First Time Moments With a New Diagnosis
About 12 years ago, I started blogging fairly regularly. It was during my pregnancy with my first daughter when I was discovering my inconvenient propensity for pre-natal anxiety (and later, post-natal depression). Writing is how I not only processed my experience, but how I connected with others who deeply understood my struggles. It’s how I found my tribe, and how I learned about the beauty of authentic connection fostered only through vulnerability. My blog is what got me through the loneliest of times, because it gave me the space to match my feelings to words, and this allowed me the gift of surrender.
With honesty typically comes judgment. I didn’t understand it then. It just hurt. The comments people would make about my posts would suggest that I’m just too much. Too feely. Too emotional. Too contemplative. Too sensitive. I know now that that’s OK. It has been through other people’s writings that I have found comfort. And it is for that same reason, despite the opinions of others, that I vow to share my own writing.
Here’s the thing about the personal stories of others - they tug at the threads of our humanity, illustrating for us what could be in our own lives. Or maybe they show us things we’ve narrowly escaped. Or they prove to us that we aren’t truly alone. At worst, other people’s stories haunt us with their pain. At best, they encourage us to keep going. Either way, they lead us to compassion if we’re simply willing to see ourselves in the shoes of each storyteller (and we are all storytellers).
I suppose that I’m sharing this background because as I sit down to write a bit more about our most recent experience with Type 1 Diabetes, I am profoundly aware that T1D isn’t the worst thing that could happen to a child. I'm a little insecure that maybe I'm being too feely about it all. As I write this, there are parents suffering horrific loss, and unimaginable diagnoses. There are children facing the burden of illness beyond treatment. There are parents pounding their fists at the injustice of their hurting child. My heart aches over such stories. As mothers, we feel them all. As Glennon Doyle says, “There’s no such thing as other people’s children.”
In the grand scheme of things, and while T1D has no cure, it can be managed (albeit very meticulously). In that way, this makes our "worst news ever” moment a bit more digestible. I remain ever grateful that our introduction to T1D was a gentle one. We still don’t know the darkness of this disease, though acknowledging that our daughter’s life depends on insulin is seriously intense. Hard is hard no matter what though, and I write about our experience because it’s the journey we are walking, and because I want nothing more than for my warrior daughter to grow up in a world that extends her compassion for the battle she fights every.single.day. I share because just 6 months ago, I was scouring the internet for stories from other parents which would convince me that my own daughter would be ok. If I can be that beacon for just one person, than it will be worth the insecurity of sharing my heart.
If you’re one of those parents searching for a promise that it will be OK, this post will ultimately confirm just that. Despite the whirlwind of emotions, the stifling anxiety, and my heavy mama-heart - our daughter was, and is, thriving.
I recognize that I am still in the midst of processing many layers of emotion, which is precisely why I am sitting down to write. Thank you for being in these moments with me as we are just returning from a week in Maui. Our daughters and I had never been. My husband hadn’t been since he was a kid. Like every other family enduring these past 15 months of a global pandemic, ours was hit hard. This trip felt like an undeserved luxury, and the gift of it is not lost on us. It was every bit as beautiful as I had imagined it would be. My older daughter, DJ, had one thing on her bucket list: To touch the crystal clear water. My younger daughter, Zoey, had her own bucket list: Jump off of Black Rock, and boogie board. I’m pleased to report that all bucket list items have since been checked off. My bucket list was pretty lackluster. It contained only two things: Maintain DJ’s T1D, and don’t have a panic attack. The former nearly caused the latter.
Traveling during a time where Covid is still an ever-present risk, and despite my husband and I being fully vaccinated, it still felt pretty scary to embark on such an adventure. There were so many feelings that I didn’t plan for….fear of what others would think of us for making such a huge trek, social anxiety after isolating for so long, worry about one of our children getting sick, and quite honestly, forgetting how to joyfully embrace an adventure. Despite all of these things, we forged ahead like our mental health depended on it (and it did).
As I started to pack, I realized that this would be our first major trip since DJ’s December, 2020 diagnosis and I felt overwhelmed with the idea of packing all of her diabetes-related supplies. She’d need her everyday stuff: Needles, insulin (2 types), glucose meter, test strips, finger pokers, her Dexcom receiver, cell phone, juice, candy, etc. In addition, she’d need backup stuff in case she ran out of any one of her everyday items. We’d need to pack an extra Dexcom sensor and transmitter just in case. We’d need to pack adhesive remover, and cover stickers. Extra needles and test strips. Ketone strips in case her blood sugars were consistently too high. Vials of insulin on ice. More juice. More candy. A makeshift sharps container, and a letter from her endocrinologist stating that it was necessary to travel with all of the above. One backpack full of everyday supplies, and one carry-on full of backup supplies. And somehow, through it all, my daughter is supposed to feel like a “normal kid.”
I have quickly learned that one of the hardest parts of diabetes is the burden you carry as a parent, teetering somewhere between driving home the truth that your child can still do and be whomever they want to be, while secretly stuffing your feelings of overwhelm about what it requires to keep them safe. You paste a smile across your face and say “this is no big deal!” while inside you are battling deep resentment for the ways it all feels like a very big deal. You usher your child through each day, each experience, with fabricated confidence - and you wonder how many more years you have until they catch on. Simultaneously, you know that you will do whatever it takes to carry the burden for as long as they’ll allow you to.
With every new experience comes risk - both real, and perceived. Because of my generalized anxiety disorder, my risk barometer is a little “off.” I am easily driven by perceived risk, which is where I rely heavily on my husband, who has a nose for real risk. He has a healthy relationship with danger, and while he sometimes dances closer to the line than I would like, he would never ever compromise our daughter’s safety. As such, I typically let him lead us into new situations and I look to him for guidance in how we enter into things. “So, are these waves too big?” “Are we too far from shore?” “Does she look pale?” “Should we find some lunch now?” In some ways, our trip gave me the gift of surrender. In other ways, I just stuffed myself full of shame for silently worrying at.all.times.
One of the days, we went snorkeling. Now, I don’t know about you - but I could go my entire life without such an experience. Big and awkward fins on your feet that can no longer touch the shore. Out in the middle of the water, with rolling waves drifting you farther into the abyss (yes, I’m being slightly dramatic). Goggles that allow you to see under the water, but completely distort your above water vision. And a breathing tube that reminds you of its unnatural allowance with each Darth Vadar inhale that you take. So great! Anyhow, Zoey was feeling a bit panicked in her first foray into the ocean (I don’t know why.). So, Zach took her under his wing, which left DJ and I to be partners. Everything was going fairly smoothly, despite the aforementioned details, when it struck me. We were out in the ocean, somewhat far from shore….what on earth would I do if her blood sugar suddenly plummeted? This is a very real possibility considering that blood sugar drops with exercise, and treading water ain’t easy! Would she feel it in her body before it became urgent? Was I a strong enough swimmer to tow her back to shore if needed? By the time we got to shore, would it be too late and would I have to learn how to use the emergency Glucagon injection? Needless to say, even the sighting of a sea turtle (also on my bucket list, but not as high up as the first two items) wasn’t enough to calm my nerves. These were thoughts and scenarios that are now a part of our reality. I had just never had to consider them before that moment, when we were already in it.
The rest of the trip was met with first-time moments, and worry about how we’d get through them. Never before have my children had an opportunity to swim for hours on end, or even boogie board. And until Dexcom makes a waterproof case and arm band for CGM receivers, T1D warriors will always need to stop what they’re doing to check their numbers. They will always be brought back to that divide between “normalcy” and reminders of their unique needs. Our children will always require their childhood be interrupted so that we can help them manage such a complex disease. That’s the part that felt heaviest to me all week. It all felt so unfair. And yet through it all, DJ only rolled her eyes at me a few times.
Before we left on our trip, I saw a podcast headline that read “the most harrowing diagnosis story I’ve ever heard. DKA on an airplane.” DKA is something those of us who find ourselves in the grip of Type 1 Diabetes have come to fear. It’s “Diabetic Ketoacidosis,” and can be a life threatening condition caused by a shortage of insulin in the body. Most people are first diagnosed with T1D after going into DKA and landing in the hospital under intensive care. It’s rare that a person carefully managing their diabetes would fall into DKA, but that headline deepened my fear of flying. I hadn’t even considered troubleshooting DJ’s blood sugar highs or lows while in the air! Good thing we had that everyday backpack, and carry-on all packed up. We never needed to do anything outside of our normal care regimen (thank you, Jesus!), but the fear and anxiety stayed stuck in my throat for the 5 1/2 hour flight both ways.
The thing that I’ve been carrying since our return flight is the way DJ worked to protect our seat mate. There was a child about her age traveling alone. They had the window seat in our row, and both DJ and I being the empaths that we are, noticed the child’s anxiety right away. We tried our best to offer comfort, but they were hell bent on pretending we weren’t there. Because DJ had already tuned into their fear, she didn’t want her needles and injections to intensify their experience. For the first time since diagnosis, she excused herself to administer insulin in the bathroom. There are parts of me that feel proud of her sensitivity and compassion, and there are parts of me that feel angry she’d want to protect others from feeling uncomfortable with her disability. It’s why I started this post by saying that my hope in sharing our experience, is that it would foster more compassion in those who don’t yet understand Type 1 Diabetes.
I once heard an endocrinologist tell their adolescent patient that they could argue with their parents about everything in life except diabetes management. When DJ argues with us now, I remind myself that her diagnosis has taken significant control from her. She’s almost 12. It’s her job to argue with us, and I just pray now that it’s never a fight about her health. She has done a tremendous job at taking on diabetes with maturity and grace, but when I catch glimpses of her burnout from trying to manage it all, I fear those burnouts will eventually cause a blowup. I suppose those eruptions are to be expected, and normal - likely even healthy. But, they’ll be fueled by a disease which requires constant attention. She will never be able to turn it off, shut it out, or take a break from it. Never ever.
All this to say, Type 1 Diabetes is a beast, y’all. While manageable, and most importantly, livable - it takes so much, too. It’s exhausting in ways your brain was never prepared to flex, and draining on the heart and spirit. Yet, we’re doing it. Every single day. Every new experience. Every adventure. Snorkeling. Boogie Boarding. Flying. Traveling. We’re doing it.
One foot in front of the other, moms and dads. Your warrior is now your teacher. They will teach you about resilience and courage. They will teach you about trust and surrender. They will teach you about grit and grace. They will teach you how to be brave, how to let go, when to bite your tongue, and when to advocate. They will launch you into a world of pharmaceutical bureaucracies. They will push you to learn about government policies, and the injustices of families just like yours who are forced to find life-sustaining insulin on the black market. They will teach you that you can live on the edge of nervous-wreck and thick-skinned. They will teach you about hope, and moving forward, and acceptance, and joy. They will teach you about gratitude, prayer, and kindness.
Most of all, they will teach you how to live a life of fullness and adventure.