“She’s going to discover the cure!” or “He’ll be a doctor because of MaryEllen and Kevin.” I always imagined that our healthy kids would have such a connection to their siblings, that they would want to dedicate their lives to helping people like them. That’s what always happens, right? We provide the loving foundation and our kids would magically want to become doctors, or therapists, or geneticists and we would all live happily ever after. Walt Disney Studios would buy the movie rights and kids everywhere would want to do the same.
Instead, the reality is that siblings of special needs children tend to be put on the back burner, while we parents take care of the immediate needs of the sick ones. I have very clear memories of a trip to Epcot. Katie was so excited! She loved it there more than anywhere else in the world and we were finally going to spend an entire day. Unfortunately, Kevin developed a fever and seizures less than 30 minutes after we arrived. “We’re leaving and not coming back?” she said, as we were whisked away in an ambulance. I will never forget that terrible feeling of letting her down.
Or the time that Kevin had a fractured femur and we celebrated Katie’s birthday in the pediatric wing of the hospital. We even snuck in the candles! This was definitely a no-no in Katie’s book and our efforts to make it a good birthday failed miserably.
And so it goes, juggling the needs of many while tending to the pressing needs of the few. Did we do a good job as parents? Well, since our kids aren’t inventing a miraculous cure anytime soon, one could argue that we could have done better.
“Welcome to Holland” (See it here) is an essay penned in 1987 by Emily Perl Kingsley. In it, she equates the wonders of Italy (having a healthy child), with the disappointment of unexpectedly landing in Holland (having a child with special needs). She goes on to say that Holland isn’t so bad, it’s just different.
Well, what happens to the families that live in Italy and Holland? Both places are beautiful and perfectly livable, however, jumping from one country to the other many times a day is tiring! Depending on who you ask, we end up spending way too much time in the other country and someone always feels slighted.
I propose that we families, the ones with all kinds of children, pick up and just move to Switzerland. It’s half way between Italy and Holland and it has chocolate! It would be a wonderful coexistence of families and we’d all have the acceptance and support we crave. Healthy and special needs children would just be… children. What a concept!
Oh, that’s right! That’s where we’ve been all these years, basking in our chocolate and typicalness, with silly chocolate smiles, too.