Last month I met a couple with a 3yo little girl who was diagnosed with Type One on Halloween. They looked just like Jason and I did one year ago. The scared, deer in the headlights look, just taking everything it. The overwhelmed, sheer exhaustion, running on pure caffeine and parental adrenaline appearance was unmistakable to any parent in the Type One community. I was flooded with emotions. It made me realize how far we have come and just how far away Halloween 2016 feels.
If you are new to the Type One community and reading this, hello, I am sorry you had to join us. But this is a fierce community with strong members who are amazingly supportive any time of the day or night. I also want you to remember three things.
1) You are not alone. Personally this one was the biggest for me. It is so comforting to know that no matter how much this battle sucks, others are going through the exact same thing. Whether you are at 1 day, 1 month, 1 year, 10 years, someone else has been there. Another family has experienced every emotion, sleepless night, and blood sugar that you are currently experiencing. We’ve been in your exhausted shoes and we will offer any support and advice we can. Most people I’ve met in the T1D community are open books, more than willing to share stories, give pointers, and just be there to listen when you’re having a horrible diabetes day. It also brings reassurance as a parent because it made me realize my little one isn’t alone. She has other kiddos, teenagers, and adults fighting the same battle. As she gets older there will be plenty of people who have “been there, done that” to give her advice and help her with new hurdles she’ll have to overcome. And I know she’ll be ok because she is not alone.
2) It gets better. I know it sounds cliche and makes you want to roll your eyes, but it’s true. For me it got better once I realized that we weren’t going to kill our child. My biggest fear, leaving the endocrinologist the first day, was giving too much or too little insulin. Heck, it’s a medication at hospitals that 2 RNs need to double check at the bedside and you’re just going to let my husband and I give what we have calculated on our own. That seemed overwhelming and it was, but most days it no longer is. And really, it gets better. Attend any social event with families with T1D and you’ll see it. You’ll see kiddos having their fingers poked and being dosed without a meltdown. You’ll see middle schoolers and teenagers starting to manage their own care. You’ll see parents not weighing and counting every morsel that goes into their kiddo’s mouth because they’ve learned to SWAG food with the best of them and they’ve realized that a brief high or low blood sugar can be treated. A swing in blood glucose isn’t the end of the world. Most importantly you’ll see kids being kids, eating, running around, playing, and laughing. It’s a beautiful sight and sound, which is often interlaced with alarms and snacks, but everyone is doing it, so it just seems normal — and it is. It is the new normal of every person in our community.
3) You will sleep again. In the beginning I remember feeling like I would be a zombie for the rest of my life. Like I would need to mainline caffeine just to function in the world. For me, it was worse than the newborn stage. We developed a plan, I would stay awake until midnight to do that check, my husband would wake up for the 2am check, and then I would do a check at 5:30ish when I’d leave for work. Then, at the 6 month mark we started our continuous glucose monitor (cgm), and we both started sleeping again. It was glorious. I’m not going to lie, we don’t get a full night’s sleep every night, but most nights we do. Sleep has made a huge difference in being able to tackle disease. I’m now able to handle this disease and function appropriately in the real world simultaneously.
Once again, if you’re here because you’ve recently joined our community, I feel for you, but know that it will get better. I’ve been in your shoes. Truly, at one year in, managing this disease has become second nature to us. I’m not saying we don’t still have difficult hours, or days, or weeks, but I never expected it to feel this “normal”. It’s amazing just how far we’ve come.