Normal Is

As normal does!
Sometimes Justin and I  look at each other and wonder, how in the world did we get here? How did we get to this point, where we take a life of "special needs" as a given? Then there are those days that we don't, and we just sit and wonder at the strangeness of it all. It really is a poignant reminder to us, that when you hit the bottom of the barrel, every little inch towards the surface is a gift. We had a hearing test for Leo yesterday, and though the test itself was inconclusive (no surprise!) the ENT doctor was especially compassionate, maybe because she had just given birth to a little girl with DS. Instant friendship and understanding. I was blatantly reminded of these two worlds, which though are in cohabitation, are very different from one another. When I was a parent of a perfectly normal little girl, I never knew about this other world, about the rejection and constant heartache that those parents face. Never knew about the instant bonds that can be forged out of relief. Relief that here is someone who knows. Who doesn't judge. Since when are we the ones who can determine who is fit for life, and who isn't? Who is perfect, and who isn't? It's harder when your little one looks very different. When all it takes is a glance to separate and condemn. There are days when I would give anything to have spared my little guy his deformity. To have spared him the extra pain and trial of making his head "normal." There is such a stigma against deformity and mutations, X-Men cool factor not withstanding. On the other hand, I know those people who aren't afraid to kiss his head, are my friends for life. When I hear someone use the word "retarded" in a negative way (there isn't any other) I feel a shock and a terrible sense of wrongness. Though I too have used that term many times before Leo!
What does it mean to be different? Well for us, it is starting to feel normal. Our little man is so complete, so present and alive, that I can't imagine him any other way. And though I am excited to imagine him with a "normal," head, I am also apprehensive. Will it change his essence? Will I have trouble recognizing him, seeing him as his totally unique self? Will he be just another one of "those kids?" Chances are, Leo will just do what he does best: defy all our expectations and assumptions! That is the norm that we are getting used to, day by day.

Here are some new pics of our guy doing his thing.