Wednesday, August 28, 2013

365 Days of T1D

It's now been a year since Bisi was diagnosed. In the weeks leading up to the anniversary, I found myself thinking over and over again about that time: the growing fear that something was wrong mixed with the lingering hope that everything was fine. The shock of her diagnosis, and the subsequent days in the hospital, where we were introduced to the mind-boggling, terrifying balancing act that taking care of Bisi would now require. I started reliving little things, too, like the feeling of dread I used to have during the five seconds between putting her blood on the test strip and finding out her blood glucose number on the screen of the meter. It reminded me of the year anniversary of my father's death, when memories of the weeks before he died kept popping unbidden into my head.

And I wasn't the only one who was thinking about the anniversary. Bisi kept on talking about it too. On the morning of the anniversary, she told me. "I've now had diabetes for more than a year." "How do you feel about that?" I asked her. "Good."

I wasn't sure what to make of her comment, but I didn't want to press it, since she didn't seem to have more to say on the subject. Did she mean that she was happy it had been a year? That it had been a good year? Or did she just not really want to talk about it with me?

Just as they told us in the hospital, looking back to the beginning, we can't believe how much we've learned, and how much of it now feels routine and integrated into our lives. Yet, T1D is an incredibly frustrating disease--one that is impossible to master. Bisi's numbers are always shifting--depending on how active she is, whether she's fighting off a bug, if she's growing, and what she eats. If she eats out and has something like pizza or french fries, paired with dessert at the end, her blood sugar goes crazy, and Mark or I are sure to be up testing her at 2, and maybe again at five. But even two identical, relatively low-carb meals at home can result in quite different blood sugar numbers. No matter how much we try to get our heads around it, diabetes always seems to have the upper hand. I was viscerally reminded of this on the day of Bisi's diagnosis anniversary. I tested her an hour or two after breakfast and she was 231 (too high). But I decided not to give her insulin because she wasn't hungry, and a half unit of insulin without carbs would probably have sent her too low. So we went out for an hour and a half of not very active crabbing at a local dock. We came back for lunch, and Bisi started freaking out over something insignificant. It didn't occur to me that she'd be low, since she hadn't had short-acting insulin since breakfast and also hadn't been very active. But when I tested her, she was 50--way too low, and most likely the cause of her freakout. Mistakes like these are humbling; and they're scary.

But there have been good things too. Though there of course have been bumps in the road, I am so proud of and amazed by how Bisi has taken this on. She rarely complains about getting shots, about going to the nurse all the time, about how her diet is circumscribed ("sorry, Bisi, you can't have that treat everyone else is having; you can't have seconds on dessert; you can't have that treat you really want now; but maybe later. You can no longer have the maple syrup you love on your pancakes; instead you can have this berry compote I made, which I know is a poor substitute; I know you'd really love a yogurt or piece of fruit for snack, but right now all you can have are cheese and nuts." And on and on and on). She takes real responsibility for what she eats--always checking with one of us first before eating something with carbs--and in the process she's gained a pretty deep knowledge about different foods and how they affect her. She's learned how to do everything herself--the tests, the insulin calculations, and the injections. This gives her the freedom to go over for a meal at a friend's house without us. It's pretty impressive to see a seven-year-old test her blood and then do her own insulin shot.

Bisi's not one of those kids who voluntarily loves to go on hikes or walks, but she seems much more energetic and robust now than she did a year ago. This summer she's biked six miles around a lake (albeit with a little help from our dog on the hills); she's learned how to body surf and surf in the ocean; she asks to run races around the house, and spends her time outside perfecting her cartwheels and backbends. And she never asks to be carried anymore; though last year she asked all the time. How much of this is that Bisi is a year older and how much is that she's stronger because her blood sugar is more under control than it was? Who knows, but my gut feeling is that she has become stronger, healthier, and happier since she started being treated for diabetes. Maybe this is partly why she said she felt "good" about the year anniversary?

About a year ago, I started this blog by talking about the lemonade stand on Block Island, the day before Bisi's diagnosis, where it became clear to us that something was really, really wrong. When Bisi wasn't chugging lemonade or peeing behind our car, she was sitting listlessly in my lap, her head flopped against my arm.

This summer on Block Island, we did another lemonade stand--this time serving fresh squeezed lemonade sweetened by stevia rather than sugar, so Bisi could drink it without an insulin shot. (We also served our regular Minutemaid lemonade--but the stevia version won all taste tests and sold out first.) This time, when there weren't customers, she spent her time doing races with Jamie and our dog, and doing cartwheels by the side of the road. And I couldn't help thinking what a difference a year makes, in both bad ways and good.


  1. This is a beautiful post. I think it is so important to reflect on all that has transpired and the many accomplishments over that first year and (hopefully) every year thereafter. You and your daughter are so strong! Happy belated Diaversary to her.

  2. Congratulations on beating diabetes for a year. We have such similar timelines, I can't help but follow yours. I hope you will be interested and also follow mine.

    Have you looked into a CGM for Bisi? Eleanor loves hers. We got it about a month after diagnosis. (She was also 6 at diagnosis, and turned 7 not long after) My husband, who has had diabetes for 14 years, watched all the information we were getting from Eleanor's CGM and was so taken with the amount of information we get from it, that he asked his endocrinologist for a CGM of his own at his very next appointment. I only mention this because of the 50 that snuck up on you. It is so helpful to see the curves and slopes rather than just the data points from the finger sticks in between along the way.

    I couldn't imagine trying to get by without it.

    Way to go to you and Bisi for hitting that first year milestone with grace, the vision of the lemonade stand is lovely.

    1. Thank you. We've thought about a CGM but haven't yet done it. Bisi has recently started on a pump (haven't yet had a chance to write about that yet), so we've been busy with the transition and other things. Also, her nurse is concerned that her little body doesn't have enough room for both a pump and CGM. But I hear that they are great, and am sure we will head in that direction. I hope you and Eleanor (and your husband) are all doing well.

  3. Eleanor uses both a pump and a CGM, and we have room for both ;-) love em both!