A Mother's Point of View

I cannot ignore it anymore. I have tried everyday for the past year and a half to ignore it-the fact that my child will most likely leave this Earth before me. The thought of losing my son makes me totally and utterly miserable. I look at him and I have to leave the room because I start crying. No parent should ever have to feel this way. No mother should ever have to live everyday knowing that someday her child will die.

Such is the nature of having a son with a terminal illness. Watching my child get weaker and sicker month by month has finally taken it's toll on me. Since April of this year when Nicholas got bronchitis, he has grown weaker. His wrists are floppy, his knees are contractured, his scoliosis is getting worse, he can no longer eat by mouth, he does not enjoy sitting up as much, he cannot bring his hands to his face, he cannot speak like a typical two and a half-year-old. My happy boy is not so happy all the time. He doesn't smile as much as he used to. He just wants to lie in front of the TV a lot of the time and watch his favorite movies and cartoons.

It breaks my heart.

As a mom, I want the best for my kids. I want them to be happy. I want them to experience life to the utmost. I want to kiss away the hurts, and make everything better. But I cannot make SMA better. I cannot make it go away, and that, is a devastating reality.

My child will never get better. He will never recover. He will always be this way and continue to get worse until he goes to Heaven. Half of the children with SMA die before the age of two. That means that Nicholas has beaten the odds, but it also feels like the clock is ticking and no one knows when time will run out. The only hope I can cling to is that medical researchers will find a cure (quickly) for my child. A cure that may extend his lifespan and allow us to spend many more years with him. But each time he gets sick, each time he starts feeling crummy, I start to wonder if it's the beginning of the end. I begin to plead with God to allow us more time with him. "I will do anything," I say. "Whatever you ask of me, whatever you need from me, I will do, just please give us more time."

The fact is, our son is ill. He is my heart and soul wrapped into one and I cannot imagine a world without him. I hope that I won't have to, I hope that doctors can find a cure for Nicholas and thousands of other children that live with this disease.

I don't write this because I am seeking sympathy or acknowledgement. I write it because it is just how I feel today. I feel sad. I feel alone. I feel afraid. I probably won't feel like this tomorrow because I am a glass half full kind of girl. I am always looking for the silver lining, the sun peaking out of the clouds. But on days like today, I cannot ignore my feelings, I cannot make them go away and my heart just hurts. I walk around with a lump in my throat and tears in my eyes and I wish that life was different. I wish we lived in a world where SMA did not exist. I wish that no parent would have to be told to think about their "child's end of life decisions" as our pulminologist suggested to us last week.

If you are reading this, please take a moment and say a prayer for Nicholas and all people who suffer with Spinal Muscular Atrophy. I know we can use them and we truly do appreciate them.