Like mine, many families’ lives are suddenly upended with the news of an unexpected health crisis. We struggle with the diagnosis, come to terms with the treatment and prognosis, rearrange our routines, recruit friends and family, and deliberate with how best to explain things to young children. The emotional and financial turmoil brought about by a critical diagnosis can profoundly affect each family member. But some families must balance a chronic, long-term illness indefinitely, and find ways to communicate this experience with children as they grow. These long-term health issues may have existed before children were born, or resulted from a prior illness or treatment. Regardless, I was interested to hear how Kelley balances her disease with her responsibilities as a mom, and learn how her children have come to understand their mother’s condition.
Kelley is a registered nurse and worked for five years on a NICU (Neonatal Intensive Care Unit). In addition to patient care, she was also very interested in academic research. Kelley earned her PhD in Family Relationships and Child Development, and worked as a nursing professor. Kelley also writes content for nursing textbooks for Elsevier Publishing. While Kelley was putting together an article about Where Did Mommy’s Superpowers Go?, I really wanted to learn more about her and how her children cope with her having diabetes.
First, Kelley clarified the distinction between Type 1 and Type 2 diabetes. Type 1 is considered a long-term, auto-immune disease, while Type 2 is brought on by dietary habits and excess weight. Type 2 is the kind of diabetes we see on The Biggest Loser; contestants have usually acquired the disease through chronic overeating, excessive sugar intake, and morbid obesity. But when they shift to a nutritious diet, stick to an appropriate caloric limit, and lose weight through regular exercise, their blood sugar often returns to normal levels, and they no longer require insulin. I was under the impression that all Type 1 diabetics are born with the disease, but in Kelley’s case, she had no symptoms, and was unexpectedly diagnosed at age 29. During some routine blood tests, her blood sugar was high, and her doctor re-ran the tests, thinking there must be some mistake. Subsequent tests showed identical results and confirmed that Kelley was diabetic. At first her doctors mistakenly diagnosed her with Type 2 diabetes, and prescribed oral medication. But when this initial treatment showed no improvement, genetic tests were ordered which confirmed that Kelley did in fact have the gene for Type 1 diabetes, which was thankfully caught early. Kelley was prescribed insulin injections to keep her blood sugar from spiking to dangerously high levels for the rest of her life.
Kelley pricks her fingers to check her blood sugar 12 times a day. In addition to regular insulin injections four times a day with meals and at bedtime, she carries snacks or glucose tablets with her everywhere she goes in case her blood sugar dips too low in the opposite direction. But Kelley doesn’t just rely on medication; when I interviewed her, she had just had a high-intensity interval run at the gym, and was speaking to me from the stationary bike, popping a glucose tab to get her through the workout. Exercise brings blood sugar down naturally, as the muscles use glucose and muscle glycogen as fuel, so sometimes when Kelley feels a “spike”, she’ll try jumping rope or jogging in place as a natural, drug-free remedy.
Diet is also critically important. A careful balance of carbohydrates, healthy fats, and lean protein helps keep blood sugar levels stable. Avoiding processed food, and eating at regular intervals throughout the day is also essential to avoid dangerous spikes and dips. Even stress can cause fluctuations in blood sugar levels, so Kelley works out regularly and incorporates time each day to relax, decompress, and breathe—not an easy task with three active boys!
Which led me to my next questions: how did she explain her illness to her sons? How old were they when she first had to discuss the disease with them? How do they perceive the finger-pricks, the daily needles, her mood swings and snack schedule? I thought back to when I had to sit down and talk to Jason about the “yucky stuff” in my body that was making me sick, and why I had to leave for a while to get “strong medicine” to make me better. When I created that story, comparing myself to a weakened superhero, I had eight goals that I wanted to accomplish. Below are my eight goals, and how they also apply to the way Kelley and her family live with diabetes.
1.) Educate: Kelley explained how when she was pregnant with her 2nd child, she taught her 3 year-old son how to call 911, what to say (“My mommy has diabetes and I can’t wake her up.”), and where to find her glucose tablets. Both of her older boys understand the difference between carbs, fats and protein and why all three are important, as well as the benefits of exercise in controlling blood sugar.
2.) Emphasize similarities: Who doesn’t know a child who gets cranky when he’s gone too long without a snack? Kelley is the same way; she’ll admit she can get really irritated when it’s been a while since her last meal, and the kids recognize this. Just as a good mom will whip out the Goldfish and juice boxes, her kids know to remind Mommy to eat to feel better!
3.) Enroll: I gave Jason some personal items to take care of while I was away; in the book, the little boy takes care of Mommy’s plant until she returns. Kelley’s boys know how to call 911, and what to tell the operator. Kids like being helpers, and giving them small jobs or manageable responsibilities allows them to reciprocate the nurturing we give our children.
4.) Empathy: Jason knows that the “strong medicine” I had can cause hair loss, so whenever he noticed a person with a pixie cut or shaved head, he would ask, “Did that person have chemotherapy too?”! Five years later, he is quite empathic towards anyone dealing with illness or disability. Kelley reiterated this observation, saying her boys are very compassionate towards other people who have to take medicine like their mom. Sometimes after a finger-stick, one of her boys will ask, “Mommy, do you need a Band-Aid?” Her kids understand that their mom might not be able to eat the treats they can, and are patient when she has to check her blood sugar before driving a car, or wait to pick up her prescriptions.
5.) Ease fears: I asked Kelley if her boys were afraid of the finger-prick device, the needles, or her future health. Jason wanted to know why I had to “live” at the hospital, and why I needed tubes in my chest. Other children might be old enough to wonder if their family member might die. These are tough questions each family has to grapple with on an individual basis. But for Kelley’s kids, diabetes is “no big deal”…at least for now. She admits sometimes they ask, “Does it hurt?” when she takes her insulin, but for them, her disease is just a part of life. As she explains, “It’s all they’ve known, so it’s just part of my identity as their mom.” Kelley's kids are checked annually to see if they've inherited the same genetic disposition for diabetes, and the only thing they're currently afraid of is having their blood drawn.
6.) Ensure predictability: It was very important to me that Jason’s routine remain as unchanged as possible while I was away. Even the social worker at Boston Medical Center emphasized that Jason schedule remain the same as usual, to provide a sense of stability and security. In addition to her insulin regimen, Kelley makes sure to eat at regular intervals, even if this conflicts with family mealtimes together. But her kids know the routine; when Kelley struggles to push off her snack so that she can enjoy a meal with her family, she can often get irritable and stubborn. Her boys know it’s time for her to eat, and insist she have a little something to tide her over until dinner!
7.) Express Emotions: Kelley was the first to admit that a drop in blood sugar and the mood swings that go with it are very frustrating for her kids. When Kelley read my book to her boys to help explain how diabetes affects her, her 7 year-old said, “Yes…when your blood sugar drops the bad cells come in and make you tired and irritated. That's when you lose your superpowers." She used the story to validate her sons’ feelings when a blood sugar dip turns her into an “annoying” Mommy, and listened to them express how glad they are when medicine or a snack restore her "superpowers".
8.) Exterior changes: With diabetes, Kelley may not have changes in her physical appearance, but she’s had to explain her loss of energy and subsequent inability to be active to her children. Now that she has her own copy of Where Did Mommy’s Superpowers Go?, Kelley has a new way to teach her boys how too little sugar in her blood steals her “superpowers”, and the right food and medicine bring them back!
As Kelley and I wrapped up our interview, she unknowingly offered a ninth goal: EMPOWERMENT. By educating our children on a level they could understand, providing information that minimizes their fear and worry, and allowing them to participate in our care, we foster a sense of responsibility and pride. As Kelley stated, “How empowering is that for a child? You brought it down to his level, made him feel like an important part of the team, and showed him how he can impact you. Even though parents empower them, children feel powerless a lot of the time, just by being a kid.” It was wonderful to hear someone of Kelley’s expertise validate the way I handled things with Jason, but more importantly, I was amazed at the resiliency of her kids, and so impressed with how they have just accepted her disease and treatment as part of life. While it is natural for parents to hesitate before sharing any serious diagnosis with a child, their own or that of a beloved family member, we need to know that it’s not what we tell kids, but how we tell them, that’s important.
Check out some of Kelley’s great articles at http://kelleyward.hubpages.com/.
For more information on living a healthy, balanced life, feel free to email Kelley at firstname.lastname@example.org; she is happy to answer any questions you may have!