For the longest time, when I was asked to speak to a group on behalf of IUDM, and Riley Hospital, I graciously did so, but harbored a sense of guilt. I realize now, that was a selfish sentiment on my part and completely discounted the struggle our son faces in his life, on a daily basis.
My initial emotions, many times, were, 'What makes our story so special?', or, 'But, he doesn't look as sick as so many of the other children', but, truth be told...he is. The difference in his life, from so many others, is that he has a voice, and a platform, which is ironic in and of itself because he didn't speak until well after his 2nd birthday. We have a responsibility to be, for so many others, what they wish they could be for themselves; and so we press on and perform our duty with the utmost humility, and an understanding that we do so, for them.
The hardest part for me to wrap my head around, or truly grasp, is that 'life' happens to so many of the Riley children, most of whom were born normal, healthy babies. Another faction, which is easier to understand, are those born with genetic abnormalities; issues which are manageable, but require a great deal of service and care in order to be sustainable for their quality of life. Then there is the group of children who, by all appearances, are happy and healthy and require little to no outside assistance, to succeed and thrive in society, which, by my own admitted failings, are discounted because of the struggle they have faced in their past, and either overcome, or, silently to the rest of us, continue to face today, and will for their remaining days on this earth. This is why I admire Makenley so much. Because, he has taught me you don't have to be bedridden, or institutionalized, in order to be affected; that this struggle will be real every day, that nothing comes easy.
How we win, or overcome the apparent injustices, is all in how we approach, or perceive, our circumstances. We can sit on the sidelines and mope, feeling sorry for ourselves, or we can get up off the floor...and fight. That's what makes all of the children at Riley so special; it's that they are fighters. They not only have wonderful support systems through the amazing staff and administration, but also through the brilliant and selfless students at IU and, of course, their families. Not every child will win the fight with their earthly bodies, but the results of the determined nature of their will, versus the struggle, will live on in their spirit.
We love the people of Riley, and the family we have developed through IU, and IUDM, and gratefully accept, and humbly honor, the requests of our time and the need for our message to be heard; because it is important. Each story is meritorious. And, even though some children may not face a lot of the same physical struggles they once endured, there are so many who do, and will, as long as they are with us.
For this reason, I will continue to recount the story of our son, and how he came to us, barely able to walk...unable to speak. I'll tell of his countless hours of therapy, and the physical suffering and uncertainty for his future. I'll continue to discount the notion of so many who said that he couldn't, when he knew that he could...and would. And I will shout from the mountain tops, his success...in school, athletically, societally and interactively, with his peers. How, no matter what people said, or the cruel things he endured...he persevered. I will tell the story, for all of the children, that regardless of the nature of each struggle, they are an inspiration to us all; and the reward is worth the pain, whether in this life or the next...and that is what truly matters. And that is real.
FTK,
Scott
