Thursday, January 3, 2013

Back to a New Reality

After Bisi’s diagnosis, she and I left Block Island on a Monday and returned on Friday, five days later. But it felt more like five years. So much had changed for Bisi and for us—it was hard not to think of the world as BD (before diabetes) and AD.  My Mom and Jamie picked us up at the ferry, smiling and waving excitedly from the pier as the ferry docked. I told Jamie: “That was one of the longest weeks of my life. Did it feel like a long week to you?” “No, it felt really short!” At least someone had been having a good time. My Mom and her friends had kept Jamie busy swimming, fishing, eating out, and playing games. But Jamie was clearly very concerned about his little sister, treating her with a tentativeness and delicacy that has dissipated a bit since. The kids love playing elaborate imaginary games with their stuffed animals—games like school or animal football (“Lobster passes to Ellie; she breaks Lambie’s tackle and scores!”). Bisi brought back a stuffed dinosaur she’d picked out for Jamie at the hospital; and he gave her a stuffed lobster he’d bought on the island. They incorporated the new animals into their playing and adjusted the game to play animal hospital, complete with blood sugar tests and insulin injections.

What I realized during that week on Block Island was how many of our rituals revolved around food, and how much I would miss the easy freedom of grabbing a quick meal or snack for Bisi without having to worry about blood sugar or shots or tests. On Block Island, one of our rituals was going to get Payne’s donuts (for me, this was a daily ritual, but I justified it by the fact that we’re only there for 2 weeks a summer). The donuts were total heaven if you got them fresh out of the fryolator—crispy on the outside, soft on the inside, and coated with cinnamon or sugar (granulated, not powdered). But now suddenly they seemed like hazardous “carb bombs,” as Jamie called them. Another ritual was picking blackberries and cooking a cream and sugar laden blackberry pie. Another was going to the local ice cream parlor for brownie sundaes or rainbow sherbet. This makes it sound like all our food rituals revolved around sugar; before Bisi’s diagnosis I had never stopped to analyze the strong correlation between food rituals and sugar, or worried about how many of those rituals we’d developed.

Another ritual was going to the Block Island farmer’s market on Saturdays, so in an attempt at normalcy, we went there the morning after we arrived. I managed to steer Bisi past the delicious homemade scones, but not past the table run by our friend Sue Littlefield with samples of great local honey: clear honey made from the nectar of blackberry blossoms; cloudy made from goldenrod. We also couldn’t get past the fresh squeezed juice that both Jamie and Bisi loved. We bought an orange juice and told Bisi that she could have it later, so we could include it in her carb calculations and insulin dose at lunch. (Even though we matched her dose to the carbs in the orange juice, her blood sugar after lunch spiked past 400—another lesson we were learning was that not all carbs are created equal, and that the 30 carbs in a cup of orange juice would spike her much higher and faster than an equal number of carbs from, say, brown rice.) We also bought some smoked local fish (good protein snack) and locally grown Asian greens, as part of our effort to get Bisi to eat as many leafy greens as possible. But I was so flustered by the effort of trying to negotiate our way around the new carb hazards in a way that wouldn’t make Bisi miserable that I left the food bags at the market. (Luckily, Block Island is the type of place where someone had given my bags to the last truck, and I caught him a couple hours later, just as he was packing up.)

Part of the issue while we were on Block Island was that Bisi was absolutely ravenous. Now that she was getting insulin, she was once again able to absorb nutrients from her food. She was needing huge snacks several times a day, yet we were trying to find protein-rich snacks that wouldn’t require an insulin shot.  The doctors in the hospital had established a carbohydrate ratio for Bisi in the hospital of 70 grams of carbs per unit of insulin (we adjusted this ratio several times while on Block Island and have continued to adjust it since). With that ratio, she could have a snack with up to 27 carbs without needing any insulin. A lot of different snacks fit under that cut off—most yogurts, some granola bars, or things like crackers and peanut butter (peanut butter is quite low carb). It’s when you get into the carby baked goods that you get into trouble. One Starbucks blueberry streusel muffin, for instance, is 57 carbs. Wherever we went—beach, fishing, out for walks, over to someone’s house—we brought pre-measured snacks of all different kinds.

Another issue was that suddenly imposing a complicated regimen of carb counting and insulin calculation onto the already chaotic mealtimes at a summer house full of guests was a challenge. My mother, who owns the house on Block Island and was there with us, is a wonderful cook who loves to entertain. So she would be planning and preparing elaborate meals for 12 while we were testing blood, counting out carbs, dosing insulin, and measuring out food to match. Implementing this was a huge change for Bisi, for us, and for Jamie, since we were suddenly spending ten times more time figuring out Bisi’s meals than his. But also a big change for my Mom, who prefers to have the kitchen to herself but was suddenly having to share it with two obsessive carb counters.

It was during that week that my Mom came up with a very simple apple dessert that has become a staple for Bisi and for the rest of us (plus, it helped us deal with the 200 apples we brought home after some overambitious apple picking back near Boston.) It’s healthy and easy, but, especially if you add a splash of half and half, just special enough that Bisi still feels like she’s getting a tasty dessert. And for a six year old with diabetes—or any six year old—that’s no small thing.

Darcy’s Simple Apple Dessert
Cut up an apple or two and sprinkle generously with cinnamon. Cook it in the microwave in a covered dish until soft, about 3-4 minutes, depending on how many apples you use. Serve plain, or with a bit of half and half to dress it up.

This mixture is also great on hot cereal. And you can substitute a pear for the apple, and of course ginger or nutmeg or any spice you like for the cinnamon.

1 comment:

  1. I think starting with a 1/70 ratio probably really motivated you to try for low carb foods. That makes sense, because, for you, it was possible to find something to eat that would not require insulin at all. Our ratios were 1/16 and 1/25 depending on the meal, so avoiding some insulin was virtually impossible. I'm just imagining that it would influence your motivation. This is really hard. Isn't it? Also, unfortunately, Dallas Children's doesn't send kids home with a ratio. Rather, they give you a fixed number of carbs for each meal, and you eat exact 35 grams of carbs at every meal, and 15 grams of carbs at every snack until the CDEs give you "permission" to move to ratios, which only happens after you take a class called, "take charge" which, we couldn't get into until 6 weeks after her diagnosis. Can you imagine being on a diet that restrictive for 6 weeks?! I raised holy hell and got her moved to ratios over a phone conversation, but it's been very frustrating living in Dallas where the education system caters to the lowest common denominator and everyone must go through the same mill. It's been very stressful, and there are no alternatives. Dallas Children's is the only place to go. I was given the name of exactly 1 independent pediatric endocrinologist. Four different people referred her to us, including my husbands endocrinologist (who, unfortunately, does not treat children) but that doctor everyone loves is so swamped that she's not taking new type one patients.