showed him the article and he looked at me, looked at Benjamin and said he'd be referrring us to a pediatric psychologist and a developmental pediatrician. The Developmental Pediatrician, just down the hall from the neuro (in Children's Medical Center) just happened to have an opening right then because of a cancelation. The neuro went with us to her exam room. We gave her a history ..thank goodness he was there, I was rather stunned.

The neuro left and she started to exam my son.

She said to keep the appointment with the pediatric psychologist. She'd do a full developmental eval, but, yes, the diagnosis is Pervasive Developmental Disorder -NOS. I had no idea how familiar I'd become with the new letters in our family's alphabet soup.

The developmental pediatrician gave us the CARS ...Childhood Autistic Rating Scale.

One of the most alarming symptoms that we'd found odd was his lack of response to pain. None ... he'd grab my hot curling iron and never react .. a few days later I'd find an infected burn. He'd try to reach his hand into boiling water to get at the potatoes or into an oven to get at the chicken. Thankfully he never succeeded at those, I was on constant alert if he was awake ...but, one time I did get a rather uncomfortable and nasty break to one of the bones in my feet when I realized he'd gotten a chair to the stove and spaghetti was being boiled. I tripped and down I went, which distracted him

When the evaluation was done ... which was a full 8 hours, done over 4 days in 2 hour segments ... she sat my husband and I down. She explained that the CARS had a scale of 1 to 60. 30 to 60 was autistic, and 20 to 29 was autistic characteristics. Benjamin scored a 39. Well into the autism range.

We then went into high gear. No internet in those days, but I stillmanaged to learn probably more than I could learn now. I joined the Autism Society, a mom's group and they increased his speech therapy to 2 times a week and OT to 3 times, and PT from 2 times a month to 1 time a week.

We learned about ABA and Sensory integration therapy in OT .. we worked hard.

After several years ... he was in the first grade (without an IEP but that's a story for another day) I realized that everytime I brought up the Sensory integration therapy his OT changed the subject. Frustrated, I decided to find out more. I was angry and frustrated that for 6 years we thought we were getting SID therapy in addition to regular therapy and he was only getting standard OT.

I was frustrated, angry and scared .. I went to my physical therapy for a post operative session and the therapist was asking about Benjamin. He then asked me if I'd talk to the pediatrician about moving his therapy to that place. I did, he did and so ...we did.

SID therapy was 2 times a week, standard OT (including using handwriting without tears).

We saw remarkable improvements. One of my main desires for this child would be his sensitive stomach ... any strong smell, good or bad, resulted in his throwing up. Daily he threw up. All I could think of was that no one should have to throw up every day. And we were dealing with Barrett's Esophogus with my husband and I couldn't help but wonder if he was not at risk for that as an adult.

During this time I was a very frustrated (and scared) mother. I'd go to the autism chapter meetings and the autism diagnosis made sense. I'd read books about it and it would make sense. I'd talk with other mom's of children with autism,and it would make sense. I'd talk with the doctor's and it made sense, and I'd look at Benjamin and it didn't make sense. (I'd said this to friends on many occassions)

We did so much in the sensory stuff, but the brushing that my friends had found sooo benificial, I was unable to do. My own health issues left me with the inability to do it. Brushing with the wrong pressure could backfire and make things worse.

My OT heard about an addition to the brushing therapy and given Benjamin's oral issues, was facinated. His boss sent him to Denver to a workshop to learn the method from the same woman who came up with the brushing therapy.

He came back to Tulsa, and his first day back we tried it with Benjamin. It was the same principal as brushing, but for tastes, textures and smells ... OT had been told theoretically it could effect all his sensory systems, but it was only really going to be effective on the mouth/nose.

So, we did it.
That night I had one very angry little boy. He hit me, he bit me (he'd never bit anyone before and here he was at 9, biting someone!) The next morning, I did the therapy and he bit my finger ... HARD. A few minutes later, he poured a mountain dew down my back. Frustrated I was going to tell the OT the next day that it didn't help ... in fact it made things worse, my child had changed personalities overnight!!

We got up to go to therapy and my husband went with me to help figure out the new plan. We took Benjamin to a diner for breakfast. We got him the standard breakfast and then became almost angry when he mixed the whole plate and poured gravy over the buiscuts, eggs and sausage mess. Then he did something that still sense shivers up my spine ..he sat there, still ...and ate it and did not throw up. It dawned on me that he'd not thrown up even once since before therapy on monday. This is a child that started throwing up (projectile, not spit up) before he was 10 hours old and had continued to do so without missing a single day .. sometimes several times a day. He'd gone 2 days ... he was eating mixed foods.

The change was remarkable ...and fast ... he, to this day, has not thrown up because of smell or texture. The only time he has has been when he has a migraine or stomach flu.

Time went on, the therapy continued and this child started to emerge from what we'd always known as Benjamin. Eye contact ... self stimming all but extinguished ... interactions with other children ... one by one the autistic characteristics disappated.

We recieved a letter that the developmental pediatrician was moving and wanted a final appt with Benjamin. She'd not seen him in a year and we walked in, he held out her hand, made eye contact and initiated a conversation (he had to, Dr. R was too stunned). She pulled out a CARS form ...and his new score ....

14.

From a 39 to a 14.

I've spent years saying that what we had was a 'proper misdiagnosis' ... he'd fit the profile/diagnostic criteria ...but his real diagnosis was Sensory Integration Disorder (along with TS/OCD/IQ of 80/Auditor & Visual Processing Disorders)

Thankfully, the pediatric neuro had been firm about any diagnosis could be 'fluid' ... just because we say A today, doesn't mean tomorrow with changes ... in Benjamin or in medical science ...and tomorrow could be a P and the next day an H.

Today, his IEP lists popularity and above average social skills as his strength.

Sensory issues crop up now and again and I remind him to do the oral therapy. Usually 2 or 3 days of it and the SID gets back under control for several months.

Our journey into the world of autism lasted from age 2 to age 11. 9 very long, painful, and terribly frightening years.

But I learned sooo much ...about perseverance, about determination, about coping and most of all ..about change.

THYMECTOMY

2010-05-31T15:38:00.002-05:00

June 2, 1992 … A day neither I, nor my family are likely to ever forget. It is the day a saw was taken to have my breast bone and was opened wide to remove my thymus gland. This had the hoped for potential of putting me into remission.

October 13, 1989 I was a healthy, strong and active woman expecting (13 days past due date) her first child. October 14, 1989 I was a new mother and had been ushered into the world of medicine, medication, diagnosis processes, surgeries and the chronically ill. I had been a full time student, waitressing full time and walking 5 miles a day. Within 3 days I had double vision, my arms would fall when I’d try to do my hair or make up, swallowing and chewing had become an issue and I’d fallen several times.

It wasn’t until the second week in March, 1992 that I was diagnosed with Myasthenia Gravis. (that, is and of itself another story ) The treatment, they said, was a drug called Mestinon (I call it my little white miracle pill); Steroids; Imuran; and a thymectomy.
Because of my family situation it was decided that the thymectomy would take place in June after school was out. (Husband was a full time student, Mom was a teacher). I became more and more nervous in the intervening 3 months time. The idea of having my chest cut open was not my idea of a good time. However, by this point, I was willing to do anything to get rid of the overwhelming weakness and fatigue. Ironically, 18 years later, I’m still willing to do anything to get rid of it.

June 1, 1992 I checked into my local hospital, and was prepared, again for the surgery I’d have first thing in the morning. They had me shower and cover my chest in beta dine. I went to sleep and woke up as they were giving me a pre-surgical medication. I got down to the surgery area and was already getting a bit groggy. All I remember is that my sister in law was on duty (as a surgical nurse) and she was there making sure I was being well cared for. The anesthesiologist came up to talk to me and all I could think was “those eyes! They’re beautiful!” To which, I announced to him and everyone else around. (Not in my normal behavior!)
I was taken into the operating room where I remember the surgeon saying hi, and the beeping of the machines and then I was in recovery demanding to know if my babies were OK. My sister in law leaned over me to say that they were fine, I’d had surgery and the babies were not involved. (I must have thought there was an accident or something). The pain was unreal. The one thing my sister in law said was nice is that I’d not remember flirting with the anesthesiologist or the demands to know my children were ok. Um … nope, remember both clearly!

I had been told that morphine would not be used because of it’s associated risks with myasthenia gravis. I do not remember the medication that they said they’d used. In the operating room they gave me my first dose and apparently, I started to crash. They gave me IV Mestinon to help and then gave me morphine because worst case scenario I’d need a respirator that was going to be needed if they used the substitute medication. Ironically, the Morphine *didn’t* effect my MG. Later that day, there was a nurse that was talking to me, telling me that I would be unable to remember most of what happened due to the morphine and to not let that bother me too much. Ironically, I was probably as clear headed on the morphine as I am now (which is kind of scary if you think about it too much!).

About 6 hours into the ICU stay, a nurse came walking into my room, assuming I was asleep (MG was causing my eyelids significant drooping, it was easier to keep them closed) she told the nurse that there was this guy who claimed to be my brother, but there was no way … blond hair, significantly lighter skin and blond mustache … I grinned a myasthnic snarl and said “That’s my brother in law, Terry!” The nurse looked at me a bit sheepishly and said “boy am I glad morphine won’t allow you to remember me.” (WRONG AGAIN!)

My brother in law came in and joked with me. He told me some ridiculous joke about a llama and a camel that for the life of me I can’t remember. (Go figure)
That evening, the pain started to worsen. I asked for some pain relief and the male nurse said he’d get some morphine. No one had told me or my husband that they were using morphine. All we knew is that morphine could be cause for need for respirator. We both went into panic demanding something else. The nurse rather callously said that the only thing on his orders was morphine and he was not going to call the doctor at 9:30 pm to ask for pain relief for anyone.

My husband, became upset (understandably) and demanded a solution. My chest had been cut open and he (nurse) was going to wait till the 9 am rounds? Almost 12 hours without pain relief was unacceptable. They argued for several minutes rather loudly till the nurse slammed the door and came back in and shoved my chart at my husband to show him that they’d be using Morphine. My husband took a few deep breaths and explained to him that no one had *told* us I was getting morphine, just that it would never be used on me.

The nurse got the morphine for me, then I didn’t see anyone till the next morning. I woke up to the surgeon saying “What do you mean you’ve not checked on her since 10 pm? What is ICU FOR?” (I’ve had 15 surgeries, and 27 stays in the hospital, I’ve had 3 bad experiences, and 2 of them were in this same ICU. But when Don spent a week there, it showed no evidence of being what I’d experienced.)

A day or two after surgery I learned that respiratory therapy was going to come in about every 3 hours. They would put some liquid into this little cup, plug the tube into the wall and I’d breathe and I’d feel better. They’d have me cough and I’d wonder how someone could go from savior to torturer in 5 minutes time!

They said I’d be in the hospital for about 5 to 7 days. That came and went and neither my blood tests nor my breathing tests were where they felt they could send me home. By the 9th day, they said I was getting close. The 10th day I received a call from home, my 3 year old had stopped talking …all together. This child who was using complete sentences at 1 year old had stopped talking and stopped communicating. I spent 2 hours crying over it … afraid, worried and desperate to get home. I heard my surgeon’s voice in the hallway. I got up out of bed and walked to the nurses station and demanded to be let loose so I could go home to take care of my child. He said that anyone that could stand that straight, walk that fast and be that determined, could go home.

It would be 15 years before I realized the importance of some of the short term relationships I'd built. I was a flexible patient. Understanding, and kind. I was not demanding and was, for the most part, complient (and if I understood the importance, I was totally complient) I asked the doctors, nurses, nurses aids and respiratory therapists how their day was going. I thanked them. I tried to never take advantage of my role as patient. When my husband went into critical condition 3 years ago ... I dealt with many of the same people. They remembered me, they remembered what kind of a patient I was ..and they bent over backwards in their patient care of my husband. (While I realize most people might not be remembered, having such a rare illness as Myasthenia Gravis, married to someone with SEVERE effects of polio .. that patient kind of sticks out in ones mind)

They let me go and a week later I was in the surgeon’s office … my baby (6 months old and 18 pounds) had been hospitalized with pneumonia. He’d gotten hungry and the nurses weren’t coming to pick him up to give to me to feed him. Time went on and he was becoming hysterical and I picked him up … a bit more than the 5lb limit I’d been given. My breastbone immediately let me know that I’d made a drastic mistake. The surgeon said I should have just given him the bottle in bed … the problem was, his reflex was so severe that he’d throw up if he wasn’t at just the right angle, he’d throw up (which was the suspected cause of the pneumonia, aspiration). It wasn’t that easy … so the surgeon called the pediatric floor and said that they MUST do the lifting of this child in a timely manner that did not risk his patients health in the process. He also put in a call to the family doc who was caring for both myself post surgery and my baby.

At the time, I was sure that the thymectomy would be my ‘miracle’ heal from the surgery and sometime in the next 3 years the MG would magically go away. It didn’t work that way. It’s been 18 and while MG is no longer the prominent focus of my life that it once was … it is still there, daily as a reminder that I must put my health in the forefront.

I have been asked, since the surgery did not work, would I do it again if given the chance, knowing what I know now (about the chances of it working). Yeah, I would, I’d have done anything to rid myself of the feeling in my muscles that it gives. The reality is, if I went to my neuro tomorrow (I have an appt at 9 am) and he said “there is evidence that we missed a bit in your thymectomy, if we go in and remove the remaining cells, there is a 10% chance of total remission” I’d do it .. it’s 18 years and I’m significantly better …but the weakness is uncomfortable and undesirable and again .. I’d probably do anything to rid myself of the symptoms of the MG.

Yoga is more than I'd expected

2010-05-27T12:54:00.002-05:00

Letter to my therapist (I've been on a month break, I see her next week)

I don't expect you to read this before I see you next Wednesday, but I almost emailed you last week and spent the whole week talking myself out of it. I thought if I continued to talk myself out of it, I might not even bring it up next week so, for accountability sake, I'm emailing it now. It also helps that I've just finished with my class and it's all fresh in my mind.
I've been interested in Yoga for years, but wasn't healthy enough to do so, so when I got the scholarship to do this AND the doctor's approval and I knew you were all for it, I went for it. As you said "in typical Peggikaye style."
I was excited and caught quite off guard by the pain relief ... that alone makes this journey worth it. If I can get 6 hours a week of pain free, it's golden!
Last week, when we got to the end, the meditative portion, I became almost tearful and had no idea why. Tuesday, I realized that the tearfulness started when Sunny said to 'let the earth support you' I think the feeling of being supported, not having to do it myself was a bit more than I'd expected.
an
I've been praying about this for a while, and was asking God to give me a scripture in particular to meditate on. I sat on my mat today and immediately a couple of scriptures popped into my mind that I usually don't think about in relation to me, but have used frequently when trying to encourage a friend Psalm 139:14 I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well; and Jerimiah 29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

I didn't expect that and as hard as I tried to think of some other verse to focus on, throughout the whole work out if I wasn't concentrating on breathing and poses ..those were the words running through my mind.

Tuesday, I made the drastic mistake of letting my perfectionism come through and wound up sooo very sore ... I didn't try to make accomodations, I tried to do what the instructor was doing ... part of it was frustration at knowing that there was a time in my life that my muscles and joints could do those things, part was frustration at my weight and my long time frustration with my legs being too long for my short body and my arms being too short. Not a good combo when you're trying to do certain things, add to the mix the weight getting in the way, I became competative with my teenage self and frustrated at my middle aged self ... and determined to do it 'right'. lesson learned.

So, today, I spoke with Sunny before class and she said she was somewhat surprised at what I could do, having never taken yoga before, but I was doing it, so she let me be. She promised to either verbally hint that the pose could be accomodated or to show me a beginning pose. My soreness disappeared as class went on. Which, hit me that I'm working so hard to be perfect that ... I usually wind up hurting myself in the process.
She's been talking about some of the philosophy of yoga ...today she talked about not being greedy. I can't remember the terms she used, but the way she phrased it included trying to gain skills that are unnecessary .. and at times may not be what God has planned for me. I may be over philosophizing there, but not sure. I'm going to think on that.

When we reached the meditative part of the class and as I started to relax the tears started up again. I tensed up in an attempt to stop them (which worked) and as I breathed to relax again, the tears started ... oddly enough, I've been so afraid that if I cried I'd be a bumbling mess, but it wasn't like that, it was simply tears rolling down the sides of my face. It struck me that since I was supposed to be perfectly still, I couldn't wipe them away. Tensed up again and the realization that I've spent years fighting tears ...and the energy it was taking to fight those tears ... suddenly seemed as wasteful as the oil spilling into the gulf. (crude analogy, but it was what came to mind.)

As I relaxed, the tears came again and Psalm 56:8 came to mind
You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.If I am hanging onto them …how can God collect them? So, I laid there with tears falling down my face and not able to particpate in the exercise if I fought them and unable to wipe them away to hide them … and so they rolled down my cheeks. They were gentle and easy and no one seemed the wiser as we packed up to go.

I’m a bit overwhelmed … I know you mentioned the yoga effecting emotions, but I’m not sure how, or why or if I even am supposed to understand it at this point. I got in the car and turned on my CD and a song came on called “Remember Surrender” (same CD as the one that has Less like Scars that I shared with you a while back)
Remember surrender
Remember the rest
Remember that weight lifting off of your chest
And realizing that it's not up to you and it never was
Remember surrender
Remember relief
Remember how tears rolled down both of your cheeks
As the warmth of a heavenly father came closing in

I want to do that again
Why can't I live there
And make my home
In sweet surrender
I want to do so much more than remember

Remember surrender
Remember peace
Remember how soundly you fell fast asleep
In the face of your troubles your future still shone like the morning sun
Remember surrender
Remember that sound
Of all of those voices dying down
But one who speaks clearly of helping and healing you deep within
I want to do that again
Why can't I live there
And make my home
In sweet surrender
I want to do so much more than remember
Remember
Oh surrender.

Anyway, those are the thoughts that have been going through my mind. I’m feeling a bit out of control because I have no idea where God is going to lead me with all of this and well, I kind of like knowing what I’m doing, why I’m doing it, where I’m going and how I’m going to get there.

See you Wednesday.
Peggikaye

How Great Thou Art, in Sign Language

2010-05-27T06:08:00.000-05:00

Ignore the messy kitchen. I signed this a couple of months ago (then couldn't get it to upload on my desk top computer, but this little laptop did it with no problem) for Medi Medi Mary (M3)

About half way through I get this funky expression on my face ... as I realized that I should have listened to the full version of the song before signing (for timing as well as lyrics) and maybe, just maybe practicing it a time or two ...and maybe brush the hair, a tad of make up and not in Pj's .... but by the time I realized all that I was half way done ..so I just kept going. I don't think I've signed this hymn before, even though it's one of my favorites.

Summer's Adventure

2010-05-13T00:58:00.002-05:00

In 1997 I asked my doctor if I could do yoga. I wore AFO's (Ankle Foot Orthotics, they are the brace that goes from just below the toe, to just below the knee with a hinge at the ankle). I had had many issues with tendonitis, joint injuries ... several of which required surgery ...3 knee surgeries and shoulder. Countless steroid shots.

I needed help to walk up the stairs and down the stairs resulted more often than not in a tumble down the stairs. A gallon of milk was as likely as not to land on the floor. I dislocated my shoulder by slapping a friend in the shoulder as part of the musical we were in.

My ankles would twist in a heart beat, every single joint would hyper extend. I was born with hypermobile joint syndrome, but the weakness of the myasthenia gravis intensified the joint instability.

My doctor said that yoga was a very bad idea. Weak muscles, that only get weaker with use and unstable joints ... yoga was not likely, at that time, to make me stronger and the flexabilty would worsen .. in my case a bad idea.

Here I am 12 years later with lupus having effected so many joints ...the hyper extention is no longer an issue for almost any joint. My thumb can ALMOST still touch my arm, where I used to be able to lay it flat on my arm. My knees don't hyper extend, neither does my ankle, shoulders toes or knees. A few have gotten tight beyond what's normal.

I can walk up and then down a flight of stairs (although there are times I still fall). I no longer wear leg braces. In short, I'm healthier than I was 12 years ago. So, I asked again about Yoga, same doctor thought it was a GREAT idea and gave me the go ahead.

I'm not a person who breaks the ice easy. I don't like going to strange places and if I try something new, I'm likely to need a friend to do it with me.

But this summer, my determination to do something new and different ...and healthy ...drove me to seek out a yoga class. I found one, signed up and went to my first session on Tuesday.

I had trouble with a few of the poses, but mostly because of my weight, not ability. I LOVED the session. When I got home I wrote the following to my therapist:

I just came from my first yoga class. I absolutely loved it! I was afraid ... something new ...new people ... expectations ...and then the ever present fear of rejection ..for whatever reason, but in this situation, specifically my weight.
I also was afraid I'd be fairly miserable at being physically able to do anything.
I had a chance to talk beforehand to the instructor when I signed up. She asked me about my health issues (she was familiar with most of them) and said she knew how to help me make the appropriate modifications.
She also said she'd let the class know that it would be a bit longer to allow time to help me.

I showed up, everyone was incredibly nice and I felt absolutely no judgment. Lots of encouragement and hints for 'survival'. We started and the extra time turned out to be unncessary. She didn't need to help me with much. After class she said that my own instincts to modify appropriately were remarkable. She also asked me "Are you SURE you've never taken yoga before? ever?"

That made me feel good. I could do a large part of what we did, some, my weight is an issue, but most I could do. Balance has always been a particularly bad issue for me, i've spent WEEKS and hours in PT on balance ...until they gave up and said that I just needed to be careful. I was able to do the balance pose, at least the beginning pose.

She told me that my phase one was 'beautiful' and after class I got a lot of encouragement from the other class members. One guy said I'd be teaching before too long (a bit of an exaggeration,but his intent was very kind!)

Dr. Holt said I could go up to 3 times a week, the package I bought was 12 classes in 100 days, so I figure 2 times a week to start probably good. I can take it next fall at TCC for free if my classes don't conflict with the yoga classes.

Peggikaye

It was amazing. I walked out of the class completely pain free for the first time in 15 years. The pain relief lasted for 3 hours and I'm still in less pain than I've been in a long time. I go again to my class tomorrow. I'm looking forward to this new adventure ... self discovery ... healthy ... mindfulness ...

poetic take on MG

2010-05-11T16:19:00.002-05:00

I have plans today.
I'm going to sweep and mop,
I'm going to put things away.

I have plans for tomorrow
The play I've been dying to see is playing
I'll shop for a dress or maybe I'll borrow.

I have plans for next week,
There is a parade down mainstreet,
That is ... if i don't get too weak.

I'd planned on cleaning,
but my arms were too tired,
My legs made sure on the wall I was leaning.

I'd planned to go and see a play,
But my eyes went double and eyelids droop,
So once again, home in bed I will stay.

This Myasthenic Monster crops up unwanted,
When chores or fun or adventure comes,
Whatever it says, I refuse to be daunted!

When Myasthenia roars, I will roar back,
I will push forward, and rest if need be,
Rest, regroup, till the muscles don't lack.

Disappointment has come once to often,
But I know that I'm stronger than the disease,
No matter the goal, my resolve won't soften.

I sometimes have to say no,for sure,
But as often as no, I will stand and succeed,
Push forward and back, but I will endure!

Amy Grant - Better Than A Hallelujah (Slideshow With Lyrics)

2010-05-08T01:07:00.000-05:00

God loves a lullaby
In a mothers tears in the dead of night
Better than a Hallelujah sometimes.
God loves the drunkards cry,
The soldiers plea not to let him die
Better than a Hallelujah sometimes.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah.

The woman holding on for life,
The dying man giving up the fight
Are better than a Hallelujah sometimes
The tears of shame for what's been done,
The silence when the words won't come
Find More lyrics at www.sweetslyrics.com
Are better than a Hallelujah sometimes.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah
Better than a church bell ringing,
Better than a choir singing out,singing out.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah

Better than a church bell ringing
better than a choir singin' loud
singin' loud
Repeat Chorus

JUNIOR

2010-05-07T22:40:00.002-05:00

The spring semester of 2010 is under my belt.
I took Intermediate Algebra
Adult Psychology
Child Psychology
and Women's Studies.

The intermediate algebra, like beginning algebra, took the wind out of me. My professor reminded me that most students in the class have A) had algebra before B) they haven't been out of school as long (although most out at least 5 years) and therefore for them, it's a review. I never took Algebra at all, so for me, this is new information. AND it's been so many years since I had pre algebra (almost 33 years now) and most people take it in high school and have a full year to take what I took in 1 semester .. and adding to that, I managed to accidently get into an 8 week class ...so I had 36 weeks worth of information jammed into 8 ... and for me, it's not a review.

That made me feel better ...that and the fact that it's not a credit class, therefore it has no bearing on my GPA no matter what (not A nor F) So, I'll repeat these classes as necessary.

In Adult Psych I ended the semester with an average of
99.6%
Child Psych
95.7%
Women's Studies
98%

Between yet another semester on the President's Honor Roll and my induction into Phi Theta Kappa Honor Society as well as elected to Vice President of Service in Phi Theta Kappa ... I feel pretty good about the semester!

I'm also, as of now, a Junior. I went back to school 4 semesters ago feeling very anxious ...could I do this? Was I physically capable.
I rarely let onto how much doubt I felt ... but I was absolutely terrified.
I wanted my support system to know my passion and support that, not support my fear ... so I kept my fear to myself.

But this semester it has finally dawned on me that not only do I NEED to do this, but I, in fact, CAN do this and more importantly, SHOULD do this!

MAYBE I CAN?

2010-04-28T18:16:00.003-05:00

A week from tomorrow I will have finished my last final for the semester. I will then have 63 hours ...which has me as a college Junior. When I started in August of 2008 I really had no idea if I could do this or not. I just knew I had to try.

I'm having odd feelings of "I can see the light at the end of the tunnel" and "oh my how far to go!"

But, in 5 semesters I should have my Bachelor's Degree. (probably a BS, but could be a BA, not sure at this point) Still have masters and Ph.D after that, but ...when I started I had a mere 23 hours and even getting to 60 hours seemed so far away ... I'm getting there ...slowly but surely!

April 19 .. then and now

2010-04-19T12:42:00.003-05:00

15 years ago I was taking my children to a homeschool event. My sister in law called me as I was putting my sons shoes on and said a bomb had gone off in the federal building. I thanked her for letting me know. That time in our country's history pipe bombs seemed to happen as often as they didn't. True terrorism wasn't even on our radar. Not here in the US. US property outside of the Continental US ...yes, but not the US proper.

At the picnic, my young son, not even 4 yet, started to get ansy. He was tired and in need of a nap but the picnic wasn't over for about 4 more hours. I left my oldest with a friend and ran home to put my son to bed. (hubby was home) I waited till I knew he'd fallen asleep, because hubby was taking a nap, too.

I turned on the TV and saw that all hell had broken loose in OKC. It was not a pipe bomb. I was stunned. I gathered myself and ran back to the picnic. No longer in the mood for fun, I told my friends of the true devastation of the bomb and went home. I spent the next 3 days glued to the TV.

I had this uneasy feeling that someone I knew was in the bombing. I kept telling my husband I wondered where everyone from Proclamation was. (I'd been in singing ministry called Proclamation. We'd scattered all over the country when it was over).
It was an odd thought. I had no reason to think I might know someone, but it was nagging at me. It turned out to be nagging at several from our group.

The friday after the bombing, (was a wednesday morning) CBS released the first 6 names of the victims who had been identified. As I started to climb over the toddler gate between living room and kitchen I heard the name
TRUDY RIGNEY.

I sprawled out across the kitchen floor and became somewhat hysterical. My husband could not get what happened out of me and called my mom. Mom finally got the words "Trudy Rigney died"

When I finally settled down, I looked up the one person I knew was still in town and told her what I'd heard. She did some quick research to verify and we started to call the members of Proclamation as we talked to one person who knew where someone else was ...calling information, calling colleges for alumni information ...we contacted many of our group. I heard over and over again "I had the uneasy feeling that we'd lost someone from Proclamation in that blast."

It has been 15 years since McVeigh took Trudy's life. Her son thrived. Became baptized and married (and if I remember right, became a father).

Trudy will never be forgotten by me. She was a tremendous young woman who had the kind of compassion that everyone needs to experience. She will always keep a place in my heart and I will miss her terribly.

Tonight I'm being inducted into the Phi Theta Kappa Honor Society. They will be paying tribute to Trudy ...a former president ..not only for PTK, but at the college and campus I'm on. It's fitting.

I feel a bit closer to her being able to share this with her. I wish she was here to see me inducted, but I know that she knows and is proud. Not as proud of me as I was of her ...that'd be impossible.

Trudy, you're always in my heart. I miss you, I always will.

No, Really, I asked you to take care of it for the fun of it...

2010-04-16T19:22:00.004-05:00

Well, intermediate algebra was an 8 week class, so I finished that a few weeks ago.
I did not take the final, because I knew that even if I could get a C in the class (very doubtful) I had in no way shape or form learned enough to move on to College algebra. Me, in an 8 week class wasn't the smartest move I ever made. However, I did get a good introduction to the material, and know what I need to know to retake it. So maybe it was better to be tortured for 8 weeks instead of 16 weeks.

The final is school wide and done on a computerized program. The program costs $84. I chose to not use the program that I'd spent $84 on, and save it for my retake. It made no sense to use the $84 for a final for a class I needed to retake. (There was also my instructors determination to give me the grade my work effort gave, which would have been an A, but without passing the final with at least 50% the most he could give was a C. So he planned on giving me a C. I kept telling him that to do that would mean financial aid would not allow me to retake the class.) My instructor either would not, or could not see my delimma. I get that he was trying to be nice, and helpful, but he was really complicating things.

About 10 days ago, I recieved notice from the school. I was being billed for $700 and until they got the $700 they were blocking my records. This meant I could nto register for next year and I could not get my transcripts to complete my application to NSU. I had no idea why they were billing me for $700. Since I'd gotten full financial aid, there was nothing that hadn't been covered.

I go in and find out that the algebra instructor had put my status in as a WNA ...Withrawl Never Attended. This meant Financial Aide wanted their $700 back for the class I never took that they paid for. Only, I DID take it. I emailed the instructor and he waited till today to get back to me.
His reasoning is that a withdrawl is better on the transcript than an F ... yeah, if you're not on financial aide probation for having dropped too many classes in your
20's and if you drop a single class you will loose all financial aide until the year 2099 (yes, that's what they've told me). An F on a 'developmental class' or zero level class has no bearing on grades. None. An A on a developmental class also has no bearing on grades. They are zero credit classes and while they appear on transcripts, they do not in anyway shape or form effect the GPA. An F shows that I took the class. I DID attend the class, I just didn't PASS the class.

So, he emails me back and says that it's April 16, and do I really still need him to change this. Um, I sent you an email YESTERDAY asking for you to please address this. Nothing has happened int he last 24 hours to change that.

Anyway ... hopefully that will be taken care of soon so I can get into the good intermediate algebra class before it fills. If I wind up with a cruddy instructor because of this, I'm going to be less than pleased!

This semester I took an Online Adult Psych class. A women's Studies class and a child psych class and the 8 week algebra class. Today, I sent in my final essay for Adult Psych. This leaves me with just 6 hours a week. Women's studies and Child Psych. Which is nice because both have me with quite the work load.
Although, Tuesday I will turn in one essay and give a presentation and then only 2 tests and a major paper left.

Last semester I was in class 18 hours a week (for 13 hours credit) and this semester I'm in all of 6. Odd.

I do not like going just on Tuesdays and thursdays. I've learned I prefer the rhythm of the M-F.

For almost 3 weeks now I have been dealing with a severe headache. I'm getting tired of it ... my patience for my health issues are wearing thin. I guess somehow I thought if I went back to school, that would be the cure for what ails me. Not sure how I came to that conclusion.

The year Tuesday, 2010

2010-04-09T07:57:00.004-05:00

Tuesday is a day I'm not ever wanting to repeat.

I was sitting in my Women's Studies class, watching a very funny routine by Whoopi Goldberg about how women and their communication (about womanly things) had changed over the last 50 years. Teresa and I were laughing, sometimes so hard it was hard to breathe.
Suddenly, a classmate sitting in front of us turned her phone to me and showed me a text. Wilma Mankiller had past away.
I learned that her influence on me was greater than I'd thought and that my tear ducts not only still function but they can function in front of people. (I don't cry often, and rarely ever let anyone see me cry) I left the room to compose myself and came back feeling stunned and somewhat alone. My role model had just died.
There are supposed to be some existing pictures of me with her. I'm hoping the person who told me will follow through and send them to me. (I met her a handful of times)

I left class and went onto child psych. Somewhat subdued, along with my classmates that take both classes. We'd just paid tribute to her a month ago (today).

In Child Psych, the professor dropped a bomb on us. Extensive plagerizing. While I didn't plagerize, (as a writer, that would never happen! I've been plagerized and I know how it feels!) her definition of plagerism had me conscerned. I had a quote in my paper that was in quotation marks because it was a commonly used phrase ... however, not being a 20 year old, I should have given credit to one of them. Most people over 40 are well aware that Hillary Clinton first said "It takes a Village." I'm well over 40 so I have no excuse.

Long story short, after a sleepless night, a conversation with instructor and she did not consider what I did plagerizing. I was safe. Next time she said, use 'x' instead of "X" for catch phrases or at the very least put "(from unknown origin)".

Left school to go to my sons IEP. Anyone following this blog will know how difficult those meetings have always been for my family. (IEP is the annual meeting between families of children with special needs and the teachers and administrators responsible for giving him special ed services.)

For years, I've struggled with Benjamin's special education services. Whle this school district is significantly better than the previous, it is still falling far short of what is needed. (one teacher flat out said he would not make accomodations for him, and then gave him a hard time in class for not passing. Going so far as to one day saying "we have only one F on the test and we all know who that is." (um what happened to not discussing special ed students with others not a part of his team?) And no, as far as I know there were no consequences for this mans statements.

They've never given him appropriate services and I've tried to walk the tightrope between doing what is necessary to get my son the most I can without causing them to hate me. (so they did not take it out on my son.) When the doctors told us that he should be in special education classes, he was not quite 3 years old. We took him in for the evaulation and they said "no, he's just fine" and sent us out the door. He wasn't three yet, so we let it go. The next summer, we did the same. They again said "nope." Docs said "yes!" and we took them, successfully, to due process. Again,t he next year they did the same and back to due process we went. The next year, they did the same and this time we went to arbitration. Abitrator told us all that he was to be enrolled into Head Starts Accomodated Services at school expense.
The next year ... OASIS in the dangerous desert that is Public Schools Special Education Services and he was accepted to the highly successful The Little Light House.
The Little Light House is a non profit, special education, Christian school that is no cost whatsoever to the parents. At this school he recieved his OT,PT and speech therapy. So not only was this a break from the public school battle, but for a year, we had to take him to school. Not to school AND PT AND OT AND Speech. Support for the parents, education for the children, services for the children lead to a very safe place. Unfortunately, they only take birth to age 6 and he was 5, would be 6 during the school year. He'd only be elligible for 1 year.

That was ok, because I thought he'd be accepted for Special Education services the following year. (TLLH has such a reputation, schools RARELY go against the programs recommendations. However, the district we were in, made the exception on a regular basis) TLLH could have been his kindergarten and we couple place him into first grade or we could use it as pre k and place him in K. We didn't trust our district to provide appropriate services (any wonder why?) and chose kindergarten to give him the best chance possible. I often wonder if the battle would have been less if we'd place him in first grade.

Long story short, we didnt' get an IEP until 2nd grade. Even then, the placement was wrong and not enough or appropriate services. They were only doing it because I'd gotten fed up and called a congressman who ordered the special ed services to be audited. We have been fighting, to a lesser degree ever since. They've always tried to prove to me why he was just fine (he's delightful was their best excuse. Um, so you're going to remove every delightful child from special education? This is SpEd not education for the emotionally disturbed!
They have made me point out all his deficits, while they tell me what a terrific child I have. It always frustrated me and caused great pain to be put in the position of being the one to tell them what is wrong with my child. NO mother should have to be the one pointing out their childs faults to the school!
So, Tuesday, they tell me what's wrong, and what's right and place him with appropriate services. I learned something ... being told your childs faults really isn't easier than being the one to tell them. (I still firmly believe no mother should be placed in that position)
Benjamin however, took it great. Listened, took notes and plans on using what he learned to help him improve.

I get home and I'm sitting on the computer, reading blogs and the doorbell rings. It is the police wanting to know if my sons best friend is here. He was. His sister had called the police to do a wellness check. Clinton, who has a hard time with the police because he watched them TWICE take his father away, was less than thrilled. He also didn't feel that telling his sister "I'm tired of all this mess" was worthy of a suicide prevention call.

All of that took place between 12 noon and 5:30 pm.

Thank you

2010-04-06T23:11:00.004-05:00

20.5 years ago, my life changed. In one fell swoop I became a mom and a chronically ill patient in the same day. It took 2.5 years to get the diagnosis of Myasthenia Gravis.
My neurologist suggested I contact the MG Foundation for support. I did and then a year or two later was asked to join the board. I did. I particpated in fund raisers, support groups and other aspects.
I served for 3 years on the board.

During one of those years we had a fundraiser ..a fashion show and the guest speaker was a dynamic woman who, herself, had Myasthenia Gravis.

I sat in awe of her. I was still incredibly ill and had as many days as not that I was either unable to get up, or needed assistance in getting dressed. I could not drive. (Vision and what is hardest for people to understand, my leg was not strong enough to get the gas pedal enough pressure to go beyond 25 mph.)

She had MG, she was not in remission, she *had* been as sick as I was and yet, here she was speaking to the people supporting the MG foundation, patients, family, friends and media ... a chronically ill person and the first female chief of the cherokee nation.

Wilma Mankiller.

She spoke that day with confidence that while MG is difficult, it is not impossible to live with. It is something that is better now than it was in the 60's (and even better now 15 or so years later) and that she had hope for the future in MG care. She spoke of her role as Chief and what it meant to be a woman doing that job ..and a woman with health issues doing that job.

It all felt so undoable to me. I couldn't imagine ever feeling better. But I was determined to live the best life I could with what I had.

As the years went by, and the medications started to work, I began to understand her drive, her abilities and her passion for life.

My admiration of her grew and grew.

In the meantime, Wilma revitalized the Cherokee nation. Initiating projects like literacy and historical preservations. She was an outspoken (in a good way) advocate for women every where of every race, belief system and socioeconomic status.

This semester I picked a coarse in women's studies. For International Women's Day we did an awareness campaign. Our class had display tables of important women in the history of women's rights. I chose Wilma Mankiller for our group.

A week before the Awareness day, it was announced that Wilma had pancratic cancer. A direct result of the medications she has taken for Myasthenia Gravis (same drugs she needed to take after a kidney transplant, kidney disease being one of the many health issues she fought).

Today, sitting in class, watching a video a classmate turned her cell phone to me. Wilma Mankiller had passed away from pancreatic cancer at the age of 64.

Wilma, may you rest in peace and thank you for the influence in my life and the role model that you were to me. It is not a small thing that because of you, I knew I could do more despite MG.

Easter 2010 Easter 1974

2010-04-04T21:42:00.001-05:00

beading

2010-04-04T00:31:00.001-05:00

I was looking for a craft I could get into and do succesfully. I turned to beading. I have absolutely fallen in love with it!!

Mindfulness and Self Care

2010-03-21T16:45:00.003-05:00

My therapist is good. Really good. She's managed to get me further toward recovery than either previous therapist. Oddly enough I felt more closely connected, emotionally, than with her.

Two things she is always talking to me about is Mindfulness and Self Care.

I've not done very well with wrapping my brain around those concepts. In the last 24 hours I've had 2 conversations where I saw people struggling and realized the hints given to me would be of help to them. In explaining it to them .. a switch was clicked in my brain. I got it! (guess that's why the say teachers tend to learn more than students?)

Mindfulness ..keeping your mind in the here and now. What is in front of you. Mindfulness is being researched a lot these days. UCLA Mindful Awareness Research Center has much to say about Mindfulness.

What is Mindful Awareness?
Mindful Awareness - the moment-by-moment process of actively attending to, observing and drawing inferences from what one experiences. Mindful Awareness (also known as mindfulness) is an ancient concept with over 2,500 years of history and development that has recently been brought into health settings and has shown to have a powerful role on overall health promotion and healing for a variety of physical illnesses including cancer, heart disease, arthritis, auto-immune disorders, chronic pain, depression, anxiety and obsessive-compulsive disorder.

My therapist has given me a few exercises on it but it wasn't until today, explaining it to a friend just what it's meant. How to do it. I was reaching for a way to explain it, realized I needed to find something she could relate to ..ironically, it was also something *I* could relate to and it 'clicked' for me.

Coffee ... she and I both love coffee.
So, I told her to

Pick up the coffee cup.
Observe the coolness of the empty ceramic. The smoothness (if it is in fact smooth) of the cup, the texture, how heavy it is, what it FEELS like in the hand.
Fill the cup with the coffee. Notice the sound of the liquid pouring into the cup.
Pick up the mug, now feel the changes in the warmth of the mug. It's warmth escaping the mug to your hand, the steam warming your face.
Smell the coffee it's rich brew. What color is it? Dark, medium or maybe what my husband refers to as "newspaper coffee" (so weak you can read a newspaper through it)
Take a small taste (yes, even if you don't drink it black. Or maybe, especially if you don't drink it black)
Feel the liquid as it makes it's way down your throat
What muscles are used?
What does the bitterness taste like, pleasant? Unpleasant?
Aftertaste?

then go ahead and flavor the coffee with whatever you use to flavor it. Pay attention to the sound of the spoon in the cup as you stir it in.

Then taste it, what makes it different than black. Feel it warm your mouth and your throat as it makes its way into the stomach.

Breathe deep while doing all this ... Breathing in to the count of 4, holding for 4 and breathing out for the count of 8.

Paying attention to each step, each sensation (involving all of your senses) keeps you in the here and now. Not worried about if your child got off the bus with all their homework. What is for dinner 12 hours from now? Did I get everything done on yesterday's to do list? How can I possibly do everything on today's to do list?

For that few minutes ... you're there with a cup of coffee and nothing else matters.

It's calming
It's healing for the mind
It's refreshing
It's renewing.

Try it ... you'll be pleased with the result.
If you find yourself in the muddle of day to day worries or in a crisis ... you'll find that participating in a few minutes of mindfulness ... a few times a week ...or a day ... will bring peace.

Before The Morning ~ Josh Wilson

2010-03-17T12:49:00.001-05:00

Do you wonder why you have to
Feel the things that hurt you
If there’s a God who loves you where is He now

Maybe there are things you can’t see
And all those things are happening
To bring a better ending

Someday somehow you’ll see you’ll see

Would you dare would you dare to believe
That you still have a reason to sing
Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming
So hold on you gotta wait for the light
Press on and just fight the good fight
Cause the pain that you’ve been feeling
It’s just the dark before the morning

My friend you know how this all ends
You know where you’re going
You just don’t know how you’ll get there
So say a prayer

And hold on cause there’s good for those who love God
But life is not a snapshot
It might take a little time but you’ll see the bigger picture

Once you feel the weight of glory
All your pain will fade to memory

It’s just the hurt before the healing
Oh the pain that you’ve been feeling
It’s just the dark before the morning

Me Poster

2010-03-12T20:02:00.001-06:00

Made this for therapy. Monday, we begin talking about sadness ... and the begin the process of trauma therapy. If you've read my blog for any length of time you know this is long over due. (and probably assumed I'd started it long ago ..but I didn't ..and now circumstances have pushed me to finally doing something about it)

3x + 2y = CRAZY

2010-02-28T19:22:00.002-06:00

My 8 week algebra class is over. I got a 61%. Which, is significantly higher than the 45% I got my first time through Beginning Algebra.

My instructor reminded me that most people had this in high school. Very few in college didn't have it at all. So for them, it's a second time around, re introduction to skills they'd had but forgotten or never quite understood the first time. The fact that I never had it, and I'm trying to learn it at my current stage in life makes it harder. Taking an 8 week class probably didn't help ... most students get this in high school ... in 36 weeks. I'm taking it in collge, which is 16 weeks per semester and I took this one on fast track, 8 weeks. So I tried to absorb a full school years worth of info in just 8 weeks.

He suggested that I
memorize the formula's
memorize what a problem looks like that needs that particular formula
and memorize the vocabulary.
(like when the test asked me to rationalize a problem and I went blank because I had no clue what rationalize meant.)

He also said that if I get it down, college algebra wont' be that hard because while it is increasing in difficulty, it has very few new principals ... just new ways to use the ones you know.
(we'll see)

The nice thing about the 8 week is I get so confused, it just makes me more confused. This way it was all introduced to me and I know what I need to know ...and the confusion/frustration was only an 8 week process.

I plan on continuing to keep my schedule for homework. I'll just work on the principals that he told me to in the time that I was working on actual homework/studing for the class.

Eyes Open, Heart Broken

2010-02-24T15:35:00.003-06:00

I've posted about my sons issues ...over and over again.

I've been aware of what his problems are almost from birth.

But I'm not sure I ever SAW it.

I was sitting in the library today, with someone attempting to tutor me in algebra.

I was on the verge of tears ... I was worn out ...tired ... and overwhelmed.

As we were discussing something, I don't know what ... it hit me .. this feeling that Algebra gives me ...it's the only subject that can reduce me to a pile of tears ... it is only in working with algebra that I feel
stupid
confused
unprepared
unable
brainless
half witted
simple
slow
dull
dumb

I could go on ..and yes, I do understand, intellectually that those adjectives do not apply to me ... most of them anyway (no one can deny that I'm unprepared for this or that I'm confused ...). I know I'm not stupid, dumb or brainless but that doesn't change how I feel when I'm sitting in a class full of people who are GETTING IT and everything might as well be taking place in French for all I understand. (I might understand more in French than Algebriac!)

It hit me ...my son has an IQ of 80, he has auditory and visual processing disorder, OCD and Tourette's Syndrome ...
Federal laws require students to work at CHRONILOGICAL Grade level rather than FUNCTIONAL grade level. He's working on 11th grade work with a 5th grade reading level. Take a 10 year old, throw them into school with Juniors and watch them succeed ...not!

This is how he feels, every minute of every school day ..and has for his whole school career! (which started at age 3 and he's now 18)

Wow ... while this will probably help me when I get to my degree and work with kids with issues ... I get it ... but what does it do for me as a mom who can't seem to help her son ...

I get it, my eyes are open ...but it breaks my heart that things are this hard!

Pefection's Secret Plans

2010-02-15T13:39:00.002-06:00

By Peggikaye Eagler

Perfection comes in bright shiny clothes,
“Effortless” paths to my lofty goals.
Reminding me success with in an arm’s length,
Fear is subtle but it’s the true strength,
Ever whispering promises of delight,
Contradicting failures true plight.
Take my advice, it cajoles me often,
It keeps my heart from learning to soften,
Ominous demands, grow greater with time
Never knowing I’ve been trapped by its slime.
Destruction comes more subtly dressed,
Entering quietly whispering “no rest”
Side by Side with Perfection performs
Truth is hidden about my life’s real norms.
Ruthless as Perfection, but simply more deadly.
Unwilling to let go of its power,
Convincing me I must obey or be a coward.
Tip toeing around the issues at hand,
Insisting I keep things buried in sand.
Over and over it reminds me the goal
Never give up or you’ve lost your soul.
Breaking free, it’s harder than you’d think
Recognizing the twins, it’s you they’ll sink.
Amazingly there is an escape from their plan.
Knowing the truth about their stories to fail,
In no way shape or form will loss lock me in jail.
No laws require me to bind with their contract,
Growth, kindness love releases me to interact.
Finally, my eyes and heart start to bloom,
Relearning skills to heal hidden doom.
Every time Perfection takes hold
Destruction follows, making life cold.
Breaking loose away from their grip,
Free and healthy brings a lively new trip.

© Peggikaye Eagler

worst day of the year.

2010-02-05T01:52:00.002-06:00

First, I want to start off by offering my condolances to one of my dearest friends. We went to church together for 5 years and barely, if ever, spoke. We wound up in a class together and got to know each other. We still refer to it as "THAT class" .. it was a good class, but it was an incredibly painful past as we talked about how we got to be who we were.

Wanda and I learned that for every one thing that we did not have in common, we had three that we did.

I don't see her as often as I'd like. Since I left the church, it's required real effort to keep the relationship going ...but the heart of it, is there, will always be there.

She is a mother ... and her youngest, Chris has had many challenges ... agoraphobia ... severe agoraphobia at that. I adored Chris ... he was delightful, funny and rather precious.

A couple of years ago, we had an ice storm. Much of Oklahoma suffered greatly. We, like most of the state, lost electricity. Within a couple of days, our cell phones died ... and we were left without ability to communicate with family and friends.
Her son, her agoraphobic son ... had Wanda bring him to check on us, so that he could see with his own eyes that we were ok. It was a delightful visit ... one I will never forget.

A week ago, Chris passed away ...at 27 years old. A cold, pneumonia and septicemia. Taken too young too soon ...with too much in front of him.

My heart breaks for her ...
Wanda, you're so very precious to me ..and as RS said today ... you're so easy to love.
Please keep her in your prayers and if you would, stop by her blog to let her know she's being covered in prayers.

It's February 5 (2 am) and once again, I'm looking at the calendar anxious for this day to be gone ...31 years ago today, I found my step fathers body after he committed suicide.

I can't say it's gotten better over the years, but the grief has changed.

I loved him so ... so very much. I don't think I'll ever be able to say that all things worked out ... nothing in my life is better off without him. He'd only have enriched every good experience and made the bad ones just a bit more bearable.

Daddy, Chris ... we're anxiously awaiting the day when we get to see your smiles and hear your laughter again. You are loved, will always be loved and treasured. Thank you both, for the memories.

Opening up

2010-02-03T20:21:00.001-06:00

I closed my blog, making it a permission only blog for about a year and a half. I wanted a forum to write, semi privately, about some issues. I found myself not writing about those issues, and not writing much at all. I decided to open it back up, maybe I'll keep up better with it as an open blog.

A New Semester

2010-01-13T01:18:00.002-06:00

With only intermediate algebra and college algebra left to go for my basics, that means, I'm primarily doing my 'degree focused' course work. This semester I'm taking Intermediate Algebra, Child Psychology, Adult Psychology and Women's studies.

I'm really excited about the Women's Studies class. When I was told there might not be one because of lack of enrollment, I went into recruitment mode and there are about 20 people (normal is about 8 for this class!!) I know that 6 of them are people I etheir cajolled or begged or pleaded to take. (ok, so a couple I just had to mention, but a couple I really drove them nuts with "you're taking it aren't you?"

My hair is ever evolving ... it's short still and red still but it changes ...

I'll try to get a post up tomorrow (ok, later today)

Christmas 2009

2009-12-26T14:39:00.001-06:00

Butternut Squash Soup (homemade)

Not the best Christmas ... 4th blizzard in states history made it a pretty one, that's for sure.

2009-11-26T15:29:00.002-06:00

It's Thanksgiving, a day that is traditionally set apart for being thankful for all that you have.

What is often over looked is the amount of depression that often accompanies the holidays.

I'm thinking that I know at least part of the problem is the lack of acceptance for anyone who isn't over the top bubbling with enthusiasm for their golden lives.

Yes, that is a tad sarcastic ...but that's how i'm feeling.
I'm not posting this so that I can get "I'm sorry " or encouragment ... I know that few people read this blog ...and few post. I guess I'm writing it in a semi functional/semi public forum so I will at least 'feel' like I got out what I wanted to say without actually drawing attention to myself.

This morning, on Facebook, I posted, as millions did, the things I'm grateful for.
Within minutes I got a private message from someone ...
"You know, you have so much, and there are those with so little ... you should be thanking God that you're healthy, that you've got the things you've got ...you left off so much. You should be ashamed of yourself"

Bowl me over!
EXCUSE ME? Now, if this was someone I'd met on line, I could excuse it. If this was one of my friends from the singing group I was in ... I'd excuse it. One of the 60 friends from high school that are on my page ... I'd excuse it.
But it wasn't. It was from someone currently in my life ... I attended church with them for 10 years. I sat near their family week in and week out ... and before I had time to process this ... 3 more messages with similar messages came through. All from people related to the first. One of them, I'd spent 8 of those 10 years working with him in the music ministry.

Now, granted, I don't go around wearing my health on my sleeve, but neither do I keep it a secret. If I can't do something, I excuse myself apologizing that my health won't allow me to participate.

In the 10 years that I was in the church I was in the hospital 13 times, 8 of them for surgery. Yeah, that's healthy!

I've got so much??? While I've made it a point to raise my children with the mentality of being thankful for what you have ...and living the best life possible ..and I certainly don't wear my poverty on my sleeve, it is far more hidden than my health ...but come on! I got a house through Habitat for Humanity! People who get houses from them do not have 'so much' they are not wealthy and they are usually in pretty strict financial straits ... Some almost reach, but not quite, comfortable. Most, are lacking. WE fall below the poverty level. Always have. We make ends meet because we live within our means (which means our children go without and our clothing is bought at garage sales and second hand stores!)

This year, I'm accutely aware of the fact that my family is not speaking. My parents and I are estranged as is my sister and I. The only family that is talking to me is my niece. She has chosen to spend the day with her boyfriend and the family that they live with. So I have my sons and my husband ...that's it. It is very clear that my family has been blown to shreds ... I wouldn't change a thing about why they're not talking to me .... but it doesn't hurt any less.

This year, more than any other, I seem to be aware of what isn't in my life ... maybe it's the working in therapy on really experiencing emotions. Maybe I've given myself permission to be sad ...

My son has significant issues ...and always will.
My health is fragile at best.
While I'm incredibly grateful for the fact that my husband is still alive, in the back of my mind it keeps nagging at me ...how many more holidays do we have? When will the next event like 2.5 years ago happen ...and will that one take him from me?
My family (extended) no longer exists ... no one is talking to me because I chose to protect my niece. It was the right thing to do ... but it cost me my family.

The family that she lives with has gone on and on about how hard it has been on her ...after all ... she had to cut off ties with her parents ... they go to extremes to make sure that she is not lacking for anything ... but they seem to have forgotten one thing while they remind me of everything that she gave up ... I gave up my parents as well ...and my sister and my nephews and niece ... it wasn't JUST her that gave up the family.

I'm hurting this Thanksgiving ... I'm not used to feeling hurt ... I'm used to ignoring it and moving on. I'm guessing it's a good thing that I'm acknowleging the pain ... but it's less than pleasant to do so ...and then to have people have the NERVE to tell me what to be grateful for ... who do they think they are?

Why I'm working so hard.

2009-11-08T18:27:00.002-06:00

A year and a half ago, I had a long, drawn out conversation with the children's minister at our church. I was unable to convince her that the children with special needs were not getting their basic needs met, much less spiritual or ministry to the family. She simply would not believe that they were not meeting all the needs. (this same minister had done an incredible job with my children going through her program. So when I stepped down from worship ministry to work with the kids, I was quite alarmed at the changes and the lack of patience, kindness and basic respect for these children and their families!)

She insisted that all was being done and they were being treated appropriately, the families were being ministered to, not judged. (then why were all the families of special needs children coming to me in tears begging for help?!? I did not base my conversation with her soley on the parents response (but in part) but in my own observation of how the CHILDREN and PARENTS were being treated by both staff and volunteers ... and the realization that if we'd been treated that way we'd have been out of there! 18 months later, of the 8 children with special needs, from 7 families ... 1 remains. The families left the church.

I got off the phone with her, and turned to my husband, rather frustrated and said "I'm going to back to school to become a child psychologist so I can do this right!" And 2 days later I was enrolled at my school and had applied for financial aide.

This week, the 1 mom remaining called me, she was heart broken over the trouble with school. A lack of services (read back to more than 3 years ago in this blog and you'll see several posts of issues with special education services in the district she lived in. Our primary reason for moving where we did!!) A lack of help/support in the church and finger pointing that if she'd be a better mother she'd have a better kid. I got that from the school, frequently, I did not ever get that from the church. It saddens me that her support system consists of her husband, her parents, and myself (and I'm not at that church anymore .. this conversation in April was the beginning of the end of a 10 year membership. I'd loved the church so much, it took me 3 months to actually leave after we decided to go)

As I helped her to put the pieces together for the IEP meeting in the morning, I was charged up anew over my mission in school. (I had a test in Psychology the next morning and was floundering with the information)

Then, this weekend a conversation with someone else over behavioral issues with the teenager in the home. The realization that there was more going on than teenager issues, and that help was needed left me axious to be able to do more ..and glad I was doing more! I also had some helpful things that came directly from the classes I've taken or am taking that she can put into place while she tries to get professional help.

Sometimes I get lost in the 'need' to get straight A's and forget that the reason I want A's is so that I've learned all that I can out of the class ...and be the best I can be for the families I will serve.

The only question I have is ...will my heart be able to take it when I see the broken hearted parents?

For Wanda

2009-11-07T20:13:00.005-06:00

This is the me that you (Wanda) has always known ... with my niece in May 2009.

This is me in August of 2009 with my new hair color and my new teeth .... This is me in September of 2009 ..but the hair is as red as the picture above it, bad lighting you can't tell ... right now, it's a much deeper red. More of a copper than strawberry blonde.

Swine Flu Song

2009-11-01T16:48:00.001-06:00

this is hilarious ...now that it's come through my house ... it's even funnier

Monthly (?) Update

2009-10-12T13:03:00.002-05:00

I'm such a terrible blogger. I can't quite give up my blog, but I rarely post ... sigh.

I'm completely enjoying my Biology class (oddly enough) and not enjoying my Personality Theories class at all. I realized today that NSU requires an A in Personality Theories to be accepted to their masters program (glad I found that out now not later!) and they require a B in Abnormal Psychology ...other than that, they just ask for a 3.0 GPA.

I've got an A in Biology (I'm working my butt off there ...about 3 hours per night!) and a B in Personality Theories (and spending very little time on this class) As much as I'm enjoying my biology (and need to put that much time in it to get an A) I think I better switch my focus, be willing to accept a B in bio ...and get to work on my Pers. Theor. Class!!! o.0
It is so boring! The text is bad ...works faster than ambien to put me to sleep and the professor is a 1st semester prof who has never taught before ...laid back, unorganized and well ... easy to tone out (especially since half his lecture time is spent reading directly from the text book!)

I like my speech class ...we'll see if after next Tuesday I feel the same way when I give a 7 minute speech!

Just started my 8 week philosophy class. I think I'll enjoy it ... but the added 6 hours per week to my schedule could be a bit physically daunting ... I'll be in class M-S and Fridays I'm in Bio from 11-12 and philosophy from 6 pm to 9 pm. (the second class is S 9 am to noon)

I really have no time in my life for anything but books and class ....

Steep Learning Curve

2009-09-05T10:32:00.002-05:00

So, it's been almost a month since I got dentures. I still can't chew food with them. My gums are far too tender and painful.

In the not too distant past, I'd have used that as an excuse to skip meals. But, I made an agreement with my therapist that I'd move forward toward recovery despite of this challenge.

I certainly don't have a perfect record in eating ...but it's better than it's been in a very long time.

The process of the adjusting to dentures has taught me something. It's changed how I look at food ...and my relationship with food.

I have never been able to say "I like ..." or "yum ,this is good" Food is bad ...period and I tolerate some better than others.

However .. I don't know if it's the rebelliousness that I have or if it's just that I'm really moving toward healthy relationship with food ... but it's OK to say that I like certain foods. I miss certain food combinations.

It's also ok to really dislike something ... not all foods will fall into this category of 'tolerable if necessary'

Another thing I've learned, just this week ... kind of floored me.

I assume that people either don't like me, or at best tolerate me. Unless they specify otherwise.

My therapy homework this week consisted of looking for ways that I feel either particularly respected ... or disrespected.

There have been a couple of disrespected incidences ... but there have been a few respected! Which floored me. I'd have told you last Monday that I wouldn't find any of the latter.

The biggest of that was that I went to say hi to my former psych prof. She loved my 'new look' (teeth hair make up) and we talked for close to an hour. It was a great talk but she wound up *asking* me to take one of her classes next fall! She doesn't care which one, just that I'm in her class. I was floored!

Kind of felt like Sally Fields ...she likes me! she really likes me! I'm not just a person who took a couple of classes that she had to tolerate my presence in her class ... she liked me enough to want me in more.

Almost done w/make over ..still need a hair cut

2009-08-11T01:32:00.004-05:00

The new me ... back to make up ..after 20 years ... dyed my hair red ...and a new smile!

the old me ...dark teeth (although not chipping breaking yet) and dark hair)

new teeth

2009-08-08T04:49:00.006-05:00

The swelling in my face is making me look younger I think ...any hints on how to keep that? lol ...look at those nice straight white teeth!!!
As soon as I'm feeling better adn the Myasthenia isn't interfering with my ability to smile .... I'll have a new one taken

This shows how darkened and blackened my teeth erew, but the missing and chipped teeth weren't as evident.

one of the before's .... the dark spot is a tooth broke in half, filled in black. The front two teeth were all but black, but to lighten the mouth to see the chips and cracks the coloring had to improve.

Now my biggest hurdle ... convincing myself to rest ...my brain is saying "IT'S DONE ...time to get back to 100% !!!" My body is saying "um dear ...you've had significant surgery get your butt in bed and REST"

of hair and teeth

2009-08-04T00:39:00.004-05:00

Food is starting to taste like food again.

The dentist over the phone said that it was a very rare reaction to the extractions ...but made it sound like it was not unheard of.
When he saw me for the follow up he told me that it was totally impossible for the extraction, but judging by the look of my tongue ... it was a reaction to the thrush!! My tongue was still a bit swollen and he didn't particularly like the size of my taste buds. So he gave me an oral diflunac (sp?) and within a few days it started to dramatically improve!!

With this next procedure (thursday) I'll be given the diflunac as a preventative.
I pick up my teeth on Wednesday and have 16 teeth pulled and denturse put in on thursday.

My blog is private so I'll go aheaed and post this picture. I guess, if it were public I probably should write a rather strong anti bulimia post with the picture. It's not a great picture and the really bad teeth didn't show up in the light. This picture actually makes my teeth look not too bad ...which is bad considering they look really bad in the pic.

I'm looking forward to a 'real' smile where I don't feel like I'm wearing the badge of bulimia ...

Summer 2009

2009-07-15T18:19:00.002-05:00

So, it's clear into summer and I'm still not blogging much ... at all.

I've taken the summer off of school in order to get my teeth taken care of. The process is more difficult than I'd forseen and now see the wisdom in my family and my docs pushing me to just concentrate on dental and not go to summer school.

I had 10 teeth removed a couple of weeks ago and in a couple of weeks will have the remaining 16 teeth removed. (was already missing a tooth or two)
I go tomorrow to 'pick out' my dentures ..style and color. Never realized there was that much to the process!!

There has been a couple of unexpected issues with the process ... one ....with only having to consume liquids ... I increased my calories to the amount and timing the endocrinologist has been after me for 3 or 4 years to do ... and I lost 10 lbs! I still can't make sense of intake of double the calories and loose weight.

I started to introduce real food this week and have run into a big issue ...aside from the expected trouble that the eating disorder would cause .... I've ran into a super taste issue. EVERYTHING is too sweet, too salty, too garlicy, too ...you name it, if there is flavor, there is too much!! Everything tastes so over done I can barely eat! Even plain, unsweetened oatmeal was too sweet!! How do you get more bland than unsweetened oatmeal?

So, on top of being a bit overwhelmed by all that food ... that flavor is making it almost impossible to eat ...

I knew that I'd been having issues with the protein shakes and meal replacements being too sweet, but I thought it was just tooooo many sweet things in too short of amount of time. Nope, it's me.

I've done some research on dental procedures and tastes and all I find is a DECREASE of flavor not the opposite!

So .. interesting turn of events I didn't need .. it makes it even harder to eat than ever.

On the 6th I get the rest of the teeth removed, dentures and start school on the 17th.

I hope the next procedure goes more smoothly or starting school 11 days later will be a big challenge!!!

2009-07-07T02:02:00.001-05:00

I really hate it when I go looking for an old post ...and my blog won't load.

I guess after almost 5 years of blogging, it's getting full?

time passing

2009-05-27T01:30:00.002-05:00

So time has flown ...this last year has been a difficult one to say the least. The family drama, which I've kept off the blog.

I blocked my blog because of the family drama so that I could post my feelings about it. Then realized there is someone who reads it that I really need to explain what's happened. Since my phone doesn't dial long distance, and I didn't think reading it on the blog was appropriate ... I've left it off the blog.

I had my therapist uncerimoniously removed from me. (read back to post in April about being on a tightrope)

I had a doctor threaten me ...get back into therapy or find another doc.

So, I got back into therapy.

I left my beloved church of 11 years ...to have no one call and say "Is Don OK?" or a call that says "We'll miss you, but do what you need to do"

I knew I was leaving my church ... I did not know i'd lose my friends in the process.

I started school ...and struggled tremendously the first semester ..and got 4.0 the second.

My teeth continue to deteriorate ...the oral surgeon made it abundantly clear ... it was only bulimia that caused it. There is no medical condition or medication that caused it. I destroyed my teeth with builimia and bulimia alone.

I was diagnosed with gastroperesis ...a problem that often goes with diabetes, but can also becaused by builimia ... I don't have diabetes ...draw your conclusions.

the complications of the ED have been front and center ... and I've fought getting better.

But the realization that I'm 44 and need to have all my teeth taken out ... is a bit sobering.
I'm 44 and loosing all my teeth ...dentures at my age, at my own hand.

lots to ponder as May ends ... I'm moving toward recovery ..but I need to find out what exactly that means for me.
My therapist is concerned I see it as a destination, rather than a journey ... so I need to work on my mindset.
But it was either: recover or fully give into relapse and live that way.

i chose the moving forward ...

Therapy and blankets

2009-05-19T00:07:00.003-05:00

The two songs I've posted today were recommended to me by my therapist. Talking about healing ...real healing.

Therapy has gone a bit strange in the last few months. I have this brick wall up ... and getting it torn down again has proven harder than I thought. I guess loosing ground with one therapist, then having the other yanked out from under me, the psychiatrist loosing his license ... all of that had a bigger toll on me than I'd anticipated.

The sessions with L are stilted at best ... she isn't a therapist that is willing to just shoot the breeze for an hour ...

It's funny, last week she didn't think we'd made any progress and I saw a lot ...this week I felt like it was odd and she felt like we really made progress. I wonder if the two of us will ever be on the same page.

Honestly, when I started seeing her, I was eating dinner only. No snacks, no lunch, no breakfast ..and was pretty much determined to stay that way. When she said last week that she couldn't record that she'd gotten me anywhere with the eating disorder ... I reminded her of where I started with her and where I was ...eating breakfast most days, lunch almost every day and had even added almonds for a snack. That ... is a far cry from where I was!

My *WILLINGNESS* to be there ... no, that's not changed. A big part of me wants to go back 8 years to when it was ok to have an ED and participate fully in ED behaviors and it all be ok (in my mind it was, but I had to hide it because no one would understand)

In my journal (I shared this with her) I put that my ED was like a blanket with a toddler. Taking it away causes anger, anxiety and comes with great resistance.
The blankie is old, tattered, torn, full of holes, and worn thin. But the toddler doesn't care! To take it away is to take away the comfort that it offers.

But like a toddler with a worn out blankie, my arms and legs are getting tied up the holes. The blankie will no longer cover me, offer me warmth ... and has grown too small. It no longer serves the purpose it once did (to keep me thin, in control and some symbolance of percieved order). Yet, when someone tries to take it away, I dig in my heels and fight like hell to keep it a part of me. Determined that some day, some how it will work once again. It's grown too small, it is no longer effective except in allowing me some self comfort and denial that it actually works.

You can relax now - Shaina Noll- in the beauty of Nature

2009-05-19T00:03:00.001-05:00

How Could Anyone Ever Tell You by Shaina Noll

2009-05-19T00:02:00.001-05:00

Straight A's

2009-05-06T19:27:00.001-05:00

Peggikaye Eagler got STRAIGHT A's for the spring semester of 2009!!!!!!!!!!!

WOWOWOWOWOW

2009-04-28T21:36:00.002-05:00

Ok, it's been a long time since I've posted and this will be short. I've got a raging UTI and not feeling my best. Top that off, I fell down the last 4 steps on the stairs at school today.

I have, technically, one week left of school. However, I have no classes and my social psych final on monday.

The rest ... taken care of. My nutrition final was this past monday and ... tada! I don't have to take either the sociology OR the ALGEBRA final.

Why? because I have an A on the final! an A!! ME .. an A in algebra... I'm totally stunned ...
and thrilled ...

wish I could type more but ..my body needs to lay down

When The Saints - Sara Groves

2009-03-24T22:43:00.001-05:00

and when i'm weary and overwrought
with so many battles left unfought

Free To Be Me by: Francesca Battistelli

2009-03-20T14:30:00.001-05:00

Free To Be Me
Album: My Paper Heart
Artist: Francesca Battistelli

At twenty years of age I'm still looking for a dream
A war's already waged for my destiny
But You've already won the battle
And You've got great plans for me
Though I can’t always see

‘Cause I got a couple dents in my fender
Got a couple rips in my jeans
Try to fit the pieces together
But perfection is my enemy
On my own I'm so clumsy
But on Your shoulders I can see
I'm free to be me

When I was just a girl I thought I had it figured out
My life would turn out right, and I'd make it here somehow
But things don't always come that easy
And sometimes I would doubt

‘Cause I got a couple dents in my fender
Got a couple rips in my jeans
Try to fit the pieces together
But perfection is my enemy
On my own I'm so clumsy
But on Your shoulders I can see
I'm free to be me

And you’re free to be you

Sometimes I believe that I can do anything
Yet other times I think I've got nothing good to bring
But You look at my heart and You tell me
That I've got all You seek
And it’s easy to believe
Even though

‘Cause I got a couple dents in my fender
Got a couple rips in my jeans
Try to fit the pieces together
But perfection is my enemy
On my own I'm so clumsy
But on Your shoulders I can see
I'm free to be me

-Words and Music by: Francesca Battistelli

ARRESTED

2009-03-18T19:33:00.001-05:00

https://www.joinmda.org/brokenarrow2009/PearlsofanEagle

I NEED YOUR HELP!
I'm going behind bars for "GOOD"
PLEASE HELP BAIL ME OUT!
Your donation is my key to freedom!
Be proud of the fact that together we're providing help and hope to kids and adults served by MDA in our community. Thanks for making a difference!

For those that think one of these diseases will never touch me. Think again. If you know me, if you're a friend of me ... then you've been touched in some way by one of these 40 neuromuscular diseases. I cannot imagine how different my life would be without the research and services that the MDA has provided for those of us with Myasthenia Gravis. I know for sure, they have made a difference, both in my health, and my learning about the disease when I first got sick. PLEASE give to MDA so other families can benifit from their desperately needed services!

Time flies

2009-03-10T18:20:00.004-05:00

I went to a moderated blog so that I would feel more free in posting ...I thought it would get me back to blogging, that doesn't seem to be happening.

Spring break is next week.

During Spring break I will have a take home test, 2 reports and an oral report to write. Not to mention the fact that the week after spring break will come TWO tests. (psych and algebra ...and quite possibly ..sociology)

I can't stand my sociology class. It's one saving grace is that I *really* look forward to Algebra by the time it's over!! (back to back classes)
The professor could not be more boring if he tried ...well, yeah, I guess if he spoke in a mono tone, maybe.

My friend Teresa calls it 'bankclerk education' ... just depositing the information and assuming it gets to where it needs to go.
ARGH! NO student/professor interchange ... no professor interacting with class ...we sit there and listen to him spit out details with no *real* explination of what it means.
He gives us scenerio's occassionally, but they are obviously ones that *he* relates to, and not necessarily the ones that would best serve the situation (or ones that would pertain to our lives as students)

YAWN ..... Yawn ... the only thing that keeps me awake is his interminable habit of saying "OK?" at the end of EVERY sentence. I, out of sheer boredome one day counted the OK's with talleys ... 170 of them in a ONE HOUR LECTURE!!

I'm doing a book report on "Snow Flower and the Secret Fan" ...FACINATING book. If you get the chance, read it. I read it in less than 24 hours (including class and sleep!). Easy read, fast read and intriquing topic. (Chinese ... I think 17th century)

My therapist and I are making progress ...slow and steady. Although I realized this last week that ... well ...she's been seeing me for 6 months and is about to find out this is my second marriage. That seems like a major detail for me to have left out. Not quite sure how I'm going to justify that one! (the leaving it out of my history,not the marriage)

Yesterday we were discussing my over all stubborn streak that has been an inate part of me since infancy. Somewhat self destructive even as a tot ...and into elementary school. Being incredibly strong willed ...
she mused "and how does that translate to the therapy process?"

Um .... *you* have a lot of work to do?

She corrected me with a *we* have a lot to do.

*ahem*

checking in

2009-02-11T13:15:00.002-06:00

I've got a nutrition test on Friday. Sociology test on Thursday.

Not looking forward to either.

Doing great in Algebra. Who'd have thunk it!!

Have no idea when Social Psych test will be ...we're way behind ... should have been today, but it's after chapter 4 and we're still on Chapter 3.

She's having a rough time with this class. Today she threatened to lock the door. AFTER she asked 2 students to stop talking and one student to put his phone away and stop texting. About 5 or 6 students came in and out, one did it twice! (these all distracted me as well, so it's not like they did it quietly!) I wish I had an answer to give her. She's one of the most patient, kind instructors I've ever seen, at any level. For her to have lost patience ... I hope the students realize they crossed a line that never should have been crossed.

One student will not realize ...she'll blame it on the others. She was in our class last semester. I guarentee she doesn't see herself as one of the problems ..even though she was one of the talkers and got up and left and came back.

Oddly enough, today's subject matter was one of ...blaming others for our own actions.

Well this is a short post because I've got a therapy appt in a half hour!

hope everyone is fine.

Praise You In This Storm

2009-02-04T17:37:00.001-06:00

Praise You In This Storm"

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Something Beautiful By The Newsboys

2009-02-04T16:52:00.001-06:00

I wanna start it over
I wanna start again
I want a new beginning
One without an end
I feel it inside
Calling out to me

CHORUS
It's a voice that whispers my name
It's a kiss without any shame
Something beautiful(Yeah Yeah)
Like a song that stirs in my head
Singing love will take us where
Somethings beautiful

I've heard it in the silence
Seen it on a face
I've felt it in a long hour
Like a sweet embrace
I know this is true
It's calling out to me

REPEAT CHORUS

BRIDGE
It's the child on her wedding day
It's the daddy that gives her away
Something beautiful
When we laugh so hard we cry
Oh the love between you and I
Something beautiful

REPEAT CHORUS

REPEAT BRIDGE

Something beautiful

School ...

2009-02-03T17:31:00.002-06:00

Well ... last week we had an algebra homework assignment. Shocked myself by getting 100% correct.
Today we had an algebra test ... I begged him to 'look at it real quick' for me, since he was my professor last semester, he knew how much it meant.

He grinned and said "you missed parts of 4 ... it'll be in the 80's"

a B!!!

Pk got a B in algebra on a TEST!!!!!

Sociology ...ugh. It's been hard. He's been using Durkheim's research on suicide to explain Sociological research patterns.
Suicide
Suicide
Suicide
Suicide
Suicide ... I've heard the word so often you'd think I'd be desensitized to it ... I'm not. The anniversary of Daddy's death is Thursday. I guess I will always be bothered by suicide.

Nutrition ... geeps. Well, professor now knows my history. She figured it out. It does feel far less stressful to have her KNOW I've got an eating disorder than to be sitting in there feeling like a fraud.
I'm going to be in a bit of trouble when I show my newest assignment to the therapist tomorrow. The last 7 days of my dietary intake. I swear I thought I was doing better. When I started to see Leslie (therapist that got yanked from under me) in May of 2007, I told her I was eating about 800 calories a day. I am now seeing Lindsey and told her I'm doing significantly better. I guess that food is still a huge issue for me, because I've underestimated caloric intake ...dramatically.

Calorie Assessment
A close-up picture of the Calories consumed.
Profile Info
Personal: Peggikaye Female 44 yrs 5 ft 2 in *** lb
Day(s): 1/28/09, 1/29/09, 1/30/09, 1/31/09, 2/1/09, 2/2/09, 2/3/09
Activity Level: Low Active
Strive for an Active activity level.
Weight Lose: 2 lb per week
Best not to exceed 2 lbs per week.
BMI: **.*

Calories to maintain current weight
Calories to maintain current weight
2771
Calorie adjustment for weight change of 2 lb (per week)
-1000
Goal Calories
1771
Average Daily Intake & Expenditures
Average Intake
727
Calories For The Day
Goal
Intake
Assessment
Total Calories
1771
727
Below Goal
Carbohydrates (45-65% Calories)
796 to 1150
395
Below Goal
Protein (10-35% Calories)
177 to 620
156
Below Goal
Fat (20-35% Calories)
354 to 620
176
Below Goal
*********************************************
ok, so that's an average for a week. Maybe the 'malnutrition' the doctors keep hounding me about has less to do with gastroperisis and more to do with me than I thought.

Social Psychology loving my class. Same professor as developmental psych. She's very encouraging. I got to talk with her for about an hour after class on Monday. First, she said I'm definitely in the right career path (goal wise) and then we somehow came on the subject of my eating disorder (geesh, it's haunting me!)
She asked me a lot of questions, I think as an educator as much as interest in me myself.
But, we both agreed that it is something I've got to get a handle on ...
She made the remark that it must be making school far more difficult (both the energy wasting on it, avoiding food or any other such behavior) as well as not getting enough nutrtition to support the brain. Not to mention the continued damage possibly being done to my body. (ok, so she left off the word possibly)
We talked about it not being very practical for a psychologist to have such a difficult hold on oneself. It wouldn't look right if I passed out in front of a family I was trying to help. I agreed.

SSoooooo now my report on my last weeks food intake is my this weeks assignment. Maybe some of the reality of it will start taking hold.

Our Hope Endures by Natalie Grant

2009-01-22T16:18:00.001-06:00

definition of resiliancy

Classes

2009-01-21T14:20:00.002-06:00

Well, this semester is certainly going to be interesting. Taking the same psychology professor with the idea of "knowing what to expect" backfired! Her social psych class is far more detailed, and has more work than Dev. Psych. (I thought she was a passionate instructor about Developmental Psych ... however compared with her passion for Social Psych, she paled by comparisson. This, is a good thing)

My nutrition class is going to be difficult, both work wise and emotionally. I expected a class that was a biology based class on Nutrition (description of class gave me that idea, it's a biology course) However, this class is SO personalized. It does not seem to be about nutrition in general, however, but about MY nutritional habits, etc. Today, I skipped class deciding that I was not going to do the body fat analysis in front of the whole class. Just too personal of information and quite frankly, none of my classmates business!
I'm not quite sure that it's my professors business, nutrition class or not. She's not my medical team, my eating disorder treatment team, she is my PROFESSOR. Having my body fat/weight and other medical information is really quite intrusive.
All the nutrition classes at the school do it this way. It's too late for me to drop out without complications from financial aide.

My Sociology class is going to be quite the ride. zzzzzzzzzz wake me when it's over please!! Lecture only and no class discussion or interaction between students and professor. Top that off with 3/4 of what he says makes no sense (if I'd not read the book, I'd have NO idea what he was trying to get acrossed!) and then he says "OK?" at the end of every sentence! To keep myself focused (literally) I tag marked each and every OK on Tuesday's lecture ... 170 OK?'s in one hour!!! Seriously! That's the ones I caught! It did help me stay focused on what he was saying, because he's very easy to tone out.

He hit some buttons too ... first he says "NEVER ever generalize or use stereotypes"
Then he calls the class "kids"
He then informed the class that none of 'you kids' remember not having cell phones, microwaves and you don't even know what a cassette is!

Um ... dude ... (yes, I used dude because he's so young and drove me nuts) I remember when we got our first microwave, I remember black and white TV, and I was graduated from high school before I ever laid eyes on a VCR (beta!). Cell phones, no, not everyone has one, despite your comment that 'absolutely everybody these days have a cell phone' and please please please stop assuming that we are all the same, with the same memories and same desires ...there are 18 to at least 44 year olds (me) in the class and I know ages inbetween (my friend Teresa, age 32 is in the class with me) (by the way, we got our microwave the year Teresa was born, I was in junior high)

ARGH! And top it off, the BIGGEST event to effect american SOCIETY and especially politics in MY lifetime (born after Kennedy's assasination) happened yesterday and you (an african american professor) didn't even MENTION it

Ok ... then algebra, same class I did so poorly in last semester. Off to a good start so far, really am. Hopeful. Not nearly as stressed in class or doing homework ...

oddly enough, Algebra may prove to be my favorite class this semester, how twisted would that be?

looking back

2009-01-12T14:59:00.003-06:00

One of the things I've come to realize over the last several months (couple of years?) is that things aren't always what we percieve them to be at the time.

I'm the queen of denial .. I think that has been my survival for many a year (decade?) and for one reason or another, it doesn't work anymore. Along with the failure of denial for current time and place ... has come an enlightenment of past events in my life. A clarity of what I actually went through.

When I was first urged (read forced) to go into therapy by my primary care doc, the psychiatrist immediately diagnosed me with an eating disorder and post traumatic stress disorder. I was shocked as could be that they had the NERVE to diagnose the eating disorder! But totally confused at the Post Traumatic Stress Disorder!!

What? ME? WHY?

The second appointment, it was the first question out of my mouth ..what is this and why?

He looked at me like I'd asked him if he was human. (could you ask a more obvious question???) He took a couple of moments, took a couple of breaths, started to talk a couple of times but had to stop and then finally said "why do you think you Don't have it?"

I asked him "just what have I been through that has been so traumatic?"

He looked at me again like he was stunned. "Do you not think that finding your step father after he'd committed suicide was traumatic?"

"Oh"

I let the subject drop.

I'd been asked in my 'evaluation' about 'ALL TRAUMATIC EVENTS' ...but it probably took 5 years of therapy for them to come tumbling out.

It was about 3 or 4 months into it when something was mentioned about my 2 pregnancies. I said "3"
"Three? you have 2 sons"
"yes, but I lost a baby at 20 weeks, a girl"
Again with the stunned look.
"Peggikaye, that .. had to have been traumatic, do you really not realize how traumatized you've been?"

Time went on, and secrets slipped out, most of them traumas.

When I started therapy I told them I'd had a happy childhood, secure and balanced. I realize now that was my very rose colored glasses ...looking back in my denial because I didn't want to, or couldn't handle the truth.

The realization that ... I went to 12 schools between kindergarten and 12th grade ...not exactly secure.

Recently, I've been in contact with the step mother that I had from age 13 months to age 25. She put in that letter that I had one of the hardest, most traumatic lives that she could imagine. (HUH??? WHAT?) She admired how strong I was, and that she wasn't surprised that I was seeking the truth now, because that is who I was as a child ...always the truth seeker.

I did come to the realization about a year and a half ago that my childhood was far more difficult than I'd let myself believe. I really don't think I knew why. Recently, I think I've figured out that I thought ..if I admited it was tough while my step father was alive ...did that make him a bad dad. (answer, no) But somehow, I had to paint, in my mind, that life with Daddy was all roses and picnics ... when in fact there was a reason I see him as my refuge and safety ...because ... I often needed to take refuge and safety in a world that was often chaotic, and empty and cruel.

It has painted a lot of who I am. But if I don't get at the truth, the real truth, then I don't think I can continue growing into who I want to be.

I wrote a poem once, I've put in on here many times ..but it's so true ..will I ever become who I am supposed to be if I'm hiding behind a mask who is not me? (paraphrased)

Sara Groves - Less Like Scars

2009-01-09T23:27:00.001-06:00

It's been a hard year
But I'm climbing out of the rubble
These lessons are hard
Healing changes are subtle
But every day it's
Less like tearing, more like building
Less like captive, more like willing
Less like breakdown, more like surrender
Less like haunting, more like remember
And I feel you here
And you're picking up the pieces
Forever faithful
It seemed out of my hands, a bad situation
But you are able
And in your hands the pain and hurt
Look less like scars and more like
Character
Less like a prison, more like my room
It's less like a casket, more like a womb
Less like dying, more like transcending
Less like fear, less like an ending
And I feel you here
And you're picking up the pieces
Forever faithful
It seemed out of my hands, a bad situation
But you are able
And in your hands the pain and hurt
Look less like scars
Just a little while ago
I couldn't feel the power or the hope
I couldn't cope, I couldn't feel a thing
Just a little while back
I was desperate, broken, laid out, hoping
You would come
And I need you
And I want you here
And I feel you
And I know you're here
And you're picking up the pieces
Forever faithful
It seemed out of my hands, a bad, bad situation
But you are able
And in your hands the pain and hurt
Look less like scars (x3)
And more like
Character

A Post

2009-01-09T21:39:00.002-06:00

It has been brought to my attention that I've not been posting ... whoops.

I went private so that I had the freedom TO post ...and I'm still not posting. It's not that I don't have anything to say. It's that I have too much to say.

I'm not quite sure how to get it out in a reasonable manner. I don't want pity, and I don't want people to think I'm trying to get pity. I don't know really how to find the balance between blogging to get it out ..and blogging for myself ..and not worrying about how others will take it.

There is a lot going on inside of me right now ... some extremely positive ..and some extremely negative. Some is happening in the here and now, and some is messes from my past being churned up and spit out. Both are things I need to write about. It's the writer in me.

I'm not doing myself any favors by not getting it out. I went private with the specific purpose of being able to write what I needed to write ..and then continued to be silent. *shrug*

I need to get back to writing before the things inside me overwelm me.

Drawing to a close

2008-11-11T21:12:00.003-06:00

There is just a few weeks left in this first semester.
This semester that has started this new journey of the second half of my life. My mid life crisis so to speak.

I'm anxious for it to end and the second semester to start, to begin the next leg of learning ... to get on with things. To move forward.

This all feels so right ...

I think a part of me thought I'd start my process and then get overwhelmed, and quit part way through the first semester. It'd not be so far out of my history of behavior ... my past ... my character...it wouldn't be unusual for me.

But as the semester has gone on, I've become more determined, I've felt more at home as a student, I've become more settled ...and felt less incomplete.
It would feel more out of character for me to drop out than for me to finish.

The Peggi who didn't finish things ...simply isn't the Peggikaye who finishes what she starts.

We had to do a take home test for psychology, and it included some self evaluations ... James Marcia's identity.
The gathering before class came up and one of the guys sat down and said "hello Mrs Achieved"

I was startled

ME? Achieved ...
Forclosed maybe

Diffused definitely

Moratorium ...most of my life

Achieved???????? ME? Peggikaye

Then one of the other women asked me for help on one of the questions ... what? She's one of the great students ...and as I looked up, the students were around my feet ...looking to me. I was so confused!!!

When did this happen?!?
When DID *I* become the achieved ?

The instructor came down the hallway and grinned at me. She opened the door and let the students in and as I walked in, she said to me "you've picked a good major you know."
(Psychology)

I have always felt so ... far out of sorts ...and always so far out of the picture ..and so far out of things ... I think I even started to blog to try to get my head around my own little picture of my own little world ... it helped ..that's for sure.

But to realize ...that I'm finding my way in the world ...and others are seeing that and respecting that ... RESPECTING THAT ... is to me ... a new feeling. A strange feeling. A good feeling.

Diffused
Forclosed
Moratorium
Achieved ... Achieved ... wow

I'm getting there. I'm where I belong in life ...and secure ...in spite of some pain and cruddiness that is going on in the peripheral with family situation

Who I am ... is achieved.

Pictures

2008-11-03T16:42:00.004-06:00

This is me at about age 10 or so.

This is the man I grew up believing he was my step father. There is significant reason to believe he is my biological father.

Pictures of me as a child and adult, along with pictures of my 'step' father. He was Daddy to me. I will never understand why secrets are so important to keep. Secrets always come out, and when the truth comes out, feelings are hurt ...far less than if truth be told from the start.

In my case ... the secret kept me from
having my Daddy, be DADDY ... step siblings I adore that are more than likely half siblings ...and most of all ... I could have had his name.

It forced contact with a man who not only rejected me at the start, but continues to reject to this day.

The wounds that could have been prevented if only the truth was told, amazes me.

5 weeks to go

2008-11-01T12:59:00.002-05:00

There are 5 weeks left in my return to school. Well, 5 weeks left in the first semester of my return to school. Can't even imagine how long this process will take. I try to not think about that.

This semester has just flown by. Some great moments, some really tough moments ..but over all, I'm very glad I made this decision.

The hardest part has been the algebra. I've really struggled with it ..and the realization that there is more to it than my just not liking it ...has been rather eye opening.

Some realization that ...
my 'stubborn streak' as a teenager was less stubborn and more fear.
this really *IS* difficult for my brain, I'm not just being lazy or stubborn.
I still have to get past this.

Has made for an interesting few weeks as I've adjusted to the knowlege that I've got a math learning disability.

Some of the clues given to me, and some of the tutoring has helped, at least in the homework ... I still failed my 3rd test. There is no way for me to pull this grade out of the fire.

I'm going to talk, this week, to my professor about taking an incomplete, then auditing his class next semester, and then finishing it during that class. Maybe ..maybe I can make some sense out of it.

I know that even if I could pull my grade out of the fire, I am in no way shape or form ready to move on ... I don't 'get it' enough.

They'll move on faster than I am ready to move on, I need more time for this.

I'm hoping he'll agree to this, it's the only way around financial aides refusal to allow a student to repeat a class ...

The other frustrating factor is ... financial aide. It's still not in for this semester, much less next. I can't even register for next semester's classes (Which are filling at a remarkable pace) because they have a hold on me, because financial aide hasn't been granted.

Why? Because they messed up and saw the hold that we took care of before school ...whoever went to package my financial aid saw the hold from this summer ...and put it in the reject file.

Only problem with reject pile ..they wait till they finish everyone's financial aide, then go and send the letters of rejection. (and that makes sense because ???? you want to give students 2 weeks to come up with other means of paying for classes they've already taken and thought financial aide would cover it ...)

So, I went to find out why my son had financial aide ...and I didn't ...and we submitted on the same day.
That's when we found out about the rejection. Um ..only there was NO HOLD!!! I'd taken care of the hold ... (a defaulted student loan, 21 years old ... from a trade school that got in trouble with the government for taking advantage of students ...so much trouble they were shut down!!)
regardless, the default was taken care of ..and I was no longer on hold ... but the person who went to package me saw the 'default hold' and yet ... failed to read farther to see I was no longer in default! They just plopped me in the reject file!

Right and Wrong

2008-10-27T08:14:00.002-05:00

There are many times I hear the statment "No matter how flat a pancake, there are 2 sides of a story"

I cannot tell you how tired I am of hearing that. There are times when ..no matter how flat the pancake, there is a right and there is a wrong.

Abuse is wrong ...the other side of the pancake is to treat the person with respect, kindness and dignity. There is no in between, there is a right and a wrong.

Murder is wrong ... life is right.

Robbery is wrong ...respecting other's property is right.

I could go on, but you get the picture.

In the last 2 years I've come to the realization that giving excuses to someone for bad behavior keeps me stuck. I try to justify that other side of the pancake. To give the person the benifit of the doubt. I've given so much benifit of the doubt, that I learned to doubt myself.

I watched a friend go through a divorce while her child went through brain cancer and she was pregnant. I watched the father use the little girl with cancer as a pawn in custody case. I watched him taunt my friend by claiming the baby was not his. (it was, there was no doubt). I watched him bring his girlfriend to the funeral of this precious little girl. The divorce, wasn't final yet.

I watched all this and became totally frustrated for my friend. It's still going on, he's using the baby now to inflict pain on my friend.

In my nieces case, my sister called me, furious ..no FURIOUS that I'd not gotten 'the other side of the story' before I offered my niece a place to live. First, my niece was 22 years old, an adult. If she wanted to move out of her house and out on her own, I don't need another side of the story, my home is open ...to her and to her adult siblings. Second, I knew the other side of the story, I got it when my sister called me the day before I offered my home and asked me to "pray for R that she would come back under our umbrella of authority, stop rebelling and regain her salvation"

Um , my understanding of the Bible is that salvation comes through Christ, not through parents. I also do not believe that adult children are under any real authority of their parents. Respect, yes, honor yes, obedience??? They're adults, and they are accountable to God.

My nieces rebellion: holding hands with her boyfriend. Seriously. Her Godly, wonderful boyfriend. But they were committing 'sin as to witchcraft' (yes, exact quote). The affection between this young man and young woman was compared to the sexual sins in Roman's 1. My sister said "if you think that's ok, then you need to re read Roman's 1"

Um ... depravity, sacrificing sexual deviancy to idols, debauchery ... that's all in Romans 1, but affection between a young man and a young woman??? That's not in Romans 1.

I saw both sides, a right and a wrong. It's wrong to use the Bible as a weapon, it's incredibly wrong to use the Bible as a weapon against your own child.

In my own case, there was so much with my parents that I gave them the benifit of the doubt. "but they were busy" "they didn't see the forrest for the trees" I'd given them a dozen or more excuses over the years ... the reality is ...

there is a right way to treat a child ...and a wrong way.

Every parent makes mistakes. I've made more than I can even imagine. But, I did my best.

When you're so busy giving to someone else's children your best, that you don't even see your own child's issues ... that's wrong.

I have lost count of the issues that have come up in my adult life and had my mom or my dad say "well, we just didnt' see it"

They saw it in my sister, they saw it in my brother ..and got help for them. But for me ... they didn't see it.

There is a right and a wrong in lying about your life experiences as well ...and that lie ... that simple lie about my existance ..is at the very root of all the overlooking that happened to me.

I found out in March that my father is not my father.

It'd been the family rumor for years, but ... my mom?

The realization is ... she could not admit to her own wrong doing. Being married to a Baptist minister and getting pregnant by someone else was not acceptable behavior. So, deny it. Deny that it's anything but the Baptist minister.

For years, I thought he was just a jerk for walking out on her the day she told him she was pregnant. Now, I understand. Doesn't make it right that the secret was kept.

She still won't admit it, even with the evidence out there. I recently had to do a project for developmental psychology which included genetics of a family. It got me thinking ...blood type ... I was trying to make the father have a certain blood type ... but the family was different. It wouldn't work ...the scenerio I was trying.

So ... what blood type does my dad have. Sure enough ... he doesn't have a blood type that will match with mine.

Wasn't it possible in 1964 to type blood? If he did not think I was his, shouldn't he have just proved it wasn't true ... instead of keeping me in the middle of their war for 43 years.

The reality is ...he wasn't going to be allowed to see my sister if he proved the paternity of me. So, he tolerated having me around.

My problem with that is ...if you're going to accept the parentage, there is responsibility that comes with that. Adoption all the time gives children love they'd never get otherwise. .. it is possible to parent and love a child who is not yours.

The fact that he rejected me from the beginning and has made that rejection abundently clear over the 43, almost 44 years of my life ... this war was with my mother, not with me. I should have been left out of it.

I was a reminder to him of the betrayal....

To mom ... I was a reminder of her betrayal ...

and so ...they both did anything but to really LOOK at me.

No wonder I always felt like the odd man out of my family. I was.

There is more, but that will do for this post.

Right and wrong ... sometimes there just is no other side of the pancake. To flip it, means you've got the wrong side up.

thoughts

2008-10-25T20:57:00.002-05:00

So much has gone on, and because of family situation I've just not wanted to post. Never knowing what is going to be used against me in a senseless arguments. Things that never should be used, have been used, so I just waited till I went private.

One of the things that has happened this last few weeks was an IEP meeting for Benjamin. They wanted to reclassify him from Learning Disabled to Other Health Impaired. By going to OHI it allows for different modifications through the schools. Technically, Benjamin should have been OHI from the time he was 3 years old. We tried to get him classified as OHI in the old district, but, they were not about to do anything we asked ...so they were insistant that he did not qualify under OHI.

Benjamin was up for re testing this year. The district asked permission to reclassify.
Um ..uh ... YEAH! Please!
Just a bit shocking to find them offering to re classify rather than fighting for it.

So he got reclassified ..finally. He's 16 .. it's only been 13 years since we first asked for OHI ...no biggie. (rolling eyes). I find it amazing that this new district not only did not have a problem, but had teacher's who said "um, he's classified wrong!" (usually it's school psychologist that decides classification) Not just teacher ...but regular education teachers.
How obvious was this?

What was hard, so very hard was when they retested him, I realized I'd let myself fall under a false belief from the old district. I knew that they did testing that was not reliable. I knew that we'd never trusted their IQ evaluations. I KNEW that all of their testing had NEVER added up to the testing that we'd had done outside of district.

I KNEW that IQ scores are static and do not change over time.

I knew this ...and yet, when the fight settled down, and Benjamin started to see success, I let guard down and started to let their talk in.

EVERY outside testing that we had on Benjamin had him struggling significantly. It had his IQ ranging between 78 and 84. Without fail, his IQ, no matter who did the testing ... is IQ was in that 6 pt range. Now, we fought with the district, going to due process twice, and we applied for help with services through social security and through the state. This means, Benjamin had a fair amount of 'outside of district' testing. 7 or 8 separate IQ testings between the ages of 5 and 8.

Well, the last time the district that we had so much trouble with tested him, they told me that his IQ was 108.

Now, facts are .. IQ's are static. They don't change that much over time. Acheivement is not IQ.

The fact was ... I wanted to believe that life was going to be easier for Benjamin ...and I let myself get sucked into their test scores. There was no reason for me to buy into their scores except my mother's heart ...

They had a reason for not giving accurate testing (they'd done it all along ...their lowest evaluation of his IQ was 100. They'd say that his IQ is fine, he's fine, he's just not trying, no reason for special education services).

So, the battle between other district and I settle down and I let myself get sucked into the higher scores ...and then new district tests my son who is .. STRUGGLING.

What I want to be told is that it's him. That if he applies himself a bit more that we can get him doing better. what I want to be told is that there is no reason whatsoever for his struggles ...what I WANT to believe is what the former district had coddled me into believing ...

The psychologist pulls out the testing and hands me a copy and my face went numb. There was the IQ ... I'd seen it before ...and it matched ... it matched all the previous testing that WE'D had done.
Right there in front of me, 82.
The real reason Benjamin struggles ...things are harder for him than for other children. Things will always BE harder for him than for other children. It's not just a learning disability (although he, by definition hit that too because he had area's that were more than 20 pts below the IQ) it's a real problem ...and one that won't get better over time.

IQ's are static ...

Acheivement is not static.
Benjamin is not static.

Through out the rest of the meeting the poem I wrote became my mantra ... it had to or I'd not have made it ...

But they don't see what I see ...the smile that lights your face ...

"He's got significant delays in comprehension in auditory..."

But they don't hear what I hear ... your laughter reveals God's grace ...

"He needs more help in this area than we thought."

They tell me that your tests came back showing problems and low scores ...

"I think we need to increase the modifications, I know that by this age we're normally decreasing modifications, but his problems are big enough that we need to be increase them"

They tell me that you'll have to struggle, this hurts me to the core.

"no matter what we do, it won't be easy for him"

I wanted to cry but could not. My son was sitting next to me. They told him that he was struggling for a reason (he needed to hear this!) but that with his determination that it would not stop him.

That is true ..the sky is the limit for this child ... no matter what the IQ says.

A Mother's Heart
Every mother had Dreams,
Of a Child perfect and whole.
Every mother has Hopes,
For perfection, body and soul.

They told me you’re not perfect,
Sweet loving child of mine.
They told me that your learning,
Is taking too much time.

They tell me that your tests came back,
Showing problems and low scores.
They tell me that you have to struggle,
This hurts me to the core.

Every mother has dreams,
They tell me you don’t fit.
Every mother has hopes,
They say perfection you won’t hit.

But they don’t see what I see,
The smile that lights your face.
But they don’t hear what I hear,
Your laughter reveals God’s grace.

They don’t see what I see,
My child loving and whole.
I have hopes and dreams,
Because my child you are a gift from God
And you have a PERFECT SOUL.
© Peggikaye Eagler

Gone Private

2008-10-25T18:14:00.002-05:00

Well, I changed to private. Thank you for those who emailed me with their addresses to ask to come along. I went ahead and sent some invites to others that I had addresses for who I know read here occassionally.

I know there has been speculation about why I'm going private and some concerns. It really wasn't that big of a deal ...except on a personal level. Family issues have made it necessary. I was censoring everything I wrote out of concern over who was reading my blog (from my family) and how they were A) interpreting the information and B) how they'd use that information.

When family fueds begin ... nothing is sacred, so it seems. Respect goes out the window. I'd have to admit the lack of respect goes both ways, I've lost all respect for those I'm no longer on speaking terms with, and I seriously doubt that it will ever be reconcilled, but ... it must be that way for me to be the healthiest person I can be.
I would never be able to look myself in the eye if I did not stand up for right when such blatant battle of right and wrong was at stake.

I may blog more in detail about this, if I need some catharcis, I may stay to myself on it, just depends on what the writer in me needs to do. I will answer questions though as I realize this is a bit cryptic.

Decision

2008-10-17T23:03:00.002-05:00

Thanks all for comments all: email and blog comments, twitter and facebook ...

At some point in the next week ... probably after my round of testing on Wednesday and Thursday (developmental psych on Wednesday and Algebra on Thursday) I will go private.

After that point, then regular blogging, hopefully will return to normal.

If you don't recieve an invite and want one my email is Pearlsofaneagle@aol.com and on facebook I'm simply Peggikaye Eagler

Contemplating...

2008-10-09T21:47:00.002-05:00

I'm trying to decide ... if I want to keep this blog open and just post to it occassionally ... and start a new one totally completely anonymous (which as a writer, I don't like not being able to keep my name attached to my writings, as soon as I let them public, my anonymous blog becomes public ...) or if I want to restrict access to this to people that I approve.

I will be fairly liberal with who I approve ... the down side ... a restricted blog means no more writing for Grand Rounds ... no more 'meeting' new people through the blogsphere by them stumbling across my blog ... the first name that comes to mind is Cathy, Pat (my big blog sis ) Alyson, Erin ... just to name a few ...

But ... I'm so restricted by what I can say at this juncture in my life because my blog is public.
Even things happening with school I don't feel comfortable with blogging about with knowing that certain family having access (sissy in law, that ain't you)

I'm going to take a week to decide. Either way ... those who wish to know what's happening will probably need to let me know either here in my comments or email me at Pearlsofaneagle@aol.com ..if I go private you'll need an invite.

Still thinking ... I just don't want to loose my blogging interest because my muse feels restricted.

The assignment ..

2008-09-21T22:44:00.002-05:00

After a few days of thinking about it ... and a couple of emails asking me to .. I've decided to post the essay I wrote for my developmental pysch class. The assignment was to write about where I was 10 years ago ..emotionally, physically and socially and how I've changed or not changed. The ironic thing of the choice for the 10 year mark was what a pivotal time that was in the life of my parenting of a special needs child.

His Laughter Taught Me
In August of 1998, my youngest son was six and one half years old, my oldest son was almost nine, my husband was forty two, and I was thirty three. The obstacles facing my family were, in short, overwhelming. I was exhausted and at the end of my rope and feeling like I had no more resources to turn to. What made things seemingly worse was having most of the professionals and the support20systems in my life telling me that I was handling things well and doing everything right.
My youngest son, Benjamin, had been diagnosed with PDD-NOS, a mild form of Autism, Auditory and Visual Processing Disorders, an IQ of 75, OCD and a tic disorder. He also had an immune deficiency so he was frequently ill. He had weekly Occupational Therapy, Speech Therapy, and Physical Therapy at Children's Medical Center (and had been in all three therapies since he was nine months old). He had Pediatric Pulmonologist, Neurologist, Gastroenterologist, Psychologist, and Developmental Pediatrician. All of these were in complete agreement with both medical and developmental diagnosis and treatments.
We had taken him to the school district when he was three years old for Special Education Pre-School and they gave us a hard time. We had to take them to due process to get services. He spent two years in a due process ordered IEP preschool, and one year in due process ordered Head start. We then pulled hi m out in order to place him into kindergarten at The Little Light House, who fully agreed with all of the doctors and therapists that were treating him and his diagnosis'.
We moved him back to public school for a second year of Kindergarten. The school district said that this child of ours had no issues what so ever, that he was fine. He was a delightful child and his only issues were maybe some parenting issues, and that if we controlled his behavior better his "learning problems, (if they exist)" would go away. We tried to fight for an IEP for kindergarten and were not successful. At this point it is the beginning of first grade, August of 1998, and they are, once again, refusing Benjamin appropriate services. The only issue they would admit to him having was 'emotional immaturity' and that was 'not an educational issue'. Therefore, they did not have to serve him.
As his mother, I desperately wanted to believe them. I wanted them to be right, tha t he was simply emotionally immature and my parenting was bad. I wanted it to be that simple! I became angry that they were the ones across the table telling me that my child was delightful, a joy to be around and that there was nothing wrong. I was forced into the unenviable position of having to tell them that my child was not OK. That he had weaknesses, that he had trouble learning, that he had difficulties, and that he was not a perfect child. I felt that it should be the school telling the mother that their child has struggles and it is every mother's right to say "but no, you don't understand, my child is lovely!" They had placed me in the position that no mother belongs in: to recount her child's faults ad nauseum.
Benjamin's diagnosis of PDD-NOS brought with it s ome significant sensory issues, social awkwardness, and an extreme lack of impulse control. The sensory issues and impulse control were the things that had us the most concerned. At one point in time, the child psychologist had his impulse control estimated to be equal to that of about a thirteen month old infant. Imagine a one year old child in a six year old body. It is a lot to keep up with and almost impossible to keep safe. He would see something he wanted or somewhere he wanted to go and take off without a second's notice. We had to be able to read his body language and facial expressions in order to second guess what he was about to do to keep him from injuring himself or endangering another child.
Added to the mix was my own health issues, I had undiagnosed lupus and diagnosed Myasthenia Gravis. Myasthenia Gravis is a neuromuscular disease causing weakness and muscle fatigue of the voluntary muscles. The more the muscles are used, the weaker they get. I sometimes needed help getting dressed, running was impossible, I could not climb a flight of stairs and there were many times I could not properly chew food and would often choke on it. Double vision was common because my eyes were so fatigued. I frequently wore leg braces called AFOs (ankle foot orthotics) to keep my leg muscles strong enough to function. Running after this young, active child was a physical impossibility. Reading his body language was an absolute necessity for prevention.
During the year of 1998, I was hospitalized two times. Once for nine days receiving a treatment called plasmapheresis, and once for 17 days. Both for Myasthenic Crisis. I, myself, in addition to taking Benjamin to his constant doctor appointments and therapy appointments, was constantly going to see my own doctors and in and out of the hospital. Each of those doctors were only there to help the patient in front of them. My doctors there to see me, Benjamin's there to see him. My mental exhaustion built as I couldn't seem to get anyone to understand that all of this was effecting all of my family.
In the meantime, shortly after school started that year, while homeschooling my then almost nine year old son, Samuel, he developed a cough that would not go away. Nothing would help. Xray's taken, and medications tried and one day the pediatrician looked at me, went kind of pale and with a very quiet voice said "Peggikaye, this is Tourette's". The pediatrician and I then realized that the tics and OCD affecting my youngest son had been overlooked in my gifted oldest son.
A month later, my husband, who had polio as a child, was becoming weaker and weaker. Post Polio was a term we were becoming more and more familiar with. His Scoliosis and kyphosis were worsening causing restrictive airway disease, and we learned that eventually the scoliosis will do one of a few things; it will either cause the lungs to fail, cause an organ to rupture, or it will twist the spinal cord. One way or another, the doctors told us, they felt he had less than a year to live.
Again, these doctors were there for my husband, or me, or Benjamin, or Samuel ...but no one seemed to be able to deal with all of us. I felt like I was lost in a never-never land and everything kept getting worse. I felt like I was failing at everything and nothing could ever go right again. My body exhausted, my brain unable to function, and my body totally foreign to the athletic body it had been as a teenager. No one seemed able to help me, and anyone who tried just told me that for what was wrong with us, we were doing absolutely fantastic, and Benjamin was 'delightful'. 0A
One of the most desperate moments I can remember, middle of the winter, and Benjamin was in his bedroom with his brother and suddenly Samuel screams. Benjamin had jumped from the 10 foot window of our mobile home, and was running down the street stark naked. I ran out the door to go after him, it was raining, I'm myasthenic. And I fell, flat on my back. Samuel ran and caught his brother and came back and called 911. Afterwards I was taken to the emergency room to find out I was somewhat OK. My heart was broken and my brain was terrified as I realized I could not protect my child and I had no idea how to teach him the social impropriety that he had just committed! We had an appointment the next week with the child psychologist who did not seem alarmed by what had happened, he was after all, autistic. She discharged us from her care with a happy pa t on our backs, encouraging us as to what great parents we were and telling us that "Benjamin is where we try to get our patients to be in therapy."
Devastated, I went home. I'd just been complemented, but I was terrified. I'd just been told that this child I could not protect, nor teach, was exactly where their children were supposed to be. That answer was not acceptable. We still had no services at school and Benjamin was miserably failing in the first grade with the teacher sure that if he just applied himself he could learn his ABC's that he should have learned in pre school, (but it's not a learning disability!).
We received a letter from the State of Oklahoma. We'd applied for services through wavered services when he was about one or two. He had finally come up in the waiting list and was time to be tested to see if he qualified. This was a relief. He would FINALLY be tested by an independent tester. Someone not involved in the interest of either his educational needs nor his=2 0medical care. We would get a finite answer as to any real problems that he had. I had managed to talk myself into believing the school district. A bad move emotionally, but I did it.
She invited me to watch the testing (not something I would ever recommend) and my heart sank as I watched my son struggle more than I ever even realized he struggled. The results came in and she carefully went over the tests with me. She confirmed, not the school districts ideals, but the medical communities diagnosis. My worst fears and my heart shattered as I heard "Autism", "Tourette's Syndrome", "Obsessive Compulsive Disorder", "Auditory and Visual Processing Disorder", and "IQ 75". She also listed a few other gems that would make life difficult for my precious little boy. For strengths, she said, without hesitation, the same thing everybody else had said about my son: "Delightful".
That Sunday, I was singing in the choir at church and my heart was broken. I left the choir loft and headed to the bathroom. T he children's ministry was in the gym and I heard Benjamin laugh. It was a laughter that went from his toes to God's ears. It caught the attention of every single person in the room, from child to adult and brought a smile to their faces.
Immediately I knew: that laughter was my child. Not the test scores, nor the tics, nor the struggles, nor the diagnosis', nor the fights with the schools, nor even the doctor or therapy appointments. Not IQ or autism or impulse control or anytng else! THAT laughter was saying my child and my entire family was going to be OK.
I went into the church sanctuary and wrote the following poem:

A Mother's Heart
Every mother had Dreams,
Of a Child perfect and whole.
Every mother has Hopes,
For perfection, body and soul.

They told me you’re not perfect,
Sweet loving child of mine.
They told me that your learning,
Is taking too much time.

They tell me that your tests came back,
Showing problems and low scores.
They tell me that you have to struggle,
This hurts me to the core.

Every mother has dreams,
They tell me you don’t fit.
Every mother has hopes,
They say perfection you won’t hit.

But they don’t see what I see,
The smile that lights your face.
But they don’t hear what I hear,
Your laughter reveals God’s grace.

They don’t see what I see,
My child loving and whole.
I have hopes and dreams,
Because my child you are a gift from God
And you have a PERFECT SOUL.

© Peggikaye Eagler

Today, ten years later, in August of 2008 my son Benjamin is 16 and one half years old and through therapies, hard work and persistence - the autism diagnosis was removed, his IQ is testing at 98 and while he still has significant Processing Disorders, Sensory Integration Dysfunction, OCD, Tourette's Syndrome, the school did give him an IEP beginning with the second grade and continues to today. Today, his strengths include, not only being delightful, but Social skills are consistently listed as well as leadership.
My health, while not good is improved. I have had a total of twenty seven hospitalizations and fifteen surgeries; although it has been almost two years since my last hospitalization. The lupus has caused significant arthritis in my hands and my chest. I have=2 0tremors, headaches, and vertigo also because of the lupus. These tremors effect my fine motor skills which effects both my hand writing, and I used to be an interpreter for the deaf, but I no longer have the dexterity to use the sign language necessary to do so.
As I've aged, I've had to give way to using reading glasses to see the print on the page. I still struggle with double vision because of the Myasthenia Gravis, but that is the most frequent and most bothersome symptom. The severity of the weakness of ten years ago, is only there if I get too sick or wear myself out (in other-words, it's usually self imposed!).
My husband, who we were told just ten years ago that we should not expect him to live through the year, is still here and doing quite well. A year ago, we almost lost him, and it has taken him a year to recover. But, recover he has, and at this time, he is almost as well as he was in 1998. Surprising not only us, but any doctor w ho has ever laid eyes on him.
What has changed most in me, changed the day I heard my son's laughter, it took root and has taken on many forms of new strength and growth as it has branched out. Hope, success, laughter, and the realization that no matter the struggles the Eagler Family always had more laughter than tears, more hope than fear, and more joy than sorrow. That kept me fighting when I had no fight left, and so ten years later I have helped my family get out of dilapidated mobile home into a House from Humanity for Humanity, home-schooled my oldest son for eight of his school years, watch my fifty-two year old husband fight his way back from an ICU bed and out-live the 'year' by more than ten and realized that I loved my life and I don't want to see another mom as desperate as I was ten years ago and enrolled myself at the age of forty three to start a very long journey toward a Ph.D in Psychology to help not only children, but FAMILIES effected by issues such as autism, OCD, Tourette's Syndrome, developmental delays, processing disorders, Downs Syndrome, or whatever chaos life throws at them.

Balance

2008-09-18T23:22:00.012-05:00

Today I realized that my body is yelling at me. Rather loudly. The week before school started I came down with a rather nasty cough, fever ...yada yada yada ... it took 2 rounds of antibiotics to get through it. I'm still .. STILL coughing. I can't talk very much without resorting to coughing. I wake up at night ...coughing. It's not waking up doing my normal MG-- choking --on --my--own-- saliva -- choking ...but coughing! Sigh. It's not bad enough to go back to the doctor or another round of antibiotics. It's just a residual cough that sometimes hangs on for too long when a body has a hard time ridding itself of an infection. Since I'm not relapsing, the assumption is that the infection is gone ..and it is the residual cough.

The first week of school, first round of antibiotics, I started to improve, then within 48 hours of being off the antibiotics I was back to sky high fever and cough worse than the first time. THAT ...was a relapse of the infection.

This ... just won't go away ... cough hack cough hack cough hack.

I sound like a lifetime smoker.

Seriously. It is that smoker's hack. But I don't smoke.

The MG is playing tricks on me ...knees buckling while I'm walking, eyes going double about twice as often as they normally would. To be expected with the increase of activities and use of muscle.

The idea when going back to school was that I would make adjustments in home activities ...to allow for increased at school ... only ... I didn't.

So on top of adding hours and stress of school ... I kept up my load at home.

Whoops.

Soooooo as of today, I'm putting in a new plan of action. Some intentional eye rest every day, not on the computer, not watching TV, and not necessarily sleeping, but ...closed eyes. Making sure that I wear my eye patches if I'm studying and my eyes are tired ...taking a proactive role in taking care of my body. I've got a long road to hoe ...and I have put the proper care techniques into the pattern of my DNA NOW. If I wait till I crash and burn, it will be too late.

I do not want to go crash, burn, recover, crash burn recover ... that is my normal cycle. When I don't have school, that might have worked to go to bed for 3 or 4 days ..but I can't afford that anymore.

I'm having some trouble sleeping, but I am trying to make sure I'm resting anyway. That is making a difference.

The biggest issue with school is my struggle with algebra. OH BROTHER OH MY!

If only Mr Biegel were her to help me now! (7th grade math teacher, my favorite all time teacher ... sigh)

This last week has been one of the most stressful weeks of my life. My mom totalled her car on the 10th, my son totalled our car on the 11th. Mom's was her fault. She shouldn't have been driving because of a right leg injury and was driving with her left foot. She pulled into a parking spot at the public library and went to step on the brake and instead stomped on the gas.

She ran over a tree, over a bike rack and into a light pole. Thank God there were NO children nearby!

Samuel's accident wasn't his fault, exactly. He was driving on the expressway, and got cut off by a wreckless driver going 80 mph in the heavy rain (not just heavy rain, heavy wind and rain ala IKE). The truck cut him off and he had the choice of veering off away from traffic or into traffic. When he chose to go away from traffic, he lost control of the car. He hydroplaned, turned a few 360's and hit the retaining wall (solid cement) backwards ... facing traffic coming at him full speed at him on the freeway.

The not his fault exactly .. simply put is .. a more exprienced driver (IE ..Adult) would not have been in that lane .. and one of the things he said, very frustrated, almost in tears of defense was

"but DAD! I wasn't even going 65!"
(driver's ed drilled into the kids ... when it's raining .. don't go 65, as if that's the magic number to keep you from hydroplaning?)

The reality was ... he had no business being in that center lane ... and he certainly had no business being in the center lane NOT going 65 mph ... and if the weather conditions meant he couldn't go 65 ..then DO NOT go into that lane!

Personally, I think a teenaged driver should stay out of that passing lane! They just don't have the experience for it!

Long story short, he didn't have enough driving YEARS to know all of this information ... he does now. I didn't know it at 18 ... I didn't learn that stuff in drivers ed, and no one told me. I learned it through close calls and watching ... I got lucky. My son, did too...just not as lucky as I was.

I'm blessed that all we lost was our car! I get sick when I think about my son plowing into that wall! I want to strangle the man who callously cut off a teenaged driver going 80 mph in the rain ...just what was so important that you had to risk my sons life?

Psychology Student

2008-09-08T14:48:00.002-05:00

I was introduced today as a Psychology Major, by a professor.

Suddenly, it's real.

:o)

Still don't have my Humanities test grade back. :o( Not happy about that.

Got my paper with feed back, from psychology class. It made me smile.

Thinking of posting it here, but not wanting to get into the habit of putting my blog readers through the torture of having to read all my writing assignments. ;o) Still debating on this one.

Tomorrow I get (hopefully) the results of algebra test. I am finally starting to breath normally after thursday's panic attack.