Out of Sight, Out of Our Minds

We knew the invitation was coming, we just didn’t know when and it was like waiting the arrival of a dreaded phone call. On the day Lia brought it home from school it was mostly a green day, so the notion of letting her spend the night at another child’s house was not totally out of the question. Had it come a few days earlier when her blood sugar was soaring in the middle of the night and sinking in the middle of the day the dilemma we, as her parents, would have faced by this colorful cute piece of cardstock would have likely been short lived, then subsequently recycled with a succinct, but well-meant: I don’t think so. But that would have been cruelly breaking an agreement and Lia, as it were, was leaning toward wanting to go to the party and sleeping over at this little friend’s house. So even if we had wanted to brush off the affair we could not, not without there being some consequence. Just the fact that she was even thinking of not going was enough to make us consider that we should insist that she go, because the promise we’d made was that important and not something to take lightly. We knew this even as we sat in the hospital room the day after her diagnosis, still muddling through our grief, still dealing with the shock, still questioning why, but with still enough wits about us to emphatically agree with whoever commented that diabetes didn’t have to change anything that was good and good for us, like eating party foods and sleepovers. We would outlast the shock and the grief and the question of why and whatever things Lia did before, she would be able to do after. That was our agreement.

Then why was she not clamoring to go spend the night with her friend? What had changed?

Plenty, of course, but other than the fact that diabetes is not something you simply ride out as you would a visit from a crazy step-cousin, we knew what had been entrusted to us from the moment we left the hospital: bring Lia home to the same energetic, exciting and promising life she had before she got diabetes.

But once we were away from the round the clock care of the hospital, reality intruded and we alone were faced with raising this child we love dearly, a tiny little someone to whom we could never explain how all this had happened, and pretending that it didn’t terrify us was impossible. So for the first sixty days Lia slept with us, a habit she so contentedly formed she began keeping her PJs in the same nightstand as her mother. For that long and longer we’ve been pricking her finger seven times a day in an effort to capture and record data, half of which we may have little use for other than just the security of knowing. She’s seldom been out of our sight, other than school, and even there we are a presence. Away from the classroom, our work and our play revolve around the timings of food and of shots and of blood sugars, and always of someone being with her.

It has been breathless and time consuming, her care. But it has been both a good and necessary kind of breathlessness, like climbing a mountain top or falling in love. The experience and confidence and payback is beyond anything ever imagined.

But there have been drawbacks as well: privacy, diverted attentions, lost sleep, fruitless work, and now, with this party invitation, we see that Lia may be changing as well, in a way that no one had intended. Her joy, which is that of being with others and making them laugh, is as true and perfect and as uncomplicated as a good friend’s request to come celebrate her birthday. Neither are the sort of pleasures that should be compromised by diabetes.

In the end of course we won’t let it, we can’t allow it any more than we can let it take over our bedroom or curb the routines we used to keep for ourselves or obstruct us from the activities we enjoy, and it will be a wonderful victory to celebrate; but I hope when the party is over and Lia is safely back home and there is no more doubt of who is in charge of our lives, diabetes or us, the feeling that had been like doubt when Lia brought us the invitation will be just one more thing we outlast.

To be continued….