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.