Monday, February 18, 2008

Just venting..

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.


Wards said...

Julie you amaze me and are such an example! I don't know how you always stay so calm and positive! You and your family are so amazing and inspiring! I keep you guys n my thoughts and prayers always! Thanks for your kind words! I hope you have a better week!

Grumpwurst (Ray) said...


In the gym, we have a saying: "Pain is just weakness leaving the body"

That's the only way I can explain how Collin makes it through the day with it primarily being a painful existence. If it's his weakness leaving his body, then he's got super-human strength

Amy and family said...

(((Julie))), I'm so sorry that you and your family have to try to cope with this horrible disease. I also know that you and Jason and Regan were chosen to be Collin's family because Heavenly Father knew that you would be the perfect ones to love him and care for him and truly appreciate the good moments when they come along. And you're right about Collin--I can't even imagine who he must really be! Like you said, he was placed here on this earth with the problems that he has for a reason--Satan has no grasp on him. He will be with you, Jason, and Regan forever and someday you will be able to know who he truly is. I hope that he has lots of good days soon! You are an inspiration to me!

zuniga family said...

Honestly, this brought tears to my eyes to hear how much pain he goes through. I seriously don't know how you do it! You are one amazing mother! I think I would fall apart! By the way, I got Sal's shirt at They have some good ones. I got him some that say, "Smarter than the president," "All mommy wanted was a backrub," "My daddy can beat up your daddy," and "Don't hate the playa, hate the game." Cute and funny shirts!

Christamae said...

:( I am sorry that Collin had such a hard weekend. He is so strong and so are you. Sending lotsa hugs.


munyer jerk chicken said...

just last night i went to an enrichment activity all about thorns (we had thorny rose stems as decorations... no flowers!). we were reminded that the thorns make us stronger and help us to appreciate the flowers even more. it was great to get on your blog and feel your gratitude for thorns... and for flowers. you're an example to us all!