Pre-kid, I loved going to the beach. It was so easy--pack up a chair, a towel, some sunscreen and a good book, and I was good to go for the whole day. I still love going to the beach, as does Mark. It just takes a lot more planning now. Diabetes isn't the problem; it's Mark's insulin pump.
I love that pump. It's a modern-day miracle, an example of how technology improves our lives. It makes Mark's life easier, more discreet, and it freaks people out a lot less (diabetes quickly shows you who your squeamish, needle-phobic friends are).
It's also a sensitive, incredibly expensive medical device that does not play nicely with things such as, oh, say, large bodies of water or acres of sand.
A trip to the shore now requires careful planning. I learned the hard way to bring extra pump supplies, insulin, and even needles to the beach. When my mom wanted to take Mark, I taught her to remove his pump and cap the infusion site so sand wouldn't get in and jam it. She did exactly that, but sand still got in and jammed it--then she couldn't remove the cap OR plug the pump back in. Poor Mark suffered silently as my mom and brother Brad poured water down Mark's backside, trying to wash the sand out. They finally just removed the set, and I left work early to go put in a new one.
Now, we just unplug Mark and cover his site with medical tape. I bring needles and insulin and give him shots whenever he eats, or needs basal insulin. And I accept the fact that Mark will most certainly lose his set, and require a new one when we get home. I chalk it up as a small sacrifice to the beach gods, a minor price to pay for my sun-loving son's happiness.
However...all that careful preparation goes out the window on field trips. While a day at the beach with me is...um, a day at the beach...it's a different story when I'm not there. Instead, I have to trust that my 11-year-old son will:
- Remove his $6,000 insulin pump before burying himself in a hole or frolicking in the heavy surf (the first time Mark wore his pump in a pool, it fell out and sank to the bottom. I've had nightmares about water vs. the pump ever since).
- Tape up his site before even one grain of sand jams it.
- Put the pump in his beach bag after he removes it.
- Give that bag to a responsible adult.
- Plug the pump back in when he leaves.
And this year, I added a new task: Give himself a shot for lunch.
That one has me biting what's left of my finger nails. Kids on needles (instead of pumps) take both short-acting and long-acting insulin, so their blood sugar won't go super high if they miss a shot or two. But Mark's pump uses only short-acting insulin--so even a few hours without insulin is really dangerous, as we were reminded a few weeks back when his pump malfunctioned. (His blood sugar shot well over 600--three hours later, he was only down to 585!)
In previous summers, I spent my lunch hour driving to whatever beach Mark was at, and giving him the shot. But Mark wants to be like every other kid, and nobody else's mom shows up at the beach wearing jeans and shouting "Did you eat yet??" as she plows through the sand.
So I'm trying to give him independence. I'm trying to let him manage without me today. I'm telling myself he did remove his pump, he did put it back on, and he did give himself his shot. I say it over and over again, so that it sounds real, and plausible. I say it like a mantra, so it will seem comforting, and I say it in my head, in my most soothing, calm internal voice.
But it's not working. I'm still a mess, and I will worry until the moment I pick him up from summer camp and blurt out, "What's your number?" before I even ask him how his day was. When he gets mad that's the first question out of my mouth, I will get mad, too, even though I'm not really angry at all, it's just my worry and fear being projected as anger.
The honest truth is that Mark is responsible, much more than most kids his age, because he has to be. But it's too much; it's too much to ask an 11-year-old to guard his health rigorously, religiously, even for half a day. That's my job, and even though I know I'm giving him life skills, experience, the confidence of knowing he can take care of himself, it's killing me.
Because even as responsible as he is, as I ask him to be, he's just a little kid who wants to dig in the sand, eat his lunch without mom, and be like every other kid on the beach.
Which, really, is all I want for him, too.
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