Yesterday Joel and I spent the morning with the most wonderful group of people at the annual Children’s Hospital’s and Clinics of Minnesota Rare Genetics Parents Meeting. Speakers ranged from behavioral specialists to meditation/yoga instructors to parents like us. I learned so many great lessons that I hope to write about in the next week or two – but I have to start with this one.
My friend Heidi, who I served with on the planning committee, brought us this lesson. She was telling the story of her son Liam, a middle school aged boy with a genetic difference. Back in the day when his diagnosis was new, she was talking to a family member who happened to have a very intelligent son – a “gifted” son. This family member told her, completely serious, something along the lines of “having a son who is gifted is just as much of a burden as having a son with a disability.”
Right. Are your diamond shoes hurting your feet as well?
It was in response to that story that someone told her the words I am still hanging on to from yesterday…
I’ve experienced a very similar situation, so I have to imagine other parents have as well. When I was first sharing the news of Teagan’s diagnosis, a man I respect very highly and really just straight up like, said to me “My kids are going to grow up and leave me, and that terrifies me. You get to keep her a little longer.” I think dumbfounded would be the word to describe me at that moment – I don’t think I even responded, as the words were just rattling around in my brain, which was unable to be really sure about what was just said. If only I could show how badly I hope Teagan can live independently someday. I pray that she WANTS to.
Another common situation that makes it clear how hard this is to understand – there are lots of people who say things like “God doesn’t give you more than you can handle” “God only gives special needs children to special parents” or similar sentiments. As I wrote about here, I roll my eyes internally and move on. Do I think God chose to give me a child with a disability to teach some sort of lesson? No. I don’t think God is an asshole (although admittedly, I really don’t understand why he didn’t prevent it and why, since supposedly “He can,” he doesn’t fix it now). But she’s here and she’s wonderful, and should we do some inspiring while we’ve got the chance? Hell yes.
The examples above are perfect times to repeat those words to myself – in both cases, people care. They are being sweet and supportive. I know that I am the exception, not the rule, and that without being in the situation there is no way to know how a parent like me feels. Three years ago, I very well might have said the same things – in fact I remember saying to a close friend who was dealing with infertility that it was probably God’s way of having them help a baby who really needed beautiful hearts like theirs through adoption. This person told me later that people say things like that all the time and “It doesn’t help.” I get it now.
The next example is a little harder to swallow – when people use the word retarded. When we first got this diagnosis I noticed it All. The. Time. You have no idea how much this can sting when someone you love is actually diagnosed with cognitive delay (the term more used today – thankfully – in place of mental retardation). I don’t think people realize it when they say it – I think of it very similar to the way I used to use the term “gay” in the late 90s. If someone had an idea I didn’t like, I might respond with “That’s gay.” Did I actually mean that idea preferred to have romantic relationships with ideas of the same sex vs. the opposite? Of course not. I had nothing against gay people at all, it was just something I said for emphasis…and it was ignorant. Luckily, thanks to an evolving society, the term isn’t really used that way anymore (at least, around here it isn’t). I’m hoping to see this happen to the r-word as well. The difference is, when people use “retarded” they do mean less smart than the average person, and that is very hurtful.
If you happen to use this word around me, and seconds later realize what you’ve said and wish you can take it back (I feel like I can actually see people internally freak out when this happens), don’t worry. I won’t be mad at you – well maybe I will, but it won’t last long. On the other hand, if you ever catch yourself before using the r-word, imagine me cheering for you and giving you a hug, or a “good job” smack on the ass – your pick. Intentionally offensive or not, this word should go away in general. Someday, someone is going to use this word in a way that pisses me off. And then I’m going to have to, kindly but firmly, tell them to STFU.
Now we can’t all walk around afraid to speak all the time – I have stories of times I’ve been horribly tactless myself (and more than one friend who loves to remind me of these times). I’m just saying we should all think about our words and actions.
There is this dude with Down Syndrome who I see at the coffee shop below my office almost every morning. He buys his hot chocolate, pulls out his laptop, and does whatever he does. I’ve had to stop myself from trying to buy his drink for him because it makes me happy to see someone with a chromosomal difference grown and out and about on their own – something that the case studies say hasn’t happened with anyone with my daughter’s diagnosis (…yet). He might appreciate it – because hey, free hot chocolate – but he also might find it offensive. He’s a grown man out doing his thing like any other guy in that coffee shop.
I so appreciate the flexibility our family is allowed for therapy appointments we need, but other than that, I don’t expect or want us to be treated differently. I haven’t quite worked out in my mind how to draw that line – are even blog posts like this counterintuitive to that desire? I don’t know. I hope not, because I love writing rockinglion and I love hearing what everyone thinks in response, but it does make me wonder. Maybe I’ll think more about that someday…for now, I’ll forgive myself for not understanding.