Skip to main content

Posts

Showing posts from March, 2015

No Room For Ideals In The Medicine Cabinet

I think something that parents of special needs children learn very quickly is how to reject the "ideal." In fact, I believe we not only reject it, but completely remove it from the equation of our daily life. Before I became a parent, I remember being that annoying smart ass who had all these opinions and ideals as to what my kids would be like, and more importantly, how I would raise them. For example they would be perfect little angels, eat all their veggies and sleep through the night. Boy, was I out to lunch or what?  Then I actually had a kid and it was a real shocker to see all those pre-conceived opinions and ideals fly out the window along with the homemade baby food, organic diapers, and over priced baby carriers. I was suddenly faced with the fact that all my book reading on pregnancy and birth and newborns was totally useless when faced with MY actual pregnancy, MY actual birth experience, and most importantly, MY actual, larger than life, red-faced, colic

Leo.

Leo Clement, AKA: The Little Lion Man. So there is all this talk about Leo being so normal etcetera etcetera etcetera, but what does that even mean? Because for obvious reasons Leo is not normal, hello, remember his birth? The seven plus surgeries and numerous hospitalizations? The reason for this blog? Well yes. In his four year movie, ( re-watch it here, I know you want to. .) I try to stress the point, over and over, that Leo is his normal, that even though he is different from you or me, he is also at the same time, no different. I think I would believe this to be true even if he were more impaired; physically, mentally, medically, whatever, if in other words, he still wore the terminal label of hydranencephaly. In those first few grim months of Leo's life I joined every single support group out there for this condition, and to my astonishment (total newb), I learned that most of the parents and caregivers of such miracle children share this same sentiment. Eve

The Reluctant Heroes.

Nope.  It's not my special needs kiddo who is the reluctant hero. It's not us, the parents. It's not the generous and compassionate friends, extended family, teachers, therapists or the doctors, though they all are heroes of course, but they are not the ones I'm thinking about today. It's not Batman. Today it's them.  The siblings of special needs kids. Most of us didn't sign up for the role of a special needs parent though the majority of us have embraced it whole heartedly and if pressed, will admit to not wanting it any other way if it means even loosing one atom of what makes our children who they are. Our other children though? The neuro-typical kids who are often left standing in the background: they are my reluctant and grudging heroes. We've all seen and read the articles showing those saintly sibs who do amazing feats for their disabled brothers or sisters. Wow, everyone remarks, how special that they are so generous an