6 lessons I’ve learned as a parent of a child with diabetes

This story was written by Autumn Knapp and originally appeared on The Mighty.

My 8-year-old daughter was diagnosed with type 1 diabetes a few months before her second birthday. Her diagnosis came after an E. coli infection took over her body and shut down several organs, including her pancreas. The other organs recovered, but Mr. Pancreas did not. (How lazy of him!)

In the first few years of her diagnosis, my daughter needed blood glucose checks via a finger prick about 10 times a day. Then, she got a continuous glucose monitor (CGM) that attaches to her arms or tummy, so now we can watch her blood sugar levels in real time—which is amazing technology. After we figure out her blood sugar, we dose her for her next meal by giving her a shot of insulin. In the last few weeks, we have been test-driving a new insulin pump. While that eliminates the need for shots, this is still another device we need to attach every three days. But it’s so much more convenient than shots 10 times a day!

There are many parents out there with children with medical conditions. One mom I know has to give her autistic son enemas every day because of digestive issues. Another mom has a child with highly specialized dietary restrictions, and the child needs a formula given through a G-tube. These children have all kinds of different medical needs, but as their parents, we may have many things in common.

Here’s what I’ve learned as a parent of a child with a medical condition.

1. Insurance companies can really suck for parents of children with medical conditions.

If I had a dollar for every hour in the past seven years that I was on the phone, arguing with someone at my insurance company that my diabetic daughter actually does need insulin, I would have enough money to pay for the insulin. OK, maybe that’s exaggerating a bit, but it doesn’t feel like it’s that much of an exaggeration.

I understand that insurance companies need to make money, so they have to ensure that each and every item for which they pay is actually needed, but as a parent, it is frustrating and demeaning to have to plead with the company each time my daughter needs something that helps keep her alive. For instance, I recently had to argue with our insurance company over the size of the syringe that my daughter uses. They would only pay for an order of syringes that were too large for her—not the order that came in my daughter’s syringe size. Seriously, insurance companies… why?

2. Doctors and pharmacists often rock as a parent of a child with a health condition.

My daughter has had several diabetes specialists—like pediatric endocrinologists—over the past seven years since her diabetes diagnosis. Each of them has been amazing. They have done everything they can to convince our insurance company that we actually need my daughter’s medical necessities. Our local pharmacists have also gone above and beyond to help us get our necessary supplies. They give me tips and workarounds to get the diabetes supplies we need. Thank God for compassionate healthcare professionals!

3. It’s up to me as a parent to make diabetes not suck for my child.

My child with diabetes is the fourth of six children, so I know a bit about raising resilient children. We constantly waltz the line between “I know this sucks, but you have to put up with it anyway” and “Hey, you get to eat M&Ms right now—how cool is that?” Occasionally, my daughter cannot have something that another child is having—like a cupcake at a birthday party or a juice box at lunch—because her blood sugar is too high and we need to wait for it to stabilize. In these moments, we sit with her in her sad feelings and try to make the best of the situation.

Whenever we see someone with a CGM or insulin pump in public, we say “hi” and chat about diabetes. This has been so helpful for my daughter to see both children and adults dealing with the same condition she does. They often offer advice and support and also give me hope. Later, I can say, “Do you remember the man we saw at the pool with a pump? I bet it stinks for him to wait to eat pizza too.” When my daughter was younger, we joined a local group for diabetic kids where my daughter could meet other kids who also had diabetes. You can find groups like this on Facebook or ask your medical specialist if there are local support groups for your child’s health condition. Meeting other people who are dealing with the same challenges can be really helpful in normalizing your child’s feelings and finding support.

4. Kids with medical conditions are often resilient.

Sometimes my daughter does get sad about having to wait for or miss out on sweets, but other times, she understands and is OK with it. She is used to me reading food labels. She was used to getting up to six insulin injections a day—and she wouldn’t flinch when I gave her a shot. She also doesn’t flinch when I attach her medical devices to her skin (which are attached using spring devices and long needles!).

Our kids with health conditions deserve lots of praise for how flexible they have to be. Life with a medical condition can be a lot to deal with as a kid. They don’t need our indulgence, but they do need our understanding.

5. Humor can help us cope as parents of children with health conditions.

Humor can help us deal with hard things. Joking about something challenging may make it lose its power over us—which is why our family has lots of diabetes jokes. My daughter has a plush toy of the E. coli microbe that infected her, and she’s even taken it to school on show-and-tell day to explain to her classmates all about the infection that made her sick in the first place. She even used to have a T-shirt that said “Proud owner of a useless pancreas,” which sparked a few conversations with adults who have diabetes or know people who were diabetic.

When we unironically say, “Honey, you have to eat your cookie before dinner,” how can we not laugh at the absurdity of this condition? It can help to lighten up and embrace the funny parts of our children’s health challenges. If we don’t laugh, we may cry, and who has time for that?

6. There is power in relationships with other parents of children with medical conditions.

My daughter used to attend a playgroup for kids with type 1 diabetes. That group no longer meets because of COVID-19 and people moving away, but because of it, I have created new relationships with parents of children with significant health conditions. We don’t have the same diagnoses, but we do all face challenges that parents of children without health conditions may not.

It is so comforting to be able to look at what I’ve learned as the parent of a child with a medical condition and know that even if other parents with children with health conditions don’t know exactly what I’m dealing with, they can usually empathize. What our world needs more of right now is empathy and compassion. Be someone’s listening ear—you may find a new friend.

This story was written by Autumn Knapp and originally appeared on The Mighty.