It’s 1:30 am and I’m sitting in Leah’s room. I just gave juice and Greg is preparing a new cartridge of diluted insulin and redoing the pump settings. At 12:40 am we were startled awake by the familiar – but always nerve-wracking – beeps of continuous glucose monitor alarms. As familiar as they are, my heart pounds every time, especially in the middle of the night. We did a dose adjustment six hours earlier, and she has been running low all night. We gave carbs at bedtime, but she is dropping again, and after four hours of blood sugar management in the middle of the night, we come to the realization that she is still too young and too little for full-strength insulin. We will continue diluting insulin for a while longer. We try not to wake her during some extra finger pokes, but it’s inevitable, and our hearts break a little each time. This was our recent adventure in September, but every month, week, day and hour there is a new adventure we tackle with diabetes.
On the weekend after Yom Kippur, we were in Lake Tahoe, and we found ourselves giving insulin injections at 4 a.m. to our 4-year-old daughter, when her insulin pump accidentally shattered. After an entire weekend of round-the-clock “pokes,” she was done.
“I don’t like my diabetes!” she said. “Take my diabetes away! No more pokes!” Oh, if only we could.
Among the many lessons I have learned from my warrior daughter is one about the complexity of bravery. Bravery does not mean never feeling scared or upset. Bravery is not the absence of fear – rather it is charging forward in the face of fear, despite feeling this way. Much of the time, she tolerates the pokes and takes it all in stride, but she is growing and developing greater awareness about her body’s needs, and that everyone’s body is different, and sometimes it takes a toll.
Leah was diagnosed with Type 1 Diabetes three years ago, when she was just 15 months old. She woke up super thirsty, was soaked in urine and gasping for breath. When we rushed her to the hospital, we learned that she was in severe diabetic ketoacidosis (DKA), a potentially fatal complication of diabetes, and doctors did not sugar coat how serious this was. This is often the first sign of Type 1 Diabetes (T1D), and this is how we found out our daughter has T1D.
Throughout our eight days in the Tarzana pediatric ICU, every doctor we saw said she was the youngest, most critical patient they had seen. That shook us to our core. Unbeknownst to us, her blood sugar had skyrocketed so high that her veins had collapsed to the point that they could not get a line into her to give her the fluids she needed, and they had to access her vein through her jugular. The doctor told us there was a real risk of brain swelling and it would take a few days until we would know if we were out of the woods. It was the middle of the delta variant during the pandemic, and we had a toddler and another baby on the way. There was a lot of uncertainty about what would happen, and we could not begin to comprehend how our lives would change.
Type 1 Diabetes is an autoimmune disease in which the body does not make insulin, which the body requires in order to process sugar and turn it into energy. People with T1D must calculate every carbohydrate they consume and take insulin in precise amounts, either by injection or insulin pump, to manage fluctuating blood sugar levels in order to survive.
Over those eight days in the PICU, she recovered with incredible strength, and we learned how to care for a toddler with T1D, how to check and manage her blood sugar around the clock, how to calculate carbohydrates, and how to measure insulin and administer injections.
Type 1 Diabetes does not discriminate – every story is unique and it affects people of all ages – in our case, Leah was so young when she was diagnosed that she was still nursing, and we learned how to carb count breastfeeds. At four, the fact that she still takes diluted insulin underscores just how little she still is, and how twisty the road is to navigate when the stakes are so high with such a tiny human. No pharmacy sells diluted insulin – so every few weeks, our kitchen becomes a compounding pharmacy as Greg manually dilutes insulin to enable us to give her the proper dosing that her body requires.
Diabetes technology has come a long way, even in the three years that we have been on this journey. We waited for the new model of her glucose monitor to come out like we wait for the new iPhone, and this one is smaller and more advanced. We initially had to administer insulin on the pump, itself, and that meant sneaking into her room while she was asleep; but a couple years ago a software update enabled us to dose her insulin through a phone in bluetooth range of her pump, which means an adult can do it from several feet away while she plays on the playground and we can do it from outside her room while she sleeps. While the technology has a tremendous impact on our lives, it still fails from time to time, and we rely on our own resourceful insulin ninja skills to carefully replace a failed pump site at night in the dark without waking her, give injections around the clock when the pump is out of order, or finger poke to verify a wonky glucose monitor reading with a glucose meter.
Today, Leah is an active 4 ½-year-old, who is thriving in pre-K. A gymnast, swimmer, dancer and monkey bars extraordinaire, she is a firecracker, with a hilarious sense of humor, a bubbly personality and fancy sense of style that calls for extra flair. She is a daredevil, who eagerly rides waterslides with kids twice her age. She takes her role as both a big and little sister seriously. And she tolerates continuous glucose monitor changes, pump site changes and finger pokes like a champ. She is beginning to process and articulate her feelings about them, and she is learning to recognize what to do when her sugar is high or low. The fact that we calculate all her food and dose insulin is becoming second nature for all of us in a way we never believed it could. They say children with diabetes are some of the strongest, most resilient people, and we have a front row seat to witness this every day.
“I know why I’m high,” she said maturely and matter-of-factly after school on Friday. “Because I had a lot of sugar, because I was very low.”
Leah’s diagnosis, and the trauma she and our family endured, changed our lives forever. Those eight days in the pediatric ICU were the scariest of our lives. Diabetes does not define us, but it is forever woven into the fabric of who we are, as individuals and as a family.
Diabetes is a family affair, and we often manage the effects on her siblings as much as we manage her blood sugar. When Leah got her pump, which she wears in a fanny pack, her older sister, Mila, wore a fanny pack to match her sister’s for months and told everyone that it was her pump. When we go to a birthday party and Leah’s blood sugar is too high, we wrestle with how to allow all our children to enjoy the pizza, juice and cake. How do you explain to one child that they can have a cupcake but the other has to wait an hour? We often take our cupcakes to go, and her siblings wait to eat them with her later in solidarity. It is fills me with pride and warm fuzzies to see their thoughtful kindness for each other.
Other times we allow her to have a cupcake, juice or cotton candy at the party, and we prepare for the blood sugar roller coaster that follows, knowing that is our responsibility to manage it so she can be a child.
Still, other times we hear how unfair it is that their sister gets candy when her sugar is low.
“It’s not fair. I want diabetes so I can have sweets, too.”
Sometimes we struggle with how to talk with our children about it in these moments. We know one day they will understand, but for now, we take a deep breath, try to offer them empathy and encourage compassion.
The “pokes” can sometimes be uncomfortable, and how we explain to them that something painful can actually be beneficial to their health is another needle that we thread carefully. As parents, we teach her how to take care of her body (even when it is not so fun), while giving her as much autonomy as possible, and we strive to strike some balance with this endeavor. But it is a constant effort, and diabetes can be unpredictable.
She refused to remove her glucose monitor the other day when it was time to switch it, expressing frustration with the constant discomfort. We let her make the decision to wait, and the next day, she bravely and maturely pulled it off herself, which she followed with a case of the sillies, pretending to remove one on me.
High blood sugar over a prolonged period of time is unhealthy, while low blood sugar is dangerous, and must be treated with sugar immediately. Weaving between these extremes is a delicate dance we do 24/7, while trying to encourage positive relationships with food, healthy body image and provide a typical childhood experience.
We also have to be careful not to create unhealthy obsessions with carb counting and food restrictions, which can lead to complicated relationships with food, repression and indulgence, and result in body image issues, particularly in young girls. Mila loves baking and we signed her up for a cooking class to give her an opportunity to explore this passion and experience food freedom.
On Shabbat challah is the highlight in our family, and we go for it. Everyone gets a piece that fits in the palm of their hand, which we can now eyeball usually measures about 10 grams of carbs. We all eat low-carb/high-protein breakfast cereal and carb smart ice cream (which is actually quite delicious). Diabetes aside, we try to instill healthy eating habits. But taking diabetes into account, the result on our family’s lifestyle is that we all end up being a little more conscientious about food, while also trying to allow for indulgences.
We avoid restricting sugary food to encourage participation in school, cultural and social experiences to fullest. Instead, we, as caretakers, take responsibility to manage with extra insulin, and we navigate this carefully, often compensating in creative ways, including sometimes taking our dessert to go. With secular holidays where sugar is central, like Halloween, we learned about the Switch Witch, who is a lot like the Tooth Fairy. Our kids pick a portion of their candy to keep and leave the rest out for the Switch Witch, who comes when they are not around, takes their candy to give to children who are less fortunate, and leaves them a special non-food gift in return. She gives them coloring books, lip gloss, stickers or anything exciting and not sugary. One day, they will catch on, but for now, she has some enthusiastic customers in our house. This kind of creative response is not specific to diabetes, and is universally applicable for anyone with significant food allergies or sensitivities.
Food is a hallmark of Jewish holidays. Apples and honey, fasting followed by bagels and kugel, potato latkes, jelly donuts, dried fruit, hamantaschen, mishloach manot, matzah, matzah ball soup, matzah brei, blintzes and challah…the Jewish calendar is filled with holiday food that is deliciously central to our culture. Yet, for a person with Type 1 Diabetes, these carb-filled foods are a blood sugar roller coaster waiting to happen. Throw a turkey dinner on top of it, complete with stuffing, cranberries, yams and cornbread, and you have a potential spike to control and a constant game of limbo – how low can you go? The answer is: it depends how much insulin you have.
Our goal is to let her enjoy all of these in moderation, and we do our best to calculate appropriate amounts of insulin. We are like the duck that is always paddling underneath, but calm on the surface – we are always calculating in the background, but we try not to let diabetes headline our every interaction at these holiday gatherings. Sometimes our estimates are spot on, and the longer we do this, the more second nature it becomes. And sometimes, no matter how hard we try, we see inevitable blood sugar spikes and drops that can take hours to rectify. Learning to accept what we can and cannot control and to roll with this unpredictability is part of living with diabetes and loving someone with it. We walk the tightrope to experience the joy, while managing the roller coaster with insulin, calculations and judgement calls.
At school holiday celebrations she eats all the high-carb, hard-to-count foods, and we work with the school to ensure the calculations are accurate so she gets the right amount of insulin.
The challenges of diabetes are real and we live with them every single day. As Jews, we are taught that when life throws us challenges, we turn to our community, and we have found a special tribe within the diabetes community. It is a club we would not wish on anyone, but if you have to be in it, we are lucky to be surrounded by incredible people and mentors – deeply supportive and closely connected through shared experience.
When we were in the hospital at Leah’s diagnosis, we were learning everything we needed to in order to bring home and care for a 15-month-old with diabetes. With Leah in critical condition, we were learning to inject our child, carb count while trying to wrap our heads around the magnitude of the situation, along with complex calculus, and judgement calls with the highest stakes at every turn, and this community held our hand through it all. It takes a village, and it is our responsibility to pay it forward to other families, who may be starting out on this journey.
We are grateful every day for the technology that is available to us in Los Angeles in 2024, where we have access to the most cutting-edge health care. As a working mom, I utilize glucose alerts on my phone and watch that enable me to move through my day with a constant eye on her.
We face each tomorrow, knowing we are raising resilient, compassionate children, and we continue our commitment to advocacy, because the complexity of such bravery is the why that drives us. And we know this compassion, bravery and resilience will serve them well, as Jews in America, and as humans in the world.
November was Diabetes Awareness Month, but every day is diabetes awareness day in our family.
Barri Worth Girvan is a working mom of three, who lives in the San Fernando Valley with her family and works in local government as the Director of Community Affairs for the Third District at the County of Los Angeles. As a T1D mom, she is a diabetes advocate and she shares her experiences on social media with the hashtag #AdventuresInDiabetes.
