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...

An open letter to diabetes

Dear diabetes,

This was Mark's spring break, and while I knew you'd spend it with him, I hoped you'd be a little more considerate. He's just a little kid -- you could've let him enjoy some of his time off!

I know you like attention, but really, this was ridiculous. You were really a pain in the neck all week! You started Monday morning, when I inserted Mark's new set into his belly, which he hates. You could've just stuck him and got out, but nooooo, you had to make him cry.

It continued Monday at lunch, when Mark wanted to be just like all the other kids, and "forgot" to test his blood sugar before lunch at camp. He overcompensated with his lunch dose, and sent himself low.

Then, Monday night, Mark's set fell out after only 10 hours (they usually last 3 days), and I had to re-stick him on the other side of his belly. Re-cue the crying.

No problem, I thought, at least we're good until Friday night. But you had other plans. Mark called me on the way home Tuesday afternoon to say the SECOND set fell out. Cue set number three.

It's odd to lose two sets in two days, but we went with it. You won't beat us diabetes, I thought, but you took up the challenge. Yesterday, Mark spent the whole day high, and I could almost hear your cackling. Lunch was 357, which I attributed to a freakish high. Dinner was 481, which Mark attributed to s'mores at camp. 10:30 check was 477, which I attributed to onion rings at dinner. I should have replaced the third set right then (and would've if he'd had ketones), but new sets send Mark low, and lows in the middle of the night are SCARY.

So I held off for one more test, and then you really got me. No number this time, just HI. Yes, I know that means Mark was over 500. 500!!! (He should be around 160 at night.) Curse you, diabetes!

Yes, I sent Mark to the bathroom, AGAIN, for the third time since his 9 o'clock bedtime, so his body could get rid of all the extra sugar. And yes, that was me, at 1 a.m., fumbling for the insulin bottle, new set and new cartridge with my eyes half-open, which I then shot into Mark's bum while he slept. I prayed he would go lower (but not too low) in the next four hours.

Yes, that was me, waking in a panic when I heard Mark fumbling around this morning.

"What's your number?" I called out, even before saying good morning, and again I cursed diabetes for robbing me of the most basic social graces.

"I didn't check yet," he answered, but moments later, I heard the familiar beep of the meter, and he called out "75."

Which meant we'd finally hit the other end of the spectrum. "Eat your breakfast RIGHT NOW!" I called out, and through the baby monitor, I heard him sigh and say, "OK."

And so I sent Mark off to camp. He didn't have his meter, because the counselor accidentally brought it home yesterday. (I really hope he brings it back, but I brought my extra meter just in case I have to drive up at lunch.)

Mark wore his favorite hat, his favorite Dodgers jersey, and some dark circles under his eyes courtesy of last night's high sugar roller coaster. I thought he'd be kinda cranky, but instead, he was thrilled to spend his last day at camp with all his new friends.

So, take that, diabetes. You tried, you really did, to steal his week off and make him miserable. But it didn't work, and I'm here to say nyah nyah nyah nyah nyah! I know, not exactly the most mature response, but so what. I'm a little sleep-deprived this morning, and feeling overprotective of my boy.

In closing, diabetes, I just want to say you stink. You made things rougher than necessary for my kid this week, but he still had a blast. He enjoyed his spring break anyway, no matter how many curveballs you threw his way. You tried to shut him down, but only succeeded in slowing him down a bit.

So, nice try diabetes. But you picked the wrong kid to pick on this week.

Heather