Where is My Village? A Story of the T1D Parent

My daughter came home from school and told us all about a play they had done in her kindergarten class. “Have you heard of The Little Red Hen?” she asked. You know the story… the Little Red Hen wants to bake a loaf of bread. But no one will help her make it. As my daughter explained the play in enormous detail, I couldn’t help but see a parallel between the story and raising a child with type 1 diabetes.

I would like to preface this by saying this is not necessarily my story. It is not necessarily the story of every T1D family. I am personally dealing with some of the following scenarios. Some are from other parents I’ve talked to. Many T1 families are dealing with much worse.

If you have a T1 child and haven’t run into any of this, then I’m happy for you. Keep on keeping on.

But I imagine most of the people who read this will relate on some level…

The Story of the T1D parent (inspired by the Little Red Hen)

The T1D parent was caught off guard with the diagnosis of her child. Nevertheless, she was determined to raise her child in a safe environment, hoping he would become a successful, happy, healthy adult.

Little did she know, the T1D parent was going to face many obstacles to complete her task.

First, the T1D parent needed to care for her child’s diabetes.

This proved to be somewhat difficult. You see, a person with type 1 diabetes needs insulin and several other supplies on a continual basis in order to live. These supplies are not cheap. In many places, the insulin alone rivals a mortgage payment.

Most people don’t have an extra mortgage payment just lying around every month. So, the T1D parent had to see what help was available.

But when the T1D parent asked around to see who could help pay for her child’s life-saving supplies, the response was… disappointing.

“Not I,” said insurance company #1. “We don’t believe you need these supplies. Have you tried losing weight? The test strips and insulin are too expensive for us. Have you tried doing less blood sugar tests or using less insulin instead?”

“Not I,” said insurance company #2. “We know you need these supplies, but we believe that since your child’s life depends on it, you’ll find another way to pay for it.”

“Not I,” said insurance company #3. “Well, we’ll say that we cover the supplies, but then we’ll charge you a deductible of $2000/month. Sooo… we’re not really helping.”

So, since no one can afford thousands of dollars a month on medical supplies, the T1D parent goes through months of appeals and fights. She researches instead of sleeping and is on the phone for hours and hours to somehow get coverage… hopefully.

At the same time, the T1D parent has to make sure her child is safe while he’s away from her.

So, the T1D parent has a meeting with the child’s school. And another with the daycare. More with coaches and music teachers, and everyone else the child will be alone with for any length of time. She asks them who will keep her child safe while he is in their care.

“Not I,” said the school (and daycare and coaches). “We don’t have any medical training and we don’t want to get sued if something goes wrong. How about you just come in multiple times a day and do all of the finger pokes and injections yourself? You don’t really need a job do you?”

Unfortunately, the T1D parent does need a job… Remember? She has to pay for the supplies. So, she goes to the diabetes team to ask who will keep her child safe.

“Not I,” says the diabetes clinic. “We don’t know how the schools work. Besides, it would set a precedent. We can’t help EVERY T1D child in the area. You should just push your child towards independence now. 5 year olds can give themselves injections, add up carbs on lunch items, and make dosing decisions that would confuse many adults… can’t they? Oh fine. Maybe you should ask the community nurses to help.”

“Not I,” says the community nurses. “We will train the school, but not the way you do things at home. With our limited knowledge of how T1D works, we will create a care plan that doesn’t work and may even be unsafe for many people. But if you want anything different, we won’t work with you. We are influential, so if the school finds out we won’t work with you, you’ll be forced to homeschool your child.”

So, the T1D parent fights for YEARS to get things changed. By the time anything is accomplished, she’s exhausted and her child has aged out of needing the help that is finally in place. But other children will benefit from the work she did… hopefully.

With all of this pushing and fighting, the T1D parent needs a nap once in a while.

So she asks friends and family who will learn the T1D basics so she can have a babysitter for a couple of hours.

“Not I,” says the friend. “I’m not comfortable with needles. I don’t know how you can give your child injections every day. I wouldn’t be able to do that if it were my child.”

“Not I,” says the family member. “I’ve been at your house overnight. Those alarms are sooo annoying! I didn’t get any sleep that night. You should really stop getting up every night to check your child’s blood sugar. How important could it be? You need your sleep and so does your child. You’re making diabetes a bigger deal than it has to be.”

“Not I,” says the neighbor. “You wouldn’t have this problem in the first place if you had breastfed (or not breastfed), vaccinated (or not vaccinated), fed them cinnamon and okra every morning, used the right essential oils…” the list goes on… “I don’t have time to deal with your child. You brought this on yourself. Besides, I don’t want my children to catch diabetes from your child.”

So, instead of a nap, the T1D parent gets to educate everyone in her life about type 1 diabetes. She posts and shares and talks about T1D until she’s blue in the face. She works really hard to educate people so that they will understand what T1D really is… hopefully.

Now the T1D parent has to complete her task (raising a child in a safe environment while turning him into a happy, healthy, successful adult) on her own… all while trying to convince her village to be a village.

Because T1D is not a simple disease. It is something that takes a lot of time and energy. It is affected by food, activity, stress, hormones, weather, and so much more. And it is the parent’s job to consider all of these factors in order to make dosing decisions multiple times every day.

Because T1D is life-threatening. Without insulin, a person with T1D will die. Not enough insulin and they can die. Too much insulin… yes, they can also die from that.

So yes, T1D parents worry about their child when they are at school. Imagine, just for a moment, being scared of sending your child to school and not having them return home. Every day.

And yes, T1D parents check their children in the middle of the night. Imagine, putting your child to bed and waking up to them having a seizure, or in a coma. Or they don’t wake up at all. Isn’t it worth losing a little sleep?

So the T1D parent will educate everyone she can.

She will teach people that T1D is not caused by eating too much. It is not contagious. It has no cure. It is autoimmune and can happen to anyone, at any age.

That her child can eat that cupcake. Or join that soccer team. Or go to that birthday party. A person with T1D can do what everyone else can do. They just have to prepare more.

That it’s not about being “better than having cancer”. Yes, other people have things going on in their lives that may be considered worse. But that doesn’t ease the stress and pain that her family is feeling. Comparisons like this are simply dismissive of people’s feelings and show that the person making the comparison doesn’t care enough to just listen.

That it’s not the same as your great aunt’s diabetes. And no, it’s not appropriate to discuss the amputations, organ failure, or even death of your diabetic loved one in front of her child.

But most importantly…

She will teach everyone how brave and strong she is. How determined she is. She is doing the job of an organ. She is acting as her child’s pancreas while most people don’t even know what the pancreas does.

And she is teaching her child to do the same. An amazing little person who endures sometimes dozens of various pokes every day without batting an eye. A child who thinks it’s funny to lick the blood off their finger and gross everyone out.

A child who knows the carb counts of their favorite foods by heart, when most of their peers don’t even know what a carb is. Who can calculate a dose, draw up a syringe, and inject themselves when they are about to have dinner.

The T1D parent is doing it all. She’s raising that child and they’re doing fine. Somehow, they’re dealing with all of this and succeeding.

So don’t feel sorry for them. That’s not what they need.

But if you could take some time to learn and maybe babysit her kid one day…

She still really needs a nap.

Happy Carb Counting and T1D Parenting!

~ Leah

Do you feel like “The T1D Parent” in this story? Have you found people in your life who are open to learning about diabetes and help you out? Leave a comment and tell us about it. Don’t forget to head over to the Carb Counting Mama Facebook page and “like” it!!