The armband. I've had lots of questions about it today. What's that for? Did you go to a concert? Beer garden? Did they change the "Fall Risk" bands at the hospital from yellow to orange?
With each question, I've smiled and explained that we just got back from a diabetes conference in Florida.....
That's what they usually say. Oh. Not positive. Not negative. Just oh.
When I encounter that "Oh" I realize that I have to go on. I need to explain more. They aren't getting it yet.
You see, my daughter has diabetes.
She's seven. She's had it since she was three. She's a twin. Her brother doesn't have it. Her dad and I don't have it either.
I'm still not getting to them. They aren't understanding. So, I continue.
Each year, thousands of families gather together for one week of normal. One week where everyone around us is just like us. Every single one of them. Moms. Dads. Siblings. Kids. Adults. Grandparents. Babies. Tweens. Teens. Young adults. Every age group. Every demographic. Wall to wall diabetes.
We took my parents this year. Did you know that they've been afraid to allow Ava to sleep over at their house since she was diagnosed? They've been afraid of sleepovers for four years. Did you know that their fears about her disease went so deep that they've never shared them with anyone? Not even me. Did you know that they were so afraid during the first session that they considered not attending any more sessions because they were concerned that they weren't "fluent in diabetes" enough to be there and participate?
Did you know they stayed? That they went to ever single session? That they cried in their sessions? That they shared their hopes and fears? That they came out of it confident and assured that they could handle diabetes. Maybe not like I do....but enough to not be afraid of sleepovers. Enough to be able to help share in duties to help reduce my caregiver fatigue. Enough to become grandparent pancreases.
Did you know that they have special sessions for siblings? The orange tribe. The ones who support and lift up the green team (those with diabetes).
Did you know that they helped the orange team talk about their feelings of isolation, of being left out of the diabetes rituals, of being the occasional afterthought. Did you know that Davis made a friend that he talked about from sun up to sun down? That he ran into the sessions and couldn't wait for us to leave his side so he could be with his people.
Did you know that I saw some of my favorite diabetes families in the world? The people that I've laughed with. Cried with. Liked their posts. Bought their walk shirts. Watched their kids meet milestones and succeed at daily events. Did you know that we hugged? And, I'm not a hugger.
Did you know that I cheered on other people building their own rigs and loops and OpenAPS systems? They are not waiting any more. While I couldn't help them build...I could smile and take pictures and offer encouragement.
Did you know that Ava was in her element? She had a friend from Camp Carolina Trails there. She had her Hannah. She had total strangers who became her new squad. She loved and embraced and jumped and sang and ran and played. She ate glucose tabs. She carb counted. She became even more confident and beamed so brightly that you could see her smile from across the room.
Did you know that she got lost at lunch and couldn't find me? Did you know she cried and was a hot sweaty mess? And the look on her face showed nothing but love and relief when we were reunited.
Did you know that I presented? I helped young people figure out how to transition to college or the workplace. Did you know that Jimmy worked, too? He gave a watchful eye to make sure that the orange team and the green team were safe and secure.
Really? That's amazing.
That's what they say. It's amazing. And, they are right. It's better than "Oh." It's the perfect mixture of fun and education....of research and innovation.....of exhibit hall and free time.
Children with Diabetes Friends for Life will change your life. It will reignite your passion for fighting this night mare. It will restore your soul and remind you that you're not in this alone. I'm not sure that there's been anything more impactful on our lives since diagnosis than this conference. Than these arm bands. Than the orange team. And the green team. Thank you Jeff Hitchcock and Laura Billetdeaux for sharing your dream with so many of us. Thank you for allowing us to be a part of your team. Thank you for embracing my parents and creating a safe place for all first timers to know that they are not alone.
We are counting the days until October. And, then we are counting the days until next July.
I'm not taking my arm band off. When the days are hard and the nights are long, I can look down at my arm and remember my people. And, when it falls off my arm, you'll be in my heart until we see you again. If you see it, now you know. Just know, the response is so much more than "Oh."
Thank you #CWDFFL2017 and #wearenotwaiting. Thank you.
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