Tuesday, May 6, 2008

Collin's nights



Tonight why I was laying in Collin’s sweet little bed trying to comfort him I couldn’t help but start to reflect on all of the many nights that we have spent cuddling . As a tear rolled down his face it instantly reminded me of how hard and cruel nights are for him. During the day he has an amazing way of smiling through the pain and making us all feel good and forget about what he has to endure on a daily basis. As Collin touches my face with his sweet little hand I can’t help but think of him as a baby. Most little babies have a blanket or a pacifier. Not my sweet little boy, he found comfort in touching his mommy and daddy’s faces. Collin was born completely blind and got to know us by sweetly stroking our faces. He continues to find comfort as his sweet little hand touches my face and he cuddles up so close that he can feel my breath on his face. His nights remind me of a rip tide in the ocean. From a distance it doesn’t look so bad but as you get closer you realize how fierce and powerful it is. From a distance as I peek in on Collin he looks so peaceful but then as I get closer I hear him gasping and having a hard time breathing. It is as if he was pulled out and got taken under by a hard wave and just can’t find his way back to the surface. Once a bad night starts it only seems to get worse. In a rip tide you might worry about hitting your head on rocks on the ocean floor but with Collin I worry about walking into his room to find him hurting himself to the point that his P.J.’s and pillow case are bloody. We have tried medication after medication and nothing seems to help him. I can count on one hand how many nights of his almost eight years he has slept through the night. Jason and I walk around like zombies functioning on little sleep but not Collin. He does not take one second for granted during his day hours. He CHOOSES to enjoy them! Over the years I have accepted that it is not about quantity of life but rather quality. Yes, I would love to wake up tomorrow and find out that someone has come up with a cure or treatment for TTD but that is not going to happen. So, in the mean time we are trying to find a way to make his amazing little life a comfortable and wonderful one! I took him to see his neurologist on Friday and she prescribed a new medication, clonazepam, to help him with the pain. As I look over and watch my restless little boy in Jason’s arms I can’t help but pray that this one will be the one that will work. That his restless, pain filled nights will start to disappear. After a rip tide leaves and the ocean calms it is a beautiful site. I can not wait to see that beautiful scene in my home some day.

10 comments:

zuniga family said...

Seriously, I can't read your blogs anymore because I get so teary eyed and think of what you endure! You are one amazing lady! I really don't think I could do it! Your son is absoutely beautiful and you are so lucky to have him forever! You ROCK!

Kyleen said...

Julie,
I haven't stopped by in a while. This post is very touching and moving. Only words that can be written form a loving moms heart. You are such a sweet family and I pray for all of you often. Thank you for sharing.

Hey Collin! You and I have something in common - we both take the same medication! Hope it works as well for you as it does me.

Regan, happy belated birthday! Looks like you had tons of fun.

I also strolled through some of the previous entires. I LOVE THE PICTURES!!!! Looks like you are having so much fun. I know you have tough days and rough nights so I am very glad that you can make every moment count and capture it in pictures. I will just have to get scrapping again! Such a photogenic family.

Love, Kyleen

Jackie Rama said...

I loved this post Julie. I didn't know Collin was born blind and was so touched that he came to recognize you by touching your face. He sure is a precious little guy. You are amazing parents!

Mandy said...

Oh my heart just hurts for Collin and for you, you have a lot more on your shoulders than I have to bare. It must be so hard to watch your sweet boy be in pain and have no control over that. My hopes are prayers are with you that this may be the medication that brings relief!

dustin and karen... said...

God sure blessed Collin with such a great set of parents...and sister! :) You are such a great example and inspiration! I hope that I can be as great of a mother as you are ! You are seriously supermom! :)

Erin said...

Your strength amazes me Julie.

Amy & Kyle said...

My mom and I read this post together last night and bawled our eyes out. Your poor baby. His life is so much better b/c you guys are such great parents though. I can't imagine a child with his condition without such caring and loving parents. We love you!

Eva & Mike said...

Your blog always reminds me to be grateful for the many people out there like you who make this world a better place. Thank you for your example and strength!

Katie said...

I love Collin so much! You are such a wonderful mom, Julie! What n amazing entry- you really need to write a book someday. He truly is a special little boy that brings tons of joy to everyone he meets. We are so blessed to be friends with your family. Love ya!

Kristin said...

Julie of course I remember you! I love these blogs and being able to see and read about everyone's lives. I remember meeting lil Collin one time at church when he was just a baby and I think he had just had surgery? I think that was the last time I saw you. I read this post and your poem... man talk about tear jerkers! You are sooo strong. I remember taking Madison to get her shots for the first time and I was bawling to see her in pain for those few moments and not being able to do a thing. Being a mom is so rewarding and so challenging at times...Thank heaven for our eternal perspective!!!! Thanks for writing me. Love ya!