A breath of fresh air


First week after school got out was a camp week for the kids. V went to Camp Wana Kura – a day camp for kids with Type 1 Diabetes. This was her opportunity to feel completely normal and to be fully supported by a team of nurses and volunteers, the majority of whom also had T1D. She did arts and crafts, played games, swam in the pool, and made new friends. And for us it was like a breath of fresh air.

Ever since the diagnosis we are on call  24/7. When V is not with one of us, we are always checking our phones, waiting for another phone call, text or email with a question or concern. We’ve gotten called because her pod failed, or she had a low or a high, or there was confusion or question about carbs, or there was something else related to T1D and gluten-free diet. A few months prior to diagnosis my husband and I were starting to feel that taste of fleeting freedom, where both kids were old enough that they would happily spend a few days with my parents and we would get a little break, go on a date, and even go on a short trip together a couple of times a year. It all ended abruptly with T1D. Caring for V is complicated and we can’t just send her to a sleepover or even a playdate without doing some serious preparation. When she goes somewhere, we are always ready to take that phone call, or to drive to wherever she is. We are never free. And we have been very reluctant to try to do something fun while someone else watches the kids. I could not understand why for the longest time. After all, my parents often watch the kids when they are out of school, kids stayed in their house overnight, V has gone on a couple of sleepovers at friends’ houses, and we have great friends who are always willing to help out. But then it hit me – it’s that constant on-call feeling. When it’s a regular day and V is with someone because we are at work or otherwise doing something we need to do, we are not only prepared to be interrupted at any moment, but are used to it and not bothered by it. And there aren’t many times when both me and my husband are tied up at the same time. Usually if one of us is busy the other one handles the phone calls and trouble shoots. But something like a date is a different animal altogether. The point would be to get away, focus just on us, reconnect, not talk about kids, recharge our batteries. But it’s so hard to do because mentally and realistically we are still on call. The calls don’t always come but they surely do come often enough. And if we are going to be interrupted multiple times, why even bother? Our last attempt to go on a date was an epic fail, as documented in this post. We haven’t tried to go on another date since.

The first day V was at camp, I kept glancing at my phone all day. And then I’d remind myself – no, no one is going to call. She is not at school. If her pod fails, or she has a low, or there is anything else short of a real emergency, the camp staff will handle it without needing to get us involved. It was a really strange feeling. For a few hours every day we could let go of our on-call hyper-vigilance. I cannot say that I was able to fully let go of it, but there were moments when I could breathe with relief. There are no breaks from T1D for us, except for these rare moments, and it is more exhausting than I care to admit.


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