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I suspect that every parent has something they\u2019re particularly worried about, something they work especially hard to protect their children from. For my husband, who spent his summers during high school and college restoring old houses, that something was lead paint. For me, that something was melanoma, after my father died of the disease. You control what you can control\u2014you make your kids take off their shoes when they enter the house, to keep the lead dust outside; you slather them with sunscreen to protect them from the midday sun. But then something comes along, a bolt from the blue, that makes you realize you have no control at all.<\/p>\n
This happened to us at the end of August, 2012, when our six-year-old daughter, Bisi, was diagnosed with type 1 diabetes.<\/p>\n
I first felt the chill of unease that something was wrong at a summer picnic with friends. Twice Bisi had to race behind a tree to pee, with an urgency that reminded me of when she was first wearing underwear rather than diapers. But she was at summer camp, and swimming two or three times a day. Probably, we told ourselves, she was just drinking too much chlorinated pool water. We left at the end of the week for our annual vacation on Block Island. So often as a parent, your mind jumps to the worst possibility, and it turns out you\u2019re just being silly. But there\u2019s the other side of the coin, too, when the symptoms are right in front of you, and you work to believe that nothing\u2019s wrong.<\/p>\n
Over the weekend, we started to worry more and more. Bisi\u2019s energy level\u2014never very high\u2014was even lower than usual, and it was clear she\u2019d lost weight (something we\u2019d noticed but again blamed on summer camp). We started obsessively searching her symptoms on the Internet after Bisi and her older brother went to bed, and diabetes kept on popping up in the search engine. And after doing a Sunday afternoon lemonade stand where Bisi gulped down cup after cup of lemonade\u2014\u201cshe\u2019s drinking all our profits!\u201d her brother said–and then kept on having to dart behind our car to pee, we could no longer deny that something was really wrong. \u00a0\u201cWhat\u2019s happening to me?\u201d Bisi asked us\u2014not worried, just curious about why her body was acting so differently than usual.<\/p>\n
I brought her to the island clinic the next morning, and the diagnosis process was simple. They tested her urine and found sugar in it; and they tested her blood, and found that her glucose level was near 500\u2014more than five times what a normal reading should be. The doctor told me Bisi had type 1 diabetes, and that we should leave the island on the next ferry to get her to Children\u2019s Hospital in Boston.<\/p>\n
***<\/p>\n
Bisi had to be admitted to the hospital to get her blood sugar down\u2014but also so we could learn about type 1 diabetes and the glucose testing\/carbohydrate counting\/injection regimen that from now on would need to happen at least three times a day (with every meal and sometimes snacks).<\/p>\n
Before this, most of what I knew about type 1 diabetes had come from a friend of Bisi\u2019s who had come over to our house for a playdate the previous year. She had a relative who had died of undiagnosed type 1 diabetes. Somehow diabetes came up while I was giving them a snack and I said something that in retrospect sounds to me both inane and ironic, like, well it\u2019s important that everyone eat healthily to lessen the risk of getting diabetes. This little girl told me that getting type 1 diabetes has nothing to do with what you eat or how much you weigh\u2014it just happens, it can happen suddenly, and we don\u2019t really know why.<\/p>\n
Now, a year later in the hospital, my husband and I heard a more complicated version of what Bisi\u2019s friend had told us. Our three days in the hospital were a crash course about the disease and the steps that we needed to take for Bisi before each meal. The torrent of information was overwhelming\u2014it felt a bit like when you have your first child, and you\u2019re learning so much in those early days that you can almost feel your brain stretching and expanding. Yet while that learning was joyful, this education at Children\u2019s was upsetting but essential. Our minds were raw from the knowledge that our daughter now had a chronic disease, yet we were asking our minds to work harder than they ever had to lock in this new information.<\/p>\n
Here is an (extremely) distilled version of the routine they taught us we would now be going through before each meal. The first time they showed me this in the hospital, I burst into tears. I couldn\u2019t imagine doing all this just so that Bisi could have something to eat. But now it usually feels like a regular part of our routine. In fact, Bisi is now able to do much of this herself.<\/p>\n
1.\u00a0\u00a0\u00a0\u00a0 Test Bisi\u2019s blood sugar. (Prick her finger with a little needle called a lancet, use a test strip to suck the drop of blood up through the test strip and into the meter, wait five seconds for the result.)<\/p>\n
2.\u00a0\u00a0\u00a0\u00a0 Figure out how many carbohydrates she\u2019s going to eat in her meal. (I had never looked at a carbohydrate count in my life, but now, by necessity, I\u2019m obsessed. All packaged foods have carb counts on the labels. For other foods, like fruits and vegetables, we either reference a book, look online, or weigh them on our new kitchen scale. A typical dinner for us now would be a bunless turkey burger with cheese (no carbs), some roasted broccoli (5 carbs per cup), and some kind of low-carb dessert, like a half cup of blueberries with cream (about 16 carbs).<\/p>\n
3.\u00a0\u00a0\u00a0\u00a0 Plug these two numbers into a mathematical formula involving Bisi\u2019s target blood glucose level (right now it\u2019s 150, which is 70 or so points higher than what someone\u2019s without diabetes would be); her correction factor (for her, one unit of insulin would bring down her BG level by 250 points); and her carbohydrate ratio (these days, during the day, she needs one unit of insulin to eat 60 carbs; at night, when her body is more insulin resistant, she needs one unit to eat 35 carbs). Luckily, we can do this calculation on our iPhones, which saves a lot of time.<\/p>\n
4.\u00a0\u00a0\u00a0\u00a0 Draw up the dose of insulin based on the calculation.<\/p>\n
5.\u00a0\u00a0\u00a0\u00a0 Inject the insulin and wait at least five minutes for it to take effect before Bisi starts eating.<\/p>\n
6. With a measuring cup, dole out the food we\u2019ve calculated for her.<\/p>\n
7.\u00a0\u00a0\u00a0\u00a0 Make sure Bisi eats pretty much exactly the number of carbs she said she was going to when we calculated the dose, and that she eats it within 45 minutes or so of her shot.<\/p>\n
Anyone who has a child knows how difficult it is to get them to wait five minutes or longer when they\u2019re really really hungry, or to eat exactly what they say they\u2019re going to eat.\u00a0 So there\u2019s a lot that goes on between the lines to make sure these seven steps happen.<\/p>\n
There\u2019s a lot that goes on between the lines emotionally, too, with a diagnosis like this. One of the main emotions I find myself having to tamp down is fear.<\/p>\n
There are several reasons why a type 1 diabetes diagnosis is so scary. Diabetes can kill someone quickly, through severe low blood sugar caused by the insulin. Or it can kill someone slowly, through heart disease, kidney failure, or one of the many other conditions that type 1 diabetes can cause. But with careful management and probably some luck too, diabetics can live long, healthy lives.<\/p>\n
Still, there are many times since Bisi was diagnosed that I have had that catch of fear I used to have when the kids were newborns. On those nights, I go in to check on her while she\u2019s sleeping, just in case. The many blood sugar tests we give Bisi each day are both to gauge how much insulin she needs at meals, and to make sure that the insulin isn\u2019t pushing her too low. Each night, before we go to bed, we test her while she\u2019s asleep. If her blood sugar is below 80, we need to wake her up to get her to drink some quick-acting sugar like apple juice. If it\u2019s between 80-100, she drinks something slower acting, like milk. If it\u2019s above 250, we give her a half unit of insulin to bring her glucose level down. In any of those cases, we check her again at 2 am to make sure she\u2019s not too low.<\/p>\n
She could go too low during the day for one of many reasons\u2014we could overestimate the carbs she\u2019s eating and give her too much insulin; we could mess up her dose, giving her a unit rather than a half unit; physical activity can make blood sugar plunge (we make sure she\u2019s at 150 before she does something strenuous), as can certain viruses (others, confusingly, send blood sugar higher).<\/p>\n
All this is to say that the world suddenly feels like a much scarier place in terms of Bisi. And at a time when she should be putting some distance between herself and us\u2014going to camp, going over to a friend\u2019s house after school, or for a slumber party or birthday party\u2014it takes a lot of planning to give her a semblance of independence.<\/p>\n
I am not inherently a worrier, but with this it\u2019s impossible not to be. It\u2019s a leap of faith for any of us when we leave our child in someone else\u2019s care. But that leap is now much bigger than it used to be where Bisi is concerned. Every day, my husband and I need to trust that the school nurse will give Bisi the right dose of insulin; that the gym teacher will watch for signs of lows while she\u2019s running around, that the mom who takes her home for a playdate will keep a special eye on her.<\/p>\n
There\u2019s also the delicate balance of making Bisi realize that she has to take her condition seriously, without using fear to make that point. As much as possible, we want her to feel like a regular girl\u2014unencumbered by the new fears we have. In many ways, life has gone on as usual for her. If anything, her mood is more even and she has more energy than she did before her diagnosis. She loves school, she loves biking, skiing, playing with her friends and with her new Labrador puppy, Cinnamon. (Cinnamon was born less than a month after Bisi was diagnosed. We thought for a bit about delaying our plan to get a puppy, but then decided to invite some happy chaos into our lives, alongside the uninvited chaos of Bisi\u2019s diagnosis.) But, of course, not everything is under our control, and we can\u2019t always insulate her from the realities of this disease. Bisi had a friend over one day and when I told her that Bisi has diabetes, she said to us both: \u201cMy dad\u2019s friend has diabetes and they cut off his leg!\u201d At the time, all I could think of to say was, \u201cOh, I\u2019m sure that was a different type of diabetes.\u201d But of course it wasn\u2019t.<\/p>\n
Later, I talked to the girl\u2019s mother to get the whole story. The man had had type 1 diabetes for decades, and had rarely checked his blood sugar or taken insulin. So Bisi and I talked about how this situation was very different from hers. She takes her insulin, she eats well, and she\u2019s working hard with us to manage her diabetes carefully. Clearly, though, what the girl said sunk in. Not long afterwards we were talking about whether we would live to see the next pass-by of Halley\u2019s comet. Bisi said, \u201cI\u2019ll probably live until I\u2019m 86, unless I get all my body parts cut off if I don\u2019t eat healthily. But that won\u2019t happen, because I eat healthily.\u201d<\/p>\n
I found this remark horrifying, darkly humorous, and weirdly hopeful. Bisi knows that what she has is serious, and she also knows, at some level, that what she eats and the decisions she makes will have an effect on how she does with this disease. None of us would wish something difficult like this on their child; but when it happens, you can hope that the challenge gives them more grit and strength than they would have had without it.<\/p>\n