I found this a long time ago and have edited to fit our family and my feelings....it really does hit home with things to know about a special needs family.
We’re ostracized. Whether you realize it or not, we’re outsiders. We have an all-consuming fear that something will happen to our child because he can’t protect himself the way a “normal” child can. We worry that people simply won’t understand our child. We have seen the sideways glances and rolled eyes from strangers when our child is around. We’ve been verbally abused by stangers who see us getting out of the van...you can see the “thoughts”; what are they doing parking in a handicap spot...before Ian rolls down the ramp.
We end up by ourselves at parties, whether he is with us or not. If he’s with us, than we’re constantly watching him to make sure he’s okay or tending to his needs. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above. If he’s not with us, then we’re worried that something will happen to him away from us. We don’t go out with our friends the way we used to because it’s hard to find people who can care for him in all the aspects he needs. Sometimes its even too hard for those closest to us to understand just how stressed out we are.
We’re jealous. We can’t help but feel a tiny pang of jealousy every time we see another boy do all the things Ian used to do or should be doing.....
Know what’s even worse? It make us feel guilty as hell, because we’re so proud of everything he has accomplished. This little boy has worked harder than most other children do to accomplish everything he has - and we wish it wasn’t so hard. We hate that little pang of jealousy hits us because this “normal” child in front of us didn’t ask for our little boy to have a chromosome mutation. This "normal" child doesn’t realize the thoughts running thru my mind, when he talks/walks/runs up to me. And then I have to put that thought as far away as possible because it’s not fair to that child or to Ian. And then I hate myself for those thoughts running thru my mind.
Sometime in the future, if/when Ian or Becca reads this, I want both of them to know that we have never regretted a second with Ian. They have made us become better parents and better people. They amaze us every day with each new accomplishment they have piled on top of all their other accomplishments.
We’re scared. We try to do everything we can to set our child up for success and we always worry that we’re not doing enough. Or we’re doing too much. Or we’re doing the wrong thing. Or we haven’t done enough research. Or we won’t be able to afford that. Or how will we be able to afford that? On a daily basis, we wonder whether the decisions we’re making today will improve or degrade his quality of life. And we do it knowing full well we’ll never know the answers to those questions until they arrive - for better or worse.
We’re stronger than you realize./We’re more fragile than you realize. We've had to watch him lose skills he was once great at...we've had to watch Becca watch him lose skills he was once great at. We’ve had to deal with watching our child get stuck over and over again and endure more tests and days laying in a hospital bed. We’ve given him over to doctors to many times to perform some sort of surgical or medical procedure that involved general anesthesia. We’ve waited in fear for the doctors to return to us each time, hoping for the best, but scared to death that something will go horribly wrong. We’ve had to develop incredibly tough skins dealing with red-tape corporations determined not to spend a dime more than they have to on our son, saying things are considered custodial care or not medically necessary.
We’ve broken down in each others’ arms. We’ve been hurt by seemingly innocuous remarks that wouldn’t have fazed us; even 10 minutes before - but for some reason cut through us at that very moment. We’ve hurt each other when our actions haven’t lived up to each others expectations or our own expectations.
We’re human. So, for our friends and family, for future friends we haven’t had the pleasure of meeting yet, for strangers to us who are friends to a special needs family somewhere else in this vast world of ours: remember we are all human...we do our best to make our family life “normal”.