Held by Natalie Grant

This, is the song that I posted a while back. Held, by Natalie Grant.
This year, I've had 2 good friends who've lost their children. One, 2 years 4 months, the other, 6 years old.

The reality of my friends loosing their children, it caused me to see that I'd shoved the grief of loosing my own child to the background. When Kyliebug died in April, I ALMOST dealt with it ... then Don got sick.

Then, a few weeks ago, little Joseph ... started kindergarten on Monday, and died in his sleep on Wednesday. Joseph, had fought a battle his whole life. I've known his mamma for longer than I can count ... and we both have talked and talked and talked about what it's like raising special needs kids.

In fact, that's how we 'met' .. she'd started a email group for parents of special needs kids. Joseph, wasn't even on the radar yet. I'll never forget the day she told me she was pregnant with him. My prayers for them, started that day ...and will continue for the rest of my life.

The question of why this happens, is unknown. I've discussed it in detail. My heart breaks for Teresa, Kylie's mom and my heart breaks for Erin, Joseph's mom.

When Kylie passed away ...my youngests son's first reaction was "Jessica (my lost baby) will be there to show her around."

When I asked Teresa to pray for Erin ...she said she would talk to Kylie to show Joseph around.

It dawned on me that night, that ..it meant the three of them were together. Maybe, just maybe, with Teresa's grandmother, and my step dad and Erin's parents all watching nearby talking about how proud they are of thier children and grandchildren.

So, I post this video, for Kylie, for Joseph, for Jessica ... as well as for us mom's ... this is, what it means to be held ..and one day, we will hold our babies.


Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would Take a child from his mother while she prays
Is appalling.


Who told us we'd be rescued?

What has changed and why should we be saved from nightmares?
We're asking why this happens To us who have died to live?

It's unfair.

Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life And you survive.
This is what it is to be loved.
And to know that the promise was When everything fell we'd be held.


This hand is bitterness.
We want to taste it, let the hatred know our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life And you survive.
This is what it is to be loved.
And to know that the promise was When everything fell we'd be held.

Bridge:
If hope is born of suffering.
If this is only the beginning. Can we not wait for one hour watching for our Savior?

(Chorus) This is what it means to be held. How it feels when the sacred is torn from your life And you survive. This is what it is to be loved. And to know that the promise was When everything fell we'd be held.

"I'm Sorry"

Two little words.

"I'm sorry I bumped into you"
"I'm sorry I forgot to get cash for you"
"I'm sorry I didn't do my homework"
"I'm sorry you went through that ..."

I never thought ..that 2 words could be so ... what is the word I'm looking for? Impactful, profound, annoying, and intruding? RAW?

In the last 4 months ... evidently, I've shown ..to several people, not just my treatment team ... a bit more of who I am. Deep down inside. I've also talked things over with my therapist, especially when Don was in the hospital ...

and over and over again ... I hear the words "I'm sorry"

My therapist, has made it a point to make sure that I hear her say "I'm sorry this happened"

I have decided that 2 phrases I would just as soon my friends not say to me when I'm struggling "I'm sorry" and "I love you"

I am not sure why ...most people, love to hear those things. Most people, need to hear those things.

But for me ... it makes me wish I'd not shared whatever I'd just shared.
I don't know if it makes the situation feel more real ...or if it makes me feel like I've gained sympathy I don't deserve .. I don't know ... I haven't figured it out.

I only know .. I don't like to hear words that people say every day ... and I'm not at all sure that those words should bother me.

new ventures

When I was a little girl, my favorite part of church, was the praise and worship. From the time I was a toddler ... I loved to sing hymns .. and praise chorus' ...

I was in the third grade when my pastor's wife told me after church one Sunday, that, as long as I was around ...the rocks would never get their chance to cry out.

In the 6th grade, I sang for the first time in front of a group. On a Friday night, at a Christian coffee shop ... a common thing in California in the 70's ...groups of Christian's ...gathering together to sing ... the beginnings of what we call today "small groups"

In the 7th grade, I joined the choir.

In 8th grade, moved from California, to Colorado, again, joining the church choir.

In the 10th grade, my church, being a rather progressive church of it's day, had a worship band. We were the only church in town to use instrumentals! I played my clarinet as well as sang in the choir.

Then, in the 11th grade, moved from Colorado, to Oklahoma. There was a singing group in the church we attended. 15 to 24 year olds. We'd sing every other Sunday for special music, and travel during the summer ... and to surrounding churches. If you've ever seen Celebrant singers or Continental Singers ... you'd know the group idea. We were called "Proclamation". The group, over the 2 years we existed had 20 singers at a time, but over 80 of us were members.
I graduated from high school while a member of Proclamation.

When I left Proclamation, I moved back to Colorado, and was in a professional Christian drama ministry (my paid job). I went back to my former church as an interpreter for the deaf, and praise and worship team member.

I came back, to Tulsa …and went to a lay ministry Bible school, while being in the choir and leading worship for the singles ministry.

I got married, and soon divorced (my ex husband left me after 4 months, deciding that God, nor marriage was for him) and went back to leading worship for the singles ministry.

I was ordained in ministry, AS a worship minister. (the ordination was specific to the church itself, not a denomination or national recognition)

I then, met Don, married him ..and life got crazy for a while ..and I was not in music ministry ... I had Samuel ..and got very very sick. No one knew what was wrong ... I had trouble breathing, swallowing, double vision and by the time I got diagnosed, I couldn’t dress myself or chew food.
I finally got diagnosed, and treated, but ...the disease, Myasthenia Gravis ...took away my ability to sing. So ... I stepped out of ministry all together. I had nothing to offer God. I had been trained in music ministry. My heart, from early childhood, had been in music ministry before I even knew what music ministry was ... and now, I had no voice with which to praise Him.

10 years ago, God lead me to Southpark Community Church (yes, that IS the name of it, no, it is not a spammed name!) Within the first few weeks there, I heard a song for the first time ... and my heart broke right there, as I placed on HIS alter, what I considered ministry to be.


When the music fades and all is stripped away
And I simply come
Longing just to bring something that's of worth
That will bless Your heart

I'll bring You more than a song
For a song in itself
Is not what You have required
You search much deeper within
Through the way things appear
You're looking into my heart

I'm coming back to the heart of worship
And it's all about You
All about You, Jesus
I'm sorry, Lord, for the things I've made it
When it's all about You
All about You, Jesus

King of endless worth, no one could express
How much You deserve
Though I'm weak and poor, all I have is Yours
Every single breath

I realized, that God wasn't asking me for a perfect voice, that He had simply called me to worship him, in whatever manner He called me to worship him. For a while, I just did a few volunteer things around the church, helping out here and there. Was in a prayer ministry and the benevolence ministry.

Then, after I'd been there for a year, the worship pastor/pastor's wife, Carla, asked me to join the choir. I thought that odd, since she'd never heard me sing. I said something to the pastor, and he said "no, but she's seen your heart worship".

So, I took my weak voice, and joined the choir. It was, the hardest year of ministry I'd had. My head struggled with the music my voice couldn't sing, that I could read, but could not make the sounds. I don't think anyone quite realized how hard it was ... then …the decision came down … they were disbanding the choir. One problem solved ...new problem caused. My heart ...was still with worship ministry!

My mother was the newsletter writer ... and she was using my computer, and was putting in an ad for a secretary for the worship leader. She asked me if I wanted to do it? I had been the secretary for Proclamation …so ...sure, why not!! It would keep me in worship ministry!! (as well, as get me off the singing!)

So, mom called Carla … and ... I began my behind the scenes job of pulling the music for our singers and musicians ... that was 8 years ago.

I have loved my job. I have treasured my job ... I have honored my job. It has been a position that I respect. It is something that I take seriously as I pray over the congregation, the musicians and singers each week. It has been the highlight of my week ...

Carla left in December. Part of me was worried that they were not going to ask me to stay. I was told that was absurd, I was necessary! Whew!

Then Don got sick and I took a leave of absence ... and ... God started to deal with me.

When the music fades ...all is stripped away ...

God is asking more than a song ... for a song in itself is not what he has required ...

It's not mine any more ...

He's calling me out ...

But it's music ministry! That's my heart! That's MY place!

Longing just to be something that's of worth ... that will bless your heart.

I have to do it ...no one else knows the job ...
I'll bring you more than a song ...for a song in itself ...is not what you have required ...

As I took my leave, they had to find a way to do my job without me. They learned how to do what I've done for 8 years ...

You search much deeper within ...to the way things appear, you're looking into my heart ...

There are kids in the church who need me, the worship team doesn't. It's not my place anymore.

You're looking into my heart ...

BUT GOD!!! IT'S WORSHIP! MY HEART IS IN WORSHIP MINISTRY! THESE ARE MY FRIENDS! THIS IS MY SMALL GROUP! THIS IS MY SUPPORT SYSTEM! GOD >>> THIS IS MY HEART!

You search much deeper within
Through the way things appear
You're looking into my heart

Oh God, please, tell me you're not calling me out of the music ministry!

So, two weeks ago, I'm driving down the road, and I'm praying ... God, are you serious? And my cell phone rings ... it's the Children's Pastor: "Peggikaye? I just wanted to invite you to the parents meeting tomorrow night. I know you haven't been real involved this year, but, I think there are things coming up you'll be interested in"

You search much deeper within
Through the way things appear
You're looking into my heart

And so, I tell her what's been on my heart ... she agrees to pray with me.

It's a hard decision. I love these people. I've served with them; I've served them ...for 8 years. I love this ministry ...

Tonight ... I didn't get to the list before I got there ...they had the music pulled before I could get to it (see, told you they'd learned to do things without me!)

One of the songs

I'm coming back to the heart of worship ... and it's all about you ... all about you Jesus ...

and I realize ... I don't belong here anymore. This isn't my place.

I love these people ...but it isn't my place.

I told my friend Ronda after church. My prayer partner, my accountability partner, my partner in crime ... my mentor ...my big sister ...and she smiled and said "so, has God called you to another ministry?"

And I said "What? No check in your spirit?"
"no, not going to argue with God"

Saturday, I gave my resignation to our worship leader. She did not seem surprised. Fully supportive; she assured me that the worship team would be fine and they were still my family.

Today, I met with the children’s pastor. My official role begins on Wednesday. I will begin by assisting with a musical for Christmas. Then, in January, I will begin my role as Special Events Coordinator. If you’ve read my blog for a couple of years, you’ll know how much I’ve enjoyed planning Kids Night Out, Mother/Daughter Sleep overs, Father’s Day breakfasts.

As we talked, I told her some ideas “off the top of my head” and I she and I realized … it wasn’t off the top of my head … it was in my heart. I’d actually been thinking, and planning. I have some solid ideas and plans already for next year (CLEAR INTO SEPTEMBER!!!) I have a clear vision of what I want to do and why I am there. I feel the passion I’ve had for worship ministry building in my heart for children’s ministry.

Tonight … this feels like a good thing.

What Bible Character Are You

Which Bible Character are you?

You're probably named Mary. Or John, if you're a guy. In any case, no one really remembers you.
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can of worms ...

Well ... my psychiatrist, whom I've lovingly referred to as "Dr. Bobblehead" is leaving. He's taken another job. He thought he might be able to take a few patients with him, but, it doesn't look like, at least in my case, like it's going to work out. So ... I have to find someone new. Monday, will most likely be my last appointment with him.

Last week, I got a phone call ... my new therapist, psychologist, that has been so good. Dr.B, (her name really does start with B) has had to take a sudden medical leave of absence. 4 to 6 weeks. I know more than I should ..first of all ...when I first met her, she told me a little about herself ...she has rheumatoid arthritis, lupus ..and we talked about the commmonality of our medications. One of them, carries a cancer risk.

It hasn't been but a few weeks since we talked about our medications and the risk of cancer they carry. She asked me if I got cancer would my medication have to stop immediately. I wasn't sure. I wasn't sure I'd agree to stop it even if I DID get cancer. (I was going through a breast cancer scare, that turned out ok).

She mentioned that if she got cancer on her particular, it would be an immediate removal of the medication. The medication is referred to as a Disease-modifying antirheumatic drugs a DMARDs. DMARDs is a category of drugs used in many autoimmune disorders to slow down disease progression.

The risk of going off of them, is ... well, the progression of the disease.

So ... while Dr. Bobblehead is telling me "don't worry, she'll be back. They'll do the surgery, and she'll start the treatment, and then she'll come back and practice during treatments like a lot of people with cancer."

Yeah huh ... and a lot of people don't have the body she has ...with active RA ... and going off the one drug that's controlling it. Sorry, I simply know too much.

I, more than anyone, understand what's going on, and the need for her to take off (maybe not come back). So, it's not that.

I am wishing that I'd not met her. I'm wishing I'd not trusted her ...but ... something about her ... I had an immediate bond with her. It's not her fault at all.

So, 3 weeks ago, I decide to be open and honest with her, and Dr. Mitchell, since I thought I was going with him .. about something I'd not dealt with. I didn't know it would really be that big of an issue ... I just thought it was about time to open up a bit more. I finally had a therapist I knew was going to be able to work me through the process.

So, they start to ask me questions about the issue ...and one question, they asked ... hit a nerve. I don't think Dr. Bobblehead knew what he was asking. I froze.

So, then last Tuesday, Dr. B and I start to deal with the fall out ...and Friday, she has to take the emergency leave ...and now ... I find out ... that I'm most likely not going with Dr. Bobblehead.

I emailed him last week and said ... I think, one of my fears about dealing with my issues ... is that I'd be dealing with them alone. Like I always have ... and the odd thing is ... I am.

(yes, I'm very aware that I have friends, and blog friends ..and there are people who care. But, it's not the same as my professional team ... and nothing, can make it the same.)

One word. No explanations.
1. Yourself: growing
2. Your spouse: MINE
3. Your hair: thin
4. Your mother: sigh
5. Your father: no comment
6. Your favorite item: elephant collection
7. Your dream last night: nightmare
8. Your favorite drink: coffee
9. Your dream car: Bug
10. The room you are in: kitchen
11. Your ex: forgiven
12. Your fear: won't say
13. What you want to be in 10 years: Christlike
14. Who you hung out with last night: family
15. What you're not: brave
16. Muffins: none
17: One of your wish list items: Books!
18: Time: Private
19. The last thing you did: searched
20. What you are wearing: pajamas
21. Your favorite weather: cool
22. Your favorite book: Little Women
23. The last thing you ate: Chocolate Milk
24. Your life: Interesting
25. Your mood: anxious
26. Your best friend: BRAVE
27. What you're thinking about right now: Friendship
28. Your car: Contour
29. What you are doing at the moment: fidgiting
30. Your summer: busy
31. Your relationship status: MARRIED
32. What is on your TV: PBS
33. What is the weather like: HOT
34. When was the last time you laughed: 2 weeks ago

Hat tip to Biscotti's Brain ..this one, was just too interesting to pass up. I didn't do a good job of sticking to the one word ..but ... I've never followed directions well ;)

Introducing!

It is common in the blog world, when you know someone who is starting a new blog, or, you come across a new blog that you like to introduce that blogger to your blog friends. I've had the pleasure of introducing a few blogs in my time.

This time, it is a particular pleasure to introduce this blogger, because, not only do I KNOW this blogger, but I am related to this blogger. By choice, not by blood. *grin*

This blogger, is, my sister law, Pam. Healing Herbals Inner Sage

Her heading reads :
Healing Herbals Inner Sage
The workings of an herbalist, including the growing, foraging and making of products. I believe in and strive to live by the teachings of our Grandmothers, both those of my Native American and European ancestry. Many call these the Wise Women, Elder or Crone ways. After talking with the Creator, each of us should tune in to our inner voice, my listening brought me to this path. So listen, as I share my Inner Sage www.healingherbals.org

And her profile reads
I am a 40 something woman who loves herbs, writing, making products and hearing how they work, reading, and learning Everything I do, I have to keep in mind, that I really do have rheumatoid arthritis, fibromyalgia and disc deteriation, as much as I would like to forget those things. This is the first year my 13 yr old will be attending public school, so all my reservations and excitement may come out in words!! I believe in gardening, composting, buying and eating locally, sustainability, & urban homesteading. I love nature (except biting things !) the moon, running water, the wind and all things living. I try to live the way I want to be treated.

She does not have a picture up yet, BUT ... I have pictures :)


This, is Pam with her VAST array of products. I have a personal ad to the side that I placed. Not at Pam's request, but at my own behest, because I so firmly believe in her products. They are great! Many of them were developed when I called Pam and said "HELP! I have this need!"
The acne was developed for my son Samuel ...but alas, we cannot tell you how he likes it, because ... the kid won't use it. He won't use a two step process, so he has yet to find anything 'that works' ... yes, Pam, you may strangle said nephew now. However, younger nephew of hers, SWEARS by her acne product, and rarely has more than 3 pimples ... and he uses it faithfully. Samuel's acne is bad enough to go to a dermatologist. (however, I REFUSE to take him to a dermatologist until he's tried to do over the counter or Aunt Pam's stuff faithfully!It's not TRULY bad enough to go if he's not TRIED to take care of it.) So, you be the judge ... 3 pimples with treatment ... acne without it ...hmmmmmmmmm

ok, this was supposed to be an introduction to her blog, not an advertisement for her products .. i could go on and on and on about her pain salve, her healing salve (I describe it to friends as a cross between ... neosporin and hydrocortosone cream ...if you'd use one of those ... you can use this!)

Back to the pictures ... this WONDERFUL Portrait! was taken by my nephew of Pam and her brother, my husband, at either our house dedication or the house warming party last November. He changed the background to it, to give it a portrait type background.



I don't have any pictures of Pam and I ..however, I'm sure at our renewal ceremony in December, I will get one. This time, Pam will be at our wedding ...unlike last time ... no one was at our wedding ... Pam was on our honeymoon (it was at her house) but she can't come on this honeymoon!

So, please, go visit Pam's new blog, and give her a warm welcome. And then, go visit her website for her products and if you're interested (you should be!) BUY some! You will not be let down.

Personality Plus (or in hiding as the case may be ....)

Hat tip to my friend Jeff for this gem .... telling me what I already knew ...

The test says I'm an introvert! How dare they call this homebody an introvert! hmmph!

Important information!

http://illnessministry.ning.com/video/video/show?id=847406%3AVideo%3A5

Double Crush

Don had an EMG last week. The news was crushing to say the least. They wanted to find out the cause of his pain and numbness since he'd been in the hospital ... and they wanted to find out if maybe there was some carpel or ulner(?) tunnel nerve going on. Maybe some neuralgia.

What they found out was that it was polyneuralgia ...and that the damage was double crushed ... at the neck, the elbow, and the wrist (depending on the nerve).

The nerves are permanently damaged, and decompressing them, will not make a difference. They will not get better.

The doctor, today, was quite discouraged. He said that it frustrated him, because, if it was his brother, he'd be scared, because his scoliosis is 'messed up, really messed up, nightmare messed up'.

This is really the first doctor to talk to us in REAL terms.

We are going to check out a Dr. Lenke in St. Louis. The orthopedic surgeon suggested that we get copies of all his xrays, his MRI's, EMG's all his reports, lung function tests and write him a letter ... and just say "can you help?" So far, Dr. Lenke is the only surgeon we've found that will even approach the type of scoliosis that Don has. (if anyone knows anything about him ... please please please post or email me!!!!!!!!!!!! good or bad ..or indifferent, even if it's just to say, yeah, I've heard of him!)

As for me, I'm exhausted. I've been going to my therapist week after week .. and she looks at me and sighs ... I will have to tell her next week though that ... really, aside from the Don issues ... the other medical stuff we've faced this year ...really aren't that unusual. I'm always tired. I'm always hurting. Nothing new here. I just was getting more rest because Don was doing more ... and helping a lot. So, I'm really not any sicker.

I think my life overwhelms her at times. She's going to have to get over that. I need her help to get beyond my issues ... and to do that, she's going to have to get beyond my current every day crisis' that seem to happen every day. Those have been on going for 18 years ...they seem like a big deal to her ...but for me, they are par for the coarse ... I realize that concerns her ... and that she lives with chronic illness herself ...and that she had a mother with chronic illness ...but ... for me, it's just her times 3 ... so ... big deal ... it's my life, my cards I've been dealt. I need to deal with what's caused the eating disorder ... the day to day junk ..is always going to be there. If she tries to deal with that first ...we'll never get to what's underneath.

The boys started school already last year. My oldest is a Senior, and my baby is a Freshman!!! Geesh ... time flies. It just wasn't that long ago that I took my son to kindergarten at Little Light House and watched him toddle into class with his back pack ... with his big eyes ...and those glasses ... and that huge smile ... and now ... he's in high school! Where, did the time go?

Psalm 23 and the summer of 2007

1 The LORD is my shepherd; I shall not want. 2 He maketh me to lie down in green pastures: he leadeth me beside the still waters. 3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake. 4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. 5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. 6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.


1 The LORD is my shepherd; I shall not want.

The Lord, has guided me this summer. When I needed support while Don was in the hospital, I was not alone. Our finances ... instead of being challenged, were just fine. (we even came out ahead!)

I knew, that I had many people to call if I needed to ... that would come to me 24/7 for the entire 45 days. The issue wasn't, would I have someone, but rather ...who should I call? I made many calls during that time period ... and I still didn't call everyone I could have called.

2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.

There have been times that my mother has been in the hospital, or that I have been ... and the care has been; shall we say - - less than adequate. It felt unsafe to leave my mom in the hospital alone.

This time, with Don, not one time did I feel like I was not leaving my husband in good hands. I could go home to rest, and sleep every night.

3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.

More than once, I felt like I could not go on for even 5 more minutes. All it took was a prayer, and I had a sudden realization, that God was with me... regardless of how bad it got ... no matter scary it got ... with just a "Lord, I'm tired" I would instantly know, HE was my strength.

4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

This, was the theme for the summer. I have never been so aware of how true this Psalm was actually until I actually spent a few days, wondering "would my husband make it?" "Will I be a widow?" "How can he leave me now?"

And yet, with all the sadness, and concern ... there was an overwhelming sense of peace. A Peace that cannot be explained.

Don and I have always had slightly differing opinions on what to do for 'living will' situations. I've never really known if I could go through with his wishes. Yet, we'd talked about it so much ... I knew exactly what to do, and when ... what to agree to, what to question ... and when we had the discussion with the doctor of "IF this doesn't work, what measures need to be taken?"
I was able to talk to them, calmly, and with assurance that I knew what my husband wanted ...and that I would be able to follow through, with God at my side.



5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.

There were a few situations that I had to stand and advocate for my husband. They, were not enemies, by any stretch of the imagination. (well, wait, when he got home I guess we got into that scenerio since we've had to fire TWO home health agencies!) I was able to do so, with assurance that I knew what I was talking about. I knew that God gave me enough assertiveness to get through the situation. More than once, my husband became confused, questioning what was going on, frustrated and angry ..and I was able to keep the peace so that they did not become enemies.

This, is not, in my personality. This, was through the prayer, and the guidance of my Shephard that I was able to do so.



6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

We dedicated our house to God when we got it. It was such a wonderful thing to bring my husband home! To see him now walking on his own, using the walker at times, and not at others ... the oxygen not being constantly on (which is ok)and seeing his strength return bit by bit, day by day ... it is good to dwell in this house with my husband ... and to call our house, the house of the Lord.

Antiquities

So, Yesterday, I took my youngest son, my BABY up to the high school (sort of, 9th and 10th grade only in the school) to pick up his schedule.

Today, I took my oldest son, who is still my BABY, to the other high school (11th and 12th grade only) to pick up his schedule.

My youngest is a freshman, my oldest a senior. I, am now the mother of 2 high school students! *shock*

I then, wanted to get an appraisal on my kitchen table. I have a very unique kitchen table. Solid Maple, and my parents bought it at an antique store when I was a year old. It's not a normal table at all, round (not oval) and it is SOLID maple. Heavy and beautiful.

So, I stopped at an Antique store, it was obvious that she didn't have furniture, but I thought she might know who could do appraisals (the answer was a *no* ...what????)

My son, just found a new hobby in life. Antiquing! He loved the history ..and he found a lot of little things that he loved. One, he collects hats, and he found an old, spanish, wool bull fighters cap! He can afford it after he gets his allowance.

The other, is, he likes to collect military stuff. Doesn't matter what branch, and it can be a pin, a pen, a bracelet, arm band ...doesn't matter ... he loves it. Well, he is also a HUGE M*A*S*H fan. We walked into the second store, and they had an old Army Jacket, obviously real, with the name "Pearce" on it (obviously, it's Pierce in MASH, but hey! Close enough for government work!)

Turned out, that for pants and jacket, they only wanted $5!!!!!! The guy was discharged in 1964 and passed away right after coming home from Viet Nam. The owner of his belongings does not want them ...at all ..and is just selling them! WOW.
So, he has them hung on hangers and hung on the wall right now till we figure out a way to display them.

The hardest part (as well as a fun part) was seeing my entire childhood in the antique stores! "We had these plates!"
"We had these glasses!"
"We had this mixing bowl!" (we HAVE THAT MIXING BOWL AND YOU WANT $35 bucks for it? I'm USING MINE ???? um ...er .. uh ... maybe not anymore!!!)
"We had this ..."

I think I said that about 100 times. I could have restocked my childhood kitchen from those 2 stores! What is my childhood doing in an ANTIQUE STORE???

I did see a few things I will go back and get. They held a lot of meaning to me as a child ...and ...well, to have something just like them ... will be very special!

Blogger Buddy!

I have a dear blogger friend. Cathy, she is quite the determined woman.

Last year, she participated in an exhausting feat of blogging for 24 hours ... 48 posts in 24 hours ... this year, even after living through the physical exhaustion (Cathy is not the healthiest person on the planet) she is doing it again.

This time, she's blogging for St. Jude's Children's Hospital.

While my friend's baby never went to St. Jude's ... it WAS considered. They were the ones who gave the final diagnosis of ATRT tumor ... and the reason she didn't go was because the doctor's here in Oklahoma City had been St. Jude trained doctor's. She would have gotten the same care at St Judes that she got here. The only difference being, she'd have been away from family and friends.

I can't look at the pictures of St. Judes, because they hurt so dearly. My friend's baby ... St. Jude's is working ... on finding a cure for the ATRT brain cancer ..but they've yet to do so.

Please ... help Cathy's Place, in finding her place in helping to prevent the future Teresa's and Kylie's.

Story Time

November 19, 1987, Don and I applied for a marriage licence.

Don, thought it would be neat to get married on our birthday, since we share a birthday. (November 21). I, however, did NOT want to get married on our birthday, and did not want to get married in November, since my first wedding had taken place in November, I thought that would be ... uncouth.

So, he almost had me talked into it, so we got the license. We were still looking for wedding chapels, and talking to the pastor of the church where Don was attending. We, had assumed, falsely, (and found out AFTER we got the license ...) that in Tulsa Town, there is (or at least was) no such thing as Justice of the Peace ..which was going to be our last resort.

I talked him into waiting till December. But our license was only good for 2 weeks AFTER we got it, so we'd have to get married on the first, second or third. We'd talked to his pastor, who agreed to do it. We had our best man and matron of honor lined up.

Then, on Monday, November 30th, we got a call, the pastor was backing out. We got 2 stories, we never figured out which was the real story ...it really doesn't matter ..one was that he was going out of town on an emergency. The other was this "besides, so and so is complaining that Peggikaye's been married before" (it was a woman whom I'd gone to church with before when I was married before. She also knew the whole story of me being left after 4 months, and it should have been annulled, not divorce! Granted, she didn't know WHY I was left, but she was aware that legally, we qualified for an annulment) So, they were this high donation to the church, high powered couple. We were this low income ... nothing ..and we think he just gave into pressure. That, is neither here, nor there other than, that is how we came to get to being married where we did.

So, Monday night, we've got just till Thursday to find where we can get married. We start to call ..chapels were WAY out of our budget ... we finally found one.
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Most people don't realize they can do weddings. I never knew that they did. Never have heard of anyone else getting married there either.

The Salvation Army Chapel.

So, we're supposed to meet our Best Man and Matron of Honor at 2pm on December 2nd at the Salvation Army in down town Tulsa.

Every girls dream.

When we left, we called our friends, and they were on their way. So, we get there, and the chaplain tells us that our matron of honor needs us to call. We were very confused ...but we called.

The best man had fallen on the ice on the way out to the car, and slipped a disc in his back. (he wound up being laid up for over 2 months!)

We, had no guests coming, there were no alternatives for witnesses. Now what? We had one day till the license expired.

The chaplain said that there were always 3 people on site at all times, they could be the witnesses, but first, he wanted to do some 'pre marital counseling'.

OK.

So, after about 45 minutes, he calls in the witnesses.

One guy was HUGELY obese ... could barely walk. He was homeless, but volunteered at the center and used their shelters.
The other guy, extremely thin, and was missing his right arm. A war vet, homeless, who also lived at the shelter and volunteered at the shelter.

These, were our witnesses. They stood beside us. They stood straight, and they smiled through the whole ceremony. You'd have thought, that we'd been life long friends. They knew, they were being asked to do something that was normally an honor bestowed on people close to someone's heart. They took their job of being witnesses to our marriage quite seriously!

We finished the ceremony, they signed their names ..we signed ...the minister signed ..and we all gave each other handshakes and hugs ...and Don and I walked out the door. Mr. & Mrs. Donald Eagler.



Married in a Salvation Army Chapel.

Don said "Wow! It's for real!"
I said "Who was my maid of honor?"

Twenty years later ... we're still married. I keep thinking of the show Bridezilla (although, not having cable, I've never seen an episode) and thinking how much emphasis they put ... and how little we had ..and yet ... the ceremony worked ... just as well (maybe better?)

So, on December 2, 2007 ... we're going to renew our vows. With all we've been through, the better and the worse ... the house, the sick kids, the health issues and the struggles in our marriage, we can't think of anything better to do.

This time ..we'll have a wedding. A little closer to the one that this girl ... and this girl dreamed about ...

Bravery and Elephants

"It was the hardest week of my life. It was the best week of my life!"

Those were the first words out of the mouth of my 17 year old when I picked him up from the church today after he'd spent a week as a CIT (counselor in training)at church kids camp.

When we got into the car, he said "There is nothing more incredible in the world, than 150 kids singing praises to God"

Those are words ..that this mother was very proud to hear.

I'd spoken with the counselor he'd worked with. I'd asked Doug how he'd done, and his first words were not what a mom wants to hear "he's great! He's fantastic! What a kid you've got there!"

But rather "It was a growing experience!"

uh oh!

Then, he pulled me aside and told me the story, which, will remain between myself and Doug. Suffice it to say, while it was the best week in my sons life, it was, a hard week ...and he grew by leaps and bounds!

My son, has some deep fears ... they are a result of living with OCD. One of the worst ... heights. Last year, proudly watched him temporarily conquer them in order to participate in building the house as he worked on the roof. White as a ghost, and often sick to his stomach. Many times shaking. He got up there with his friends and the other workers. He did it. As afraid as he was ...because he wanted to build his house.

Well, his counselor took him out to a rope climbing course, not knowing his fears ...and not knowing he had OCD talked Samuel into climbing the ropes. Samuel, had a melt down ...and ... then Samuel swung from the ropes to get down!!!!

I'm sitting here with tears in my eyes wondering how many times I've chosen to climb down the post rather than swing through the air. I'm proud of him. Very.

He really really enjoyed camp. As hard as it was ... he really enjoyed it. Watching kids make a decision for Christ, watching kids choose to work hard to win the 'golden plunger' to get the cleanest room. Watching kids mature ... and watching some maturity in himself.


Then tonight ... my husband and I, wanted to say thank you to some friends who'd been so helpful and supportive of us during our stay in the hospital. (um, er ..HIS stay in the hospital rather). So, we invited them to eat with us at the Elephant Bar Restaurant.

Now, after I got over my confusion ... in town, there is an Elephant Run ... I never knew that Elephant Run was a bar ... I always thought it was a restaurant.

So, when my friend sent out the email invites for us ... I freaked ...she sent out the invites to Elephant BAR ... OH NO!!! ELEPHANT RUN!!!!!!!

So she comes back and says "YOU WANT TO GO TO THE BAR?" (kids were invited, church small group event as well as thank you event!)

NOOOOOOOOOOOoooooooooooooooooooooooooo

So ...then I find out that Elephant BAR is the restaurant ..and Elephant Run is the bar ... go figure. I'm still confused.

Ok, so we go tonight ...and there were 20 or so people who showed up. It was absoluetly incredible ... lots of fun ...and loud! We didn't get to speak with everyone, but everyone had a wonderful time. It was nice to have everyone together ...and it was a great time. It was nice to look down the table and see "these people all came ...and helped us, repeatidly!!" How wonderful to know we are truly loved ..and we truly love.

It was also good to see them out of the hospital. *smile*

Tagged

I have been tagged by two friends ... YMX buddies as well as 'invisible friends' *grin* So, I get to kill 2 birds with one stone *BIG GRIN*
So, for Patti and Deneice ...here goes :

Rules to play:

1. players start with 8 random facts about themselves.
2. those who are tagged should post these rules and their 8 random facts.
3. players should tag 8 other people and notify them they have been tagged.


1. I played volleyball and softball and track and field in high school.

2. I played the clarinet ... but I was awful. My nickname in band ... was Jerry. As in the mouse ... from Tom and Jerry. (SQUEAK!!!!!!!!)

3. I can't stand the color purple!!!!!!!

4. I have discovered that I think I like cats more than dogs. My 5 year old neice was here the other day and she was trying to make my cats play with her. They, of coarse, would not be forced. She informed me that I needed to get a dog who would play no matter what. Dogs, were more fun, playful and less boring.

At that point, I realized that I actually liked the quietness of my cats.

5. I love to cook. I don't like to eat. At all.

6. I love to be alone!

7. I love old hymns and new praise and worship music.

8. I don't like to be the center of attention ... at all.

Tag 8 people ... hmmm I may have to think about that for a day or so and get back to it.

Brain Drain



When people hear the term "Brain Drain" they usually think of one of two terms ... they either think of economic terms ... Wikipedia's definition is as follows:

Brain drain can occur either when individuals who study abroad and complete their education do not return to their home country, or when individuals educated in their home country emigrate for higher wages or better opportunities. The second form is arguably worse, because it drains more resources from the home country.

This phenomenon is perhaps most problematic for developing nations, where it is widespread. In these countries, higher education and professional certification are often viewed as the surest path to escape from a troubled economy or difficult political situation.

Or ...they think of spending mind numbing hours doing nothing but playing video games or reading trashy romance novels or watching the 'boob tube' that does nothing to build the brain ..thus draining it of any viable intelligence ... no exercise ... intellectual or physical ...nothing gained ... nothing expended ... nothing. Nada. Zip. Zilch. Brain Drain.

I've been thinking of the term Brain Drain lately in a different way ... I've been intentionally looking for ways that I can, in fact, practice 'brain drain'.

*blink*

What? Why? Who would do such a thing? Aren't we as American's working toward NOT being Brain Drains? Being productive ... etc etc ... yea ...but ...

I need rest ... however, when I rest ...and just rest ... I go nuts. Absolutely nuts.

So, then I thought of what I needed to do ...was ACTIVELY REST! (stop staring at me like that Moof and Cathy!!!!!)

Let me explain.

I need to let my body rest and my brain destress. But ...just 'resting' would often cause me more anxiety than the *resting* was doing me good. Now, I know many who read this will actually identify with that concept *cough* (see who I told to stop staring at me!!!)

I started to picture a drain in a sink ... it stops the stuff from going down the drain that you don't want to go down the drain, but allows the water to go down to the sewer. Suddenly I realized ... I needed activities that allow me to BRAIN DRAIN.

I need things that allow the stress, the useless information to be filtered from my brain, while hanging onto the information, and the important stuff ... and sometimes ... sitting up at the computer, or going for coffee with a friend, sitting and doing puzzles, reading a book .. and sometimes sleeping ... is in fact doing the Brain Drain activity ... it just depends on what is needed at the time.

Let the junk go down the drain, zone out .. relax ...and don't worry about the
'supposed to be's' (I'm supposed to be sleeping ... I'm supposed to be folding laundry ... I'm supposed to be writing ... I'm supposed to be laying down ... I'm supposed to be ... I'm supposed to be ...) talk with a friend, IM with a friend, read a blog, write a blog .. write a poem ... do what the brain says comes naturally ...

then, when I am relaxed, the stuff that's left in the drain, can be better sorted out rinsed off ... and put where it belongs.

I do hope this post made some sense .... or maybe it needs to go down the drain! ;)

We, are home at last.

They did not do the bed. Medicare and their rules *rolling eyes*. I guess it's still something being considered for future ...

He has his bi pap machine, walker, and oxygen.
There is the funky machine that will generate the oxygen for his bipap machine, give him oxygen in the house AND fill his portable oxgyen tanks.

He has a 4 wheel walker, with a seat and brakes. It's midnight blue, which, really, looks purple in the wrong light. It, is just wrong!

Tomorrow, home health will get here about 10 am. He will get home health 3 times a week and PT and OT 3 times a week for 2 weeks, then we'll see. He follows up with PCP, neuro and pulmo ... PCP in 1 week, neuro and pulmo in 2 weeks.

The boys decided to spend the night at their friends house. We have mixed feelings about that. It is nice to have a quiet evening at home, just the two of us, but part of us are going "your father just got home!!!"

oh well, such is the life of parents!

Home, Sweet Home!

42 days ... end in sight.

It's been 42 days since Don first went into the hospital. That's 6 weeks.

He was taken by ambulance to the ER, then admitted to the med/surg floor (7 tower) from there, he was moved to the ICU, from there, he was moved back to the med/surg floor, 7 tower again. Then he was moved to 9 tower when they closed 7 Tower down for remodeling. Then, he was moved to the Long Term Acute Care facility (L Tac) where he spent longer than I can remember ... and from there, to rehab.

We have a discharge date. Friday! July 6th. Our Independence Day!

Everyone keeps asking me if I'm ready ... will I be ready. Uh ... YES!!!!!!

Yea, I know caretaking at home will bring a whole new set of issues, but he will be here ... and I will wake up in the morning and see HIM, and I can walk into another room and see him .... and we will talk, and laugh and cry and argue at will ... and there will be no miles ... or phones ...

I can't wait to see him sitting on the couch ... with the kitty cats in his lap, just sitting there watching a show I have no interest in while he bugs me about spending time talking to my invisible friends on the internet ... and we smile, just because we're together ... our family, all in the same room. Changed forever by the last 6 weeks ... but still, together.

Held

A couple of years ago, a song hit the christian radio airwaves, "Held" and it took the airwaves by storms. It rang true for so many people. Natalie Grant had a friend who lost their 2 month old son and as she saw their grief, she realized that we, as Christians did not really know how to deal with grief. Some of us expected to be given a pass on grief and pain simply because we have believed in God.

Many get through their trials, and become much stronger and are able to say ...this, is what survival is. This, is what it is when God see's you through a battle.

I think, the phrase in the song that struck me the most when I first heard it, was the "we're asking, why did this happen to us, who told us we'd be rescued"

The mentality of there will be perfection after coming to the cross ... no pain after coming to Christ, that He will heal our pain (instantly is the given implication) and that even if the healing is not instant, there will be no more grief experienced to add on ... and the reality is ... God never promised us that. He promised, to hold us, to see us through this harsh world that has it's unfair grief ..and to get us through the valley of the shadow of death and to bear us up, when the battle wages on longer than we expected. He never promised to take us out, only to be with us.

In Isaiah it talks about the fire and the flood ... God promised that we would walk through the flood and it would not over take us, and we would walk through the fire and not get burned ... He however, did not promise that we would not get hot, and that we would not get wet.

When my friends baby died 2 months ago yesterday, I heard this song right as I got into my car after the funeral. As I was reminded by God, that He was with me in my grief, and my pain, and my friends deep deep grief ... and in that special timing ... 2 years is too little, but that this is what it means to be held ... I knew that inspite of my broken heart, God knew. I knew he was there.

Yesterday, I was thinking about what the song meant to me in my current situation. So, I thought I would post the words ...and below, I will post what it means, for Don and I ... and where we are now .....

Held
By Natalie Grant

Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would Take a child from his mother while she prays
Is appalling.


Who told us we'd be rescued?

What has changed and why should we be saved from nightmares?
We're asking why this happens To us who have died to live?

It's unfair.

Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life And you survive.
This is what it is to be loved.
And to know that the promise was When everything fell we'd be held.


This hand is bitterness.
We want to taste it, let the hatred know our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life And you survive.
This is what it is to be loved.
And to know that the promise was When everything fell we'd be held.

Bridge:
If hope is born of suffering.
If this is only the beginning. Can we not wait for one hour watching for our Savior?

(Chorus) This is what it means to be held. How it feels when the sacred is torn from your life And you survive. This is what it is to be loved. And to know that the promise was When everything fell we'd be held.


Don and I had known for years that eventually his body would decide that it had had enough. That the twisting of the scoliosis would decide to tear apart his body. We'd done the smart thing, and talked, and planned ...and we did the smart thing and acted like it was never going to happen. You simply cannot live as if it's going to be over your head. The depression it would cause would be unbearable.

For the last 18 months, Don and I have had a wonderful marriage. A gift ... a second chance ... and now, everything's changed and we don't know where we stand, or where we are going. As we wait to find out what our new version of normal is going to be ... we sit, and we are Held.

What was sacred ...freedom, independence, breathing ... dressing ... Don getting up and going out for a cup of coffee on his own ...showering ... without someone driving him ... or helping him to get there ...walking ... mowing the lawn ...

Living a life .. in conjunction with a family, but independent of the family ... helping the family, supporting the family ... supportive of the family ... working together to help the family be a family unit, but not dependent on the family ...

That was sacred ... and now ... he will be coming home .. with medical equipment

A bipap machine
a walker
a shower chair
a grabber
a wheelchair
oxygen
an air mattress

The thing we don't know .. the air mattress ..what does that mean? Will that mean he'll need his own bed ... and that ... is sacred. What does that mean? Will it fit OUR bed ... or will it be required to have a hospital bed?

Everyone knows that the marriage bed is sacred ... will we even be sharing a bed? This is what it means to be held, when the sacred is torn from your life ..and you survive ... this is what it means when the sacred is torn from your life and you survive ... this is what it means ...

He will adjust to the walker, he will get used to needing a wheelchair some of the time, oxygen sometimes ..and the bipap at night. He will adjust, we will adjust ...
and we will be held.

He is here .. and we just have to know that we are in the palm of God.

What we once took for granted, is no longer our normal, and God knows that, and he will extend to us the grace and mercy that we need ...so that we know, that we've been held ...

A couple of weeks after he got out of ICU, I was reflecting back on that time, and scripture ..and I realized that I had indeed walked through the valley of the shadow of death ... and I realized that in that time ... I was filled with love, and concern for my husband ... and I was NOT ready to loose my husband ... but there was a calmness, and a lack of chaos for me ... and I was not filled with fear! I had truely walked through the Valley of the Shadow of death, and not feared the evil ... Because God was with me.

That was what it meant to be held ... and to survive.

It's been over 5 weeks ... since he went into the hospital ... it will probably be the end of next week before he comes home ... and with a whole new lifestyle of equipment ...This is what it means to be held. How it feels when the sacred is torn from your life And you survive. This is what it is to be loved. And to know that the promise was When everything fell we'd be held.

not much today

Nothing much to update today,

I tried to wake up this morning and my body would just not wake up. I was soo drowsy, I just kept falling asleep.
Don called to see when I was coming in, and I told him I couldn't seem to wake up, and he and I agreed I would just sleep till I was slept out.

When I finally woke up, I realized that I was sooo hot. I thought I'd turned the a/c off, or the a/c wasn't working. So I went to check the a/c.
Nope, a/c is just fine ...and blowing.
I swallowed ...and realized ...whoops, the throat hurts.

So I took my temperature ...101.2. Crud.

I called the doctor, they called back. Under normal circumstances, they'd make me come in, but given that they'd just stuck me on prednsione dose pack for the lupus/MG flare, and that I've been exposed for the last month to who knows what around the hospital ... and I'm on Cellcept (immunosuppressant) even if it IS a virus, it could go into a secondary bacterial, and Don doesn't need that exposure. So, stay home till I'm fever free for 24 hours ... and take the antibiotics.

*whew* the last thing I wanted was to drag myself to the doctor's right now. 99 times out of 100, I would cringe out of a doctor giving antibiotics without an exam or proof of bacterial infection. This, is the 1 time out of 100 that I was really hoping they'd just go around the standard rule.

Ya know, I *ALMOST* on gut instinct asked for a script of antibiotics when she started me on the high dose prednisone last week. I've never started on high doses of prednisone without getting sick. I thought about it, and said I promise to let you know if I use them. And thought "nah, that's absurd"

On the Don front.

Sigh. He called last night, they'd come in to weigh him ... he's down to 90.4 pounds. He was 98 lbs when he checked in. They have him on a high calorie, high protien diet and he is eating. I guess the physical exercise is pushing him and burning more calories in trying to build his endurance to gain back what he's lost?

The pulmonologist is trying to give his nose a break and seeing what happens when he's off oxygen when he's just laying down without activity. The nurses, the Respiratory therapists and PT's are not impressed. He was at 98 to 100 on oxygen, and just laying down doing nothing dropped to 94.

However, he's had bloody noses for the last 3 or 4 days. So, at least for a couple of days, as long as it stays at 94 ... we're going to give his nose a chance to heal.

So, today, I'm home, much to my husband's dismay ... :( (but you've been coming up not feeling good for the last week!!) trying to get healthy enough to go back up again and not infect him with what ever has invaded my body.

I did make a couple of phone calls to say "he needs company!"

Wow, that was longer than I intended.

A Child Alone

It was 1959, He was 3 years old and would not be 4 until November 21st. The summer was hot ...He was the middle child of 5. His mother had given the oldest girl to her older sister to adopt. Not an unusual happening for that generation when a pregnancy happens when it shouldn't and you wanted no one to know.

So as far as the kids and neighbors knew, he was the second to oldest. His older brother was 2 years older, his younger sister 2 years younger, and the baby was a year younger than the sister. Just a baby. Near by, the Grandmother lived and helped in the raising of the 4 kids, and the older sister and her husband also lived, on the same street, raising their adopted daughter, who was the birth daughter of the boys mother. The father, was in the picture as well.

He became sick and was taken to the doctor. His mother heard the words that no mother ever wants to hear ...and at that time, a word that struck fear into the hearts of even the bravest of souls. A word that today, just means a simple 'well baby' trip to the doctor. But back then, it could mean the world would end ... it certainly meant the world as the family knew it was ending.

Polio.

They lived in a small town in Northern California, not too far from Sacramento. The city was too small to handle such a sick baby, and quickly, they transfered the three year old to San Fransisco's Children's hospital.

Just 9 years earlier, it had been a center for the polio epidemic, but polio was on the decrease, thanks to the vaccine. This child, had missed the vaccine. It was being given to school age children in his community, and he was not quite 4.

His father, unable to handle the pressure of 4 kids and one of them terribly ill, just disappeared from their lives, abandoning them all.

His mother took him to San Fransisco, where he was placed on an iron lung. 3 years old, and in an iron lung, in a hospital far from home ... with strangers ... and away from everything familiar.



His mother, having 3 other children at home, decided to leave him in the care of the strangers at the hospital. I've tried and tried for 20 years to see this through her eyes, and no matter how hard I try, I simply cannot. I've had sick children ... I've had very sick children. I've sat in the hospital with a child that was sick with pneumonia. I've sat in the hospital with a child with meningitis ... and while I don't know what it is like to have a child with polio, I do know what it is to have a sick child.

I do know what it is to have to make the choice between the child at home and the child that is sick ..and I don't get it. There was an Aunt and Uncle and Grandmother to step in for the 3 healthy children back home ... and there was no one in San Franscisco but nurses and doctor's for the three year old boy in the iron lung


Over the next 6 years, the child would spend half of his childhood going through surgeries, and therapy ... in and out of San Fransisco Children's ... spending birthdays and holidays with nurses to celebrate for him. His playmates were the other children in the ward, and his teachers were the nurses.

I've been asked by several people why I go up to the hospital for 5, 6 8 to 10 hours a day to sit with my husband ... why I'm wearing myself into the ground. He's a big boy ...he can entertain himself ... most adults do, and get by with visits. They remind me that I've been in the hospital 26 times and I don't need this kind of care ...and for some I just say I know ... and for others I tell them about the three year old left alone ... in the iron lung



The six year old who had back surgery, to fuse his back 2/3 of the way ...or the 10 year old who had nurses to throw his birthday party.

I see his eyes light up when I walk into the room and his face drop when I tell him I'm going to leave. If I had it physically within my body, I'd be with him 24/7.

He may be a 51 year old man, but his soul is a 3 year old who's been abandoned once again ... and he's been there for a month today ..and he knows he has a few weeks ahead of him.

more

Sometime later next week, Don will be moved from the L TAC to the rehab hospital.

The doctor said he will be there for at least two weeks, if not 3 to 4 weeks.
In rehab he will get more intensive therapy to increase his endurance.

I'm exhausted, and weary.

I've found myself pulling into a hole ...and not calling people or reaching out. I've not even been to church in weeks.

I had a conversation with my pastor a couple of years back asking him why we have to depend on our brothers and sisters in Christ, if we know how to recieve comfort from God and he gave me an answer that just frustrated me. I know now that I made a mistake in not learning the lesson he tried to teach me.

As it is, I don't know how to say to those close to me ... help. I'm alone, and scared and stuck. The people I'm telling what's going on are out of town, out of state ...and across the internet. I text messaged my pastor (former pastor) and told him that I'm isolating a little ...and within 20 minutes, I got a phone call from my dear friend Wanda (from Wanda's Wings) and she said "how ya doing?" I said fine her response was "Pinocchio"

She'd been called and told to check on me. Whoops.

Our youth pastor warned me of being careful to not get caretakers fatique ... I'm don't know how you know when you have caretakers fatique ... but I know that I was glad to see the kids come back to camp, but I find the idea of going to church almost terrifying.

I think the questions of "how are you, how is Don" will be overwhelming. I know that I will be hugged by people I don't want to be hugged by ...and I know I will have to repeat what's going on more times than I can count ... so it's easier to just not go. The more I stay away, the easier it is to just not go.

So, here I am, hiding in my home and in my husband's hospital room, updating people only through on line measures ... and not making calls to friends to say 'hey! I'm lonely' or going to get a cup of coffee with a friend or go do something interesting ... and I know that all of this is draining me and the more I do it, it's all I can do.

What is feeding me? Nothing, literally nothing....not spiritually, not emotionally, not nutritionally. My food intake has dropped to little to nothing ... a few bites of fruit or veggies ... and every third day or so I might eat part of a real meal.

I see myself sinking and part of me feels like it's ok. When Don is ok, I'll pull myself up. The other part of me just wants to sit down and say I've fought for so many years I don't want to fight anymore. The other part of me just wants to say ...someone needs to fight for me ..only I don't want to reach out to anyone to tell them I just don't have any fight left.

Blessed Be The Name

Blessed Be Your Name
by Matt Redman- - -

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

4 weeks

Today has been 4 weeks since Don went into the hospital.

What a month it has been.

I am exhausted, and weary at this point. I'm unsure of what we're facing in the future ...how much recovery he'll gain ...and what that means for us as a family.

He's lonely at the hospital, and I'm needing to be there with him for most of the day. He says I don't, but then when the idea of me leaving, or not come in until later in the day comes, you can see the anxiety build.

What we know at this point: he will be on oxygen from now on. They will not be weaning him off of it ...at all. It will be a 24 hour a day thing for life. He will be on a bipap from now on.

They are discussing the possibility of ordering a wheelchair. They will be ordering a walker. How long it will take him for him to be able to ambulate without the walker, we have no idea. We also don't know if he will. We're in limbo at this point. We don't know what our new version of normal will be, and we don't know how long it will be before we know what our new version of normal will be.

The nurses, PT's and OT's are so excited because he can do so much more than they'd ever expected him to do. They don't understand our discouragement, frustration and fear. They just don't seem to realize that he really was NOT sedentary ...and that getting used to the idea of having to live on oxygen, and having to get used to the possibility of needing walking assistance ...and wondering how long it will be before he can just decide to go out by himself and get a cup of coffee ... IF he'll ever be able to do that again.

On the mom front, when she fell and broke her finger, the day after Don was hospitalized (no, not the broken hand & ribs, that was a few weeks before this) she'd also injured her knee. She had an MRI and today we got the results. A piece of bone had broken off and is floating around the knee cap. The ortho doc gave her a shot in hopes to settle down the inflammation. Mom is not willing to have him operate to take the bone out right now. I can't say that I was cheering for her to opt for the surgery option at this point.

The reality is, she needs that knee replaced and he is probably going to try to talk her into just doing the whole thing when it's time. It's going to take quite the talking with as much trouble as she had with the first knee replacement.

Monday she went to the PCP to talk about her falling and her memory issues. I had to drop my kids off at church for church camp and was not able to be there. She knew this, and immediately called me and asked to have Samuel come over to help with some chores (um ...hello?).

I see the PCP tomorrow at my psychologists request ... because ...in her words ... I look awful ... lupus rash, low muscle tone in my face, sighing between sentences ... in other words: autoimmune mess. I will ask PCP about her impressions then.

I will also most likely get a prednisone dose pack for me.

We have no estimate of discharge yet, it's not on the table yet. So it will be at least next week, if not the following week, they are not in a hurry. He has a long way to go before he's ready to come home.

Father's Day

Today was Father's Day.

It's the first Father's Day I spent with my real father since I was 13. He's been in town for the last week. I only spent about 30 minutes with him, he came up to the hospital to see Don and the boys and I. My sister's family had been passing around a respiratory infection ..and my Dad caught it, so he was wearing a mask. I'd suggested (strongly) that coming up was not a good idea, but he came anyway, insisting that he wanted to see Don one more time. He told Don on the phone that it was just a sore throat. Then when they got ready to leave the room (they leave town tomorrow) K (his new wife) said that the night before he'd been coughing so bad he'd not even been able to lie down to sleep and had to sleep sitting up. I, was not amused. The mask had better have been enough to keep from passing the germs on. It's obviously highly contagious because it made the rounds through my sisters kids, then onto my Dad ... it's the last thing Don needs and I take strong drugs to suppress my immune system (Cellcept and prednisone).

A friend came by to see Don, and brought her 2 children. They'd used their Bible bucks at church to buy Don father's day gifts. They don't have a father in their lives. They adore Don, and they look to him for leadership and as a male role model. They love him dearly. It touched Don more than anyone could have imagined. Including my own kids. They were so proud of their little friends, and so happy to share their Dad with the kids ... it was really special.

Don has a particular gift he wants ... and it's specific, and he and the boys are supposed to get it together. So, we were waiting till he got out of the hospital so they can go get it together ...rather than me messing it up and getting the wrong one. (tecno gadget MP3 player). The boys were just tickled Daddy got to open something on Father's Day. Don was worried they'd feel bad ...and they were so relieved he had something to open.

Don, is getting very depressed over his lack of progress in gaining strength and mobility. With no permanent answers, and the possibility of this new lifestyle change ...dependency ..adjustment ... it's hard. My heart is breaking for him. I'm so glad that I've made the choice to stay with him this week. I know he said he wanted me to go to camp, but emotionally, he really could not have taken me being gone this week.

I'm really getting weary ...and today has been particularly hard. I was walking down the hallway of the hospital and just got suddenly angry at my step father for not being here ... for leaving me when I was 14 ... I need his support and unconditional love right now. I need those strong loving arms right now that will tell me that all will be ok ...that regardless .. he's there ...only ... he's not ..and he never will be again.

Tomorrow, my mom goes in for an evaluation with the PCP, again, for her frequent falling (did I post that the day after Don was admitted to the hospital that she broke her finger? ... the forefinger on the hand with the cast ...that made 5 bones in 9 weeks that she'd broken) and she's also going to include her jerky movements, her inability to complete thoughts and her forgetfulness.

I'm supposed to be there, but I have to take my kids to the church to take them to camp. I can't be in 2 places at one time ... I had to make a choice. As much as I've been fighting to get my mom some help, I really need to take my kids and to be able to hug 'my girl's' and explain to them why I'm not going to camp.

The PCP appointment is to get a referral to a neurologist ...so hopefully I will be able to accompany her on that appointment. In the meantime, maybe me not being there to interpret what's going on just might do more good in getting a diagnosis than if I am there??? Maybe if they can't follow her, they'll get what we're dealing with. Maybe I'm just wishful thinking. Right now, that has to be left in God's hands.

I wish I had better news ... Today (Father's day) is 26 days in the hospital. We're both so weary and trying so hard to not be weary. I think, if we had some answers besides "we'll know more in 6 months" it would be so much easier.

Hiatus

Today, I just made a really hard phone call.

I called a friend, who happens to be an elder of our church, and a member of our church transition team, and told her that I needed to take a hiatus from all my responsibilities at church.

From the worship team secretary, to youth group counselor & youth group sunday school assistant ... ministry team representative for worship team & children's ministry ... small group leader.



I don't even know what all I do ... I just do it.

Right now, we have no answers ... they don't know if the weakness & nerve pain in his hands and arms & legs that are interferring with his functioning is because of the degree of combativeness that he had ...and the scoliosis and the displaced spinal cord and foramen ... and therefore damaged while he was fighting us ...

or were the nerves just bruised and will they heal ... it could take up to 6 months before we know if he will regain any of the use of his arms and legs enough to know.

Right now, he can't take care of himself. He can't stand up on his own, he can't dress himself, and he has to have help to get up just to go to the bathroom. He even gets exhausted feeding himself.

He is still in need of oxygen just to exist in bed and to do what he is doing.

Today was day 25 in the hospital ... we're both on the weary side.

Updating on a rollercoaster

Today, I went into the hospital to see my husband as usual. When I arrived, the physical therapist had just cajoled him out of bed to work on his endurance and taking a few steps. He'd really not felt good and had to be talked into it, but he was.

He walked about halfway down the hall with the walker and the PT supporting him. By the time he got there, he was almost angry. I can't say I blame him. 21 days today. And he's been couped up and tied up to machines, and he's just facing such an unknown.

The doctor came up while he was trying to get walking again. She told us the news that Don most did not want to hear. That the existing problem ( C5/C6 movement, with exposed spinal cord) was worsened, significanlty. It's now the C5/C6 & C6/C7 and the spinal cord is displaced with (?iffy on medical facts here, not sure I fully understand) the foramen exposed as well.

This, is what's causing the extreme pain and weakness in his arms. Which, for him, IS his mobility. His arms propel him while he walks, they lift him to a standing position and help to stablize him. But at least he's going, for now. The pain from the spinal issue is causing significant pain in his hands though, and gripping the walker is quite difficult. He dropped his fork several times today and could not lift the cover off the food with his right hand. The loss of control has us very concerned.

If the EMG is right... the damage is done, and as long as the nerves are compressed in the neck, there is nothing that can be done ... and well, with Don's repsiratory system, he's not a candidate for the surgery.

They also think the C5/C6 exposure is what is increasing his breathing difficulties. The C5 is what effects the breathing & swallowing muscles.

So, once again, we are waiting to see ... what's next and where we go from here.

Interpretations

I thought Don was doing so well ... and today, a reality check. We're waiting to get him into the Long Term Care facility ...and one doctor is holding it up. We're not sure why. We find out today, it's because he doesn't come over there daily ... the specialists just come over there occassionally ... once or twice a week.

Don has to be stable enough to not need HIS care daily. Oh. So, Don has to become stable enough to move him to this long term care facility for Critically Ill patients .... oh.

Reality check time. He's better, he's significantly better. He's but he's still very sick.

The doctors are a little frustrated with him wanting one thing one day and then not agreeing to it when they go to do it. Either they're not listening, or they're not understanding that they haven't made themselves clear to us. They haven't explained to us how the Bipap machine works ..and why he can't be on oxygen for 4 hours and then on the Bipap for 2 hours, off for 4 hours .. and only today was I told, it can't be done that way ... I still don't know why ...just that it can't. They are seeing him as non compliant, and we are not understanding and asking for explination. The really frustrating thing ...this is my most beloved doctor in the whole world ... I love this man dearly and when Don was so sick and his partner was seeing Don (his partner is on vactation, so he is seeing him now) Dr. G saw me, gave me a hug and I just kind of fell and melted and started to cry, he let me cry and just held me.
We have a 10 year relationship ... and I knew his Mamma for 5 years before that. His mom had myasthenia and had it from the time he was a teenager. It's not like he doesn't get serious illness ... he gets it all too well ... and from the family side of it ...

Somewhere there is a glitch and I'm not sure where ... we do know he's doing medically right by Don, we're just confused. The poor hospitalist thinks that there is a conflict between us ...and doens't realize that we simply asked him the questions because we were unsure of what was going on ... No, we will always love Dr. G ... but we also trust him enough to ask him questions, either directly, or ask the person who's going to talk to him next ...to tell him ..these are our concerns.

But somehow, it's making Don look like he's not being cooperative ... I think the breakdown is happening at the Respiratory Therapist level ... instead of taking the time to listen to Don and answer his questions and find out for him what the doctor means ... they just say "well, you can refuse treatment if you want" and then hook him back up to oxygen and don't mess with it, or leave him hooked up to the bipap for extra time ...

This should change in the long term care ...

Rough Day

Today is a rough day.

They haven't moved him yet to the Long Term Care facility.

They did get him an air mattress so that it protects his skin and joints. It took them about 30 minutes and he was in a chair the whole time. It completely wiped him out, and 3 hours later, he still had not recovered.

His hours on the Bipap have been changed to 9 pm to 8 am, solid then from noon till 5pm. So he'll be off of it from 8 am to noon, and 5 to 9.

So, he'll have 8 hours a day off, and during times that he can visit with people.

He was hurting so bad today. His right arm is hurting and there is some numbness. He keeps having it jerk, almost like you'd see in some parkinsons patients. It woke him up 2 times this afternoon when he hit the bedrail. He is loosing some control over it. The doctors are aware of it, and are watching it carefully. It is something they will address in the long term care facility.


Today was a tiring day, for both of us. I don't know why we both felt kind of discouraged and tired.

I left the hospital a little early and decided I wasn't ready to face home ..and ran away ... I went to an IHOP and then called my friend Teresa, the one who lost the baby girl a few weeks ago. I was going to ask her if she could come up and sit with me. I called her and told her I'd kind of ran away and was hiding from the world and she said "Oh, I'm up at IHOP talking with J & R" *blink*
Thanks God ... you knew just what I needed.

Faithful

I woke up today and had decided to go ahead and go to church. It's been quite a while since I was sick before all this happened with Don.

I got dressed in a black jumper dress, tourquoise blouse, and black shoes. I went to choose my jewelry and decided on some that meant something to me. To others, it would just be Peggikaye in her elephants again.

To me, it was not just because I like elephants, but, a while back I figured out what it was about elephants that facinated me so. It all came down to Dr. Suess.
I meant what I said
And I said what I meant....
An elephant's faithful
One hundred per cent!

Faithfulness. Today, I wore a tangible reminder of faithfulness. A necklace a friend gave me, a bracelet my husband gave me, an anklet I bought with a gift certificate someone else gave me. All elephants.

God's faithfulness to me ... and my friends faithfulness to me ... the faithfulness has been more than visible this last 2 weeks, but tangible.

Tonight, as I sat next to Don, while he slept on the Bipap, some questions still unanswered, not knowing what lies ahead ... I knew one thing was for sure. God was with us. God had been with us through the last 11 days or so ...and God would be with us.

It is strange ... to feel so worn out, so tired, so ... weary ... to have so many questions looming in the air ...

and yet, to feel so comforted, and so peaceful ...and to feel so confident at the same time.

I guess, the scripture that says that in our weakness, He is made strong ... is how this is lived out. Every moment, I must lean on God's strength, God's wisdom and God's faithfulness ...

My new counselor asked me at my second session when I'd felt safe in my life. Really safe ... it hasn't been often. There hasn't been a whole lot of security.

I told her about the dark times in my marriage and how the sanctuary in my church provided that safety for me. How Sanctuary, became more than a archetectual term, but lived out it's original meaning for me. It was my place of safety for a long time.

And now, this last 11 days, ironically ... I have felt that safety ... that sanctuary ... that I am safe in God's arms ... never closer to God as I have been in the last few days ... as tired, and weary and battle worn ...

I am sure of this one thing ... I know whom I have believed, and He is able to keep that which I've committed, unto Him, until that day.

What's more ... my husband, is one of those things I've committed ... and I'm sure he can keep my husband and the things that he has committed as well.

TALK About it Talk ABOUT it Talk about IT

First, the update. Every question posted in the previous post is still on the table. They are moving him to a long term care facility. We will see if we can get him off the external ventilation during the day, or if this will be a way of life, and if, he is willing to live a life this way if he cannot get off the machinery.

He will most likely have a brand new baseline in life. Oxygen full time, and most likely, walking again, isn't going to happen.

Questions are being shot at me right and left about what can the church do for me. What calls need to be made to Habitat to accomodate our house ...what do we need to do.

The answer is simple. Nothing.

While we were really not prepared for this to happen in reality, in practicality, we honestly did know it was going to happen. There is no step leading to our house. There is a ramp from the driveway to our door. The doorways are an inch wider than most ..and the bathtub has a bar. This house was built with the idea that one day, the post polio would become an issue for Don, and we did not want to have to modify the house at that time.

The decisions to be made about machines, and life sustaining are simply a matter of what amount of healing, restoration can we gain for his body. How much recovery can he get. The choices he's made, have long since been made, discussed, talked about till we were blue in the face. I could recite them on ambien. In the middle of chaos, I know exactly what his choices are ...and this weekend, I knew on the worst day, when he was crashing, and it was clear that things could go sour very fast, what choices might have to be made. We'd talked so often, and so thoroughly, there simply is no questions of 'what does he want?'

Our faith, is so solid, we feel the presence of God, strong ..and solid .. in the middle of this horrible storm, we know beyond a shadow of a doubt, that He is there ...and that we are in the palm of His hand.

Quite frankly, I'm not ready for my husband to leave my presence, but, I know that he will not be hurting if he does go. I will be heartbroken, I will be more sad than I can even imagine being. But, my faith, is probably on more solid ground than it's ever been. I feel God's presence as much as I ever have.

I've watched the families in the ICU waiting rooms ... as they've not known what their loved one would want. They are try to make life and death decisions for someone who isn't awake, and they have no idea what that person feels about extended care, extensive machinery ... or quality of life issues. They have no peace, they have only confusion ...and they feel totally disconnected from their loved one.

Even when Don was at his worst, I knew that because we'd talked about it so often, we were in this together.

I beg of you, talk to your families and friends ... how do you feel about your care when the bleak comes. Talk about every imaginable situation. What kind of situation is ventilation ok in, when is it not. Is it ok for pneumonia? Is it ok to see if they can find improvement for a few days, then they need to turn it off if there is none? What are your wishes, talk about them ... talk about the details. And make sure that you're prepared for a new way of life if something happens.

Don't let the worst catch you in a state of confusion. It doesn't help things.

I feel like I've been pushed through a key hole and pulled out backwards this week and the one thing I don't feel, is confused. It's a matter of waiting to see how the circumstances unfold, and knowing we're in God's hands.

It's not fun. It's harder than I could ever have guessed. But we talked about it. You should too. You can't imagine the peace of mind it brings.