Today's post is a conglomeration of previous posts about my step father and I. Today, would have been his birthday.
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"Darling, wake up!"
I woke slowly up and saw my Daddy's face grinning at me. What in the world? The sky was dark, lots of stars, no moon.
"Shhhhhh Don't wake your mom or sisters!"
My step sister Celda, his second to youngest, daughter, not Linda; she'd already gone back to live with her mother years before, and my sister were asleep in the next room.
I was totally confused. He told me to dress warm, and to bring my blanket.
What?
He left the room for me to get dressed.
I was in the third grade, and it was so strange. Daddy was always up to something strange. He and I shared many many secrets ...all of them made me laugh. So ... I wiped the sleep from my eyes and put my clothes on.
I took my blanket and went into the kitchen. I had my favorite slippers on instead of my shoes. Daddy was waiting at the table. He shined a flashlight in my face and then his, and said in a really weird voice "are we ready freddy?"
I had no idea ..but hey!
So, I followed him outside and there was a ladder leading up to the roof ... huh?
He took my blanket and shined the flashlight on the ladder.
"Climb up!"
"REALLY?!"
We'd been up there the week before doing some repairs. So, I was familiar with how to climb up safely ...but at night?
He shined the light on his face and gave me a cartoon grin.
So, up the ladder I went. He stood close enough to me so that I knew I was safe.
I got up there and saw, on the flat of the roof ... a blanket, a camping lantern, a picnic basket and a couple of pillows.
I looked down at my Daddy ...and he smiled. I stood aside to let him come up. I started to walk to the blanket and Daddy said
"Don't move till I get up there, I know you feel safe, but without light, you might not be, you need me near you!"
So, he gets there, and we walk to the blanket. His pillow and blanket were already up there, and a pillow for me.
In the basket ...a thermos of hot chocolate, and a bowl of popcorn. How did he pop that without waking anyone up! Smell or noise? Suddenly, I realized I could smell it in the house, I just had been so confused by his midnight games, I hadn't paid attention.
"Daddy, what are we doing?"
"Watch! About 3 minutes later a shooting star ... and within seconds ...another ...and before I knew it ... I was watching my first meteor shower!!!
We ate the popcorn and drank the hot chocolate and when the bowl was empty and the ooohs and ahhhs and "look Daddy's!" were getting to be redundant ... we laid there and watched ... and watched ... and all too soon ...the stars fell with less frequency.
Then we went about 5 minutes in total silence between us ... and not a single star fell ....just the sounds of the night in the mountains ... and the song of love between a father and daughter ...
"Darling, it's over"
"I know"
"Darling, I love you"
"I know Daddy, I love you."
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It's springtime. Springtime will always bring memories of my step dad, my Daddy. Ok I might as well face it, just about anything will bring up memories of him. He was rather precious to me.
But springtime. He loved to garden.
Where I grew up, in the foothills of the Sierra Nevada's, right outside of Yosemite National Park, we had 2 acres. A large part of that 2 acres was our vegetable garden.
It was the responsibility of Daddy and me to make sure it got planted, weeded and harvested. From the first year we lived there, till we moved away when I was in the 8th grade. It was our garden.
When I was little, 1st grade, I didn't quite get all that gardening took. I understood quite a bit about things, and occasionally, my parents assumed I knew things I didn't know ..Which usually lead to trouble.
In the case of gardening, it was no exception.
Dad and I worked hard to work the soil. It hadn't been used as a garden before, so lots of tilling had to be done. We had to till it a couple of times to make sure it was ready to grow the vegetables we were going to plant. Then we had to make the rows. Each row, was slightly different than the other, it would depend on what vegetable was going to go where. Some rows were farther apart than others. Very narrow rows where the radishes, carrots, green onions go, but very wide where the squash, pumpkins, and eggplant goes.
We had the ground tilled, the rows made, then we went in and made individual little 'pockets in the ground. "not necessarily necessary, but just a bit of extra depth" Dad would say, each year. That year, I had no clue what he meant.
Then, we'd walk by each row, and stick a stick at the end of the row. On the stick, was a packet of seeds(empty) with what was going to go into that row so we'd know what we were growing there. I had fun doing that. Daddy held the stick while I pounded the stick into the ground.
Then Dad grabbed the full packets of seeds and put them in his pockets, he started to walk down the rows, but he was trailing the seeds behind him!!! Oh NO! We can't have that! We'll LOOSE THEM ALL!!
Down the squash row, down the onion rows, down the radish rows, carrots and cucumber rows, we get half way down the tomato rows and I burst into tears. Daddy turned around and said "Darling! What's wrong!"
He sees me with my hands full of seeds and I see his eyes about pop out of his head, but his voice stays calm. I cry and cry "I tried to save all your seeds, but my hands are too small!"
My Daddy picked me up and hugged me and decided to explain gardening to me, start to finish.
We took 3 rows, and planted the mishmash of seeds to see what would happen. We called it 'mixed vegetables'. Then, we started over with re - planting the other rows.
Very few of the veggies in the mixed vegetables grew, except the radishes. That became my favorite in the garden. From then on, every year, the radishes were my responsibility. Start to finish. No one was allowed to harvest them but me. It's funny now, but Mom and Dad would serve radishes at the table on a day that I hadn't 'given my permission' and they'd tell me that they'd gone to the store and I'd actually buy that story ! (the things parents will tell kids to keep their smiles on their faces!)
I miss Daddy. I know why I can understand God's love for us though. Daddy did such a thorough job of showing me ... Sometimes God goes in front of us, having planned it all out carefully, and all we have to do is follow in his footsteps, but we're afraid he's not doing it right, that he's dropping something. So we have to help him. So we pick up the seeds he's sowing. We keep picking them up until we're so desperate and we're exhausted we have no choice but to cry out "Abba!My hands are too small!"
And Abba Father will pick us up, hold us in his arms. Then he'll take us, help us replant those mishmash seeds to watch it grow. Then we can see what crop shows up. Somehow, with childlike wonder, we will latch onto that harvest with a passion that will carry us through. It might even become something that is precious to us forever. I wrote a poem a long time ago about this, but blogger is being stubborn today and won't let me post it in format. So, if you'll go back to this post from last Father's Day, you can read the poem.
My Dad's Shadow
My dad had a shadow,
It followed him all year long,
During the winter, it would go behind,
And throw snow at his back,
During the spring, it would follow him,
Out to the garden to pick up the seeds,
He 'accidently' dropped.
In summertime it would follow him to work,
And make more messes.
In the fall it would go behind,
Jumping in the piles of leaves he had raked.
The one spring he turned around
No shadow could be found,
Only I was standing there,
With a grin on my face and some seeds,
in my hand,
For you see ... the shadow that my dad had,
Was not a shadow at all,
IT WAS ME!
© Peggikaye Eagler
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Woodpeckers follow the link.
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Monday, February 27, 2006
Strong Reactions
Yesterday at church they introduced a new song. I wonder what the reaction to it was. I know what the reaction in the worship team was when it was first sang ... we had a 50/50 reaction to one line. Half of us REALLY loved it. Half REALLY disliked it. I shared what it meant to me ... ended the discussion all together. But, if half the worship team had such a strong reaction to that one phrase ..what was the reaction to the congregation??? I'm going to just put in part of the song ...
"You reign victorious, High and lifted up, Jesus, Son of God, The Darling of Heaven, Crucified, Worthy is the Lamb"
The Darling of Heaven ...
Never heard Christ described that way and the reaction was strong and immediate.
For me ... it brought immediately to mind my beloved step father who died when I was 14. His encouragement when my heart was breaking. His deep love for me. His ability to reach my heart when no one else could. His looking me in the eye when the school bully had shattered my heart ...yet again. His taking me in his arms and loving me when a family member had rejected me ...yet again. His putting me in a place of honor, and showing me that he thought I was precious.
When my heart was shattered and he knew that only he could fix it, he'd start the conversation with "Darling, you know how much I love you" or "Darling, I'm sorry they hurt you" "Darling, I love you so much"
Darling ... I was my Daddy's Darling ... it was a priviledge place to be. A place of honor. None of my friends, as much as he liked my friends, could take that place. None of my cousins, as much as he loved my cousins, could take that place. When my heart was breaking, not even one of my sisters, could take that place. At that moment in time, I was DARLING ..the focus of my Father's world.
The Darling of Heaven Crucified.
The Heavenly Father's Darling son ... the son ... in a place of honor, a son so very precious, that all the hope of the world was put in him. A son, who the Father loved so much!
When I think of Christ as the Father's DARLING SON crucified ... and in think of what it meant to be my Daddy's Darling ...
How incredible ... The Darling of Heaven Crucified ...
How much more precious did that make that sacrifice ? God was willing to let his own son, become flesh, and bear pain, and experience things that he really had no real need to experience ...so that I, Peggikaye Eagler, could come into HIS presence, and have Fellowship with him.
The Darling of Heaven ...
How precious, how incredible.
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Letter to Daddy, 2006
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`
Happy Birthday Daddy, you are forever missed.
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
Thursday, January 31, 2008
Wednesday, January 30, 2008
Poetry break
Reality's Path
My path, two steps forward, three steps back.
My burdens I carry in my own pack.
The hill is steep, the journey so long,
If I don’t fail, I will show I am strong.
This smile I wear is my uniform,
I will ignore my loud internal storm.
As long as the outside shines so bright,
And no one knows my heartbreaks inside fight.
God said we’re each to bear our own load,
No matter how steep or rocky the road.
This pack is getting very heavy!
I don’t think I can get past this levy!
Walls around my heart are caving in,
If they crumble, it will reveal my sin!
Dear Lord, if they see, what will they think?!
They will know the truth of my life’s real stink!
You want me to trust in Your power?
You’ve given friends to help in troubled hours?
But God! Is it not my job to alone,
No help to carry this life’s heavy stone?
Surrender? A word for only the weak!
Your will and purpose I want to seek.
I humbly lay this at your feet.
Taking the hands of the saints I will meet.
In my weakness You show Your glory.
I hadn’t been looking at the full story.
It’s not my heart that you want to break,
But my pride is released for Your loves sake.
Now I am starting to understand.
It’s Your solid ground not my own life’s sand,
That shows Your true love and grace for me.
Surrendering to you ... I’ve learned the key
© Peggikaye Eagler
2003
My path, two steps forward, three steps back.
My burdens I carry in my own pack.
The hill is steep, the journey so long,
If I don’t fail, I will show I am strong.
This smile I wear is my uniform,
I will ignore my loud internal storm.
As long as the outside shines so bright,
And no one knows my heartbreaks inside fight.
God said we’re each to bear our own load,
No matter how steep or rocky the road.
This pack is getting very heavy!
I don’t think I can get past this levy!
Walls around my heart are caving in,
If they crumble, it will reveal my sin!
Dear Lord, if they see, what will they think?!
They will know the truth of my life’s real stink!
You want me to trust in Your power?
You’ve given friends to help in troubled hours?
But God! Is it not my job to alone,
No help to carry this life’s heavy stone?
Surrender? A word for only the weak!
Your will and purpose I want to seek.
I humbly lay this at your feet.
Taking the hands of the saints I will meet.
In my weakness You show Your glory.
I hadn’t been looking at the full story.
It’s not my heart that you want to break,
But my pride is released for Your loves sake.
Now I am starting to understand.
It’s Your solid ground not my own life’s sand,
That shows Your true love and grace for me.
Surrendering to you ... I’ve learned the key
© Peggikaye Eagler
2003
Tuesday, January 29, 2008
Tables
And so, life, after declaration begins.
To follow up with the contract requires actual action, follow through, and truly living with oneself. In the legal realm, when one signs a contract, if they do not follow through, the consequences can be quite severe.
This, is true in my case as well. The consequences of not following through, just might mean, my life.
So, this weekend, while I was making my contract with myself, two bloggers who work very hard on Eating Disorder awareness were meeting face to face.
Carrie at ED BITES wrote about her meeting with Laura and found that Laura's table was a great metaphor. As I read Carrie's metaphor, I realized that I'd found the answer to MY meeting my ability to reach my contract with my body.
My comment to Carrie was:
This week, this terrible week, that will remind me of all the things I have lost (this is the anniversary week of my step dad's death as well as his birthday) while I've surrendered ALL of my negative coping skills ... no ED behaviors, no biting nails and no SI ... nothing left ...
I ... will sit at the table of my childhood ... and remember the lessons of my childhood.
The days that Daddy woke me up in the middle of the night, just me, to show me my first meteor shower. The walks to get watercress, the trips to town to get icecream, and gardening ...just he and I.
Daddy's little girl ... I, was "Halfpint" to him. Only more, I was Darling.
This year, I will sit at this table, and I will allow myself to be nurtured, and allow nutrition to go into my body, and my heart and soul.
I will sit at this table, and I will write. I will sit at the table and I will eat. I will sit at the table to read. When I am lonely, I will sit at the table and drink my hot tea, or coffee ... and I will remember it's solid maple has withstood as many tragedy's and joys as I have ... and it's still standing ...just like me.
You know what I will do, I will take out the miniature blue willow tea set Chris and Angie gave me and have myself a tea party! Complete with real tea and real tea cookies! *BLINK*
I will sit at my beautiful table ... and I will nourish the my body.
I will remember that somewhere in the US, Carrie is sitting at her table, unique ... and she is nourishing herself ... and Laura is sitting at her table, having worked so hard to nourish her daughter and her daughter survived! As she sits at her table nourishing the souls of those who's hearts are gripped in fear ...
We'll sit at our tables together, but miles apart ... and I will be nourished. Heart, mind, body and soul.
I will remember ... I'm not alone.
To follow up with the contract requires actual action, follow through, and truly living with oneself. In the legal realm, when one signs a contract, if they do not follow through, the consequences can be quite severe.
This, is true in my case as well. The consequences of not following through, just might mean, my life.
So, this weekend, while I was making my contract with myself, two bloggers who work very hard on Eating Disorder awareness were meeting face to face.
Carrie at ED BITES wrote about her meeting with Laura and found that Laura's table was a great metaphor. As I read Carrie's metaphor, I realized that I'd found the answer to MY meeting my ability to reach my contract with my body.
My comment to Carrie was:
Oh! I love this!
I have the table of my childhood. It, is beautiful. It is round, solid maple. Antique and a treasure. My parents bought it right after they were married ( my mother and my step father, I was 13 months old).
It is the table that I sat around all of my growing up years ...
I treasure this table, tremendously ... I made a promise to my body yesterday ...and have been trying to figure out all day today ...how I'm going to follow through with that ...
thanks for the answer. Sitting, at my very very treasured table ...
Ok, I'm crying now.
Sitting at my treasured table, where my step dad would sit with me is where I will follow through with my promise to my body to nourish it.
Thanks Carrie.
This week, this terrible week, that will remind me of all the things I have lost (this is the anniversary week of my step dad's death as well as his birthday) while I've surrendered ALL of my negative coping skills ... no ED behaviors, no biting nails and no SI ... nothing left ...
I ... will sit at the table of my childhood ... and remember the lessons of my childhood.
The days that Daddy woke me up in the middle of the night, just me, to show me my first meteor shower. The walks to get watercress, the trips to town to get icecream, and gardening ...just he and I.
Daddy's little girl ... I, was "Halfpint" to him. Only more, I was Darling.
This year, I will sit at this table, and I will allow myself to be nurtured, and allow nutrition to go into my body, and my heart and soul.
I will sit at this table, and I will write. I will sit at the table and I will eat. I will sit at the table to read. When I am lonely, I will sit at the table and drink my hot tea, or coffee ... and I will remember it's solid maple has withstood as many tragedy's and joys as I have ... and it's still standing ...just like me.
You know what I will do, I will take out the miniature blue willow tea set Chris and Angie gave me and have myself a tea party! Complete with real tea and real tea cookies! *BLINK*
I will sit at my beautiful table ... and I will nourish the my body.
I will remember that somewhere in the US, Carrie is sitting at her table, unique ... and she is nourishing herself ... and Laura is sitting at her table, having worked so hard to nourish her daughter and her daughter survived! As she sits at her table nourishing the souls of those who's hearts are gripped in fear ...
We'll sit at our tables together, but miles apart ... and I will be nourished. Heart, mind, body and soul.
I will remember ... I'm not alone.
Grand Beatles ..er ...Rounds!
The Beatles ... um ... Kim at Emergiblog proudly presents GRAND ROUNDS this week.
She did a great job using the Beatles as her theme.
Thanks for including mine as well.
She did a great job using the Beatles as her theme.
Thanks for including mine as well.
Sunday, January 27, 2008
Letter to My Body
Dear Body,
You have taken me on a 43 year journey. You have allowed me the privilege of flying kites, and climbing trees and running through fields of California Golden Poppies.
You took my little legs when I was 3 and experiencing snow for the first time, and tumbled through it, and let me experience the cold, and the wet and the fun of a child's first snow with her family.
You allowed me to go backpacking in the backwoods of Yosemite Natonal Park, and walks along the Merced River with my family.
Playing Frisbee in the valley, or walking up to a waterfall and you allowed me to feel the spray of water literally dropping off the side of a mountain.
You allowed me to play softball with my friends, and go running in the "I Ran in El Portal" long distance race in the mountains. Your legs took me on paths to backwoods creeks to pick watercress on Thanksgiving mornings with my Daddy. Your arms allowed me to learn to throw shot puts and the discuss for county track meets.
Your back bent backwards and your fingers nimble to allow me the fun and thrill of twirling the baton.
You took me on bike rides with friends and your eyes let me read the most amazing stories that took me to places far away and long ago and even into worlds that exist only in the minds of those of us who can imagine them.
Your arms and hands allowed me the privilege of learning a new language. To speak to those who cannot hear. To express myself through with music, while my arms and hands, fingers dance through the air and say what my voice never could in a million years.
Your dexterity and your strength allowed me to learn not only the nuances of another language, but to more fully experience the language that was native to my ears. You allowed me the honor of sitting through church services, and hearing the words of a pastor, and taking those words, and passing them to the tips of your arms and hands and to allow another person to know what the pastor was saying, even though, they could not hear his voice.
Your muscles and tendons,bones worked together to allow me to work with a team of girls to watch a white ball float back and forth over a net. Sometimes it would go gracefully, sometimes with power that was amazing to watch. You allowed me to experience the power of slamming the ball from the serving line ...and the ability to direct it exactly where your eyes intended it to go, but not where the opposing team thought it was going to go. You allowed me to experience diving to the ground, to get your hands, tightly grasped together, under the ball seconds before it hit the ground, to save the team from defeat.
Your knees slammed to the ground and your body took the insult, usually an elbow as well, but the ball, was in the air without having hit the ground. I was allowed the hero's cheer while you took the insult of the slam. You allowed me to feel the power of hitting the ball, and the joy of the coordination needed to allow all of it to come together in just the right second.
Your voice allowed me to participate in pep squad and cheering for wrestlers. Loud, strong and carrying well.
You could raise your voice without straining your vocal chords, allowing me to participate in such things as speech competitions, dramatic productions and musical performances.
Your ears allowed me the joy of hearing music ...precious music! That has so often spoken to me about what God has been trying to tell my broken soul. It has allowed me to hear the birds sing,
the cats meow and my children say "Mama" for the first time!
Your eyes have allowed me to enjoy the majesty of mountains, and the intricacy of the imagination of an artists pen.
You, my body, have allowed me to be pregnant 3 times, and to see 2 of those three to full term. You allowed me the privilege of motherhood.
To experience the joy of holding a baby and to hear it's cry and laughter. You have allowed me to see him take his first steps and to hear his goals for his life. You, my body have allowed me all of this.
Things have happened to you that should never happen to a body and you held up, you stood strong and you got me from one day to the next. You allowed me to take get out of bed and take step after step after someone else decided that you were their object of destruction. You allowed me to survive when a piece of my soul had been stolen.
You took charge when my step father died,
taking my feet to the phone, and made my hand reach for the phone to call the police. You, allowed me to get out of bed the next day, and the next day, and the next day, until ... it became a habit.
You allowed me to experience the joys and sensations of falling in love the first time and all that entails. When the marriage did not work, again, you got me out of bed, and you took that step and then another.
When again, someone decided that, you were the object of their violent fantasies, you, stood and walked away. You got me up the next day, and the next. You allowed me to continue to work and to continue to talk and to continue to breathe when my soul wanted to disappear.
You were assaulted with the pain of a miscarriage at 20 weeks along. With me knowing it was a girl, you, my body, got me through it.
You, in spite of the pain, got me to a point where I could stand again, and look at the sun ...and again, got me out of bed and day after day until it was a habit.
When I was 24, your own immune system decided to turn on you, attacking the muscles, causing them to be weak and suddenly, you, seemed to fail me. You, that had been so strong. Running the KCFO Fun Run (5k) without training ... suddenly could not lift a brush to brush my hair. You could not focus on a page of the written word because the images were doubled. Your eyelids would not stay open, no matter how hard you tried. Chewing food was a full body experience for you. The elbow resting on the knee, the chin cupped into the hand, and then the jaw manipulated not by the muscles in the face, but by the motion of the foot to the arm to the hand .. like a water wheel ..hoping to get enough force to get an egg chewed enough to swallow.
Yet, you managed to get me through long enough to find a diagnosis, a treatment. When I didn't know what to do, you survived.
You have suffered through the pain of lupus, and attacks of the immune system on itself.
You have had the joints deteriorate,
change positions and arthritis deteriorate the knees that once jammed triumphantly onto that volleyball court. You have withstood 15 surgeries, and treatments of plasmaphereisis, IVIG for years. You have endured blood clots and infections ranging from pneumonia to sinus requiring surgery. You have survived.
You have endured countless blood tests,
needle IV insertions and an IV port that was accessed monthly for six years. You have had the insult of an 
EMG no less than six times. You have had to have IV contrast for body scans and MRI's and CT scans and each time the needle poked through the skin that was meant to keep foreign objects out, you felt the insult of the instrument trying to help you.
You, have endured.
But, what is most insulting to you, is what I, have done to you myself. For whatever reason ... genetics, environment, response to experiences past ... decided that I did not like you and was determined to change the essence of what you were. I would not feed you when you needed to be fed. I would over work you when you needed to rest and I would drive you into conditions no body should have to experience.
More times than I can count, I refused to put precious calories into your mouth, for your system to process so that *I* could survive. The end result, was for me to drive you into a myasthenic crisis. Not enough potassium, and other such electrolytes caused your immune system to attack you and you responded as best you could, but, even healthy bodies don't respond well to that.
So the doctors gave prednisone, which is, in and of itself an assault to you. 100 mgs ... for 9 months. By the time it had wreaked it's ravages, the weight I'd taken off so violently, had been just as violently placed back on. I determined to take them right back off and did so. Denying you, of what you needed most, tender, loving, care and nutrition.
The end result, was another stay in the hospital, only 15 days this time. Respiratory support, and plasmaphersis had to pull you out. And again, 80 mg of prednisone ... till you could support yourself from the ravages of what I had done to you.
So here I stand, and the realization that I came very close to putting you at the hospital steps once again. Your muscles not working right and difficult to focus as images that should be clear, double. Pain increasing, and chostochondritis just won't go away as you try your hardest to deal with what you need to deal with, while I stubbornly refuse to give you the simple nutrition you need to get through a day.
Sixty milligrams of the dreaded prednisone is the result. As I pray this is enough to get you through ...and up and working again it strikes me why you've failed me again. It is, because I failed you. I have to feed you ... and while working on the things inside my soul that have me clinging to my stubborn insistence at doing the things that cause me to want you to disappear, the prednisone will help to control the immune system, to allow you to heal from the violence I've inflicted on you in the last few months.
I recognise, that while prednisone is the cure, it is a wicked cure and you will not like it's process. It's a bitter pill to swallow and it is not your fault. For that, I am deeply sorry.
I see that ...and now ... I am going to do something I've never done before. Ever. I'm going to contract with you. I'm going to promise to:
let you rest when you need to rest
exercise when you need to exercise
put food into your mouth, and let you chew it, swallow it, digest it and absorb it and HAVE it ... daily, regularly ...and forever.
I'm going to take the medications for the pain you endure as I've been asked to.
I'm going to start to take care of you
You took care of me when I could not.
You gave me so much ... I've taken so much.
I contract with you ... to make you, my body, one with my soul and my spirit. To stop trying to make you a non entity that does not matter.
I contract with you to become me.
You have taken me on a 43 year journey. You have allowed me the privilege of flying kites, and climbing trees and running through fields of California Golden Poppies.
You took my little legs when I was 3 and experiencing snow for the first time, and tumbled through it, and let me experience the cold, and the wet and the fun of a child's first snow with her family.You allowed me to go backpacking in the backwoods of Yosemite Natonal Park, and walks along the Merced River with my family.
Playing Frisbee in the valley, or walking up to a waterfall and you allowed me to feel the spray of water literally dropping off the side of a mountain.You allowed me to play softball with my friends, and go running in the "I Ran in El Portal" long distance race in the mountains. Your legs took me on paths to backwoods creeks to pick watercress on Thanksgiving mornings with my Daddy. Your arms allowed me to learn to throw shot puts and the discuss for county track meets.
Your back bent backwards and your fingers nimble to allow me the fun and thrill of twirling the baton.
You took me on bike rides with friends and your eyes let me read the most amazing stories that took me to places far away and long ago and even into worlds that exist only in the minds of those of us who can imagine them.
Your arms and hands allowed me the privilege of learning a new language. To speak to those who cannot hear. To express myself through with music, while my arms and hands, fingers dance through the air and say what my voice never could in a million years.
Your dexterity and your strength allowed me to learn not only the nuances of another language, but to more fully experience the language that was native to my ears. You allowed me the honor of sitting through church services, and hearing the words of a pastor, and taking those words, and passing them to the tips of your arms and hands and to allow another person to know what the pastor was saying, even though, they could not hear his voice.Your muscles and tendons,bones worked together to allow me to work with a team of girls to watch a white ball float back and forth over a net. Sometimes it would go gracefully, sometimes with power that was amazing to watch. You allowed me to experience the power of slamming the ball from the serving line ...and the ability to direct it exactly where your eyes intended it to go, but not where the opposing team thought it was going to go. You allowed me to experience diving to the ground, to get your hands, tightly grasped together, under the ball seconds before it hit the ground, to save the team from defeat.
Your knees slammed to the ground and your body took the insult, usually an elbow as well, but the ball, was in the air without having hit the ground. I was allowed the hero's cheer while you took the insult of the slam. You allowed me to feel the power of hitting the ball, and the joy of the coordination needed to allow all of it to come together in just the right second.Your voice allowed me to participate in pep squad and cheering for wrestlers. Loud, strong and carrying well.
You could raise your voice without straining your vocal chords, allowing me to participate in such things as speech competitions, dramatic productions and musical performances.Your ears allowed me the joy of hearing music ...precious music! That has so often spoken to me about what God has been trying to tell my broken soul. It has allowed me to hear the birds sing,
the cats meow and my children say "Mama" for the first time!Your eyes have allowed me to enjoy the majesty of mountains, and the intricacy of the imagination of an artists pen.
You, my body, have allowed me to be pregnant 3 times, and to see 2 of those three to full term. You allowed me the privilege of motherhood.
To experience the joy of holding a baby and to hear it's cry and laughter. You have allowed me to see him take his first steps and to hear his goals for his life. You, my body have allowed me all of this.Things have happened to you that should never happen to a body and you held up, you stood strong and you got me from one day to the next. You allowed me to take get out of bed and take step after step after someone else decided that you were their object of destruction. You allowed me to survive when a piece of my soul had been stolen.
You took charge when my step father died,
taking my feet to the phone, and made my hand reach for the phone to call the police. You, allowed me to get out of bed the next day, and the next day, and the next day, until ... it became a habit.You allowed me to experience the joys and sensations of falling in love the first time and all that entails. When the marriage did not work, again, you got me out of bed, and you took that step and then another.
When again, someone decided that, you were the object of their violent fantasies, you, stood and walked away. You got me up the next day, and the next. You allowed me to continue to work and to continue to talk and to continue to breathe when my soul wanted to disappear.
You were assaulted with the pain of a miscarriage at 20 weeks along. With me knowing it was a girl, you, my body, got me through it.
You, in spite of the pain, got me to a point where I could stand again, and look at the sun ...and again, got me out of bed and day after day until it was a habit.When I was 24, your own immune system decided to turn on you, attacking the muscles, causing them to be weak and suddenly, you, seemed to fail me. You, that had been so strong. Running the KCFO Fun Run (5k) without training ... suddenly could not lift a brush to brush my hair. You could not focus on a page of the written word because the images were doubled. Your eyelids would not stay open, no matter how hard you tried. Chewing food was a full body experience for you. The elbow resting on the knee, the chin cupped into the hand, and then the jaw manipulated not by the muscles in the face, but by the motion of the foot to the arm to the hand .. like a water wheel ..hoping to get enough force to get an egg chewed enough to swallow.
Yet, you managed to get me through long enough to find a diagnosis, a treatment. When I didn't know what to do, you survived.
You have suffered through the pain of lupus, and attacks of the immune system on itself.
You have had the joints deteriorate, change positions and arthritis deteriorate the knees that once jammed triumphantly onto that volleyball court. You have withstood 15 surgeries, and treatments of plasmaphereisis, IVIG for years. You have endured blood clots and infections ranging from pneumonia to sinus requiring surgery. You have survived.You have endured countless blood tests,
needle IV insertions and an IV port that was accessed monthly for six years. You have had the insult of an EMG no less than six times. You have had to have IV contrast for body scans and MRI's and CT scans and each time the needle poked through the skin that was meant to keep foreign objects out, you felt the insult of the instrument trying to help you.You, have endured.
But, what is most insulting to you, is what I, have done to you myself. For whatever reason ... genetics, environment, response to experiences past ... decided that I did not like you and was determined to change the essence of what you were. I would not feed you when you needed to be fed. I would over work you when you needed to rest and I would drive you into conditions no body should have to experience.
More times than I can count, I refused to put precious calories into your mouth, for your system to process so that *I* could survive. The end result, was for me to drive you into a myasthenic crisis. Not enough potassium, and other such electrolytes caused your immune system to attack you and you responded as best you could, but, even healthy bodies don't respond well to that.
So the doctors gave prednisone, which is, in and of itself an assault to you. 100 mgs ... for 9 months. By the time it had wreaked it's ravages, the weight I'd taken off so violently, had been just as violently placed back on. I determined to take them right back off and did so. Denying you, of what you needed most, tender, loving, care and nutrition.
The end result, was another stay in the hospital, only 15 days this time. Respiratory support, and plasmaphersis had to pull you out. And again, 80 mg of prednisone ... till you could support yourself from the ravages of what I had done to you.
So here I stand, and the realization that I came very close to putting you at the hospital steps once again. Your muscles not working right and difficult to focus as images that should be clear, double. Pain increasing, and chostochondritis just won't go away as you try your hardest to deal with what you need to deal with, while I stubbornly refuse to give you the simple nutrition you need to get through a day.
Sixty milligrams of the dreaded prednisone is the result. As I pray this is enough to get you through ...and up and working again it strikes me why you've failed me again. It is, because I failed you. I have to feed you ... and while working on the things inside my soul that have me clinging to my stubborn insistence at doing the things that cause me to want you to disappear, the prednisone will help to control the immune system, to allow you to heal from the violence I've inflicted on you in the last few months.
I recognise, that while prednisone is the cure, it is a wicked cure and you will not like it's process. It's a bitter pill to swallow and it is not your fault. For that, I am deeply sorry.
I see that ...and now ... I am going to do something I've never done before. Ever. I'm going to contract with you. I'm going to promise to:
let you rest when you need to rest
exercise when you need to exercise
put food into your mouth, and let you chew it, swallow it, digest it and absorb it and HAVE it ... daily, regularly ...and forever.
I'm going to take the medications for the pain you endure as I've been asked to.
I'm going to start to take care of you
You took care of me when I could not.
You gave me so much ... I've taken so much.
I contract with you ... to make you, my body, one with my soul and my spirit. To stop trying to make you a non entity that does not matter.
I contract with you to become me.
Saturday, January 26, 2008
The Mom Song Sung to William Tell Overture with Lyrics
Ya know, I never thought that I needed to say "Don't flush the keys down the toilet" to an 18 year old.
This, is quite timely in my life.
Thought I'd share.
Thanks Patti!!
Insomnia and it's many reasons
I FINALLY fell asleep some time around 3:30 ..
and my cat TWITCH decided it was time to be done sleeping at 5:30.
I thought he was hungry, or thirsty, so I got up to get him fed/watered so I could go back to bed.
I come out here ...full bowl of water & Food.
He's standing next to me purring so loudly I can hear him from the floor.
He then goes and sits next to the computer chair as if I'm supposed to go sit in it. DUMB CAT! IT's 5:30 in the BLESSED A.M.! (yes, that's a M*A*S*H* Quote)
"I'm going back to bed"
Twitch "NO" (meowed, in a clear, yeaowlering, no)
Me "yes"
I snuggle back into my blankets ... and the smart cat that he is, I'm wondering if he'd gotten me up because, well, I was drenched in sweat. Did he know that?
I'm trying to give him the benifit of the doubt, so, I take off the top blanket. It really was more comfortable. I hadn't quite realized I'd woken up drenched in sweat till I started to try to figure out why he would get me up.
So, he comes back on the bed.
He always seems to know when I'm hurting too badly to be walked on ...
so he walks around me tonight ....
up to my head ...
and around my head ...
and his head
goes under my shoulder
and he again
starts
to
push
Go AWAY
push/purrrrrrrrrrr
Go AWAY
push/purrrrrrr
Twitch!! I grab him, turn him around and cuddle with him,
PURRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
RRRRRrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
I pretend to fall asleep
and he works his head under
my
shoulder
and starts to push.
For a full hour this goes on.
Till ...
I give into his majesty and get up ...
and go into the living room, and he's now asleep on the living room floor.
I did get up and go back to bed, but he heard me and started it again.
He wants me here ... stupid cat. (ok, smart cat stupid human)
and my cat TWITCH decided it was time to be done sleeping at 5:30.
I thought he was hungry, or thirsty, so I got up to get him fed/watered so I could go back to bed.
I come out here ...full bowl of water & Food.
He's standing next to me purring so loudly I can hear him from the floor.
He then goes and sits next to the computer chair as if I'm supposed to go sit in it. DUMB CAT! IT's 5:30 in the BLESSED A.M.! (yes, that's a M*A*S*H* Quote)
"I'm going back to bed"
Twitch "NO" (meowed, in a clear, yeaowlering, no)
Me "yes"
I snuggle back into my blankets ... and the smart cat that he is, I'm wondering if he'd gotten me up because, well, I was drenched in sweat. Did he know that?
I'm trying to give him the benifit of the doubt, so, I take off the top blanket. It really was more comfortable. I hadn't quite realized I'd woken up drenched in sweat till I started to try to figure out why he would get me up.
So, he comes back on the bed.
He always seems to know when I'm hurting too badly to be walked on ...
so he walks around me tonight ....
up to my head ...
and around my head ...
and his head
goes under my shoulder
and he again
starts
to
push
Go AWAY
push/purrrrrrrrrrr
Go AWAY
push/purrrrrrr
Twitch!! I grab him, turn him around and cuddle with him,
PURRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
RRRRRrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
I pretend to fall asleep
and he works his head under
my
shoulder
and starts to push.
For a full hour this goes on.
Till ...
I give into his majesty and get up ...
and go into the living room, and he's now asleep on the living room floor.
I did get up and go back to bed, but he heard me and started it again.
He wants me here ... stupid cat. (ok, smart cat stupid human)
Friday, January 25, 2008
Bling Bling
Ok, son #1 got new cell phone with pictures that can actually send to internet.
So, very poor quality pics ...but .. it will at least, finally give a hint as to what my 20th anniversary bling bling ...er ... ring looks like. My barely nails are in the pic as well.
These pictures do NOT do the ring justice ...at all ... :( but ... you get the idea.
Yes, I know, it's on the wrong finger for a wedding ring. However, the knuckle on my ring finger is a bit swollen today and it didn't want to go over it. Didn't quite realize how badly till I saw the picture and could SEE it ..eeps.
The camera did do our kitty justice, the little camera hog!
Pull a flash out, and Sugarfoot is ready to pose!
So, very poor quality pics ...but .. it will at least, finally give a hint as to what my 20th anniversary bling bling ...er ... ring looks like. My barely nails are in the pic as well.
These pictures do NOT do the ring justice ...at all ... :( but ... you get the idea.
Yes, I know, it's on the wrong finger for a wedding ring. However, the knuckle on my ring finger is a bit swollen today and it didn't want to go over it. Didn't quite realize how badly till I saw the picture and could SEE it ..eeps.
The camera did do our kitty justice, the little camera hog!
Pull a flash out, and Sugarfoot is ready to pose!
Wednesday, January 23, 2008
Lifelong bad habit
chronic onychophagia
That's what it is. Unless you're a doctor or psychologist reading this you're probably going ?huh?
Nailbiting.
Here I am, my freshman year in high school ... my hands placed where I did not want them ... with .. no nails ...
When I see that picture, all *I* can see, is the lack of fingernails.
At 4, my parents were trying to get the annual Easter picture ..and they could scarcly get my fingers out of my mouth long enough for me to GET the picture taken
I remember this being taken. By the time the picture was taken, you can see by the expression on my face, I was having great fun at sticking my fingers back in my mouth.
So, I've been through my flicker looking for pictures of me with my nails, and ... I do a good job of hiding my hands when the camera's are around. Only one shot, and it wasn't clear enough to show. The other, I had on fake nails FOR the picture.
One time in my life I managed to quit biting my nails. A couple of years ago. I just stopped. I had no idea why ... I just did. Suddenly, out of the blue, my nails just started to grow. It was amazing. I had fun playing with polishing them, lots of colors ... and then they grew ...and they grew ... and they grew.
They got to be too long ..but I let them grow so that I could do something fun and OSUish for Halloween. (by the way, when your favorite school's colors are Orange, white and Black ..it's hard to convince people it's not Halloween color's!!) and then I'd trim them down after. Only ... I'd never cut my nails before ... ever.
And when I did, I cut them too short, or too jagged ...or something ...and ... I started to nibble ..and well ... back came the habit after 4 months of not biting my nails.
My psychiatrist at the time has another theory besides my bad cutting job, or my own failure to continue the changed habit.
That, was within 2 weeks of my own self realization of the fact that events that happened to me as a child ... really DID count as abuse. I WAS hurt ...really hurt. The first nail came off the day after I found out that the first person that hurt me went to prison for molesting their own children.
His theory ... that probably had far more to do with it, than my own failure ...
His theory of why I stopped ... In June of that year, I'd been increased on a medication for migraine control. Topomax. In migraine control, it's used in low to moderate doses. In Bipolar, it's used as mood controller in higher doses ... they sometimes will see people no longer with anxiety ... and therefore no longer biting their nails ... as my dose was increased ...my anxiety levels probably went down a bit ... I stopped biting my nails ... and ... as my body adjusted to the new dose ... JUST as the revelations were coming to light ... and nibble nibble nibble.
It's a theory ... who knows if it's true. It all makes some sort of sense.
I asked for an increase of dose to stop my nail biting and he just grinned at me.
Evidently, nail biting isn't an excuse to go higher on Topomax.
Especially with it's tendency for appetite suppressent ...and a history of restrictive eating ... oh well ... I had to try.
So ... fast forward to December 2007 ... I get this BEAUTIFUL ring for my 20th anniversary.
Suddenly, people who've known me for 10 years are saying "you bite your nails?"
Even if they don't notice the ring ...my nails are front and center!
And so ... with great effort ... I've managed to go 2 weeks with nary a nibble. It's amazing what a few diamonds can do!!
I've pulled back out my polishes ...much to the males in my house dismay! (they HATE the smell) and I'm hoping that I can hold off till after the first of the month ..where I will get a manicure at the beauty school. I can afford it there. Hopefully, by treating myself to a manicure a couple of times a month, I will keep them in good shape.
I do know, without polish on them, I bite them. Period. I do a TERRIBLE job of polishing them .. with tremors, well ..let's just say, it's not pretty!!
However, even with the shakey job, they are prettier than the bit up edges of bitten nails.
We'll see ... does having attention drawn to my hand ...is that the cure to not biting my nails?
That's what it is. Unless you're a doctor or psychologist reading this you're probably going ?huh?
Nailbiting.
Here I am, my freshman year in high school ... my hands placed where I did not want them ... with .. no nails ...
When I see that picture, all *I* can see, is the lack of fingernails.
At 4, my parents were trying to get the annual Easter picture ..and they could scarcly get my fingers out of my mouth long enough for me to GET the picture taken
I remember this being taken. By the time the picture was taken, you can see by the expression on my face, I was having great fun at sticking my fingers back in my mouth.
So, I've been through my flicker looking for pictures of me with my nails, and ... I do a good job of hiding my hands when the camera's are around. Only one shot, and it wasn't clear enough to show. The other, I had on fake nails FOR the picture.
One time in my life I managed to quit biting my nails. A couple of years ago. I just stopped. I had no idea why ... I just did. Suddenly, out of the blue, my nails just started to grow. It was amazing. I had fun playing with polishing them, lots of colors ... and then they grew ...and they grew ... and they grew.
They got to be too long ..but I let them grow so that I could do something fun and OSUish for Halloween. (by the way, when your favorite school's colors are Orange, white and Black ..it's hard to convince people it's not Halloween color's!!) and then I'd trim them down after. Only ... I'd never cut my nails before ... ever.
And when I did, I cut them too short, or too jagged ...or something ...and ... I started to nibble ..and well ... back came the habit after 4 months of not biting my nails.
My psychiatrist at the time has another theory besides my bad cutting job, or my own failure to continue the changed habit.
That, was within 2 weeks of my own self realization of the fact that events that happened to me as a child ... really DID count as abuse. I WAS hurt ...really hurt. The first nail came off the day after I found out that the first person that hurt me went to prison for molesting their own children.
His theory ... that probably had far more to do with it, than my own failure ...
His theory of why I stopped ... In June of that year, I'd been increased on a medication for migraine control. Topomax. In migraine control, it's used in low to moderate doses. In Bipolar, it's used as mood controller in higher doses ... they sometimes will see people no longer with anxiety ... and therefore no longer biting their nails ... as my dose was increased ...my anxiety levels probably went down a bit ... I stopped biting my nails ... and ... as my body adjusted to the new dose ... JUST as the revelations were coming to light ... and nibble nibble nibble.
It's a theory ... who knows if it's true. It all makes some sort of sense.
I asked for an increase of dose to stop my nail biting and he just grinned at me.
Evidently, nail biting isn't an excuse to go higher on Topomax.
Especially with it's tendency for appetite suppressent ...and a history of restrictive eating ... oh well ... I had to try.
So ... fast forward to December 2007 ... I get this BEAUTIFUL ring for my 20th anniversary.
Suddenly, people who've known me for 10 years are saying "you bite your nails?"
Even if they don't notice the ring ...my nails are front and center!
And so ... with great effort ... I've managed to go 2 weeks with nary a nibble. It's amazing what a few diamonds can do!!
I've pulled back out my polishes ...much to the males in my house dismay! (they HATE the smell) and I'm hoping that I can hold off till after the first of the month ..where I will get a manicure at the beauty school. I can afford it there. Hopefully, by treating myself to a manicure a couple of times a month, I will keep them in good shape.
I do know, without polish on them, I bite them. Period. I do a TERRIBLE job of polishing them .. with tremors, well ..let's just say, it's not pretty!!
However, even with the shakey job, they are prettier than the bit up edges of bitten nails.
We'll see ... does having attention drawn to my hand ...is that the cure to not biting my nails?
Monday, January 21, 2008
Saturday, January 19, 2008
Miracles of miracles
I have posted many times on this blog about my youngest son and the issues that have faced him in life. I went back through yesterday to try to find the perfect post to repost, or link to and found that he's been so frequent of a subject, I just couldn't pick one. I also found, that I've posted the poem that I wrote for him, about him about a dozen times. It will be posted, again, at the end of this post.
I don't know how to express what I'm feeling ... when he was born, he was SO sick. He had neonatal myasthenia gravis, only we didn't know it. The symptoms were severe, but they did not know it was MG because they did not know that *I* had MG. I'd been misdiagnosed with everything from pre diabetes to post partum depression (Should I see a psychiatrist if my depression is making me this ill? Doctor's response ... "No, you need to stop being a baby about being a new mother" and she walked out of the room. Making matters worse, we found out that she'd actually TESTED me for myasthenia ...and gotten positive results on ALL the tests, but chose to decide they were not true and I was malingering ...yes, she used that word on her report to my PCP)to Chronic Fatigue Syndrome ...
So Benjamin is born ...and not healthy ...and before he's even 2 months old ...he has a GI specialist, a pediatric neurologist referral and a pediatric orthopedist and pediatric endocrinologist as well as dermatologist!!
The day after he sees the pediatric neuro, at 2 months and 2 weeks old ... I fell ..and was hospitalized ... and diagnosed with myasthenia gravis. (Oh ...so I'm really sick?)
The pediatric neuro finds much to be concerned about with this child ... possible seizures, bad muscle tone (Neonatal MG only lasts for the 6 weeks the mother's antibodies are in their system ... so by the time he saw him at 2 months, the MG was gone ...however, he still had significant problems) and poor reflexes.
By summer, the neuro gets very concerned, he doesn't like the shape of his head ...and it seems to be changing. Off to CT scan and MRI we go ...to find out Bj's brain did not fully develop (bi frontal lobe atrophy) as well as Craniosynostosis and Arnold Chiari Malformation type 1.
I sat in the neuro's office staring at the views of my son's brain ...the malformed brain clearly visible ... brain where there should be no brain (ACM) and no brain where clearly there should be brain ... was not an easy sight for a mother to see.
I was devastated ... to say the least.
At 9 months old, he could not eat baby food, he was unable to swallow the food. He could not roll over ... and was ...essentially, not much farther than a 2 month old baby in development. We started on speech therapy to teach him to eat .. .physical therapy to give him strength ... and occupational therapy ..I don't remember what we did.
We worked hard ...and hard ... and hard ...and at home we worked with him, played with him and loved him.
When he was a year old, his PT was thrilled ... we have a miracle on our hands ... that's what he said. He was sure that he'd have Benjamin walking in about 3 months. That would put his first steps at the bottom rung of normal ... but he'd be there.
THIS was exciting news.
He turned a year old the week before Christmas ...and 2 days after Christmas there was a balloon across the living room from him. He pulled himself up on the couch (WHAT? HOW??) and took 4 steps to retrieve the balloon!!!
My father got the pictures ... we were stunned. It must have been a fluke! We stood him up and my father held out his arms ..and Benjamin ..who just 3 months earlier couldn't turn over, or eat ... and who the PT thought he'd have walking in 3 months ...toddled over to my Dad.
We went to PT the next week ..after a weekend of stepping ... and I was not going to tell the PT, I wanted him to be shocked in therapy. We walked into Children's Medical Center and the PT saw my face and fell to the ground. "You're kidding!"
My face, evidently was not a poker face.
Speech ...did not come so easily .. at 18 months, he had zero words, and really did not communicate at all. Didn't point when he wanted something to drink, didn't let us know when he was hungry ... just smiled, laughed and giggled ...
So, the SpT thought maybe, we should start him on signing. She taught him the sign for "more" ..and he did it back ....and got more cheerios ..and he smiled ...and did it again ...and caught on just that quick.
Within 2 weeks, he had over 35 signs. (It helped that I knew sign language). Suddenly, he said "more" and then later in the day "Drink" and then later in the day
mamma
As he hit 3 we started to try to get him into the developmental preschool program. He had a diagnosise of autism (PDD) and developmental delay, they were quite obvious in his skills ...
but the school chose to fight us ... which, led into a due process (we won) and the next year another (we won) and the next year ... he got into a school called Little Light House, my Oasis ...my year of rest ... my relief.
A christian school for children with special needs ... for ages 0 to kindergarten ... and ... they provided speech, PT and OT ... and I did not have to fight with the school system or take him to therapy. He got it all ...and he thrived ..and he did well. And he only got one year because of his age ... and he graduated ...one of the saddest/happiest days of my life. He'd made so much progress ..learned to socialize a bit ...and learned to ride a tricycle.
But the peace, the comfort and the gentility of TLLH would be over and back to the public school ... we had to go.
It took 2 more years of fighting to get them to agree to give him services. Then, the fight continued clear through the 7th grade ...when we yanked him out of the school after he was beaten up so badly the bruises didn't heal for 3 weeks ...and they couldn't/wouldn't guarentee his safety.
During this time, he went to an outpatient Occupational therapy program ...and got therapy for the sensory integration dysfunction that so often goes with PDD... and something happened.
He started to look people in the eye ..and stopped spinning ... and he started to interact ...and we realized ... he wasn't autistic!
His speech patterns were odd ... auditory processing disorder ...really interferred with his ability to process speech. We were shocked to go to the movie Star Wars Episode 1 and hear Jar Jar Binx speak in what we called Benjaminese!!
He was 10 when the PDD diagnosis was removed. But he still had an IQ below 75.
Things were still HARD for him.
But he worked ... and he worked ...and he fought hard against the odds ...
and he came up for a 3 year review ..and something odd happened with his IQ score ..it was over 90. That's normal!!!
His non verbal IQ score was still below 70, so it was significant learning disability ..and he stayed in special education.
During all this time ..the neuro is working with us ... a diagnosis of
OCD came about age 3
Tourette's Syndrome came about age 5
Epilepsy came around age 6, confirmed in 4th grade with a grandmal seizure.
Asthma
Allergies
Excema ... he was terribly allergic to dairy and had a rash from the time he was 1 day old, until he was 11.
Then one day, he talked his dad into buying him an ice cream cone ..and he broke out ...BAD ...head to toe ...and then .. he never broke out again.
He could suddenly tolerate milk.
At 9 years old, he was on 11 different prescription medications.
He had a pulmonologist
dermatologist
neurologist
endocrinologist
Gastroenterologist
Orthopedist (who didn't do much other than say that we should have gone ahead and put him in the foot braces as an infant, and here put these orthotics in your shoes)
One by one ...the doctor's stopped seeing him ..except the neuro ...
It was amazing to find him discharged from the clinics ... as medications started to be removed one by one. Each one felt like a miracle ...
Then last fall we realized we were down to
A pediatric neuro ..and 2 medications and 2 OTC meds.
And the pediatric neuro removed the 1 medication ... EEG was clear ... no more anti seizure med ...
and gave Bj the option of the medication for his tourette's syndrome ...Bj chose to stop it.
And yesterday, we went to see this neuro that Benjamin had seen since he was 2 months old ...and we talked ...
and the neuro grinned.
And told Benjamin how proud he was of him. How happy he'd been to be able to watch the him grow, change, develop ... and
discharged him from the clinic!
Benjamin is now on benedryl and melatonin ... for allergies and to make sure he sleeps good (we don't want those other problems returning for lack of rest)
and a rescue inhaler for his asthma ... but he hasn't used it since August.
His IEP is set up for his plans on going to culinary arts school ... and possibly college.
This little boy, who we never knew if he was going to walk, or talk ... and when he did ... it wasn't ok ...
Is now 16 years old ... popular ... and thriving. (complete with driving mom nuts!!)
A MOTHER'S HEART
Every mother has 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.
Written by Peggikaye Eagler
January 30, 2000
I don't know how to express what I'm feeling ... when he was born, he was SO sick. He had neonatal myasthenia gravis, only we didn't know it. The symptoms were severe, but they did not know it was MG because they did not know that *I* had MG. I'd been misdiagnosed with everything from pre diabetes to post partum depression (Should I see a psychiatrist if my depression is making me this ill? Doctor's response ... "No, you need to stop being a baby about being a new mother" and she walked out of the room. Making matters worse, we found out that she'd actually TESTED me for myasthenia ...and gotten positive results on ALL the tests, but chose to decide they were not true and I was malingering ...yes, she used that word on her report to my PCP)to Chronic Fatigue Syndrome ...
So Benjamin is born ...and not healthy ...and before he's even 2 months old ...he has a GI specialist, a pediatric neurologist referral and a pediatric orthopedist and pediatric endocrinologist as well as dermatologist!!
The day after he sees the pediatric neuro, at 2 months and 2 weeks old ... I fell ..and was hospitalized ... and diagnosed with myasthenia gravis. (Oh ...so I'm really sick?)
The pediatric neuro finds much to be concerned about with this child ... possible seizures, bad muscle tone (Neonatal MG only lasts for the 6 weeks the mother's antibodies are in their system ... so by the time he saw him at 2 months, the MG was gone ...however, he still had significant problems) and poor reflexes.
By summer, the neuro gets very concerned, he doesn't like the shape of his head ...and it seems to be changing. Off to CT scan and MRI we go ...to find out Bj's brain did not fully develop (bi frontal lobe atrophy) as well as Craniosynostosis and Arnold Chiari Malformation type 1.
I sat in the neuro's office staring at the views of my son's brain ...the malformed brain clearly visible ... brain where there should be no brain (ACM) and no brain where clearly there should be brain ... was not an easy sight for a mother to see.
I was devastated ... to say the least.
At 9 months old, he could not eat baby food, he was unable to swallow the food. He could not roll over ... and was ...essentially, not much farther than a 2 month old baby in development. We started on speech therapy to teach him to eat .. .physical therapy to give him strength ... and occupational therapy ..I don't remember what we did.
We worked hard ...and hard ... and hard ...and at home we worked with him, played with him and loved him.
When he was a year old, his PT was thrilled ... we have a miracle on our hands ... that's what he said. He was sure that he'd have Benjamin walking in about 3 months. That would put his first steps at the bottom rung of normal ... but he'd be there.
THIS was exciting news.
He turned a year old the week before Christmas ...and 2 days after Christmas there was a balloon across the living room from him. He pulled himself up on the couch (WHAT? HOW??) and took 4 steps to retrieve the balloon!!!
My father got the pictures ... we were stunned. It must have been a fluke! We stood him up and my father held out his arms ..and Benjamin ..who just 3 months earlier couldn't turn over, or eat ... and who the PT thought he'd have walking in 3 months ...toddled over to my Dad.
We went to PT the next week ..after a weekend of stepping ... and I was not going to tell the PT, I wanted him to be shocked in therapy. We walked into Children's Medical Center and the PT saw my face and fell to the ground. "You're kidding!"
My face, evidently was not a poker face.
Speech ...did not come so easily .. at 18 months, he had zero words, and really did not communicate at all. Didn't point when he wanted something to drink, didn't let us know when he was hungry ... just smiled, laughed and giggled ...
So, the SpT thought maybe, we should start him on signing. She taught him the sign for "more" ..and he did it back ....and got more cheerios ..and he smiled ...and did it again ...and caught on just that quick.
Within 2 weeks, he had over 35 signs. (It helped that I knew sign language). Suddenly, he said "more" and then later in the day "Drink" and then later in the day
mamma
As he hit 3 we started to try to get him into the developmental preschool program. He had a diagnosise of autism (PDD) and developmental delay, they were quite obvious in his skills ...
but the school chose to fight us ... which, led into a due process (we won) and the next year another (we won) and the next year ... he got into a school called Little Light House, my Oasis ...my year of rest ... my relief.
A christian school for children with special needs ... for ages 0 to kindergarten ... and ... they provided speech, PT and OT ... and I did not have to fight with the school system or take him to therapy. He got it all ...and he thrived ..and he did well. And he only got one year because of his age ... and he graduated ...one of the saddest/happiest days of my life. He'd made so much progress ..learned to socialize a bit ...and learned to ride a tricycle.
But the peace, the comfort and the gentility of TLLH would be over and back to the public school ... we had to go.
It took 2 more years of fighting to get them to agree to give him services. Then, the fight continued clear through the 7th grade ...when we yanked him out of the school after he was beaten up so badly the bruises didn't heal for 3 weeks ...and they couldn't/wouldn't guarentee his safety.
During this time, he went to an outpatient Occupational therapy program ...and got therapy for the sensory integration dysfunction that so often goes with PDD... and something happened.
He started to look people in the eye ..and stopped spinning ... and he started to interact ...and we realized ... he wasn't autistic!
His speech patterns were odd ... auditory processing disorder ...really interferred with his ability to process speech. We were shocked to go to the movie Star Wars Episode 1 and hear Jar Jar Binx speak in what we called Benjaminese!!
He was 10 when the PDD diagnosis was removed. But he still had an IQ below 75.
Things were still HARD for him.
But he worked ... and he worked ...and he fought hard against the odds ...
and he came up for a 3 year review ..and something odd happened with his IQ score ..it was over 90. That's normal!!!
His non verbal IQ score was still below 70, so it was significant learning disability ..and he stayed in special education.
During all this time ..the neuro is working with us ... a diagnosis of
OCD came about age 3
Tourette's Syndrome came about age 5
Epilepsy came around age 6, confirmed in 4th grade with a grandmal seizure.
Asthma
Allergies
Excema ... he was terribly allergic to dairy and had a rash from the time he was 1 day old, until he was 11.
Then one day, he talked his dad into buying him an ice cream cone ..and he broke out ...BAD ...head to toe ...and then .. he never broke out again.
He could suddenly tolerate milk.
At 9 years old, he was on 11 different prescription medications.
He had a pulmonologist
dermatologist
neurologist
endocrinologist
Gastroenterologist
Orthopedist (who didn't do much other than say that we should have gone ahead and put him in the foot braces as an infant, and here put these orthotics in your shoes)
One by one ...the doctor's stopped seeing him ..except the neuro ...
It was amazing to find him discharged from the clinics ... as medications started to be removed one by one. Each one felt like a miracle ...
Then last fall we realized we were down to
A pediatric neuro ..and 2 medications and 2 OTC meds.
And the pediatric neuro removed the 1 medication ... EEG was clear ... no more anti seizure med ...
and gave Bj the option of the medication for his tourette's syndrome ...Bj chose to stop it.
And yesterday, we went to see this neuro that Benjamin had seen since he was 2 months old ...and we talked ...
and the neuro grinned.
And told Benjamin how proud he was of him. How happy he'd been to be able to watch the him grow, change, develop ... and
discharged him from the clinic!
Benjamin is now on benedryl and melatonin ... for allergies and to make sure he sleeps good (we don't want those other problems returning for lack of rest)
and a rescue inhaler for his asthma ... but he hasn't used it since August.
His IEP is set up for his plans on going to culinary arts school ... and possibly college.
This little boy, who we never knew if he was going to walk, or talk ... and when he did ... it wasn't ok ...
Is now 16 years old ... popular ... and thriving. (complete with driving mom nuts!!)
A MOTHER'S HEART
Every mother has 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.
Written by Peggikaye Eagler
January 30, 2000
Wednesday, January 16, 2008
LEGAL to Drive!
LEGAL to drive ....
While it won't help with the issues in my previous post ...
he CAN now drive himself to work and back !!! YEAH!!!
He CAN go to the grocery store for us !!!
He CAN take him and his brother to church activities.
AND ... most importantly to him .. he CAN (most likely) drive to see his girlfriend that lives 2 towns over!!! (who he hasn't seen since October!!!)
Tuesday, January 15, 2008
Needles into my shoulder
Yesterday, I got a needle into my shoulder.
This, is not that unusual ... it happens more than I would like it to.
My acromioclavicular joint is not in good shape. I've had surgery once to fix it. It helped ... a little. It made the injections work, whereas before the surgeries, the injections were useless.
(for those still trying to read acromioclavicular .... I googled AC joint ..and copied it ... no way could I remember how to spell that, and I have no idea how to pronounce it. However, when I say AC joint, people think ACL joint and assume I'm talking about my knee ...)
So, yesterday, I got my injection ... this last summer, my orthopedist gave me the injection and a heavy sigh and said ... this isn't going to work for much longer. He let me know that another operation was in my future.
ARGH!
I was supposed to go back in October and discuss it ...however ... he had to cancel ..and Don got ill again ... and then ...well ...then life happened. As my shoulder got more and more painful ...and the pain started, again, to interfere with life ... sleeping, driving, sitting watching TV, petting the cat, brushing my hair (and it's my left hand, I'm right handed!) I realized ... I HAD to have a shot!!
So, last friday I made a desperate call to my ortho's office. Shockingly, they got me into the physician's assistant. She gave me the shot ... it hurt like the dickens ...I could FEEL that she had the needle right in the middle of the inflammation ...
however ... Dr. H's shots hurt worse ... I think she let the cold stuff she sprayed on me set longer ...or shorter ...or something. The needle going in didn't hurt as bad.
But ... I'm sitting here ... and my arm ... is killing me. The tendonitis from my shoulder is usually relieved by the shot ... and this .. isn't even touching it! EEKS.
So, I'm sitting here pondering ... will it go away in the next few days (oh please God!!) ... or ... did I just go too long between shots?
or is there just too much damage?
or is this a new problem?
or is this LUPUS? (duh)
or .. what is going on ...
There is no more pain control measures to take ... prednisone, celebrex and darvocet ... well, I *could* call and ask for higher narcotics ...but then, what to do when surgeries come along (and they always do) and I've maxed out my narcotics use?
So I sit here and I move my shoulder in odd positions ...and I wonder ... what next.
If it's not better by Monday, I call the ortho ... and say "help"
I do know ... I can't have surgery until Don starts driving.
I can't have surgery until my teeth are fixed.
I have no dental insurance ..and there is no help in dental care for adults in Oklahoma. (IF you have no insurance whatsoever, you can get some help ..however, if you have medicare ...that is considered insurance ...the fact that medicare covers NO dental work whatsover ...meaning, you have no dental insurance ... means nothing. If you have medicare, you cannot get the help offered to the un insured.
The really odd thing ..if you get an impacted tooth, medicare won't even cover the antibiotics ... how's that for how do ya do?)
Don has not improved since about ... September ... he's stagnated in his progress ... right now, I do not think he will be driving again. I'm trying to wrap my brain around the fact that this .. is probably our new level of normal. *I* am the sole driver for our household. *I* am the primary caregiver for my husband ... and *I* am the one responsible for making sure that all our shopping gets done, all our bills get paid and we all get from point A to point B ...he is really, in spite of all that I've hoped and prayed for ...not progressing ..and while I'm incredibly grateful for where he is ... I need to adjust to where he is not going.
So ...I need surgery but can't have it while I'm the only driver.
I need surgery ..but can't have it with my teeth like this.
I'm going to be the only driver for the foreseeable future
and ... there is no help for my dental needs ...
and in the meantime ... I twist my shoulder ... wondering what to do.
This, is not that unusual ... it happens more than I would like it to.
My acromioclavicular joint is not in good shape. I've had surgery once to fix it. It helped ... a little. It made the injections work, whereas before the surgeries, the injections were useless.
(for those still trying to read acromioclavicular .... I googled AC joint ..and copied it ... no way could I remember how to spell that, and I have no idea how to pronounce it. However, when I say AC joint, people think ACL joint and assume I'm talking about my knee ...)
So, yesterday, I got my injection ... this last summer, my orthopedist gave me the injection and a heavy sigh and said ... this isn't going to work for much longer. He let me know that another operation was in my future.
ARGH!
I was supposed to go back in October and discuss it ...however ... he had to cancel ..and Don got ill again ... and then ...well ...then life happened. As my shoulder got more and more painful ...and the pain started, again, to interfere with life ... sleeping, driving, sitting watching TV, petting the cat, brushing my hair (and it's my left hand, I'm right handed!) I realized ... I HAD to have a shot!!
So, last friday I made a desperate call to my ortho's office. Shockingly, they got me into the physician's assistant. She gave me the shot ... it hurt like the dickens ...I could FEEL that she had the needle right in the middle of the inflammation ...
however ... Dr. H's shots hurt worse ... I think she let the cold stuff she sprayed on me set longer ...or shorter ...or something. The needle going in didn't hurt as bad.
But ... I'm sitting here ... and my arm ... is killing me. The tendonitis from my shoulder is usually relieved by the shot ... and this .. isn't even touching it! EEKS.
So, I'm sitting here pondering ... will it go away in the next few days (oh please God!!) ... or ... did I just go too long between shots?
or is there just too much damage?
or is this a new problem?
or is this LUPUS? (duh)
or .. what is going on ...
There is no more pain control measures to take ... prednisone, celebrex and darvocet ... well, I *could* call and ask for higher narcotics ...but then, what to do when surgeries come along (and they always do) and I've maxed out my narcotics use?
So I sit here and I move my shoulder in odd positions ...and I wonder ... what next.
If it's not better by Monday, I call the ortho ... and say "help"
I do know ... I can't have surgery until Don starts driving.
I can't have surgery until my teeth are fixed.
I have no dental insurance ..and there is no help in dental care for adults in Oklahoma. (IF you have no insurance whatsoever, you can get some help ..however, if you have medicare ...that is considered insurance ...the fact that medicare covers NO dental work whatsover ...meaning, you have no dental insurance ... means nothing. If you have medicare, you cannot get the help offered to the un insured.
The really odd thing ..if you get an impacted tooth, medicare won't even cover the antibiotics ... how's that for how do ya do?)
Don has not improved since about ... September ... he's stagnated in his progress ... right now, I do not think he will be driving again. I'm trying to wrap my brain around the fact that this .. is probably our new level of normal. *I* am the sole driver for our household. *I* am the primary caregiver for my husband ... and *I* am the one responsible for making sure that all our shopping gets done, all our bills get paid and we all get from point A to point B ...he is really, in spite of all that I've hoped and prayed for ...not progressing ..and while I'm incredibly grateful for where he is ... I need to adjust to where he is not going.
So ...I need surgery but can't have it while I'm the only driver.
I need surgery ..but can't have it with my teeth like this.
I'm going to be the only driver for the foreseeable future
and ... there is no help for my dental needs ...
and in the meantime ... I twist my shoulder ... wondering what to do.
Monday, January 14, 2008
Saturday, January 12, 2008
Mandisa - God Speaking
GOD SPEAKING
Have you ever heard a love song that set your spirit free?
Have you ever watched a sunrise and felt you could not breathe?
What if it's Him?
What if it's God speaking?
Have you ever cried a tear that you could not explain?
Have you ever met a stranger who already knew your name?
What if it's Him?
What if it's God speaking?
Who knows how to get ahold of us?
Get our attention to prove He is enough
He'll do and He'll use whatever He wants to
To tell us, "I love you."
Have you ever lost a loved one who you thought should still be here?
Do you know what it feels like to be tangled up in fear?
What if He's somehow involved?
What if He's speaking through it all?
Who knows how to get ahold of us?
Get our attention to prove He is enough
He'll do and He'll use whatever He wants to
To tell us, "I love you."
His ways are higher.
His ways are better.
Though sometimes it's strange,
What could be stranger than God in a manger?
Ooooohhhhhhhh....
Who knows how to get ahold of us?
Get our attention to prove He is enough
Who knows how to get ahold of you?
Get your attention to prove He is enough
He'll do and He'll use whatever He wants to
To tell us, "I love you."
God is speaking, "I love you."
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