A Wave of Sadness

Most of the time I'm fine. Most of the time I focus on all of the positive things in my life: our sweet son, my wonderful husband, amazing parents, good friends, a home, etc. But sometimes the seriousness of Nicholas' illness completely overwhelms me and I just...feel...sad.


I look at other kids in our neighborhood running through sprinklers on hot summer days and am sad that Nicholas may never do that. I see babies taking first steps on chubby little legs and am I sad that our baby boy never achieved that milestone. I look at Nicholas's angelic little face and wonder how long I get to stare into those beautiful hazel eyes of his. Five months? Five years? Thirty-five years? And no matter how long it will never be long enough.


The one thing that completely overwhelms me and makes me feel completely helpless is when I read comments on the Petition to Cure SMA from parents/loved ones/friends/family members who have lost a child to SMA. "How do they get through it?" I think. "How in the world do they do it?" My hearts breaks for each and every loss and I spend several minutes reading each comment and heaving heavy hard sobs, my eyes blurred with hot tears. Then my thoughts wander to my own strength and I wonder if I can do it, or if I will even have to.



I pray every single day without fail for a cure for our son and the many other children who are affected by Spinal Muscular Atrophy. I want him to stay as healthy as he is now for as long as possible so that one day in the very near future his neurologist will call us and say, "Come in right away! Researchers have approved a cure for children with SMA, come in to our hospital and get Nicholas the treatment that will save his life!" That day will be the best day. I will be happy. I won't have to constantly worry about losing my child. I won't feel this sadness anymore. My little boy will be okay. The wishes and dreams his daddy and I had for him before he entered this world will come true. That is my perfect ending.