Wednesday, January 20, 2010

Grateful

Mark's Cub Scout den has been working on their Communicator badge. They even had guest speakers at the last meeting, people who spoke a different language. They were two women who were deaf, and spoke sign language.

I was a little worried at first because hey, we're talking about 9-year-old boys here. Ten of 'em. Squirrely, unfocused, crazy little boys who'd rather be roughhousing and playing some new kind of attack ninja game I've never seen before. So yeah, I was a little concerned they'd have a hard time sitting still and being polite to guest speakers. Especially guest speakers who required a translator.

Turns out, I had no worries. Not only did the boys sit politely, they were actually very attentive. For an HOUR. It was seriously the longest I've ever seen them sit still before! (And trust me, they start wiggling at the first sign the activity might be boring -- I've been in front of them, I know firsthand!)

They asked the guests tons of questions, some of which made sense ("How old were you when you found out you were deaf?") and some that did not ("Which desk is yours?" Mark asked. I'd mistakenly told him the speakers were elementary students. They were actually friends of a Cub Scout's mom.). But throughout it all, they were genuinely interested in what the women had to say, and not just because we told them to be.

But both women said something that's stuck with me ever since. It still makes me sad, two weeks later, just thinking about it. One of the women said her parents refused to teach her sign language because they wanted her to speak. They sent her to school to learn to read lips, which she did. They refused to learn sign language, too. In fact, it wasn't until the woman went to college -- at 18! --that she learned to sign. She said the whole world opened up for her. Suddenly, she could communicate quickly with other people, and she wasn't missing words or phrases any more.

The other woman nodded in agreement. Her family didn't learn either. She spoke of the weekly family gatherings when everyone would burst into laughter over some funny comment. She would ask her mom, "What did they say?" and the mom would say, "I'll tell you later." She said after a while, she'd go off to another room to read a book or watch T.V., tired of missing out.

I couldn't imagine my family -- singularly or as a whole -- dismissing the need to communicate with me. And what was worse, when I asked Liz, the teacher hosting the meeting, about it later, she said it's not that unusual. She said probably 90% of the families don't ever learn sign language.

I seriously almost burst into tears at that point. I just couldn't imagine the loneliness and isolation these poor women felt growing up, or that their families would just dismiss them so easily.


But more than that, it made me feel incredibly lucky. When I first got Mark, I knew nothing about dia betes. I'd done a little research, but reading a few Internet sites and actually living with the disease are two completely separate things.

No one in my family knew much about it either. But when I asked if anyone would be interested in attending a caregiver's class to learn, almost 10 sets of hands shot up immediately.

And the rest of my family and friends have learned over the four years I've had Mark. They all know the basics, what his number should/shouldn't be, and how to treat him if he's high or low. They tell him to test his blood sugar and give himself insulin before he eats, and I've heard every one of them ask him how many carbs are in whatever's he's eating. They all know to take his meter when he goes off somewhere with them, and they all have juice or glucose tabs present to feed him when he's low. They may not be expert carb counters, but they can all estimate, and they have cell phones to call me whenever they need an answer.

I was about to apologize for bragging about how great my family is. But I won't apologize; instead, I will humbly thank them. If you're reading this blog, then you know us well, and at some point, you've asked Mark yourself, "Did you test? Did you bolus?"

I am beyond thankful and humbled to have such a wonderful circle of family and friends. Because last week, I learned not everyone does. Not everyone has a family willing to make a little extra effort, to learn to communicate with family members who are different, to learn how to keep each other safe and happy.

But I do. And for that, I am immensely grateful. More than I even have words for...

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