Once upon a time…
Isn’t that how all the good stories start? At least that’s what they say. We have a great story, with some sprinkles of hard times, like most. We are lucky and blessed. In most cases, the word “we” in the story is self-explanatory. However, in our family’s story, “we” has a much larger and deeper meaning.
First, it’s most important to introduce you to Rush. He’s 5. Well, “five and a half,” if you ask him. Rush was born in April 2012, and our lives have been a whirlwind since. He arrived two weeks early. Despite my type-A personality and my use of Pinterest baby checklists, I was not ready. Not ready for the amount of love I would feel when I saw his face, and not ready for the amount of sleep I would lose at night. Nevertheless, there he was.
Now, almost six years later, here we are. In a completely different place in our lives. We were hit with a major curveball in 2016. Everything is okay until it’s not, right? We saw several changes in our Rusher Man. Lack of sleep, energy, and excessive thirst, which resulted in bed-wetting at the age of 4. (He hadn’t wet the bed in years.) He became thin and cranky, which was not typical whatsoever for our sweet, big-hearted boy. One day, at the doctor with my daughter, I decided to double-check and make sure there were no major issues with Rush. After all, he had started preschool, organized sports, and we had moved into a new home, so that must be the reason for the changes. Except it wasn’t. #parentingfail. How did we not notice?
No one tells you about the hard times. They lace those up and cover them with the fluff of pillow fights and trophies and snuggles. No one tells you how to cope when your child is diagnosed with something that will last a lifetime. Could it have been worse than severe diabetic ketoacidosis, the PICU, and lifelong type 1 diabetes? Sure. But at the time, it definitely didn’t feel like it. We were devastated. Those first few days were a blur. Diabetes educators were showing us how to inject our son with insulin and check glucose levels and calculate carbs and dosages with basic math that seemed, at the time, like calculus. They sent us home with two paper grocery bags full of supplies, and that was it. With a new baby (Rush’s sister) and new jobs and a new home, how would we ever keep up with the binders full of literature that would ensure our son stayed healthy each day?
We were overwhelmed and scared, but our boy was tough, and we knew we had to make it work. And we have!
Not only does Rush have his mom and dad, but both of us are remarried and have wonderful spouses who are also parents to Rush. Those people are the we. The four of us are a co-parenting unit. Each and every decision we make is done together in the best interests of Rush. We consult one another on schedules, endocrinology and dentist appointments, and haircuts. We coordinate summer vacations and sibling arrivals, and ensure he is able to do all the things kids his age do. (His friends try to keep him in check with what he eats!) We put him first. He is the reason we function as a collective group.
Co-parenting is not always easy. There are those days, just like with any family setup, that we miscommunicate or disagree. (Who agrees constantly… do those people even exist?!) We don’t have it all together, even with four Google calendars, paper schedules, email, and a group text. We forget to send his 24-hour insulin pen back and forth to each other’s homes. (We do this to save money on supplies — if your child has diabetes, you know insurance can be crazy stingy with those.) We have messed up his insulin units before. I cringe when I think about it. We have dropped his pen (twice), which resulted in a hairline crack in the vial, which led to two days full of excessive highs before we found the problem. See folks, we mess up. Daily.
But… we’ve developed a system that works for us. It allows us to communicate via group text with one another each day about his glucose levels, eating habits, and mood. Each household has a miniature duffel bag that we carry at all times holding insulin, needles, snacks, and emergency treatment for severe lows. When he goes to his other home, we send pictures of the log so both households are in the know. We sit together at his games, take pictures together at his school concerts, and talk with him when he makes bad decisions, as 5-year-olds often do. We collectively meet for his health plan at school and make adjustments by consulting one another. We split medical bills, share supplies, and take turns ordering prescriptions and CGM (continuous glucose monitor) supplies. We attend field trips to ensure his medical needs are met. We laugh with him, ask about his friends, and share tips and tricks with one another to ensure he works on his sight words and math games at home to succeed academically. (Between the four of us, he is parented by a high school teacher, elementary school academic dean, elementary school teacher, and assistant director of pupil personnel — so he has no choice!)
We do all of this for Rush. Is it always easy? No. Are we tired, and stressed sometimes? Absolutely. But our main goal is for Rush to live his life with T1D successfully and in an aware, healthy manner. He still eats what other kids eat, within reason. He goes to birthday parties and eats cake, jumps on trampolines, and plays sports. And to him, he feels lucky to live in a world where he may have diabetes, but he also has a huge family who supports him, loves him, and would do whatever it takes to help him succeed. We continue to tweak our methods daily, but the point is we work together and keep communication lines open no matter what.
The we is what makes this all work.
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.