One Year In: Our First “Diaversary”

One year ago — June 9, 2016 — a new family member came unexpectedly crashing into our lives. This new family member demanded 24-hour attention, a new education, personal growth, dietary changes, a lot of money, and a huge amount of patience. Its name is T1D. We didn’t welcome type 1 diabetes into our lives, but it certainly made itself at home very quickly. Finding its accouterments into our cabinets, closets, and yes, even our fridge (unopened insulin must be kept cold). T1D has demanded a seat at our table for every meal, insisted on being privy to every snack, every thought about food. It crept into our beds and robbed us of our sleep —  there have been only a handful of nights in the past year that we have not had to get up to treat a high or low blood sugar. T1D accompanies us to the park, the pool, the grocery store. Everywhere we go, it follows and likes to frequently make its presence known. We quickly learned that this new family member is sneaky, unpredictable, and malicious. Yet we must learn to live and thrive with it. For our little girl, we must learn to be thankful for diabetes.

Read Lily’s diagnosis story here. 

I remember feeling this huge sense of accomplishment at Lily’s first birthday, like, “OK, we did it. We kept this human alive and thriving for one whole year.” It’s a similar feeling now that we have one year of living with diabetes under our belt…magnified by one million. We have literally kept her alive everyday since; in fact, you could venture to say we have saved her life everyday by giving her the right amount of insulin her body needs at any given time to function, or giving her the glucose she needs when her blood sugar plummets to dangerously low levels. We don’t always get it right, but we have been training to be her pancreas — a vital organ — for 365 painstaking days. If you think I’m exaggerating about how hard it is, come hang out with us for one whole day. I’m not trying to be a martyr here, it’s just that the magnitude of this responsibility is not something I reflect on very often, and now seems like an appropriate time.

Frankly, one year ago, my little girl could have died. If the doctor hadn’t listened or taken me seriously. If we had waited a few more days to be seen by her pediatrician. If we were sent away with the wrong diagnosis (this happens VERY often with T1D). Everything could have been very different. One year ago, she survived DKA. And we have fought together as a family everyday since.

We have gone on living. We have gone to the beach. We have gone to the mountains. We have camped. We have traveled. We have cried. We have meticulously planned. We have raged. We have hit the proverbial wall. We have kept going. We have smiled. We have laughed. We have thanked the Universe and all the gods that this girl is ours and that she is so incredibly resilient. She bounces back from every blow with a smile on her face. She is pure inspiration and why we keep on striving to live our lives the way we would if type 1 wasn’t in the equation. And we do it everyday knowing type 1 will never go away, there is no cure.

Today, one year in, I’m so thankful for all the lessons and for the subtle way Lily reminds me everyday: WE CAN DO HARD THINGS. 

Read about the signs and symptoms of type 1 here.

2 thoughts on “One Year In: Our First “Diaversary”

  1. I worked with Jeff at Intrepid in Asia. This is my 2nd summer back In the U.S helping with my niece that’s autistic and has type I diabetes. Although she’s not my daughter I know exactly how you feel. My niece doesn’t communicate much at all. We we TERRIFIED when we found at she had diabetes. We imagined her screaming at every needle prick. She usually screamed evertime we went to a grocery store or restaurant anyway. We thought she’d rage at every needle prick. But she didn’t. She never screamed once. Maybe because she has a very high tolerance for pain. Medical technology has made it easier. There’s no more finger sticks All day long day, no more insulin shots. Now the app on my iphone beeps when sugars are too high or low. Her insulin pump makes it easier. Her schools and teachers were amazing! One school even hired a full time nurse just to give her insulin! Now my 22 niece who functions at a 3 year old level will let us know if her blood sugar is too low or too high. She knows to ask before eating something. She can’t tell the time on a clock but she knows how to use her insulin pump better than I do. I learned how to count carbs.

    The point is, it will get easier, all that stuff will end up just being 2nd nature. You’ve past the hardest part, the first year. With time it will become easier for her and for you. It will become 2nd nature. It won’t be the burden it is in the beginning. It’s like riding a bicycle and while always difficult it will only get easier. Your daughter will be able to live a beautiful life! She Will still be able to climb mountains with you and Jeff! 🙂

    Best wishes!

    Aaron

    Cheers,

    Aaron

    Like

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