My 9 year old daughter was diagnosed with type 1 diabetes a few months before her 2nd birthday. He uses a continuous glucose monitor (CGM) to see his blood glucose levels and the pump that regulates insulin. Before this amazing medical technology, we pricked his fingers up to 10 times a day and administered insulin injections at almost the same rate—ouch!
There are many parents out there with children with special medical needs. A mother I know had to give her autistic son an enema every day because of digestive problems. Other mothers have children with very special dietary restrictions who need a special formula that is given via a G-tube. There are all kinds of different medical needs, but they all have some things in common.
Here’s what I learned as a parent of a child with medical needs:
Insurance companies should be more compassionate.
If I had a dollar for every hour, I’ve been calling for the past seven years arguing with someone at my insurance company that, yes, my diabetic daughter actually is. To do need insulin this month, I will have enough money to pay for the insulin. Okay, maybe that’s a little too much, but it doesn’t feel like it.
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I understand that insurance companies need to make money, so they have to make sure each item is really needed, but still . . . As a parent, it’s frustrating and humbling to have to plead with company every time he needs something to help him stay alive.
Doctors and pharmacists are amazing.
My daughter’s doctors have done everything they can to convince our insurance company that we actually need what we need. Our local pharmacists have worked hard to help us get the supplies we need. They gave me tips on solutions to get the diabetes supplies we needed. Thank God for loving healthcare professionals!
It’s up to me to make the disease less terrible.
My diabetic son is number four out of six, so I know very little about child psychology. I’m constantly waddling between, “I know it stinks, but you have to put up with it,” and “Hey, you can eat M&M now, how cool is that?” There are times when she’s not allowed to have something that other kids have (like cupcakes at a birthday party or a juice box at lunch) because her blood sugar is too high, and she has to wait for it to stabilize. . I sat with him in his sad feelings and made the most of it.
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Whenever we see someone with CGM or insulin pumps in public, we say hello and chat about diabetes. this has been so helped him see children and adults dealing with the same illnesses that he had. They offered advice and support as well as hope for me as a parent. Then I can say, “Do you remember the guy we saw in the pool with the pump? I bet it stinks for him to wait to eat pizza too. ”
Children are tough and brave.
Sometimes my daughter gets sad because she has to wait or miss candy. But sometimes, he understands and agrees with it. He got used to me reading food packages and counting carbs. He didn’t budge when I stuck his medical device to his skin (which was attached using a spring-loaded device and a long needle!)
Our children with medical problems deserve a lot of credit for how flexible they are. There was a lot to deal with as a child. They don’t need our sympathy or pampering, but they do need our understanding.
Humor helps us deal with it.
Humor helps us deal with difficult things. Joking about something challenging makes it lose its power over us, so our family has a lot of diabetes jokes. He has a t-shirt that says “proud owner of a useless pancreas,” which has sparked several conversations with adults who have diabetes or know people who have diabetes.
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When we non-ironically say, “Honey, you should eat your cake before dinner” (because of low blood sugar), how can we no laugh at the absurdity of this disease? It helps to lighten and embrace the funny part of our child’s health challenges. Because if we don’t laugh, we might cry, and who has time for that?
There is power in relationships.
When my daughter was little, we joined a local group for children with diabetes where she could meet other children who also had diabetes. You can find groups like these on Facebook or ask your specialist if there is a local support group for your child’s health concerns. Meeting other people dealing with the same problem is so help in normalizing your child’s feelings and seeking support.
I have been in relationships with parents of children with significant health problems. We don’t have the same diagnosis, but we all face problems that ordinary parents don’t have. It’s great to be able to discuss our unique challenges and know that even if other people don’t know exactly what I’m up against, they can empathize. What our world needs more today is empathy and compassion in large doses. Be a listening ear to someone, and you may find a new friend.