Two Peas in a Pod

These mothers and their children share more than love and family — they also share type 1 diabetes. Here they describe the special bond their common condition creates, and a glimpse into the struggles and silver linings of living the T1D life together.

 

Lisa & Ellie

Vermont

Lisa and Ellie

 

“Mark and I knew that there was a higher than average possibility that our children would get type 1 diabetes,” says Lisa B., who was diagnosed when she was 9 years old and met her husband, diagnosed at age 6, at diabetes camp. “But we certainly never ever believed it would happen. Until it did.” Lisa, who is also a certified diabetes educator (CDE) at the University of Vermont Medical Center, remembers the first evening her 5-year-old daughter Ellie (now 14), started showing symptoms of high blood sugar. “Based on the signs, I checked her blood sugar at home and just about died when I saw the result on the meter,” she recalls. “I knew… I knew as a person with diabetes. I knew as a CDE with years of experience. I knew as a mom. I knew that life was about to get turned upside down.”

How did your daughter’s diagnosis compare to your own?

“I had nothing to learn in terms of new skills. I knew how to check blood sugar, count carbohydrates, calculate insulin doses. The hands-on skills were not intimidating. But my emotional adjustment took much longer. I did this. Mark did this. We did this to Ellie. It was our fault, wasn’t it? There was no one else to blame. But then, as I watched Ellie adjust, I realized that she was carrying on with her life, with her new normal. And, she was fine. She was more than fine: She was Ellie. Exactly as she should be, even with diabetes.

What’s it like for the rest of the family?

“I sometimes wonder if my son Eric was in some ways the most challenged with Ellie’s diagnosis. I know it seems silly, but he kind of felt left out. Kids want to be like everyone else, right? Well, his everyone else, at least at home, all have diabetes. As he got older I think he came to understand what wishing for diabetes truly meant, and certainly now, at 11 years old, his wish is that none of us had to deal with it.”

What surprised you the most after your child’s diagnosis?

“I have been a CDE for nearly 20 years, the last 11 in pediatrics. I am amazed each day when I meet with families by how resilient these kids are. Diabetes affects entire families, even when it’s just one child diagnosed. Families who are willing to accept and embrace that are often the most successful. That was my biggest surprise: To know it as a CDE is one thing, but to live it within my own family has been an eye-opening experience.”

 

Betsy & Sarah

Colorado

Betsy and Sarah

More than fifty years after being diagnosed as a very young child, Betsy R. can’t remember a time when she didn’t have type 1 diabetes. The same isn’t true for her daughter Sarah, who was diagnosed in 1998, just before her 17th birthday. “Sarah was diagnosed at a time when she was at the height of young adulthood and accomplishment,” recalls Betsy. “Her exuberance took a hit initially, and it’s different now… it always will be. Her grief is tempered by inner resiliency, and her joy is more present, because she doesn’t take a single minute for granted.”

How did your daughter’s diagnosis compare to your own?

“There were no camps, no organizations, and no technology when I was diagnosed. Life was very restricted. Medicine was fragile. Doctors couldn’t prescribe out of state. Diets had to be tightly regulated, and urine testing [for blood sugar] was very inaccurate. It meant I was in the hospital three times a week for the first four years.” —Betsy

What’s it like having a parent with T1D too?

“I wish my mom didn’t have it, but for selfish reasons I am so glad I have had her to look up to over the years. When I was diagnosed, there was so much I already knew and probably took for granted because I grew up with it in our home. And for all of the things I had to learn, I couldn’t have asked for a better teacher. Having her there meant that I got real-time answers and support when I needed it — something most people with T1D could only wish for!” —Sarah

What’s it like raising a child with the same condition?

“It was crazy as she learned how to problem-solve the disease, but it got better as she was able to retain what she learned and figure out her own creative ways to apply her new skills. I’ve seen an inner strength that may or may not be caused by her challenges with the illness, but it takes my breath away to see how far she’s come and how much success she’s had. Sarah owns everything she’s accomplished, and I know it will get her farther down the road. She’s dared to redefine normal and make it work for her.” —Betsy

 

Jenni & Tucker

Massachusetts

Tucker, his sister, and Jenni

Jenni P. was diagnosed with type 1 diabetes in 1984 when she was a very young child. “My parents always told me that I could do everything I wanted to despite my diabetes,” she recalls. “They pushed me to set my goals high and go for it.” And she has. Jenni, who now works in the American Diabetes Association’s Boston office as manager of community health strategies, has been a competitive swimmer, traveled extensively, and even gone on skydiving adventures — all while juggling blood sugar management. Now a mom of three, she’s working hard to instill this same can-do attitude in all her children, but especially her son Tucker, who was diagnosed with type 1 diabetes a month before his fifth birthday.

How did your son’s diagnosis compare to your own?

“The technology we have available at our fingertips now is amazing. I love that he has all of these things to help manage his type 1. We are more active in diabetes support groups and organizations now than when I was as a child. He is looking forward to going to diabetes camp for the first time. I think, though, at times there is more stress about managing type 1 now than when I was younger. The technology gives you more real-time readings and instant feedback on “how you’re doing.” This can create a lot of stress to be perfect. It’s harder to remember that numbers are just that — numbers — and they are information, not grades.”

What’s it like raising a child with the same condition?

“The most challenging thing for me is to not get exhausted with diabetes management. Managing my diabetes plus Tucker’s can take a lot out of a person. But I think the diagnosis (and the acceptance of it) was easier for Tucker because he has other people in his family already living with T1D. He is growing up where diabetes is normal; checking blood sugars and taking shots were things he had already seen performed. Now, we do some care tasks together, such as checking blood sugars before meals and bolusing. We do carbohydrate counting together — and even the members of our family without type 1 (his brother and stepdad) get into figuring out the number of carbs on the plate!”

What surprised you the most after your child’s diagnosis?

“The guilt that I felt initially really threw me for a loop. I always assumed I would be fine. I knew what I was doing. But that emotion was strong and still comes up if I miscalculate a dose or sleep through an alarm to check his blood sugar. It’s different when you’re caring for someone other than yourself.”

 

Keary & Zola

California

Keary and Zola

Keary was diagnosed with type 1 diabetes in 2015 at the age of 26. The timing couldn’t have been worse. “I remember waking up from a coma in the ICU to find out I had been diagnosed with diabetes, and to be honest, it was absolutely devastating. My husband, Justin, was 9,000 miles away in Uganda with our son, Oliver, who we were in the process of adopting and had yet to be able to bring home, because we still needed his visa,” she describes. Keary was released from the hospital and returned home to start practicing her new diabetes care routine. Justin and Oliver remained in Uganda awaiting their visa provisions.

Keary leaned on her faith to get through this time. “I wondered how God would ever redeem this, or how he could possibly use my diagnosis for a greater purpose. I believed that He would, I just couldn’t even begin to picture how.” Then something really unexpected happened. “Two and a half months after my diagnosis, we got a message from a friend in Uganda about a little girl who had just been diagnosed with type 1 right in the town where Justin and Ollie were. And she needed a foster family, someone who understood how to manage the disease.” Keary and her husband didn’t question for a second what they knew they were being called to do. “As soon as I heard those words, before I could even get to the end of the message, I knew in my heart that this little girl was my daughter.” Two weeks later, Keary was a on a plane to Uganda. Not only was she reunited with her husband and son, but she met Zola, who indeed became Keary and Justin’s daughter. (They now chronicle their mother-daughter adventures with T1D at Facebook.com/type1brave.)

What’s it like raising a child with the same condition?

“I love that Zola isn’t alone in her daily battle and that she has someone to do it with. We test our blood sugar together, we count carbs together, and we take insulin together. I know everything her body goes through, and it’s a privilege to carry that weight with her so that she’s not alone in that. It’s a comfort for her knowing that her mama goes through the same things she does every day. And it’s been really cool to see how something like an ugly disease has created such a special bond between us.”

What’s most challenging about you both having diabetes?

“How much this disease changes the way I think. I can no longer run out the door with just a wallet in my hand, but rather I carry a backpack for our test kits, insulin, on-the-go snacks, emergency treatment for severe lows, phones that are connected to a continuous glucose monitor [CGM], backup supplies, and things to treat low blood sugar. So much thought goes into leaving the house to make sure we’re not missing anything, because forgetting one of those things could be detrimental to us.”

What surprised you the most after your child’s diagnosis?

“Zola’s bravery is unbelievable. Less than six months into her diagnosis, at the age of 6, barely speaking English and never having seen another kid with type 1 like herself, she was doing all her own insulin shots without even so much as a flinch. And she was testing her own blood sugar long before that. Six years old and she’s poking herself with a shot or a lancing device sometimes upwards of 20 times a day. This girl is fierce, and she doesn’t complain or whine about it. She’s still practically a baby, and she’s grabbing diabetes by the horns and telling it who’s boss.

 

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.

Related topics:
What Parents of Multiple Kids With Diabetes Know

How to Meet Other T1D Moms (Without Following a Trail of Test Strips)
In the Spotlight: When a Sibling Has Type 1

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