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.
This might fit under your #3, but the one thing that left me speechless was the comment (and I heard it more than once) “If I’d have known I’d have a child like that, I would have had an abortion. It’s just not fair to the other kids”. Let me tell you, I thought my head would explode with rage, and the fact that I was trying to keep my mouth shut….
great list, especially #4
Spot on, as usual, Andi! I think I would amend #1, though, to be that doctors don’t know as much as you hope they do. It sure would be nice to take my bundle of worries and out it in someone else’s lap! Oh well. Thank Heavens for the support that is out there!
I have learnt to look past the stares and see that often (especially with children) the stares are often just pure innocent inquisitiveness and sometimes a small practical answer to a simple question can have a magical effect. I have learnt that once I can get past the worry and sadness I have the opportunity to experience so much more than I ever envisioned. I have met the most amazing people – other parents, caregivers, therapist and sometimes even total strangers and through the sharing I have come to see life from a totally different perspective. From my daughter and her disabled friends I have learnt to see more in each person than just the outer package and the daily façade we tend to show. That often our vulnerabilities and perceived weaknesses are our strength. And I have learnt that there are people who are simply uncomfortable around people with disabilities and I need to accept I cannot change this as it probably stems from their own vulnerability.
I have learned that no one can really define challenge any longer. This is life and we just get up every day like everyone else and take it one task at a time.
This is awesome. So true. THanks for articulating so well.
The “God only gives special children to special people” is obviously not true otherwise why would God give children to those who abort or abuse them?
What God is calling us all to do is to love the children we have been gifted, but sadly some people refuse to do so. I acknowledge that for some parents placing their child for adoption will be a selfless act of love. I’m in the position of having deliberately adopted babies with Down syndrome, not because I was particularly saintly, but because I wasn’t afraid. I knew several children and adults with Down syndrome so I was delighted to be chosen by my babies’ birth parents. Sure we also said yes, but I find it demeaning to my daughters to be told that they are blessed to have us as parents, but rarely do people say that we are blessed to have our daughters.