No matter how much you prepare yourself, the reality that your child will never walk, still hits you like a freight train going a million miles per hour. Your mind goes blank for a few moments and when you come to, you just keep telling yourself that everything will be ok. Although you really can’t comprehend what ok means or, how things are actually going to get to the point of being “ok”.
The first few doctor visits and the first trip to the muscular dystrophy clinic at the Richmond Children’s Hospital were hard. As a parent, you try to be attentive as possible, understand everything the doctors are saying. You try to hold yourself together, because you want to be looked at as a strong parent however, all the while, you really don’t know what that means and you are worried that you will never get to the point of being ok.
Six months into this diagnosis, our family still hasn’t figured everything out. We have a long way to go, and every day we learn something new, but for the first time since the diagnosis, I can finally say that we are beginning to feel ok.
What we have realized is that Max is the same as any other two year old despite his diagnosis. Our initial feelings of, “Max will not be able to accomplish the things he wants to” – is totally false. The idea that nothing will be normal was not anything but an initial reaction caused by fear and uncertainty. We have noticed that in Max’s mind, it doesn’t mean a thing to him that he is wheelchair bound or unable to stand. He wants to do the same things he witnesses all of the other children doing. We have made it our job as parents to encourage him and make sure we find a way for him to do it.
It is about stretching him and challenging him in everything he wants to do. We see an achiever in our son, whether it be him playing tee ball in the Miracle League, learning how to control a motorized wheelchair or just trying to complete tasks that many of us take for granted every day. A neighbor of ours mentioned this past weekend, ” I love seeing your son, he is always smiling and, he makes you realize that there is so much to smile about.”
Being ok, means that every day we work to give Max what he needs to succeed, to be happy, and to prosper in a world where the only limits are the limits you give yourself. Our job, is to keep Max smiling, so that he can change the world, one smile at a time.
Please join us for the 2015 Richmond Walk-n-Roll. Join us for a 1 mile walk around the Cosby High School track field. You’ll also enjoy other activities and the chance to connect with several SMA families throughout your area. You can create a team or donate by using this comments