Home from 'sleep over'

Pearls and Dreams

Why do they call it a sleep over?

It went fantastic. Just great. The first time mom's were saying they couldn't believe it was this much fun or they'd been crashing the party years before. The other mom's were saying this is the best one ever. The kids had an absolute BLAST!

The scavanger hunt got 127 cans of food for the homeless shelter & 8 boxes of macaroni & cheese (can't figure that out, 5 teams, 1 box each? LOL) and 5 baby food jars.

We had 4 adult flip flops that were not used, we're going to donate those as well.


So not only did the kids & parents have a blast running around the neighborhood gathering stuff, we got the kids a couple of service projects out of it too!

The flip flops were the hit of the party! Even adults that didn't think they wanted anything to do with it, wanted to do it! (Glad I brought extra! I was sooooo allergic to them! I realized about the second or third store I was breaking out, so i bought some latex free gloves to handle them. I'd bought myself a pair, but couldn't use them. One of the youth group girls showed up to help. She and I wear the same size, so she got a pair. She also called me Mom all night . We had fun with that.

The kids loved the biscuit pizza's and pigs in a blanket. The adults LOVED the pigs in a blanket. Some of the mom's had never had them (huh?) and we were talking about all the ways you can do them up to make them fancier. We had 120 pigs in a blanket,, 80 mini pizza's, 54 people ... a bit of cheese & sauce left over.

The backpacks are incredible, the names look great! Becky had two machines going, and was able to do every mom, every child & even a surprise one for our children's pastor and her baby to be. (we know what it is, and what her name is).

They liked the sand art to, but they were not nearly as impressed with the sand art as they were the back packs and flip flops! Until this morning ...they all fell in love with them this morning when they saw the dried product. *whew*!
I'd also found larger packages of single colored sand, rather than the sand art packages, at Garden Ridge.
The sand art packages are about $6 to $7 for 3 lbs, I got 6 packages of 28 oz each, ...3 of them for $1.88 3 for $2.49.
So much cheaper than 2 packages of the pre packaged sand art boxes.
So, now, Sand art, that was a once in a lifetime special event, for children's ministry, has become an affordable activity! (grin)

We watched Little Mermaid & Mary Kate and Ashley go to Hawaii. I missed the movies (yea!) I was by then, sitting in the kitchen visiting with the other mom's who'd been working their tails off.


The crafts took longer than we thought, and it was 11:30 pm before we got to the devotion. The kids liked it, but the mom's were the ones who seemed shocked by the demonstration of the sand and God's thoughts numbering more than the grains of the Sand. The kids thought that was just awesome. The adults were just "Wow!"

The big kids dozed off by about 1:30, we finally got the last todder to doze off around 2:45.

We got up around 7, started to wake the girls about 7:45, and got them to start picking up their stuff & eating french toaststicks and OJ.

I left my Pillows at Michelles .growl.

I will be napping as soon as I pick up my son from the father/son sleepover that my husband did NOT take my son to. He'd promised him he'd go, this is Bj's last year to go. But Thursday night, told him he wouldn't go. Thankfully, the children's pastor figured Don wouldn't actually be there, and didn't plan on it. I would hate to have his reputation! I am glad that the people in my church do not base reputations on guilt by association too. I have my own earned reputation, and they realize, we may be married, but I am not responsible for his irresponsibility.

That was the one spoiler ... Don's refusal to participate in the father/son group.

I can't wait to get some feedback. I got some feedback on Pipp Jr. from some of the mom's I hadn't met yet, and that was really cool.

I told my friend Cindy, on IM the other day, if I come up with any more idea's for children's ministry to tell me to stick a sock in it. Immediately I went "oooo! A sock hop for kids night out!"
I sent it to Michelle. Looks like next spring we're going to do a sock hope for Family Night.

I have had fun planning these, I enjoy it. It's scary before hand, but it is SOOOOOo rewarding!

Beach Party

Pearls and Dreams

Tomorrow night is the mother daughter sleep over.We'll start with a scavanger hunt in the neighborhood where the kids will ask for one item + a canned good to donate to a food charity. I know which one, but my aching head is preventing me from thinking about which one. The items range from silly things like a drinking straw, single bandaid (new please) greeting card (new or used) to a box of macaroni & cheese and a toothpick. 25 items. Michelle cleared it with 40 of her neighbors. Then we come back for dinner, the kids will make themselves and eat homemade biscuit pizza's & or pigs in a blanket. Then craft time: We're decorating the flip flops by tying strips of material, or hot gluing ribbons, pompoms or feathers, or buttons or beads or flowers etc on them, sand art & painting canvas backpacks for a beach bag. One of the mom's is bringing her embroidery machine to embroider the names on the canvas bags!

Then they'll have a bunch of snacks to pick from to make their own bowl of trail mix.
And I (gulp) will give the devotion (GULP). Don't remember if I told you what I'm doing, but I'm writing it out because I need to flesh it out again before I do it tomorrow night in front of the 54 people signed up to come. GULP

The focus will be remembering that they are a treasure because God made them, and loves them just the way they are.

Taken from Psalms 139: 16-18 (NCV)
139:16
you saw my body as it was formed. All the days planned for me were written in your book before I was one day old.
139:17
God, your thoughts are precious to me. They are so many!
139:18
If I could count them, they would be more than all the grains of sand. When I wake up, I am still with you.
****************************************************************
I will start off by reading those verses and asking them if they knew that God thinks about them. I will tell them that He loves them so much, that King David said his thoughts are more than all the numbers of the sand ... then will ask them if they have any idea how much that is.
After a few have answered. I will have one of the little girls count out a few grains of sand. 5 or 6.
Then I will have one of the middle aged girls count out a quarter of a teaspoon of sand grains.
Then I will ask on of the 6th grade girls to count out a babyfood jar food (if they'll even begin to agree to it)
As the girl or girls are counting out the babyfood jar grains, I will show them pictures of a dessert & one of the beach & ocean and re read the verse
If I could count them, they would be more than all the grains of sand
End it by telling them that they are all sooo precious to God that he thinks of each of us so much that we can't even count it, because the thoughts number more than all the grains of the sand, which, now they know, are not countable.

Then, they watch either Beach Blanket Bingo (with Annette Funnicello) or some other beach movie that Michelle finds that might be fun.

Then go to bed around 1 am. Wake up, feed them breakfast and go home around 8:30 am.

My Life

Pearls and Dreams

My Life

by Peggikaye Eagler

Running with my friends each year,
Summer sun browning our skin,
Climbing trees, rocks and hills,
Picnics with family brings a grin.

Softball games in a county league,
Purple shorts and white socks.
Rolling down dandelion covered hills,
Fishing for Blue Gill from the docks.

Volleyball games with my team.
Running laps for hitting the net.
Slumber parties with forever giggles,
Pillow fights, feathers flying yet.

Aerobics classes for hours on end.
Sweat pouring while muscles are gaining.
Working double shifts at work,
Barbecues with friends even while raining.

Marriage comes with plans for the future.
Our baby girl comes too soon.
Another baby brings joy and healing,
Teaching us to sing God’s tune.

His brother comes before too long,
Concerns for him fill our hearts,
He grows and changes every day,
Accomplishments fill his star charts!

Health problems for each of us,
Taking our focus to areas unknown.
Never taking for granted our life.
Raising our treasures until they are grown.

Life has thrown us many a curve,
Sometimes we thought we would fall,
But God’s Hand held us safe,
Even in the hard times, we’ve heard His call.

My family life is not what was expected,
Some things harder, some things not,
One thing I know for sure,
This reward I’d never find.
No matter how long I sought!



© Peggikaye Eagler

Tuesday

Pearls and Dreams

Well, I got plenty of rest in the last few days, still tired. I guess I really needed it.

I got my knee surgery scheduled for June 2. YIKES. I have to go off prednisone & anti inflammatories for a full 2 weeks before the surgery. YIKES. I was supposed to go off before the meeting with the breast surgeon too, however, I called the surgeon's office to see if Mobic was included because it's not on their list, and they said that I could stay on the medications, come in for the evaluation and if they need a biopsy, they'll schedule it for when I'm already off the medications rather than pro longing the period of time I'm off them. WHEW!!

I was looking at a whole month without my anti inflammatories!!

Tonight, I go to the second class to aid the Habitat financial class.
When I get done tonight, I should have a minimum of 285 hours out of the 450 needed to build. Some from my class have already broken ground and started building. Most are over 400 hours.
I keep having to remind myself ... I knew it'd take me longer, I knew it'd take me longer, slow and steady ... it's better to get it slowly than to not get it, or to go whole hog and wind up in the hospital and then get disqualified because I couldn't meet the minimum requirements (they give no allowances for physical disabilities ... there is a program however to help those with mental illnesses, I need to look that up and post it on here for those who might be interested.I just find it odd that they'll make allowances, grace periods, and accomodations for mental disabilities, but not a single one for physical disabilities)

Anyway ...off to class ...

Following Orders

Pearls and Dreams

I'm not quite sure how I made it through school, because I certainly can't follow directions.

I lost a day yesterday. I couldn't tell you what happened for anything. I only have vague recollections of Thursday, and hardly remember seeing my neurologist. (what is it about exacerbations that fool with my memory??? is it lack of breathing correctly & oxygen?)

So, today, I got up at 7 AM, got showered & dressed. My mom picked me up at 8:30 and we went to the church where we met several other people.

We took the church van up to a lake on a hill (Okies call it a mountain HAHAHAHAHA!!!!)

Then from 9 am to 4:30 pm, I sat in a church leadership conference.

I learned more than I could possibly imagined in that short of a period of time. I also learned that the word 'leadership' won't kill me (grin).

I don't know when, or how I'll progress, I just know, that for the first time in my 40 years, I am glad to be in leadership. I am glad to be a part of progression not following the leader, content to be in my own little stair in the middle of the stairs.

I'm looking forward to seeing the changes and growth in our church as the Pastors and staff hold us, the core leaders of the church to a higher standard, a higher expectation of being.

And tonight ... I am looking forward to my pillow!

Tomorrow, is the third month of Pipp Jr. For those who've not been reading long, PIPP is Pastor's Intercessory Prayer Partners.
Paul told the early church to pray for him that he could effectively share the gospel. So our church has a one on one prayers that the pastor's can have pray for specific needs. A year ago, it dawned on me, we should bge including children in this process. I waited for 8 months for the person in charge of Pipp to start it. Then, realizing it was MY dream, for MY child, talked with the children's pastor and started it. So, tomorrow, I take 17 children to pray for the pastor of our church.
I never thought I'd be so content to be in leadership. I never thought I'd be so excited to be on the front lines and not hiding in the back room serving quietly.

So, tonight, I go to sleep, and tomorrow, I go to church and come home and hope to not crash (grin) and then Monday, I go to yet, another doctor and set the date for my knee surgery. *YIKES!*
THEN I start following doctor's orders (I have a bridge I'd like to sell you!)

Let's See if I can follow directions this time

Pearls and Dreams

Went to my neurologist this morning. He did a full neuro check. I can't remember the last FULL neuro check he did on me. He even made me walk down the hallway hmph!

Helping me back on the table he says "I think you've worked yourself into a nice little MG exaccerbation, and if you don't rest, we'll be visiting daily in the hospital over an IV concoction of IVIG or plasmapherisis."

So, now that MR. Lupus and Ms. MG are bloth flaring, I think it's time I actually listen to some orders and go to bed and stay there.
When double vision and shortness of breath starts, things are a sure sign it's out of control.

I go back in 4 weeks for pre surgery & decide if I'm in a flare/exaccerbation or just worse because I'm overly busy or if something else is going on.

Anyway, reading/typing has gotten significantly more difficult because the eye muscles have decided they don't have to work in tandum with each other.

So, I'm going to take a bit extra mestinon ... (yes, with doc's guidance, more than what I'd been taking extra) and go to bed. IF I feel better, I might get on for an hour this evening, if not, I'll check on things tomorrow.) i have an all day meeting I CANNOT miss on Saturday.
It may very well be Monday before you see me again.
If you need to check on me faster, you may check on me at email
PeggikayeE (don't forget the TWO E's at the end ) at aol dot com.

take care.

Grand Rounds

Pearls and Dreams

Today is the 30th Edition of Grand Rounds.
It is perched this week ...er hosted this week by Girl Scientist
They have graciously, once again, allowed me to participate.

Also, please do not leave my blog today without checking out the Memorial below (I Remember You) to my dear friend Trudy, who died 10 years ago today in the Oklahoma City Bombing.

It would mean a lot to me, if you would leave your own thoughts of memorial on the bombing in the comments.

I remember you

Pearls and Dreams

Dear Trudy,

I have needed to write you this letter for a long time, technically, it probably would have been better to wait till tomorrow, but it's still to painful. Today is the day.

I remember the day I moved her to Tulsa. I was 17, and we'd just gotten into town. My sister worked at the church we'd be attending, and we just went straight to the church since it was Wednesday. December 30, 1981. You were there early for service to help the youth pastor and his secretary (my sister). You were 18. My sister introduced us and you hung around with me all afternoon.

That evening, we sat together, after church, you introduced me to Eric W. and asked him if I could join 'Proclamation'. I had no clue what you were talking about. Eric asked me if I liked to sing and I said yes. So, he said, "We're a choir, join us Monday nights at 7 pm"

New Years Eve, I went with you to the youth group New Years Eve party. Friday, you called me and we talked forever on the phone. Sunday we went to Ken's Pizza together after church. Monday night, we went to Proclamation practice together. My life changed forever.

You, Trudy, accepted me, right from the start. No questioning who I was or what I was. Just open, honest and friendly. You were a year older than me, already out of high school, and I was just a Junior. It didn't matter to you ... social class ... age ...didn't matter. We'd become friends and fast friends.

We sang together, we hung out together, we laughed together, cried together, prayed together and just sat together. The day I was afraid that my mom might have killed herself, you went with me to check the house, you went in first, so that if she had, I would not have found both my mom and my dad. Why neither of us thought to call the police? I have no idea. Thank God she was just asleep! (Did I ever tell you that she'd sprained her ankle and had taken some pain killers? that's why she didn't hear the phone ringing! Although, this last February, she did tell me, that she HAD been suicidal at the time).

You dropped out of Proclamation, but our friendship didn't drop. You became pregnant with John Michael. I remember so many of our friends that just seemed to reject you. How awful that must have been for you. I still, to this day, don't understand that.

I remember being very honored that you allowed me to share your pregnancy with you ... I learned about morning sickness and what it was like for a 19 year old who was brave enough to stand up for what she saw was right. Do you ever think about those 2 months I lived with you during the week? Me so I 'd be closer to my school, and for you to not be alone while you were going through such a miserable stage of pregnancy?

You were one of the few people who had the nerve to corner me on the eating disorder. I don't know what you'd have done if the resources available today were there back then. I'll never forget the fury in your eyes when you caught me purging in your bathroom. The fury that turned to fear as you raged at me, then begged and pleaded with me to stop ... to stop and heal and to see myself better. To look at myself. Do you remember taking my face and making me look in the mirror? I don't know that I've ever had someone so lovingly mad at me ... I still hurt when I think of that moment. How much that must have hurt you.

I'll never forget seeing John Michael when he was little. Those eyes would just enchant me. Can you remember our talks outside of the singles group? With everyone inside chatting away, you and I standing outside, still on the edge of things, John Michael going back and forth between us.
High School was behind me, Proclamation behind both of us. I had no idea what to do.
You didn't like Don when you met him either. I didn't learn very well did I? I'm sorry we lost contact. I think the last time we talked was when I called to tell you Samuel was born.

I was supposed to call you again, but Samuel got so sick, then I was sick ...and my life spun out of control.

Then April 19,1995, 9:02 A.M. Timothy McVeigh took the option of us ever re uniting as friends away.

The friday after the bombing, CBS announced the first few names of the victims who'd been identified. I had a baby gate up between my kitchen & living room. As they were announcing the names, I was stepping over the gate, and I heard "Trudy Rigney" Immediately, I fell and started screaming. Evidently, I went into hysterics, my husband could not calm me down to find out why I was screaming. It took calling my mom, and mom, and him 5 full minutes to get "Trudy Rigney died" out of my mouth.

It took 3 years for my son, who was then 3, to stop saying
"Oka-homa City Bombing mamma, you can cry now" everytime the news would show the picture of the blown out Murrah Building.

Oh Trudy ... I have so often wondered ... did you know? Oh how I hope you don't know it happened. How I've prayed that you were just working one minute and in the arms of God the next. The idea, that you'd had to hurt and suffer for a while just breaks my heart.

It's been 10 years since you were so violently yanked from my life forever ... but my memories of you will forever be in my heart. You were my first friend in Oklahoma. You were a true friend who loved me enough to take a firm stand.

I went to the Memorial a few years ago, I stood there and looked at the clear chair that represents who you are and all I could think of was "I'd rather have her here"

I Love you Trudy Rigney. I always will.
I miss you.
Love
Peggikaye

ATTENTION

Pearls and Dreams

ATTENTION ATTENTION

Grand Rounds is Tuesday. If you are a regular submitter, get your submissions over to grrlscientist

Email your submissions to GrrlScientist at yahoo dot com.

check out her request for submissions ...she has some really good ideas.

Most of all SUBMIT!!!!!!!!!!!!!

A Swamp Plant & A Cactus

Pearls and Dreams

A friend asked me to tell the story of my sons and their Tourette's Syndrome. After thinking about it for a few days, I have decided to do just that.

I have two sons Samuel & Benjamin


Samuel is 15 years old, wait, as of last thursday, he was 15 1/2 ...old enough he keeps reminding me, for a driving permit ... we won't go there. Samuel, is quite gifted, he has the diagnosis' of
OCD/TS/ADHD


Benjamin is 13, has a lower than normal IQ (78), and has a diagnosis of ADHD/TS/OCD/APD/VPD/SID + 2 brain malformations .. Arnold Chiari Malformation type 1 (uncorrected) & Bifrontal lobe atrophy (lack of tissue, not degeneration of tissue)


Now, for those who don't know what that alphabet soup stands for, I will add the interpretation.
ADHD = Attention Deficiet with Hyperactivity Disorder
TS= Tourette's Syndrome
OCD = Obsessive Compulsive Disorder
APD = Auditory Processing Disorder
VPD = Visual Processing Disorder
SID = Sensory Integration Dysfunction


Samuel's OCD is far worse than any of his others, Benjamin's ADHD is his worse. Both boys have moderate TS, that is fairly well controlled with medications. (although, they are not light weight medications.)

Life with these two is quite interesting. I have had times where I have realized that their disorders have manifested in dramatically different ways ... and those are polar opposite ways ... and they collide. When Benjamin gets overwhelmed, he must have quiet. MUST. When Samuel gets overwhelmed, he must talk, tic, be vocal, noisy active. We live in a 2 bedroom, 3 room mobile home.
When both boys are overwhelmed ... it's quite interesting ..one needs the outlet of making noise, the other has to have it quiet. The more noise Samuel makes the more upset Benjamin becomes, the more upset Benjamin becomes, the more it causes anxiety for Samuel ... the more anxiety Samuel is under, the more he must make noise, the more noise he makes, the more it causes anxiety for Benjamin and it just works it's way to a nice little explosion.

Benjamin's tics are fairly quiet & benign ... facial tics, leg movements (although, the leg kicking one about got him in trouble in 4th grade till he figured out how to tell kids it was happening)
He aslo makes sinus sounds, and throat clearing and this weird clicking sound in his throat. His worst tic ... lip licking. It sounds so benign, but the poor kid seems to almost always have chapped lips!
Before he was diagnosed with the TS, he was going through massive testing on his sinus'. He'd had an MRI, CT scan, xrays, been to 2 ENT's and the pediatrician and I were at our wits end trying to figure out how to help this poor kid who couldn't breath well enough so he had chapped lips all the time and couldn't stop sniffing & coughing. the tics started, he already had a neuro, and they started him on a medication for the tics. I called the pediatrician about 4 days later and said "Doc, you'll never guess what, the sinus stuff is gone!" He just said "TIC!"

Samuel's tics on the other hand ... are annoying and he thouroughly enjoys the annoying nature of his tics. I think, if I could stop reacting, he'd probably enjoy them less. Not sure if this is a good thing or a bad thing. He makes animal sounds, he says senseless words, he also makes sinus sounds and throat clearing. He claps, he snaps, he taps ... while I do sometimes see the facial tics and neck moving tics ... mostly, they are vocal tics.

He also cannot seem to talk without an accent. Now, if we didn't living in Oklahoma ... but lived in Boston, or NY, or London, or Ireland or anywhere else he happens to be using the accent for ...it might be ok. But, we don't. I have never been able to figure out if this is an OCD thing or a Tic thing. I did not think it was related, he swore it was. The neuro said "yes, as a matter of fact, accents can in fact be either an obbsession or a tic" GREAT!

Benjamin's disorders are best handled by as little pressure as possible. When he was little, he would not eat if you put a whole plate in front of him. We could get him to eat a whole meal, but we had to give it to him in thirds. (he also had to have three food items on his plate, still does ... problem is, now he thinks he should still be allowed to have thirds with a full plate for each serving ...um ... noooooooooo). If you need him to do 20 math problems, you give him 10, let him finish those, and then give him the other 10. Give him the whole 20, he won't get but 1 or 2 done.

Samuel's disorders are best handled by having all the pressure, all the expectations all the structure possible up front. If you give him 10 math problems, then try to give him 10 more, he's going to get very upset because you only gave him 10. You have to lay out EVERYTHING you expect him to do, up front and clear and consice. It is better to give him more, and back down, than to give it to him in bits and pieces.

Benjamin needs tight structure in order to learn. He needs quiet, he needs it organized and well thought out. He needs time to complete it without pressure of a time limit. Tell him he has 5 minutes to do something and he can't start it. Just tell him to do it, and he'll get it done in 4 minutes. Everything has to be done with in these strict models of efficiency that seem to make sense only inside his brain ...but they work and they work well.

Samuel needs loose structure in order to learn. Lay it all out. Stick him in the middle of a crowded noisy room with a list of things he needs to get done and the time he's to have each one done ..and it will be done accurately and on time. Tell him it's due when he's finished, and he will never finish it. He needs the time limit. He needs the chaos to tune out. He needs to organize it within his own mind in a way that makes sense only inside his brain ... but it works ... and it works well.

I came to the conclusion a few years ago when dealing with these two kids. While most parents have kids who are vastly different, when you throw the mix of disorders/mental illnesses into the mix ... it gets quite interesting and is a balancing act that would make Barnum & Bailey jealous if you could succeed.
But I realized I was raising these two kids and it was like raising a swamp plant & a cactus in the same planter. One needs careful nurturing, water, attention ... the other needs little water and don't get too close, prefers to be further away from other plants ...

My life ... raising the swamp plant and cactus ... the cool thing ... I get to watch these two bloom!

Pearls and Dreams

Pearls and Dreams

Not too sure how much I'll get to blogging this weekend. I'm wiped out. Thursday, my fever (I run one every evening, thanks to Mr. Lupus) isn't acting my normal. I wake up every day with a temp about 97.5º Somewhere around 3 pm every day, give or take a couple of hours, it rises to somewhere between 99.4º and 100.6º. Pretty typical of lupus. Thursday, it started at 9 am, and spiked all the way up to 102.3º. Friday, it was still over 101.5 when I woke up. (yes, called the doctor, told the nurse I've complained about a zillion times, no one ever called back) So, today, I went to after hours clinic. Symptoms are pleurisy ...mouth sores... joint swelling .... joint pain ....fever ... etc.... and CBC was normal, blood sugar normal Sed rate was all the way up to 75. Diagnosis ... lupus flare. Treatment ...already on maximum medications allowed ...go home, go to bed. So ...if I don't post anything for a day or two, it may mean that I am actually following orders! (imagine that!)

In Every Victory Let it be said of me ...

Pearls and Dreams

In Christ alone, I place my trust, and find my glory in the power of the Cross, in every Victory let it be said of me, My source of strength ... my source of hope ...is Christ Alone!

If I knew who wrote those words, I would credit them. I did a search, and didn't find them ... I will look at the music on Saturday when I go to the church to help with the worship team practice.
(hopefully, my brain will remember to check it)

That has been my 'battle cry' with the school district for 7 years now. I have been fighting with this district over my sons education for 10, but when I heard that song ... I knew that was what I wanted to be my cry ...when it was all said and done ... I wanted no one to be surprised that Peggikaye Eagler was a Christian and that while I might take a tough stand and fight for what my child needs, while I might not stand passively by and let them walk all over me, while I might stand and fight the battle they put before me ...
I will do it respectfully, honorably and I will do it with the grace, and wisdom of the principals of faith I claim to live by.

We have had disagreements, every year, we have to remind them of the law every year, every year, we have to fight for what the federal law tells us my son is allowed to have.

I am not one of those parents that fights for the ideal situation for my child. I am not one that fights for even the absolute BEST situation for my child, I am the parent that will fight for the best situation that I feel the school can provide and will insist that they follow the laws. I will not ask for more than what the law says.

We fought hard from age 3 through first grade while they claimed they did not have to service him and all the doctor's speech therapists & developmental specialists said they did. We took them to due process twice (and won) and a couple of other things that caused major headaches for the school district.

The end result ... the last day of first day, my son got an IEP and the services he should have been getting for 4 years before. (Federal law says special needs from age 3 on up is to be educated in special education ..early intervention. My district tried to tell me early intervention was third grade ... um, no)

Second through fifth grade was disagreements over what he could or could not be expected to do, nothing legal, nothing severe, nothing heart wrenching ... just frustrating.
I take that back ...not every year was a battle. 4th grade was a dream ... I had not one disagreement and had no problems whatsoever. But, that was the sole year.

Sixth grade ... enter the nightmares ... worse year yet and considering what we've been through ... it's been significant.
One of the beginning posts on this blog was concerning this very issue ...

Having been told that they would not accomodate to 'any one individual child' ... I was furious but determined to fight and still maintain my testimony. They told me that they modify to the special ed class, and my son needed to accomodate the class. Well, special ed is about meeting the need of an individual child's learning disability ...not the child conforming to the class modifications.

We have had many more dealings this year, emails between the special ed director, the teachers and myself, phone calls and more meetings. In January, I emailed the special ed director an email full of frustration saying I was tired of the confrontation, tired of the fighting, but the mistreatment of my son MUST stop and his education MUST begin. His math teacher was refusing to help him saying that "I already did the first problem on the board, now do your work." or "The example is in the book, now do your work" or "I showed you how to do that yesterday, now do your work"
(yes, she admitted to saying these statements! )

The special ed director stepped in and forced some modifications.
In January, the last week. While his grades seem to get slightly better, and his at home stress reaction seemed to improve, I had no way of knowing how many changes they had truely made.

I went to the IEP review today. I was terrified (go to my other blog and read Sunday's entry!). I had no idea what to expect. I just knew, I had to remain above board and fight the battle for my child and remember who I claim to serve.

The meeting started out with the principal thanking me for working within the system this year and being flexible as they worked out the problems (um ... ok! I see that I have at least accomplished one goal in behavior if not in emotions!)

Then I am told about the meeting with the special ed director as they tell me the changes that they implemented in January. They move on to tell me the progress.

But ...
AS IF ..the progress he's made has nothing to do with the changes made, the modifications made ... as if nothing THEY did to change what THEY were doing ...they start to tell me how much he's matured and how much easier he has been to work with. How much more cooperative he has been. They start to describe to me ..the child we tried to tell them that he truely was ... and they would not believe me. They could not, or would not see the connection between "WE MADE CHANGES ABC that Mrs. Eagler requested" and "Benjamin was able to make ABC behavioral/educational gains."

He has a good IEP for next year. A solid one for the first time in a long time. If it is followed appropriately ...and if the appropriate modfications are made ... then he should have a good year. That will be my prayer.

I am battle weary and exhausted but glad the battle is over for the year and ever so grateful that I have managed to still come out of it with the witness of who I say I am in tact ... even when my emotions are boiling over at home and with friends over this issue ... my behavior has remained ... what I wanted it to be most ... Christ like. No one I have dealt with this year would be surprised to learn that I am a Christian, and I still fought for and won what my child so desperately needed.

Sigh

Last month, I posted a post called "Good Gravy Beans" in that post, I listed my doctors' diagnosis' and medications. As of 10:30 this morning, that list has changed ... switch Bextra (gee thanks FDA) for Mobic ... and Prevacid for Nexium ... because the Prevacid appears to be failing. She was supposed to think the choking was pure MG, probably would have too ... except ... I burped during the appointment and she asked me how my GERD was doing. I told her it wasn't any of her business, she said "That good huh?" She did say she understood I'd been through a lot this year, and have more to go, so before she sends me for the EDG, we can try Nexium, but I need to wrap my brain around needing an EDG. (when she looks through my chart and realizes she's never ordered one in the 4 years she's seen me, she's going to insist on it ...my history of bulimia alone has left enough damage, I'm supposed to have it done every 3 years, it's been 5 or 6). The other doctor ... has me a bit more concerned. I have to go see a breast surgeon based on the breast pain & abnormal mammogram. :( . UGH UGH UGH ... here we go round the mulberry bush! again.

Grand Rounds

Pearls and Dreams

I'm not in this one, but thought I'd promote it anyway. Grand Rounds is being held this week at Grunt Doc. Check it out. Always interesting and educational!

Pk's first day of activity aka rest journaling

Pearls and Dreams

Ok ...just for the heck of it, I'm posting my first day of journaling on my day ...

6:30 get up
6:45 get Benjamin up (Samuel is staying home sick today.)
7:30, Benjamin off to bus, eat banana.
7:35 Shower
8:30 Stop by church to pick up shoes left at church yesterday. (gift to Samuel)
8:45 At Panera Bread to meet with D. Youth Pastor's wife (9 am appt) , for coffee, actually, we're meeting at Starbucks, 2 doors down. Church staff is meeting at Panera Bread, but D isn't there yet, so I'm standing there visiting with Pastor, associate pastor and secretary.
9:10 Youth pastor shows up for his 9 am meeting & D shows up for our 9 am meeting (grin) she and I go to Starbucks where I have my first cup of starbucks coffee .. no idea what ...coffee mocha something or other with whip cream & chocolate on top, and a raspberry & lemon low fat muffin.
11:45 D & I walk back to Panera Bread to see how much longer staff is going to be, they're just breaking up. I walk with children's pastor to her car to see the backpacks for Mother Daughter sleepover craft, tooo cool. We spend 10 minutes talking about what I need to do for sleep over prep.
12:08 home, on the computer
12:55 Samuel to doctor
2:00 Grocery store
2:35 Computer/ eating a yogurt
3:30 Get roast ready, and put in oven
4:10 Eating an egg salad sandwhich while on the puter.
5:00 lay down on couch & watch TV
5:20 Call from J, member of Myasthenia email list. (COOL! Haven't ever talked to anyone from that list!)
5:45 couch
6:00 serve dinner
6:15 eat dinner : pork roast, carrots, onion, biscuit
6:40 computer
7:30 go to walgreen's pick up prescription
8:00 Dose out meds for Bj & I for a week.
8:05 Call friend from Small group, to check on him.
8:30 Computer
8:45 Take night meds & eat salad with raspberry dressing
9:00 Call friend who text messaged about friend from small group to make sure he was ok.
9:33 Blogging about day.

Now, how is that too busy? That looks like a lot of down time to me!

Pearls And Dreams (Spirituality): April 2005

Pearls And Dreams (Spirituality): April 2005

Timing

Ok, if you want to read the post that was originally here, you'll have to go to my other blog. It was written on there, for there and still posted to here. I left it here long enough for me to go take a nap.

So, now I will post about what I'd planned on.

My rheumatologist is a good doctor, and I like him a lot, but I have the feeling, he's going to frustrate the ever living fire out of me because he's right.

Inspite of my increasing pain, he won't make any changes in my treatment. He had a couple of reasons, both of which, made sense. Neither of which, I liked to hear. The first, was something I have control over ... although, I don't like to admit that I do. The first one, probably the biggest reason, more serious and nothing I can do anything about, nor can he, or anyone else. I just didn't like hearing it. The first thing he wanted me to do for the pain, is to keep an activity journal. He has the distinct feeling that I am over doing it, and that is causing a significant amount of my pain. Well pfffth. I've complained to 3 friends that he said this, all three said "gee, ya think?" Well, pfffth! So, my friend C. keeps asking me "have you started your 'rest journal' yet?" I told her it's an activity journal. She said that SHE is calling it a rest journal to remind me to rest. So, the next day, she asks me again. And again. Today, at church, she walks in and asks me if I started it, and i remind her that I have to get a small notebook first. She hands me this Betty Boob Notebook that fits perfectly into my purse. The second thing that I came away frustrated with. He was right. Completely, 100%, but it made it no less frustrating. I'd asked him about a different drug for the lupus. While the Cellcept that I take for the MG is also a lupus drug, it is obviously doing diddly squat for the lupus. It is making DRAMATIC progress in my MG. (see previous postings in March about my physical therapy sessions! Before Cellcept, I couldn't walk up stairs, i had to go one foot at a time, and would not be able to make it up a flight of stairs without my legs giving out on me.) I am not willing to go OFF of the Cellcept to take something else for the lupus, I want something in addition to the Cellcept. He, had already thought of this. He'd already considered the options. He'd already talked to my neuro. They agree that taking me off a drug that is working for MG is foolish at best, dangerous at worst. But, he felt that my overall health isn't stable enough to add something else. The drug that he would use, is not one he would use in addition to Cellcept, it would instead of Cellcept, and it does not have a good track record in treating MG. Therefore, it makes it a no go. The part that was hard to hear, was when he said "When it comes to treatment, your myasthenia must take presidence. (sp?) You have life threatening Myasthenia Gravis, you do not have life threatening lupus. If that changes, then we take a look at things differently." He's right. I don't like to hear it put that way. Right now, the lupus, on a daily basis is such a big deal, and the MG is back there, it flares a bit ... it's flaring now because of overdoing it at the concert ... but in general, the lupus is so much more on the quality of life issues. BUT. If i were to stop taking the drug that is treating the MG to treat the lupus ... the MG would quickly revert back to what it once was, when I couldn't even dress myself without assistance. Days like today remind me just how icky MG can get. I went to lunch with friends after church, and choked. Couldn't swallow right and my food tried to come out my nose. growl. Double vision is a real bear to deal with today. Breathing ... oh, am I supposed to be doing that? So, today is reminding me that the MG really DOES have to take the primary role in my care inspite of the pain. It is very frustrating to realize that there isn't much that I can do. He said maybe in a few months, when they get the insulin resistance settled, when I'm past the knee surgery ... when the other health issues settle down, we'll see what's happening. But for now ... he's afraid to tip over an already tipping apple cart.

Testing

Pearls and Dreams

Yesterday, I tried to post a post on here, it wound up on the other blog, I tried to copy it, wouldn't copy. So, Now I'm trying it now to see if it will show up here or on the other blog.

I see the site meter has changed ... but it says 23, that means it reset, I didn't want it to reset! I had over 2500 visitors! ARGH!

blogging, is definitely an exercise in patience.

Decisions

I have found myself torn between wanting to post every day on so many different topics that I don't have time or the room for all of them.
I want to post more about my spiritual walk, so, I decided to open a blog dedicated to just that. That's not to say that my faith won't be seen here, in the first blog, but this one will be primarily about faith with some of my other life issues thrown in.
I need to have a place to blog about both my spiritual walk and my journey with lupus & MG ... so rather than have one take over the other, I will just have both.
So, tomorrow, I will begin my posting on both blogs. So, add Pearls And Dreams (Spirituality) to your blog roll!

WOW! Just WOW

Pearls and Dreams

Incredible. I got there, we got in and our front row tickets and not only were they front row, they were front row DEAD CENTER.

I did not get to meet them. Won't go into details on the web on that.

The concert was incredible. The auditorium it was in was small, only seats 500 and the front row was so close to the stage that when I cross my legs, my toes would touch the stage wall!

Phillips Craig and Dean came out on stage and immediately made eye contact with me and my husband. They started to sing one of my favorite worship songs and off we went.

My husband and I went knowing that PC&D are all pastors & worship leaders who put on worship concerts. About 490 of the people who went were prepared for a concert. 10 of us were prepared for a worship service. PC&D spent a lot of time making eye contact with the few of us that were there for a church service!

I will never ever forget this night. They sang most of my favorite songs of theirs, all but 2.

Dreams do come true.

Dreams come true

Pearls and Dreams

I am not much of a celebrity watcher, concert goer or anything like that. There are a few Christian singers that I do really really admire and would love to meet and would actually put forth the physical effort to go to one of their concerts, but never could afford the tickets. Not many, but a few.

One such group, has so touched my heart that I shot off an email to their group website last December. Turned out, they were coming to a town near me in April. They forwarded my email to the sponsoring church of the concert.

Long story short. They sent my husband and I front row tickets and said they'd arrange for us to meet 'the guys' after the concert.

I was floored (actually I was having to lean against the couch screaming like a 15 year old girl ) when I got the letter. I've anxiously awaited the day. So excited, I have barely told anyone about it, for fear of ruining this wonderful opportunity.

But ... today is the day. In 3 hours and 45 minutes, my husband and I go to a town about 45 minutes north of us and get to sit and worship with my favorite singers on the planet. The group that has touched my heart more than any other group ever. Only one other singer has come even close to touching me like Phillips, Craig and Dean and he's a solo artist named Kyle Matthews.

I'm trying to decide if I should stick some of my writings in the car or not. Not take them in with me and say "hey! read these." But, what if we really have time to talk, and my writing comes up and they would like to see it ...would it be foolish for me not to have it?
The chances of that are slim to none, but a few months ago, the chances of me ever getting front row tickets at a concert of my dreams were slim to none too.

Dreams ... dreams coming true.

Yesterday's Mail

Pearls and Dreams

Yesterday's mail brought a letter saying My son had now been inducted into Who's Who Amoung American High School Students. I always thought that was for Juniors and Senior's only, but looking at the information, it's just the scholarship stuff that's available ...you have to have taken the ACT or SAT to apply for scholarship through them.

I'll post later about the meeting with his teacher last night.

5Q4 for DaisyMarie & Barry

Pearls and Dreams

Ok, sorry it took so long for me, between blogger & my stress test .... anyway ...here they are

DaisyMarie first :
1. Start with an easy one: Why did you choose your blog name?

2. In your profile, you say that you like the book Celebration of Discipline. What about that book caught your attention?

3. What fruits of the spirit do you think are the easiest & hardest for you to display in your life?

4. In your answers to Biscotti Brain, you said you feel like a denominational mutt, do you see this as a bad thing or a good thing and why? How will this both help & hurt you in your future?

5. Where do you see God taking you in the future?

Now for Barry

1. Same first question : Why is your blog named what it is?

2. What has been the hardest & most rewarding thing of being a parent?

3. If your life was a sporting team, what kind of team would it be, and what position (player) would be missing to make it the most balanced, highest quality team possible?

4. If your life was the team stated above, and you had to sell that team to a buyer, what qualities would you say it had to make it worth the buy?

5. If there was on turning point in your life that you could say changed the direction of your life, what would that be, and why?

Great News

Pearls and Dreams

My 15 year old son ...

This child is 15. He was homeschooled for most of his schooling.Before all of you start telling me what a good job I've done ...don't ..this kid is just ... self taught. I supervised, I pushed, I shoved and I cajoled, I provided the opportunity, I forced the opportunity ...but not once did I ever show him a single academic thing ... he is entirely self taught. I got tired of arguing with him in 8th grade and decided he needed someone else to be accountable to in high school.

He's gone from homeschooling to a school of 9th & 10th grade only ...2400 member school. He's done great, great grades and even on the studen council (ok, just how does one go from homeschooling to that large of a school & on the student council in one fell swoop?????) I guess by being

So, he's got lots of friends, good grades ...he brings home report cards from his teachers with quotes like "pleasure to teach'' (OHHHKAY ...so if he's such a pleasure to teach, then why is he in your school instead of my home?????????)

Anyway, he's doing good. I've gotten emails from all his teachers telling me what a remarkable adjustment he's made. 3 have told me that they've never had a homeschooled child make the adjustment so well, and yet, they feel that he'd be fine if he wasn't that he seems fine to just 'be in his own skin and that is such a rare quality to see in a teenager' (got that in all their emails, wonder if they''d talked? LOL)

All of them have asked me about what text books we used because they are impressed with the quality of his education. Not too bad for a poor family homeschooling with garage sale books and hit and miss when it comes to organized curriculums and doing a lot of talking about what's going on in the world and at times ...not even having books, just the TV, computer & paper & pens!

So, today, we get a letter in the mail, he's been inducted into the National Honor Roll. Wow. Just wow.

I'm amazed that he's my child. I'm amazed quite frankly, at both my children. How in the world I got so lucky ...is beyond me!

Pearls and Dreams

Pearls and Dreams

OK, next time, I do research before the test not after. Maybe not. I'm tired of research, tired of tests ... maybe it's just as well. I'm fine now.

The echo tech was very chatty, very friendly, very very sweet. Would love to take her home with me. About 10 minutes into the test, she got very very quiet, and then took out the video out of the machine, got up and got a blank one, and said I needed my own video recording. The other one, was one for the full day for that doctor's patients. Not sure it was good that I needed my own. I've had a couple of echo's before, I saw one valve that was doing a fair amount of bouncing around when she had the sonogram thingy right over the spot on my chest that hurts the most ... hmmmm. Some of the rhythm sounds she recorded sounded freaky.

Ok, before the next part, please know that as scary as it might sound, after the first minute or two & I heard my neuro's name shouted over the phone, I was not scared. I'd been in myasthenic crisis many many times, I knew they had the rescue meds & knew I'd be ok. It was very very surreal. It was extremely surreal, but I wasn't scared at all, perhaps I should have been, but I wasn't.

My MG and thalium tests ...do NOT get along ... I could not tell you if the test was painful. Too busy watching the chaos around me from a body that would not move, talk ...or evidently breath judging by the number of people who were yelling at me to breath. They had to call my neuro in the middle of it.
I can remember being completely unable to move even my eyebrows, barely able to keep my eyes open, but wanting to so they'd know I was awake, them yelling about my blood pressure as they were taking it from both arms and one leg (without latex free cuffs because they didn't have time to get the extra latex free cuffs) and yelling at me to breath. I had this very odd sense of calm when I realized they were calling my neuro.

On the crash cart before the test, I'd seen the name of the IV form of mestinon, can't spell it, but know it when I see it, so I knew they had it and had it in the room. So they had the right med, they were calling my doc and I was just watching the chaos with this very odd feeling ... wondering if they thought it odd that it was MY stress test and they were the ones stressing out.

Hind sight, I'm VERY glad that my son asked the children's ministry to pray for me yesterday !!!!



Anyway, I won't know more till the cardiologist gets back with me. The only thing they've said is "if we ever do this test again, you'll be done as an inpatient or 23 hour admit" .... uh ... yea!
I'm just feeling lucky they let me go home!!!!!!!

For anyone curious ...no, Don did not take me ...no ... he didn't ask me how it went even after I fell coming up the stairs when I got home and dropped the half full gallon of milk. I told him that if I have to have another one it has to be done in patient. He hasn't asked me why.

A Mother's Heart

Pearls and Dreams

In the past week, I have had several reminders of just what it means to have a special needs child. Through observation, reading blogs, and parenting. All of the experiences bring a lump to my throat, but the parenting, brings a tear to my eye ... and challenges my faith, trust and forces me to step firmly down in both my faith in God as well as reality.

I have this son, he's an incredible kid.

He is funny, he is a joy to be around. He is absolutely a delight. He makes the whole room around him just lighten up when he walks in.
He gets along with everyone, kids, adults, even bullies don't pick on him. He is just everybody's friend

He struggles to learn. He is in special education classes and it is a real struggle for him. This year, in particular, he has had teachers who are looking at his personality and deciding that with those social skill should come better academic skills, and they are not meeting him where he needs to be met. I am tired, worn, frustrated and angry at having to deal with these people, but fight I will ... with the battle cry I've used for the 10 years I've had to deal with this districts special education department ... In every victory, let it be said of me, my source of stregnth, my source of hope, is Christ alone. I will fight to the death to get what my child needs, but i want to do it taking the high ground and with them never being surprised that I claim to be a Christian!

Even with the battles with the school, and knowing he struggles, I go into the psuedo denial of the severity of his problems. I kid myself as to how bad they really are. I see him interacting with other people, I know his spiritual acuity and I go into this stance that makes me think that all in all, it's all going to be ok. Part of me thinks, I'm supposed to ... I'm his mother, I'm supposed to see him this way. But then, when I come face to face with the scores, the testing ... the process ... the reality, it hurts, and it hurts for my son.

This week, Benjamin had to go through yet another evaluation, his eyes are not tracking right, so we had to find out how it's effecting his ability to read & process things. The things that he could not do, simple, easy things, that he couldn't do, and suddenly, I was flashing back to my very young child
When everything was so hard, and every step of progress had to be worked for at 10 times the effort that anyone else put into it.
I remembered why I don't like watching these evaluations ...

They hurt ..they remind me of the pain my son suffers and how hard things are for him. I so many times get to look past the scores, past the struggles, past the work and I get to see his smile in the midst of his work, and the joy on his face in the accomplishment, I hear his laughter as he learns something that he's worked forever trying to learn and that's what keeps me going and that's what drives this mom. It's the Smile that is who he is, it's the laughter that reveals his deep down heart, and what a wonderful child of God he is. In the grand scheme of things, that's what's important.

Weeks like this, force my feet into reality to look at the problems he has, and they break my heart ... and they hurt ... but in the long run ... I know that who he is ... is not the words he missed, not the scores he couldn't get, not the paper that says he's deficient ... deep down what matters is that wonderful delightful smile that lights my life and everyone he touches. A week like this in January of 2000, also, following testing that forced me to see some reality, inspired the following poem ... it is still true ...

A Mother's Heart
by Peggikaye Eagler

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

More and more kitty pics

Pearls and Dreams

Shhhhh everyone's asleep



Sugarfoot wants to join the nap and interrupts the sleeping ogre



And people pay big money for vent covers .... I have furr lined ones, not very effective mind you! But cuter than anyone could possibly imagine!


Cats once again hiding in Don's verious hidey way places in his curves and corners of his unusually formed body.



Coffee thinks he's Kind of the Hill, Newspaper is about to take him DOWN!!!!!!

Where oh where has my little blog gone?

Oh where oh where has my little blog gone? Oh where oh where could it be? I shut down my puter to leave for a while, and came back to find a blank page!! BLOG ... where are you????? Please open! At least I got my dashboard to open, I emailed blog support, but haven't heard back from them. Then again, last time I emailed them, they fixed the problem, then 24 hours later emailed me and said they had fixed it. I want my blog!!!! A white blank page is not my idea of a nice blog! Ok, hitting publish to see, what, if anything happens.