I suspect that every parent has something they’re 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—you 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.
This happened to us at the end of August, 2012, when our six-year-old daughter, Bisi, was diagnosed with type 1 diabetes.
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’re just being silly. But there’s the other side of the coin, too, when the symptoms are right in front of you, and you work to believe that nothing’s wrong.
Over the weekend, we started to worry more and more. Bisi’s energy level—never very high—was even lower than usual, and it was clear she’d lost weight (something we’d 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—“she’s drinking all our profits!” 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. “What’s happening to me?” Bisi asked us—not worried, just curious about why her body was acting so differently than usual.
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—more 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’s Hospital in Boston.
Bisi had to be admitted to the hospital to get her blood sugar down—but 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).
Before this, most of what I knew about type 1 diabetes had come from a friend of Bisi’s 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’s 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—it just happens, it can happen suddenly, and we don’t really know why.
Now, a year later in the hospital, my husband and I heard a more complicated version of what Bisi’s 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—it felt a bit like when you have your first child, and you’re 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’s 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.
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’t 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.
1. Test Bisi’s 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.)
2. Figure out how many carbohydrates she’s going to eat in her meal. (I had never looked at a carbohydrate count in my life, but now, by necessity, I’m 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).
3. Plug these two numbers into a mathematical formula involving Bisi’s target blood glucose level (right now it’s 150, which is 70 or so points higher than what someone’s 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.
4. Draw up the dose of insulin based on the calculation.
5. Inject the insulin and wait at least five minutes for it to take effect before Bisi starts eating.
6. With a measuring cup, dole out the food we’ve calculated for her.
7. 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.
Anyone who has a child knows how difficult it is to get them to wait five minutes or longer when they’re really really hungry, or to eat exactly what they say they’re going to eat. So there’s a lot that goes on between the lines to make sure these seven steps happen.
There’s 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.
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.
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’s 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’t pushing her too low. Each night, before we go to bed, we test her while she’s 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’s between 80-100, she drinks something slower acting, like milk. If it’s 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’s not too low.
She could go too low during the day for one of many reasons—we could overestimate the carbs she’s 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’s at 150 before she does something strenuous), as can certain viruses (others, confusingly, send blood sugar higher).
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—going to camp, going over to a friend’s house after school, or for a slumber party or birthday party—it takes a lot of planning to give her a semblance of independence.
I am not inherently a worrier, but with this it’s impossible not to be. It’s a leap of faith for any of us when we leave our child in someone else’s 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’s running around, that the mom who takes her home for a playdate will keep a special eye on her.
There’s 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—unencumbered 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’s diagnosis.) But, of course, not everything is under our control, and we can’t 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: “My dad’s friend has diabetes and they cut off his leg!” At the time, all I could think of to say was, “Oh, I’m sure that was a different type of diabetes.” But of course it wasn’t.
Later, I talked to the girl’s 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’s 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’s comet. Bisi said, “I’ll probably live until I’m 86, unless I get all my body parts cut off if I don’t eat healthily. But that won’t happen, because I eat healthily.”
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.
Still, another emotion lurks behind all the others. Not long ago, I read an article on ASweetLife by a clinical psychologist who went through the five stages of grief after being diagnosed with diabetes. She said in the piece, “Even though I was not a child anymore, [my mother] too grieved my diabetes. All parents do.” I had never thought about it that way before, but she’s right. Even though Bisi can live a long, healthy life, I feel terribly sad for her, and for us. Sad that she will need tens (hundreds?) of thousands of blood tests and injections; sad that what she can eat and how she lives is so much more regimented and restricted than it was before; that she faces health consequences and worries that a six year old shouldn’t have to know about or think about. And I feel sad, even though she is a girl who takes an enormous amount of pleasure out of life, that she knows her life is shadowed by this. A few months after her diagnosis, looking at our Elf on the Shelf who had been lurking for several days on a sidetable in the living room, she asked me: “Do you think if I ask Elf for something he’ll pass it on to Santa Claus?” She whispered something to Elf that I couldn’t hear then said, “Well, I guess I can tell you what I asked him. I asked him if he could maybe do something about my diabetes.” “You mean to help make it better?” “Yes.” If only Santa were so all-powerful. All I could do was give her a hug.
My daughter also has the Dexcom it helps but not reliable she’s such a trooper but it’s so hard to get her to eat right I would do anything in the world to change places with her but she is so strong and special she tries to help everybody such a sweet girl
My baby girl is 5 was diagnosed at 3 I have a hard time to this day reading and typing this right now I’m in tears but I get up and fight with her that’s what was my wife she’s so great at what she does taking care of my daughter and her daughter but it is so very hard especially at the age of 5 even though they’ve come a far away
yeah… I have type 1 and I have a pump and cgm (continuous glucose monitor) and I take my bolus 10-15 min in advance… if u haven’t already gotten either, I suggest getting them now, and btw I was diagnosed the same year in march
my son passed away at the age of 3 on May 3. We didn’t know he had Type 1. The signs were there, looking back, but he was an active potty training little boy so we completely missed the signs until it was too late. I miss him so much. By the time I was going to take him to the ER, he went unconscious. We called the paramedics and they were able to revive him but he suffered cardiac arrest at the hospital and passed. The doctor said he DKA and then he passed. There needs to be more… Read more »
My brother was diagnosed at the age of twelve. Now nine years later he has been hospitalized for high blood sugar. He’s depressed and angry that he’s different and that he has diabetes to follow him around his whole life. He wants to be like everyone else, but he can’t. He is no longer a minor anymore either, so there is a complete lack of control to help him manage it or to get him the appropriate help. He knows what will happen to him, but he’s 21 and thinks he is invincible and his friends seem to think amputated… Read more »
One of my son also suffers from Type 1 diabetes and it changed my life too.
Wow. This is so very close to our story- even down to the date of dx.
Thanks so much for putting this out there. So important for people to relate, because going through this is difficult and unique and oftentimes, lonely. Blessings to your family.
Maybe It’s cause my mom is not to concerned and also due to the fact that we get so much support from the hospital. But anyway…
I find this article to be a bit much. I have type one diabetes and it’s not to bad. I cope just fine without worrying too much, and you wouldn’t even be able to tell I had it unless you saw me injecting or checking my glucose.
I found this article both sad and inspiring. My son was diagnosed with T1 Diabetes at 7. He is now 14. He has had to deal with this condition for half his life now. It gets no easier and he resents all the planning, calculations, injections and needle pricks so much. I too, feel so sorry for him. I worry so much about how he will cope with he reaches 18 years. Will be drink alcohol? as of course he will want to be no different from his peers. I guess we all have to let go sometime as they ‘have to drive the bus’ at… Read more »