I want to start this entry tonight with…. I am venting.. I am ok … just venting. I HATE Trichothiodystrophy! This awful beast that Collin has to live with and fight every day! I hate it! Collin is in pain 90 % of the time. He usually can handle it pretty well but some days are just to much for him. It is so heart breaking as a mother to see your baby in pain and not be able to do anything. TTD is such awful illness it effects every singe aspect of his life. He is blind, deaf, autistic, mentally and physically handicap, allergic to the sun, deficient immune system, and to date he has had ten surgeries. What is amazing about all of this is that most of this doesn’t even bother Collin. Most of this he can smile through and show how completely amazing he is. He is my hero!!!! Some day I hope that I can be half the person that he is today. Why do I even bring all of this up you might be asking??? Well, this was one of those weekends that was just so hard. Saturday Collin was in so much pain that when I hopped in the shower for a few minutes he dug his face into the carpet so much he tore his face up. He was in so much pain that he wanted to cause other pain to take his mind off of it. Cause a pain that he could handle.
Then today he woke up in so much pain that he lashed out at me and busted my lip open. The only reason that I am bringing this up is because for all of you that see me and I have to explain.. I want you to know that Collin is very good boy. He does not lash out to be mean. He lashes out because he doesn’t know what else to do. He is in so much pain and I am mommy I should be able to fix it and when I can’t I know it frustrates him. He doesn’t do it to anyone else, that is a very good thing. At my breaking point I thought that I would think of the good things during these hard times and these are some of the things that I have come up with…..
Collin LOVES his baby Tad. It conforts him!
I am grateful for amazing doctors and medication that help Collin. We have been blessed with the best of the best.
Collin LOVES pictures!!! They comfort him and he loves to look at pictures that Uncle Ray took of Disney Light parade that I put in these sheet protecters.
Regan asked me what I was taking pictures of and I told her. She ran out of the room and came back with her big lolly pop and said that it made her happy when Bubba doesn't feel well. (It is so hard on her as well.)
These are beautiful flowers that my next door neighbor brings me. He has the most amazing garden, it is what I would picture the book the secret garden to be like. He brings them to me and I can't help but smile when I see them and know that someone thought of me.
As crazy as it sounds I am grateful for every bit of this. I know that my little boy is so very special. He is so special that he had to be placed in the sweet body that he has to be protected from Satan’s grasp. I can’t even begin to imagine what a righteous spirit he has. What an amazing day it will be to see him in full glory in Heaven some day. How could I not be grateful to protect and take care of such a PERFECT little boy.
Ok, so our week would never be complete with out a Collin crisis. Friday night Collin was crawling and feel and hit his mouth on our hard wood floors pushing his front two teeth up into his gums. It was very scary. I called my sister that is and ER nurse... didn't know what to do. Then I called a friend that is a dentist. He told me to call Collin's dentist's on call service. They called him in an atiboitic and we went into his office yesterday and things checked out good. His teeth are already coming down.
This is what happens when we are bored during the day and Collin is at school. Can you tell what her masks are??
