Spinal Muscular Atrophy (SMA) is a neuromuscular condition that many people have never heard of until it is too late. Diagnosis Day – SMA comes into your life like a bomb, forever altering the hopes and dreams that lay before you moments earlier. You have just been told that your child has Spinal Muscular Atrophy and will, likely, not make it to their second birthday. Will your child be a dancer? A painter? A musician? An athlete? An actor? A scholar? According the statistics, the doctors, even internet resources, the answer is a wholehearted, unquestioning, NO. Your child will fight to breathe, swallow, move, eat, and possibly even lose their precious smile. You will learn more medical terminology than the entire cast of Grey’s Anatomy and worse yet, you will retain the information and be able to argue your position to the most educated physician without hesitation. You will learn what it means to have a g-tube vs. a gj-tube, a Trilogy vs. an LTV, and a tracheotomy vs. NIV. You will fight, fight for the care you want your child to receive, fight with others who do not understand your decisions, fight for your child’s life. And despite all of this, you will be reminded on a daily basis that no matter what you do, your child will not survive beyond the age of two. You will say, to yourself and others, “no, my child will beat the odds…we will be the lucky ones”. Perhaps you’re right and, yet maybe you’re not. There is no way to know.
But let’s back track…Why can’t you live life to the fullest? Why can’t your child, despite physical limitations, be whatever he or she aspires to be? Yes, it’s true that there is no treatment, no cure for SMA. But that doesn’t mean life must come to a halt. You can choose to focus on the statistics, the hopelessness touted everywhere you look. Or you can choose to live your life, with the knowledge that your child has SMA, and do whatever you can to ensure that your child enjoys life to the fullest extent. Go to the beach, the library, Disney World, a movie, the zoo, the mall. The options are limited only to what you’re willing to try. SMA may limit your child from washing their own face but it does not limit their ability to learn. Your child will absorb every bit of information you throw at them and will understand more than a “normal” child their age ever could. Teach them everything you can. With education, your child can be the scholar, the athlete, the musician, whatever he or she wants to be. They can be anything because you have the courage to believe that anything is possible.
Statistics matter not, nor do other people’s opinions. Perhaps the cure is a moment away or maybe a millennium away, it matters not to you. Your child is a part of your life, in this moment. Tomorrow, well that is mystery as of right now, and that is okay. You will take today and make the most of it because, for now, it is the best day ever.
