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Kyle hugging Mommy in Ocean City, MD in July 2006. He loved giving me hugs. I loved getting his hugs. I think he was trying to squeeze the stuffing out of me.
Welcome to Kyle's Web Page. It chronicles Kyle's heroic struggle to beat his Mitochondrial Disorder. ^Kyle^ lost his battle on December 29, 2006 at the age of 8 years 1 month and 18 days. He was/is the Light of My life. He was the bravest and strongest boy yet at the same time very kind and loving. His smile could light up a room and I am sure Heaven is brighter because he is there. His laugh was infectious and he had many charms that he worked on the female employees of Columbus Children's Hospital. A charmer Kyle was and IS.
Kyle's mito disorder caused him to have a central line (IV) for his nutrition(TPN). He had a gtube to drain his stomach and a jtube to vent and an ileostomy. He also suffered from a neutrophil chemotaxsis disorder a type of immune deficiency.Kyle suffered a life altering infection in May 2004. As a result of the infection Kyle lost both his thumbs and his right leg below the knee and his left leg through the knee.
Please sign the guestbook and let us know that you stopped by Kyle's page.
Tubeman unvieled. Love this picture of Kyle as Tubeman as it shows his SMILE
The following poem was written for Kyle by one of my fellow teachers at TDA. It captures Kyle perfectly!!!!!
KYLE THE SUPERHERO
BY
AMY WHITAKER
Kyle AKA Tubeman
When I think of superheroes
several come to mind.
Each possess powers
very hard to find.
Spiderman can scale
buildings wide and tall.
Superman bends steel
he's the strongest of them all.
Batman and Robin
can always save the day.
The Incredible Hulk
crushes all in his way.
But when I think of superheroes
I always think of you
For you have more courage
than any of them do.
glitter-graphics.com
Amazing Kyle
Journal
Monday, October 13, 2008 4:11 PM CDT Voice of Truth by Casting Crowns
Oh what I would do to have
The kind of faith it takes to climb out of this boat I'm in
Onto the crashing waves
To step out of my comfort zone
Into the realm of the unknown where Jesus is
And He's holding out his hand
But the waves are calling out my name and they laugh at me
Reminding me of all the times I've tried before and failed
The waves they keep on telling me
Time and time again, 'boy, you'll never win!'
'You'll never win!'
But the voice of truth tells me a different story
The voice of truth says, 'Do not be afraid!'
And the voice of truth says, 'This is for my glory'
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth
Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have the strength to stand
But the giant's calling out my name and he laughs at me
Reminding me of all the times I've tried before and failed
The giant keeps on telling me
Time and time again, 'Boy, you'll never win!'
'You'll never win!'
But the stone was just the right size
To put the giant on the ground
And the waves don't seem so high
From on top of them lookin' down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me
I will choose to listen and believe the voice of truth
Why would I start with that song well it all goes back to SCUBA lessons. SCUBA lessons have provoked anxiety attacks in me that I have experienced only two other times and those were in 2004 when we were not sure Kyle would make it through his septic shock episode and the last week of Kyle's life.
During one of the my attacks during the middle of the night, this song came into my mind. I knew I needed to turn my anxiety over to God because I was not going to be able to do this on my own. I kept playing my only SCUBA experience while was a major flop over and over in my head. I had to keep turning it over because I would do fine for a few hours or a day or so then it would rear its ugly head.
On the way to our first SCUBA lesson on Thursday guess what song came on. Yes, you guessed it Voice of Truth. I knew I would be OK!!!! Well that would be an exaggeration because as the 2 hour lecture drug on I felt my anxiety increasing and my blood pressure rising. I kept running the words through my head.
I am happy to report I made it through my first class and passed each skill. To be perfectly honest there were several times I was ready to climb out of the pool and be done. At those moments I pictured Kyle's face and his determination to walk with his go go gadget legs and when he was determined to knee walk to get on the submarine ride on our Disney Cruise.
Tomorrow is our second class and I am already nervous. Trying to remember to turn it over because I know I can not do this without Divine Intervention.
Kelsey is half mermaid and breezed through the class. She is a natural and I am slowing her down. I am her burden to bear this class. Seems fitting since it is usually the other way around with teenagers. The instructor said if I was in an adult only class I would be at the top of the class instead I am with Kelsey the mergirl and at the bottom of the class.
SCUBA classes will broaden my horizons and make me humble. The whole swimming/water experience has made me very humble.
To end on a light note, I am going to borrow a topic from one of my favorite blogs. It is called not me Monday. This is a chance to be brutally honest about some of the things you did this week.
Not me, I did not pull my hair into a ponytail 5 days this week. Not me because that would mean that I did not manage my time well enough to have time to get my hair done!!!
Not me, I did not wear the clothes I wore to work out two evenings to bed. Not me because that would mean that I was smelly when I crawled into bed.
Not me, I did not walk pass the same basket of laundry on the stairs 5 times before I carried it up the stairs. Not me because that would mean that I was being lazy or preoccupied.
Not me, I did not have to wash a load of laundry a second time because I forgot. Not me because that would mean that I did not keep on top of the laundry.
Not me, I did not call and apologize for missing a meeting only to find out the meeting was the next day. Not me because that would mean that I was not as organized as I like to be.
Hope you enjoyed reading my Not Me experiences this week. I would love to hear your Not Me experiences.
Please pray for our friends that are struggling especially Kody, Brody, Colyn and all our friends waiting for organs.
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