Over the weekend, my husband and I went with a friend to a beach in one of out favorite towns on the Lake Michigan coast about two hours from home. We packed lunches and swim clothes and extra towels and sunblock – everything we’d need for a day out.
Except extra pump supplies.
Because why would I need them? I was on fresh pump site with plenty of insulin and my CGM still had a couple days left on it.
The day Kycie passed away, the Diabetic Online Community was also circulating news about another sweet child, David. He had been hospitalized with sudden onset type 1 diabetes and his dad was reaching out to the DOC for prayers.
On one of the posts, I saw it mentioned that David and his family were from Michigan. So I reached out to my friend Dorrie of Saving Luke on Facebook because I knew she had been in contact with David’s dad, Dave. She connected us and I spoke briefly with Dave on Sunday to offer my assistance in any way possible. Later that day, David was removed from life support and passed away.
I knew I had a busy week ahead of me but I wanted to attend the visitation if at all possible. Luckily I was able to bump my doctor’s appointment on Thursday up an hour, so after that Allen and I headed to his visitation an hour and a half away from us.
David’s family were all so sweet and although the circumstances were horrible, everyone seemed very upbeat and hopeful. There was such a peace on them all, of knowing that David was in Heaven. Dave was so thankful that I made the trip for them, and I told him that they were part of the DOC family. Dave also said they were blown away by the outpouring of love and support from the DOC.
I’m glad I was able to go. It was sad, but humbling. It could have been me. It could have been any of us. It reinforces the fact that we need a cure. Kycie was five, David was four. Little humans, taken too soon.
This week has been a crazy one for the Diabetic Online Community. First we went through Crossfit’s attack on diabetics and the overwhelming response from the DOC that went largely ignored. Then we received good news in the form of the iLet dual-chamber Artificial Pancreas being announced at the Friends for Life 2015 conference. But today we took another devastating blow as Kycie Jai Terry passed away unexpectedly early this morning.
Kycie’s story started on a Monday in January with this precious five year old complaining of a tummy ache. Doctors said she had the flu and sent her home. By Friday, she was having seizures and being life-flighted with a correct diagnosis – Type 1 Diabetes.
Kycie suffered extensive brain damage but at every turn, she beat the odds and floored everyone’s expectations. Earlier this week, she was in the hospital but she was released earlier than expected due to the fact that she was recovering so well. It was an absolute shock this morning to see that she had passed away.
Through Kycie’s [mis]diagnosis, her parents via the Kisses for Kycie Facebook page were able to reach thousands of people with Kycie’s story and at last count, more than 20 children were correctly diagnosed with T1D directly from seeing posts from Kycie’s page.
I didn’t know Kycie personally, but seeing this brave warrior lose her fight hits close to home. As a victim of misdiagnosis myself that resulted in five months of physical, emotional, and psychological suffering, I feel connected to the Terry’s and their cause. All it takes is one finger poke. That $1 test can make all the difference.
This is why I advocate. This is why I won’t be silent about this disease and everything it entails. Kycie could have been correctly diagnosed with Type 1 Diabetes on Wednesday when her mom took her to the doctor, rather than between seizures on Friday in the ER. She could have been a lovely, thriving five year old with a sub-par pancreas. Instead, she’s an angel now.
Please, know the symptoms. Request a finger poke.
Fly high, sweet girl.
Tomorrow, July 10 2015, is my three year Diaversary. Three years ago tomorrow, I sat in the Prompt Care exam room as the mom of a girl I graduated high school with explained to me that, by poking my finger and hearing my symptoms, that they were confident that I had diabetes.
It’s amazing to me to look back and think about that moment. How my whole world shattered and I didn’t even fully realize it. I had no idea the scope and breadth of this diagnosis. I didn’t know about the terror and frustration and hopelessness I’d hit in the low points and the friendships I’d develop through it all.
I don’t plan on doing anything special to celebrate this year. Last year, I had celebratory froyo with my husband. Maybe this weekend I’ll be more in a celebratory mood than I am as I write this after hitting 315 for no reason after lunch at work today. But tomorrow is a new day. I’m still diabetic, but it’s a new day.
A year ago today, on July 1 2014, I first openly contemplated starting a diabetes blog.
With motivation and encouragement from some the well respected bloggers Kim, Kerri, and Frank, I introduced Photograbetic to the world.