April 17th marked three years since Nicholas's diagnosis with Spinal Muscular Atrophy. Hearing his diagnosis three years ago knocked the wind out of us and made us feel as if our entire world was crumbling down. Three years later, our perspective has drastically changed.
You see, when Nicholas was diagnosed we were told that children with this disease do not live past the age of two. So, for us, his diagnosis was like a race against time. He was diagnosed at ten months so we figured we only had fourteen or so months left with our son. There is nothing but unimaginable pain in estimating your child's life span in mere months. We assumed that we would prepare for hospice and that our child would meet Jesus much, much sooner than any parent of a baby anticipates.
However, what the doctor didn't tell us is that children with SMA typically do not live past two-years-old when they have NO MEDICAL INTERVENTION. To his defense, he probably didn't understand that crucial piece of information. Many doctors have NO experience with SMA patients and only know what they read about the disease. In the months following Nicholas's diagnosis I sought out as much information as I could about SMA and contacted several families raising children with this disease and I immediately understood that that ticking clock was non-existent. Our care would determine the quality of life for our child and no doctor could tell me when he would leave this Earthly life.
Nicholas did not need a whole lot of medical intervention from birth to two years. He did get a cough assist and a suction, but we only used them sparingly. He slept great at night during that two years without the use of bi-pap and his sleep studies showed that he did not need one. He learned to sit up on his own and enjoyed feeding himself. He could roll from his back to side, but never achieved the ability of fully rolling over. The month before his second birthday, however, he got bronchitis which stole a lot of his strength and started his need for more intrusive medical interventions.
That transition at two years old was one of the hardest things for Jeff and I to go through. Watching our child lose strength in a matter of months was awful. He went from sitting up most of the time to preferring to lie down. We ordered a car bed for him to travel in when he choked on his secretions sitting in his regular car seat. He went from being able to feed himself with ease to barely being able to grasp a spoon. He started choking on food and refused to eat, and eventually lost his swallow, all of which led to g-tube surgery to get much needed nutrients into his weak body. 2010 was a tough year for us and it was also a huge learning curve in how to care for a child with SMA.
In the almost two years since Nicholas's second birthday, things have not changed much at all. We have a daily routine which involves a feeding pump, cough assist, suction, bi-pap, braces, therapy, and many other things, but it's our normal. Nicholas has even regained some of the strength he lost two years ago. He makes small strides: things like better finger grasp, wiggling his long legs, or increased vocabulary...and those things are amazing! We celebrate all those milestones, no matter how insignificant they may seem to some. We know when we leave the house we will be bringing tons of medical equipment, but really it's not very different from packing a bag for Ella. We just live our life and enjoy every second with our sweet children. We try to give Nicholas as many opportunities as we can to enjoy his young life: Sunday school, play dates, preschool, boating on the river, walks outside, visits to the park, educational programs, switch toys, & library story time.
Nicholas has an amazing temperament. He doesn't want for anything. He enjoys the simple moments in life. He has a huge heart which radiates pure love and contentment. He is happy just they way he is. And, you know what? So are we.
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