A Lesson on Atoms
(or Letting Go)

When it was early summer vacation and close enough to the end of the school year for Lia to still be considered an elementary student and not a rising sixth grader Franca and I weren’t sure what changes we’d make to her diabetes care plan to meet whatever new challenges arrived with middle school. Other than a few frustrating moments—a teacher withholding candy for some asinine reason, the immaturity and arrogance of young boys, chaos around the lunch bolus—school and her diabetes for the most part had gotten along. At least there were no panicked drives across town or phone calls that made us question why in hell we weren’t home schooling (not that had to do with diabetes anyway).

In fact, Lia’s school does a pretty good job of making us both feel like we’re not wasting our time sharing with them—sometimes more than once—facts about highs and lows, helpful tips for teachers of students with diabetes, unique details of Lia’s own treatment and management of her disease. They appear interested, concerned. They ask questions for clarification, offer personal testimony and eye witness to Lia’s strong character, her stoicism, her quietude and composure. By their words, or mostly with just their silence, they acknowledge this one true thing: In terms of diabetes, Lia is in charge.

It’s a question of independence and one that her mother and I were, and still are and will be for many years to come, struggling with as we sat down and talked about the upcoming school year. To understand why you must first have a child and then that child must get sick and be diagnosed with an illness for which is there no cure. Only then will you understand a parent’s worry of letting go. There is no other training for this, no software simulation that will help you understand. And, as I’ve alluded, children with diabetes make taking care of it look like a breeze. Poke. Test. And Bolus. Move on. Next lesson, please.

I’d like that to (but it won’t) help you appreciate our routine for the past couple of years which has been for Lia to call from a phone in the classroom, or the office, if necessary, and talk with one of us about her blood sugar before she does any bolusing. Same with lows. Call, then correct, or correct if you have to but give us a call right after. Because there is no school nurse, it’s just what we had to do. It’s what made us feel safe, because we were in charge, not Lia.

With age comes change however. Like atoms, of which humans are made up of many (about 7,000,000,000,000,000,000,000,000,000), diabetes is not something that can be divided. We cannot take some, say just the parts of it that keep her safe and sound, and leave the rest for Lia (those parts that let her cut in line if she has to pee, or drink juice during English class). As she gets older she’ll gradually assume more and more of the whole until there is nothing but worry and hope that is left for her mother and father. I don’t like it and would do anything to change it, but it is what it is. I can’t fight it. But what we give up we give up in the smallest of increments.

Already Lia is showing signs of her readiness—wrong word. Surrender, perhaps is more fitting—to take on more. So for middle school we’re giving her a new tool to help her succeed, but at the same time still keep us informed. With a cellphone, she’ll no longer have to endure phone calls standing in the doorway next to the hall, where kids are pushing and shoving past, jockeying in the way kids do, while trying to share with with me her blood sugar number. She’ll no longer have to take time out of her measly lunch period fielding questions from me that usually start with: So, how’s it going? As if I forgot she’s at school, and not a sleepover at Grandma’s.

Now—she’s been back to school for four weeks—she texts us from her seat. Before or after she eats, sometimes not at all, but those rare occasions we remind her of our expectations. She texts us, too, if she goes low and has to correct. She texts us other things as well—”Can BB (her friend) come over.”—but mostly she keeps her messages on topic, so she can get back to the things that a middle schooler finds important, like how in the world did anyone ever arrive at a number with twenty-seven zeroes. Okay, maybe that’s not exactly important, but it is, at least momentarily, a bit mind-boggling. Which will likely for her and most others pretty much sum up middle school.

Anything They Want to Be

A couple of years ago, I got into an email argument with one of my kids’ science teachers. Beyond the fact that I was on a two year low of feeling particularly let down by the conscience and caliber of science teachers at the school, who seemed incapable of anything other than sucking the fun out of the subject, I found the opinions and facts she presented in this particular case just too contradictory and one-sided, as, I’m sure, she found mine. In other words, scientific.

That’s because science, as with any empirical endeavor, such as teaching or parenting, where the goal is to promote an exchange of ideas or influence specific behavior, comes almost always with two sides to every finding. Often, it is the very nature of disagreement or pursuit of an alternative that fuels the creativity and passion for discovery. A healthy difference of opinion is a positive sign that progress is being made.

However, there are some places where the facts are just too substantial, the trends too obvious, the results simply all too clear, as we are reminded every March 8th, on International Women’s Day.

I wish I could stop here and say I have always been a champion of this holiday, as it is observed throughout much of the world, but sadly to say — and I’d wager I’m not alone in this, especially amongst American men — before today I don’t recall ever even having heard of it. That may be because I live a shelled life according to my own principles, but more likely it’s due to the fact that we don’t do enough in this country to give voice to what is the indisputable reality: Women are not treated equally.

Either way, I’m not going to try and write myself into this courageous and remarkable history. For one hundred years women have been saying and writing and witnessing it better than I could ever attain in one quiet morning (or a thousand) at my keyboard. What I can offer though, through hope and example, as a citizen, and as a son and a husband and father, is that one day my daughters and every woman will not have to argue this side anymore. Now, that would be progress.

Please, for a much more moving message on this, watch this short video starring Judi Dench and Daniel Craig which appeared on UK Guardian.

Back to School

Two and a half weeks after Lia’s diagnosis she returned to school. The holiday break was a godsend, giving us time to get our arms around her diabetes, so by the time classes started back up we all had become lay experts in the field, at least in terms of counting carbs and dosing insulin. And Lia was ready to get back. She was eager to share with her third grade teachers and classmates the news of her diabetes and the grown-up manner in which she treated it. It was something Franca and I were anxious to have behind us too.

We had always been on good terms with the elementary school and we both liked her teachers very much, as did Lia too. But neither of us were sure what reaction if any the administration might have in helping us manage her treatment. Franca is a high school teacher at the same school but on a different campus and knew firsthand of the process as well as the planning, preparation and partnership it would require of everyone, especially of Lia’s teachers. So the first thing we did was schedule a meeting with the school for the Friday before students returned.

To prepare for the session, Franca read through and followed precisely the suggestions outlined in the Juvenile Diabetes Research Foundation’s School Advisory Toolkit. This guide, which can be downloaded from the JDRF website, offers a great many details and tools for parents and educators to use in developing a collaborative and thoroughly detailed plan. The toolkit was invaluable and made it much easier for us to understand and share with the school Lia’s specific needs.

As we expected, her teachers and the principal greeted us at the meeting with compassion and promised us their diligence in attending to Lia’s wellness. We spoke about diabetes and the war it had raged inside her pancreas and we helped them understand what was required of Lia and those responsible for her to ensure she’s receiving the care necessary to keep her safe, be it food, access to the bathroom, frequent blood sugar monitoring or insulin. We went over her daily schedule and the times of the day she would need to check her blood sugar and what symptoms to be on the lookout for in the case her sugar levels rose too high or fell too low. We gave them contact numbers and instructed them in the use of glucagon kit. We showed them the supply kit Lia would be using at school. We talked about the letter we were sending home to her classmates’ parents informing them of her diagnosis and we asked to come talk to the students themselves about diabetes, to which the school agreed, as they did to everyone of our other requests, including the creation of Section 504 plan, specific to Lia, outlining in writing the modifications and accommodations the school would provide in regard to her medical disability.

There was much more still to understand and talk about but when we left the school an hour later I felt much more at ease. The principal and teachers had convinced us that we had an ally in them in fighting against this disease, and though their word was all we had, sometimes you just can’t ask for any more than that. Only the day and the weeks and months that follow will truly tell.

To find more information on the JDRF School Advisory Toolkit, click here.