In a month, we will be walking to raise awareness about Mitochondrial Disease and funds for research in hopes to discover a cure. That dreaded reality that I try my hardest to push away. There is no cure. As I update Carter's video that displays his life in a story format, I struggle seeing what all he has been through. I have become a professional at taking one day at a time in regards to the disease that is tangled amongst his DNA...the boo boo that I cannot fix. But watching that 19 minute video, reminds me that in 4.5 years, my little boy has fought so hard just to live. Through every ache and every pain, he has smiled. How that boy continues to smile, even when he is in the hospital, has been poked more times that we can remember, therapy after therapy, specialist after specialist, I am not quite sure. He doesn't even cry or flinch when he has an IV put in or blood drawn for the hundredth time. He is the toughest kid I've ever seen! Many people tell me how strong I am. They say that they don't think they could do what I do. But I beg to differ! What I do is simple. I love my son. I do what most parents would do; I walk beside my child and put up the toughest fight known to man kind. I refuse to give up. I refuse to accept that there is nothing doctors can do. I will never settle for what those statistics say. What keeps me strong? That smile! When Carter gives me that big, bright toothy smile, everything in our world shines! When I hear his rolling, contagious giggles, I feel my shattered heart finding where all the pieces belong. I am not the strong one, my son is. It's his strength that holds me up. When everyone thinks that I am what holds Carter up, it is a misunderstanding. Carter is holding me up. He teaches me so many things that I never imagined I would. As I follow him through his therapies and procedures, he reminds me how tough he is. He proves to me that super hero's do exist. The impossible is possible.
When everyone is asleep and it is dark, I peel off my coat of armor and allow my skin to breath. This is when I sneak into Carter's room and stare at him as he breaths; wondering what he dreams about. This is when he is the most relaxed and calm. It's amazing to me to see his muscles soft and extended; something that he has no control of when he is awake. Many nights, staring at him isn't enough and I climb into bed with him. Holding him as he sleeps is probably one of my most favorite moments with Carter because it's just him and I. I can put my cheek to his and inhale his familiar scent. I can kiss his soft skin without him pushing me away unintentionally. It's time that I can be selfish. I can hold him as long as I want! Raising Carter is not hard in the sense that many people think it is. Of course, the emotional and physical part of taking care of a special needs child is hard. But being a mom to this extraordinary child, is not hard. I would carry Carter forever, drive to the sun and back to find whatever he needs, and have every hair pulled from my head just to keep Carter with me.
As the fight to find a cure continues, so does life. I will keep drawing off of Carter's strength and loving him with all my heart! I will hold on to that thing called hope, for as long as my heart beats. We will fight hand in hand, step by step!