Sometimes it seems that I am stuck in a very unusual place - a "gray" area, if you will, between having a "disabled" child and one that is ultimately "healthy" but just happens to have some special medical needs. We hesitate to label Aiden as disabled because quite honestly, he isn't. He is developmentally on track. He can physically do everything his older brother can do. He has found ways to adapt using his special hands, proving many of our early fears wrong. However there are times when we find it appropriate - almost necessary - to describe his condition as a disability.
For example, we have applied for our state's Medicaid program, filling out countless forms asking to describe the unique medical needs of our "disabled" child. In these cases I find myself carefully accounting for every struggle, every surgery, every medicine he takes on a regular basis - to ensure we can receive the benefits that Aiden deserves. It's not fair to have our family's world turned upside down with a birth of a child that requires so much medical intervention, thus wrecking havoc on our once stable budget. We had plans to raise our kids in a quality of life as good as the one we knew growing up, if not better. My husband works his butt off for every penny he makes and with some intense financial planning, we've done pretty good so far. But that's not to say that all the zero's on the medical bills aren't still extremely frightening.
Other times, the "disabled" title is applied for us, when we least expect it. At the park when we see someone staring, at school when he can't cut with scissors like the other kids can, at the shoe store when we have to scour the racks to find the perfect pair that will fit his uniquely shaped foot, and then often leave empty handed. We are snapped back to reality that even though Aiden thinks, acts, plays and has feelings like the other kids, he simply doesn't look like them - and that makes him different.
It's difficult to find a balance between acknowledging his medical needs/physical differences and wanting our child to blend in like the "normal" child we know him to be. I want to celebrate his uniqueness and raise awareness, but never want to do it at the expense of his feelings by calling attention to something that ultimately might make him more self-conscious. It's a hard thing to wrap my head around sometimes. As Aiden grows older I will be able to take cues from him on how much or how little to address his craniofacial condition in everyday life. For the time being, I try to take comfort in the fact that Aiden is an extremely happy little boy and that is all that matters. After all, life isn't always black and white...it is sometimes gray. And that's okay.