Our journey as a special needs family has had amazing highs and astonishing lows. Through it all, I’ve experienced the joys of a family growing stronger together in the face of a true unknown with Katy’s chromosome deletion. Even with all of that strength, we are still faced daily with obstacles and emotions that we don’t show many – if any – people at all. In the interest of helping others understand what goes on in our lives every day, here are five things you should know about a – or rather about our – special needs family, at least through my eyes.
1. 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 she can’t protect herself the way a “normal” child can. We worry that she can’t say “Stop” or “Don’t” – or that she won’t realize she should have said it until it’s too late. We worry that people simply won’t understand our child. We have seen the sideways glances and rolled eyes from strangers when our child does something they consider rude or disrespectful. We’ve been verbally accosted by strangers who feel we shouldn’t have used a handicap parking spot for our “normal” looking child before I can even pull the wheelchair out of the back. We’ve listened to parents at our children’s school complain about how our child is somehow holding their little boy back. We’ve dealt with the inconsiderate use of the word “retarded” from our children’s own friends to even one of our child’s doctors. And no matter how many well-meaning people try to help, we will still feel alone.
We end up by ourselves at parties, whether we have our little girl or not. If she’s with us, than we’re constantly watching her to make sure she’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above. If she’s not with us, then we’re worried that something will happen to her away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave her with someone whom might not understand what she’s trying to say or to sign. Sometimes its even too hard to get your own family to understand just how stressed out you are.
2. We’re jealous.
Even with a family like ours where four wonderful kids help out every day, we can’t help but feel a tiny pang of jealousy every time a child younger than ours simply walks up to us. Or talks to us. Or runs past us on the way to ask someone for money.
Know what’s even worse? It makes us feel guilty as hell, because we’re so proud of everything our child has accomplished. This little girl has worked harder than any of our other children to accomplish everything she has been able to do – and we wish it wasn’t so hard. We hate that that little pang of jealousy hits us because this “normal” child in front of me didn’t ask for my little girl to have a chromosome deletion. This child doesn’t realize that when he talks to me, for a split second, I think “Why? Why did this happen to my child and not to you?” And then I have to put that thought as far away as possible because it’s not fair to that child or to my little girl.
If/When Katy reads this sometime in the future, I want her to know that we have never regretted a second with her. You made us become better parents and better people. You amaze us every day with every single accomplishment you have piled on top of accomplishment.
3. 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 her 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 constantly worry about money because everything involved with caring for a special needs child costs way, way more than it should.
We worry what will happen to our little girl when we’re gone. So we hire lawyers to draw up special needs trusts so that our child will be financially protected when we’re gone and won’t find herself fighting the same fights we handle now for assistance and benefits. Did I mention that we worry about money?
4. We’re good at hiding things / We’re not good at hiding things.
I am a deeply private person and became even more so after my daughter’s issues arose. I’ve rarely expressed my deepest feelings too anyone save my wife. And sometimes I haven’t been able to even do that. I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband – a strong man – does. What was it that the old deodorant commercial said: “Don’t ever let them see you sweat.” I have never wanted anyone to know just how terrified I have been. I’m not sure I want them to know now.
In this day and age, Facebook has become an unbelievable lifeline and community for my wife. She found an entire village of chromosome 6 and other special needs mothers that understood her pain and frustration. That community understood what was going on when she posted what was on her mind. To others, she just seemed rude.
For a private guy like me, it took a lot to start Katy’s blog and start to bring some of the emotion of our lives to the public. It has taken even more for me to start to try to become more active within the same online community that my wife finds such comfort in. This post is, by far, the most I’ve ever revealed about our circumstances. I’m still trying to decide if I’ll even hit the post button.
5. We’re stronger than you realize. / We’re more fragile than you realize.
We’ve had to deal with watching our child get stuck 26 times over two hours as doctors attempted to get an IV in her. We’ve given our little girl over to doctors seven times to perform some sort of surgical or medical procedure that involved general anesthesia – more than all our other children combined. We’ve waited in private agony for her to be returned 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 my daughter, even if they’re legally obligated to do so. We’ve fought for what we thought was right and just even when it put us at odds with family and friends.
And we’ve broken down in each others’ arms. We’ve been hurt by seemingly innocuous remarks that wouldn’t have fazed us a day – even 10 minutes before – but for some reason cut through at that very moment. We’ve hurt each other when our actions haven’t lived up to our expectations.
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 and family to a special needs family somewhere else in this vast (but ever smaller) world of ours: What can you do?
Strive to include. Work to understand. Go out of your way on occasion to help a special needs family out. Realize that the stress and the strain take their toll. We’re just trying our best to survive. If we’ve offended you with our words or our actions in one of these times, we apologize for our moments of weakness. Hopefully, someday, we can move forward together.
We do our best to make our family life look normal and to act like everything’s fine. And we wish people might see through that facade every once in a while and understand that we appreciate the slightest effort to make us feel… special.