Living with a chronic illness can be very lonely. On the rare occasion that I spot someone in public wearing an insulin pump or a CGM, I rush over and introduce myself. The excitement of identifying someone else with type 1 diabetes (T1D) reminds me that I’m not alone, which is comforting. However, when COVID-19 forced the entire country into isolation, it was harder to find those people. I wondered if other moms (or dads) with T1D felt guilty about saying no to their kids when it came to social activities and watching their children’s extracurricular lives disappear. Thankfully, the online diabetes community is very active, and when I wanted to know how other T1D women with children were feeling about isolating with their families, all I had to do was ask.
Nicole Johnson, DPh, MPH, MA, and Miss America 1999, has always been close to her teenage daughter but says the last year has made them even closer. Johnson’s daughter describes 2020 as “the best year of her life.”
“My daughter identified who she is and wants to be. She understood the value of health and how to look out for family,” says Johnson. “She made decisions to prioritize her mom and grandparents over other things — which gave her joy in ways she can’t fully explain. She also realized that she doesn’t have to fear — she has to be smart and persevere. It is beautiful to watch. I love her spirit and resolve so much. Her commitment to others has grown deeper. I will not be surprised to see her in a role that uses that tenderness in the future.”
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Johnson and her daughter discovered new ways to spend their time during the pandemic. “We road-tripped, we painted, we explored nature trails, we hiked, we used our cameras, we went for walks galore. It was a wonderful gift,” she says.
“The moments we have with our children are short and time-limited. I now choose to wait for my daughter, drive her places, not travel for business, and I shut my computer off at the end of the day and focus on family. On the weekends, we have learned to love little things — walks, playing with dogs, singing and dancing, laughing at funny videos. These little things have shaped our lives in positive ways. If COVID hadn’t happened, we would still be running frenetically. I am thankful we have paused and reassessed,” says Johnson.
Rebecca Furuta, a pro cyclist with Team Novo Nordisk and a T1D mom of two teenagers, knows that parenting was difficult for families across the country and the unique landscape of her own family made it more difficult still.
“My fifteen-year-old son has autism. Quarantines and school closures not only meant the loss of the structures and routines that benefit his emotional health, it also meant the loss of critical resources,” says Furuta. “He had relied on a dozen or so helpers to get him through each day and provide the support network that did everything from teaching him how to grip his pencil and zip his coat to assisting him with social skills and language development, keeping him on-task and handling full-blown meltdowns. Absent that team of experts, my husband and I were thrust into the roles of teacher and caregiver, speech therapist and behavioral expert, and we had to manage our respective full-time jobs from home. Our thirteen-year-old daughter was struggling to manage her schoolwork, too. She missed her social contacts and found online learning very difficult. With all of us living every moment in our tiny, 700 square foot home, we were climbing the walls. The kids were dysregulated and anxious, and I was exhausted and overwhelmed.”
Adjusting expectations played a big part in getting through the pandemic for the Furuta family.
“I decided that I was going to prioritize the physical and emotional health of us all, and I wasn’t going to allow the stressors of the situation to erode our familial relationships,” she says. “We found ways to keep us all healthy and sane, and to hold up whoever needed it in the moment.”
Much of the fear and anxiety for children during the pandemic resulted from the unknown and the feeling of being powerless. Furuta says reminding her children that wearing their masks, washing their hands, and isolating were actions they could take to proactively stay safe. “I told them that the things they didn’t like — such as staying home and wearing masks — were small steps that gave us control over our health and kept others safe, too. Feeling like they could exercise specific behaviors to stay healthy really helped quell some of the anxieties they were experiencing.”
Laura Ott, a T1D mom who has two children ages 11 and 13, says the past year made everything a little scarier for her family.
“I tried to balance making sure they understood the seriousness of the pandemic without scaring them about how bad it was or how dangerous it was for me. I needed for them to understand why we had to be so careful — even when their friends were having sleepovers, and we stayed home together. There were times when they thought I was being too careful. We had a lot of very frank conversations, and many times I wondered if I was burdening them with grown-up problems. But I have been amazed at their maturity, common sense, and compassion throughout the last year,” says Ott.
“I don’t think I realized how much they knew on their own — through the internet and talking to their friends. We took longs walks nearly every day together since last March and had amazing conversations about not just the pandemic but social justice, racism, life, being a teenager, travel, modern medicine, world peace, etc. Those conversations may not have happened if it weren’t for the lockdown.”
Ott says being honest with her kids and allowing them to voice their opinions was really helpful. “Having more time with them has definitely been an unexpected joy for me.”
Casey Kniffin, a T1D mom with two kids who are 5 and 7, lives in Florida. She says the past year has forced a more open and honest relationship with her kids.
“Both of my kids fully understood that what we were doing was to keep everyone safe. That being said, of course they were heartbroken to not finish school with their favorite teacher, they missed grandparents and cousins immensely, and the loss they felt when our lives changed was real.”
The pandemic has been lonely for Kniffin because they weren’t able to spend time with many of their friends who were not taking similar precautions. The upside of the pandemic has been letting go of expectations of what her children “need” to be doing.
“I think in a lot of ways they regained their childhood this past year. They spend so much time in imaginative play now and it is really beautiful to see them grow together.”
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