It was September something, 2009 and we stood behind the glass door on the front of our house. Kids were filing by, walking in groups, talking to each other, some ran by all of the others while some drug their backpacks along the ground. On this day, we were less than one month past Jadon’s diagnosis and we were still trying to figure out what his future looked like. What our new dreams for him would be. We were told that all of our old dreams were gone. That afternoon, one of those old dreams passed right in front of us as all those healthy kids marched by. It hit us – our son would never be one of the crowd. He wouldn’t be the brilliant, All-American, ninja, superstar of the football team like we had thought when we placed his first football beside him at the hospital the day he was born.
When we hunted for a house in Kansas City the fact that there was a school up the street didn’t play a part in our decision. We recognized there was a school but had no idea if it was good, bad, or indifferent. All we knew was we wished it wasn’t there that particular day. Those kids, by no fault of their own, seemed to be taunting us. Showing us the dreams that we were forced to give up on. Jadon would not only never be strong enough to drag a book bag but also would not be alive long enough to be enrolled in school.
We closed the front door on the sidewalk parade with tears in our eyes as we also seemingly closed the door on the simplest of dreams – our child attending school.
We had decided to fight the disease that was robbing our child of movement and functions. We had decided to take one day at a time and had decided that we would “Dance in the Rain” of this ridiculous life storm known by three letters – SMA. We did not know if our fight would yield any rewards but we would fight anyway. We would put aside dreams like going to school and that school up the street would become irrelevant.
Last night we sat down to update the letter sent home to the parents of Jadon’s first grade class. The letter explains while Jadon has physical differences from their children, deep down he is just like his classmates. He enjoys a lot of the same things and probably dislikes a lot of the same things as they do. He loves going to school and while his body is not doing what he wishes it would, his mind is very much intact and functional. He loves life, loves having fun and could be a great friend.
As we finished the letter, it struck us – this is the fourth letter we have had to write. Jadon has been attending school for the past four years (2 years of preschool). WOW! The significance of such a milestone for an SMA Type 1 child is not lost on us by any stretch. Here we are, smack dab in the middle of August – SMA Awareness Month. The time when we remind everyone the devastating statistics that come with an SMA diagnosis:
50% of children diagnosed with SMA Type 1 will not live to celebrate their first birthday.
90% of children diagnosed with SMA Type 1 will not live to celebrate their second birthday.
We know far too many families that never got to see their beloved little one attend school. We are incredibly grateful to once again experience this milestone with Jadon. First Grade – we didn’t think it was possible, yet here we are.
And that school we thought was going to be irrelevant? Well, they have become a saving grace. The staff is like family. The kids are amazing. Everyone has lovingly embraced Jadon. They encourage him. They want him to have an amazing educational experience. They lift our family up. The experience of school is different than what we envisioned, but it is good. It is really, really good. We know how blessed we are to be a part of the Rolling Ridge family.
And while we have fully accepted that Jadon will not be the star of the football team we know full well this star was born to SHINE.