1. Doctors don’t know as much as you think they do.
Jokes about Dr. Google abound, and rightfully so. The ease of internet searching weighed against the expense and hassle of going to the doctor sends many people to the (always accurate and dependable!) World Wide Web in search of answers to their health questions, and often those searches lead people down absurd rabbit holes.
But special needs moms figure out pretty early in the game that the doctors know some stuff, but not nearly everything, and not as much as we’d like them to know. Even when we get lucky and stumble onto a specialist who’s the best, brightest, and most knowledgable in his field, he still won’t be able to tell us what our child will be able to do and when he’ll be able to do it. He might tell us what our child won’t be able to do, but even then he’s most likely either wrong, or telling us something we already figured out for ourselves. Sometimes we find out what we need to know on the Internet … from parents who’ve been there.
2. Acceptance is hard.
Is there anything that a mother looks more forward to than the promise of her unborn child? For nine months, we can’t see our babies, even though we know they are there, so we visualize what they will look like, how they will act, what they will enjoy, and what they will become. The reality is never the same as the visual, of course – no matter who your child is or what condition they do or don’t have. But for most moms, “might” is still an option for most of the dreams. For our kids, “won’t” is hard to accept. “Might” is a dream that’s allowed to slowly fade away over time; “won’t” is a brick wall unexpectedly thrown up in our path, forcing us to take another road.
3. Some people specialize in habitual jack@ssery.
There’s a tendency to believe that if difficult people would just spend a little time with our child (or any child) with a disability, that they’d act differently. We want people to actually see our child, not his or her label, and treat them with respect. We think that if they knew what a delight our child was, they’d stop saying the R-word and stop parking illegally in handicap spaces, and just be decent people. Some of them will, but a lot of them just … won’t. It’s best to keep that in mind, knowing that perpetual jack@sses are more broken on the inside than my children will ever be.
4. It’s not about me.
It feels like it’s about me – oh, yes, it does! I wanted a normal child. I wanted a “normal” life. I don’t want to spend my time in doctor’s offices or at therapy appointments, or arguing with strangers over the phone about medical bills. It’s tempting to want to scream WHY?!? or to shift into Woe Is Me mode … a lot. But it’s not about me, and I have to remind myself of that fact every so often. I may be dealing with the doctors and the therapists and the medical bills now, but my child will be dealing with it – and plenty of other stuff – forever. If she’s okay with it, I need to be, too.
5. People can’t resist canonization, and I’m pretty sure it’s to reassure themselves.
When people say things like, “I don’t know how you do it” or “I could never do what you do” or “I don’t think I could handle it” or the ultra-stomach turning “God only gives special children to special people” I say … BULL. I’m not special or better or tougher or sweeter or any of those things that we imagine saints to be. I just got dealt a crummy hand (whoops … it’s not about me!) If you had what I have, you’d handle it, too. When people say things like that, much of the time what they really mean is, I’m not special or better or tougher or sweeter so I couldn’t handle it so I must be SAFE – God would never give me what you have. To that I say – don’t be so sure.