If you looked at my son you might think he is handsome yet small for his age. If you spoke with my son you would think he is bright, but shy. If you watched my son you might think he is athletic despite occasionally lacking confidence in his abilities. If you met my son what you would not see is that he is sick with an invisible disease.
Though his disease has been managed for the past seven years, we have seen no improvement in his condition. At this point his pain is more emotional than physical because at times it hurts so deeply for him to not feel like a “normal” kid, to be able to go to the places and do the things that his friends can do without constant worry or fear.
Most of the time he handles it like a champion. This is simply his life. There are moments though when he just breaks down and cries tears that we cannot take away, so we hold him tight until the moment passes. After all, he has earned the right to be sad sometimes.
Most of the time I handle it like a champion. This is his life; no matter how badly I wish I could change that for him. There are moments, typically at unpredictable times or places, when I just break down and cry because it hurts so badly that no matter how hard we try to give him normalcy our son does not feel like a “normal” kid.
We have told our son time and time again that there is nothing we would stop at to take away his pain, to put it on ourselves if we could. Like the champion he is, his response is that he would keep this invisible disease for himself so that we would not have to bare his burden.
My son has an invisible disease. When you look at him I want you to see that he is handsome. When you speak with him I want you to know that he is bright. When you watch him I want you to see how much he has accomplished both on and off the playing field. As much as I want you to see my son for all that he is, part of me wishes you could also see all that he deals with on the inside. If you could, surely you would see too that my son is a champion.
There are certainly people in more difficult situations than ours which has left us with a bit of extra guilt in those moments of sadness. Not long ago, a woman who had been through her own share of adversity told me that just because someone else has been through something worse, it does not mean that your situation is not worthy of sadness or grief. Those words meant more to me than she will ever know. Though we do not dwell on our son’s situation we choose to acknowledge its place in our lives and remain grateful for all that we have.
My son has an invisible disease. And my son is a champion.