After hearing Luna’s diagnosis, I remember questioning if life would ever feel normal again. The thought of doing the most mundane things felt overwhelming. My brain was instantly flooded with questions. I begin to think of the carbs in every lunch I had ever packed. What about eating at restaurants? Do they provide carbohydrate counts? And even if they do, are they accurate? I found some solace in that Luna has been gluten-free since birth, and is accustomed to making healthy food decisions. Sadly, my little slice of comfort only lasted long enough to realize that even the most gluten- free nutritious foods have carbs. All of which have to be accounted for, to ensure that Luna receives the proper amount of insulin. These daunting thoughts consumed me, all while simultaneously hearing, “Don’t worry you can do all of the exactly same things as before.”
But how? is the "million dollar" question that no one really has an answer for, and how could they? Type 1 diabetes doesn’t care about constants and variables. Type 1 requires hour by hour critical thinking followed by a reaction. Which by the way is definitely not the way I am used to operating!
Being faced with my new reality was and is still very scary at times. Every time I hold that needle up to Luna’s body I pray that all my calculations are correct and that I remember how much activity she had/will have that day. Talk about conscience living! In a few weeks, we will be in the fourth month of our "new normal" and I can proudly say that school lunches are being successfully packed, partly because Luna likes to rotate the same five meals; we have eaten at restaurants and even took a road trip to Tennessee. We have found that with a bit (OK, a lot) of research we can do pretty much anything.
I went to bed early one night during our recent trip to Tennessee. When I woke up the next morning Paul told me he watched Luna dance around the campfire for hours. He also told me that he put her to bed in the same clothes. "Awesome! She probably smells like an extinguished fire pit!" I didn't even complete that sentence before Luna came in for a hug. Oddly, I was greeted with the sweet smell of the shampoo I washed her hair with the morning before.
But how? I asked myself. This time my "million dollar" question had an answer. Well, sort of. Which is simply that not every question has an answer, maybe some situations don’t make sense because it’s not supposed to make sense. Or maybe... it’s magic, this was Luna’s response. Before Diabetes I might have tried to ask more questions or accuse Paul of messing with me. Post-Diabetes, I agree. After all, Luna has proven to be the kind of girl who can take on diabetes using supernatural strength.
That is magic, she is magic personified.
And while I wish I could say that I’m fully content not knowing all the answers, that certainly is not the case. The last few months have really tested our innate problem solver ways. We live knowing that we may never know why our daughter has Type 1 Diabetes. What we do know is that at any moment, we will find ourselves injecting insulin to treat a high or sitting on the floor of her classroom correcting a low. This is what life with Type 1 is like. It’s a big game of 21 questions except without responses.
But despite all the uncertainty, I’m hopeful that one day there will be a cure. I'm hopeful that parents like Paul and I will get the answers and that kids like Luna will get to witness that magic.
I’ll never forget the day we were discharged from the hospital. While Paul was outside loading the car, I sat on the bed watching Luna play with the doctor’s kit and bear she‘d been given days prior. She kept talking about how lucky she was to receive such neat toys and to have met interesting doctors, nurses, and educators. As a newly devastated parent, the word “lucky” stung. I sat there, a perfectly healthy non-diabetic adult listening to my little girl, whose life was just flipped upside down talk about how lucky she is, and all I wanted to do was break down. For the three days and two nights we spent at the hospital, Paul and I did our best to hide our emotions, choosing instead to forge ahead with the pseudo-optimism we were using to cope. Finally, it was time to leave; I was both anxious and scared to return home. So many questions ran through my mind. What if I forgot to ask something? What if I forget to do something? Did I feel ready to leave our hospital safety net? All the same questions I asked myself six years ago when Luna was born. Knowing I didn’t have a choice in the matter, I decided then and there that I would do whatever it took to figure things out; just like I had done every day since becoming a mother.
After giving myself a mini pep talk, I signed the discharge papers, took Luna by the hand and we walked to our car. Along the way, I couldn’t help but wonder about all the families walking past us towards the hospital? What fate awaited them? Which one of these kids would take Luna’s place? I silently prayed and naively hoped that they were all there for minor bumps and bruises.
When we finally stepped outside, the cold air reminded me that it was still winter and even though everything in our world changed, none of that mattered to the rest of Chicago. The world seemed different to me, and still does. As we approach our three-month "diaversary", the diabetic glasses are still very much on. I don’t know when or if they will ever come off. I often wonder if I’ll always obsess over the carb. counts, or if I'll ever stop thinking of my daughter terms of numbers? Only time will tell.
Nonetheless, I'm hopeful, because I’m starting to realize that Luna is right. She is lucky, we are lucky. All I had to do was walk around the corner to know just how lucky we are. There were children at the hospital that I knew spent a lot of time there and some I knew were never going to leave. So even though Luna’s pancreas retired at the ripe old age of 6 (something Luna came up with), we are lucky! Lucky to have insulin, to have health insurance, to have knowledgeable doctors, to have a strong support system, to have each other and to have Luna. Her positive outlook and strength make this disease manageable. She is proof that life doesn’t have to be perfect to have a perfectly good life. She is an optimist, a silver lining kind of gal! As her mother, there’s nothing luckier than that.