“What’s going to pull you through it more than anything is going to be your child.”
“God made Adalyn special. Our daughter says this to us often. Every detail — her sass, her kindness, her courage, her calling to be a farmer when she grows up — it’s what makes her who she is, and she wouldn’t change a single thing.
And that includes her Type 1 diabetes that she has managed for almost five years now.
For a while, especially early on when we were still trying to figure things out, I hated hearing her say that. When you see your baby, an extension of yourself, down and hurting and there’s nothing you can do, it’s the hardest thing in the world. Like any parent in our situation, if I could take her diagnosis away from her, I would. But I don’t have that power, at least not until the day a cure comes. Coming to terms with that, honestly, can be a struggle.
We definitely had our rough times where we couldn’t shake our negative thoughts. We thought about our first trip to the emergency room, when just a week before the doctor told us her unquenchable thirst was just because of the heat and a positive sign she was growing. We thought about how just two weeks after she got out of the emergency room, my wife Ashley had to go in for emergency back surgery, forcing me, Adalyn, and her sister Aubrey to take on this new way of life ourselves. We thought about how we were early on plagued by this constant fear that we needed to check her glucose almost every waking moment, before we really knew what we were doing, thinking if things were out of balance just a little bit our world could end. And we thought about one particularly scary incident on vacation where a stomach bug prevented her from getting down any food — a dangerous situation for anyone with Type 1 Diabetes.
I personally tried really hard to put on this tough guy façade, but if I’m being honest, I threw a bit of a pity party. I never told Ashley this, but one day after I put her and her and Aubrey down for a nap, I sat at the kitchen table and cried. It all just hit me at once. I knew that she was going to be affected by this for the rest of her life. When she walks down the aisle to graduate high school, she’s going to be dealing with this. When she’s hanging out with her friends in college, she’s going to be dealing with this. It’s even going to follow her down the aisle of her wedding one day. I couldn’t even imagine the thought of leaving her side for fear of losing her, of not being there to save her the day she needed me. It all just hit me like a truck, and for just a moment I felt alone.
But to anyone that may relate to this, who may be dealing with something similar, I promise you’re never alone. I know it’s easy to lock yourself in your room scared, but there are support systems out there. Of course, I have Ashely, who is always there to put my overreactions in check, and I have my two amazing daughters whose lives I am so thankful to be a part of, but the more you look for support, the more you find. Even just finding a stranger on the street with a CGM (continuous glucose monitor) is enough to remind you of the connections you have to those around you should you choose to see them.
Facebook, believe it or not, was an incredible resource for me. You can find medical suppliers and little tips and tricks there, but you’ll also find communities who will understand exactly what you are going through and will be there for you every step of your journey. Today, I actually check those Facebook groups regularly to offer advice where I can as my way of paying it forward. People just need to hear sometimes that it’s not the end of the world. Your child’s life — and your own — is going to be different from here on out, but it’s going to be okay.
Give Kids The World has been a support system in itself. Till the day I die I’m never going to forget Dennis, our greeter at the airport. The guy even got me excited. From the very first moment, it really felt like coming home. Adalyn mentioned to me the first night that they’re making us all feel like VIPs.
“You’re the VIP,” I told her. “We’re here with you.”
She even took the occasion today to crank out her Cinderella dress, Florida heat or no Florida heat. “No one else is probably going to be wearing dresses like this,” she said. “But…I don’t care!”
What’s going to pull you through it more than anything, though, is going to be your child. Sometimes in my desire to protect her, to keep her safe, I forget how deep Adalyn’s inner strength runs. Early on I wanted to micromanage everything, but from the very beginning she was driven by a desire to do things right. She wants to check her glucose levels when she needs to, she counts her carbs exactly like the doctors tell her to, and when things go wrong, she knows exactly how to get help. As this girl prancing around in a Cinderella dress at my feet becomes a woman right before my eyes, I know deep down that when the time comes to let go, she’s going to be fine. She’s going to grow up, and she’s going to live her own life.
I may not be able to change her diagnosis, but I don’t need to. It’s a part of her now, and she’s going to wear that hat. She’s going to be okay.”