As part of a new series on the challenges of parenting, I’m thrilled to bring a guest post to Foodlets today, written by Leigh Fickling. AKA, the human pancreas. Here is her story.
Almost five years ago, I joined a club that I never signed up for.
A club I had no interest in and had very little knowledge of in the first place. A club that forces you to do math problems in your head all day and all night. That causes you to become an expert in ordering supplies and carefully rationing those supplies until you can get your next order. This club changes its rules for membership almost every day. It beeps with alerts and requires a steady stream of batteries and charging cords. There’s no vacation, no age restrictions yet it has worldwide membership. This club simultaneously creates feelings of loneliness and togetherness. It makes you cry and ache with such profound sadness that you aren’t sure that you can make it another day.
But, you have to. You have to do what you think that you can’t do.
In 2013, my three year old daughter was diagnosed with Type 1 diabetes and our lives were forever changed. I had to learn more about diabetes and found out that it can cause nerve pain, but I learned about neuropathy treatments that can help with the pain. I joined the club that no one wants to join…parents of children with diabetes.
Before I go on, let’s get some things straight.
I am not a medical professional and I don’t play one on TV. I am a higher education administrator and spend most of my days helping people with disabilities access employment or educational experiences both in and out of the college classroom.
I became a first time mom at the age of 35 to spontaneous boy/girl twins. I have a dog that we affectionately call the “big sausage of love.” I like naps. I like monograms, writing and reading. I like coffee and wine and carbs. I like order and what is predictable.
Here are some things I don’t like: Math. Mean people. Hot dogs. Mayonnaise. Hot dogs with mayonnaise. I don’t like to see my kids hurt. I don’t like to see people suffering. I don’t like discrimination or when able-bodied people park in accessible parking spaces. I don’t like it when people are late. I don’t like the unknown.
You see, diabetes is everything that I am not. Literally and figuratively.
After spending three days in the hospital during my daughter’s diagnosis, it became very clear to me that my mom-mission was changing. I was about to become a carb counting, insulin giving, site changing, finger poking warrior.
I was going to be forced to do math. Math around the clock. Calculating insulin doses. Calculating sliding scales to bring a high blood sugar back into range. Calculating the amount of sugar needed to bring a low blood sugar back into range. Every day of my life from that day forward was going to be unpredictable and unknown.
I was about to become my kid’s pancreas.
My first “mommy pancreas” challenge was in the hospital during diagnosis. The nurses said that it would be fun to get a little red wagon and take our daughter down to the hospital cafeteria. “Go get some fresh air! Go look at the fish tanks! Get out of the room!” they said. “It’ll be fun!”
So, off we went on our adventure.
First stop, Starbucks! Fancy coffee drinks for the grown-ups. A chocolate milk box and a piece of delicious lemon loaf for the kid.
We enjoyed our time out of the room and came back fully caffeinated, with a new attitude. We were ready to tackle what we now call the “Big D.” It was fun, just like the nurses said!
Until about an hour later when the nurses came back to the room to check her blood sugar. It was suddenly over 500 mg/dl. What happened, you may ask? I’ll tell you what happened. The mommy pancreas failed her first test. Chocolate milk box + lemon loaf = carbapalooza.
We didn’t realize what would happen when we loaded her tiny 27 pound body with so many carbs and sugars. A quick injection of insulin leveled things off and we drifted back down to our “target range.” Crisis averted.
Mommy pancreas needed more classes on nutrition. More classes on performing blood sugar checks before eating. More classes on trying to administer insulin before you eat so that the insulin can get a head start before the food starts to digest.
I was afraid that I almost killed my kid with a chocolate milk box.
There was no way that I could become a pancreas. No way.
And, then I remembered that phrase. Do what you think you can’t.
Do it without sleep. In the middle of the night. Through tears. When you are alone. When you are in the middle of a crowded bus at Disney World. At the beach. In the classroom. At the gas station. In the pool. Do it at camp. Do it on a horse. Do it during the biggest presentation of your professional career. Just do it.
Because, if you don’t, she won’t be here.
She’s depending on you to keep her alive.
She needs you to do the math. She needs you to order those supplies. She needs you to make decisions about when she can have a chocolate milk box and when she needs to have some flavored water, instead. She needs you to change her pump site because she’s not quite brave enough yet to pull the plunger herself. She needs you to answer those beeping alarms in the middle of the night because she needs her sleep. She needs you to help her find the words to explain all of her devices to her new friends at school. She needs you to say yes to the playdates so that she can be a normal kid. She needs you to read and research and stay committed to finding the best possible technology to make her life move seamlessly forward without interruption.
She needs you to be her pancreas. Because hers just can’t.
We are five years in. We’ve had our highs and our lows. We’ve had our share of hospital admissions and doctor’s appointments. We’ve moved from injections to pumps to injections to pumps. I’ve built a DIY closed-loop “pancreas” from instructions that I found on the internet. We’ve learned to make smarter decisions about food choices. We learned that a chocolate milk box really won’t kill your kid. We’ve attended diabetes camps. We’ve made friends for life. We’ve educated. We’ve advocated. We have found a tribe of people who support us and love us. We didn’t want to join this club. But, now that we are here, we are committed to making the best of it every single day.
Diabetes changes the way that we think about food. We are constantly counting carbohydrates and making decisions about the amount of insulin needed to balance out the food that we take in during each meal. Our daughter is a “bacontarian.” She chooses to not eat meat, except bacon. Who can really blame her? Bacon is life.
When our daughter started kindergarten three years ago, we quickly learned about a new friend in her classroom. She was spunky and bright. She had cute clothes and was kind to others. She liked to read. She liked to do art. She had the best lunches in an organized Planet Box lunchbox. She didn’t seem to mind the alarms, the juice boxes, the finger pokes. She didn’t seem phased at all by the Big D. She embraced our daughter and allowed her to become her friend, despite diabetes.
Friends. Despite diabetes.
Our daughter’s new best friend was Phoebe and she was a FOODLET! We’ve leaned on Foodlets over the years for ideas to sneak veggies and protein into our daughter’s preferred carb-loaded diet. The simple recipes and easy to follow instructions have really brought us together in the kitchen. My daughter enjoys more variety in her lunches and in her diet thanks to our little best friend. Our daughter has been willing to try more food items, like hummus, because she sees other kids in the classroom eating different foods and she’s willing to give it a try.
One of her favorite meals of all time is what we like to call “Phoebe’s Mom’s Magical Macaroni and Cheese.” It is magical. Truly.
Not all days are rainbows and unicorns. Some days, it’s hard to be a pancreas. Some days, it’s hard to be an eight year old. Some days, I am pretty sure that I can’t go on and I just can’t do it anymore. Then, I remember that phrase. Do what you think you can’t.
Because, she needs you.
We love having this friend over every chance we get! Here’s her favorite mac & cheese, the one she named “magical”, plus the kale salad that turned her into a believer. (It’s really all about the dressing.)