So when your daughter is away at diabetes camp for two weeks and you don't get to talk to her, you rely on pictures and letters to get the scoop! I read a lot into these pictures :)
Photographs courtesy of Clara Barton Camp photographer via ecamp website.
I see a smiling girl in several of these pictures. I'll take that as she is having fun! I see her really concentrating on the apparent warm up stretch. I'm assuming she's either really tired or just not into exercising at the moment! (And hope that she's not sad about something.) I see her chillin' out with the girls. I'm happy to see that she is making new friends. I see her enjoying a swim in the lake. I took that as a fun way to cool off! Thanks to my friend Wendy who pointed out that it appears that Ally is wearing a site on her tummy. Woa! I'll take that as success! One of Ally's goals while at camp was to try new sites and to gain self-confidence at inserting her own pump sites. And when the mail arrives with several letters from camp - all at once - you read them over and over again and know that all is well at camp!
My heart swells when I think about Ally. How much she’s grown, how strong she is becoming.
Ally has always had a positive attitude, but like most people living with diabetes, she has moments of really disliking diabetes. It is a constant burden to worry about blood sugars and how foods, exercise and emotions will play into the next insulin dosing decision. There are many legitimate reasons for getting down or feeling overwhelmed with Type 1 Diabetes.
Following our Friends for Life trip last summer, Ally and I talked about choices for the next year. I asked her if she wanted us to attend FFL again, or if she wanted to go back to diabetes camp next summer. The last two years FFL and diabetes camp have overlapped, so we had to choose one or the other. She was torn because she really wanted to go to camp this summer, but knew that if she went to FFL, she'd get to spend time with Addy, her "friend for life". Jokingly, she said, "How about if Addy comes here and goes to camp with me?" We laughed and I said I wished that were possible.
Then when I learned that Ed Damiano and his team would be recruiting for the Bionic Pancreas Camp Study, I showed Ally a picture of Clara Barton Camp. I said, "What if you and Addy could go to camp together?" The first thing she said was, "Mom, isn’t that the camp where they got to wear the Bionic Pancreas? I DEFINITELY want to go there. Can I wear it while I am there???" She had no idea that my next question would be “How would you feel about being in a clinical trial for 6-11 year olds?” She screamed, "DEFINITELY!"
I had started out thinking that I needed to really talk to Ally about this study and make sure that it would be something that she really wanted to do. While I had listened to Ed Damiano present his Bionic Pancreas project multiple times at different Children With Diabetes events, she had only seen a video and briefly heard us talk about it.
What I didn't know was that she had already "bought in" to the idea of it. I learned that she had written a paper about the Bionic Pancreas at school shortly after watching the video from last summer's camp study. She also told her school nurse and teachers all about it. From then on, she asked me month after month if I had heard anything about recruiting for the study.
It makes my heart swell with pride that Ally said “DEFINITELY”
when I asked if she’d be interested in participating in the Bionic PancreasSummer Camp Study. It made me cry the second that I
saw her wearing it. She is doing
something awesome!
She is turning this
burden of diabetes into something more.
This has been an opportunity for Ally to experience freedom from her diabetes, even if just for a short time. But this has also been an opportunity for Ally to participate in a clincial trial that all those living with diabetes will hopefully benefit from. This has been a chance for Ally to advocate for herself and others with diabetes. This makes my heart swell!
Ally was smiling from ear to ear from the moment we arrived at camp until the moment that I said goodbye. (And she even tried to keep smiling while I bawled!) She has been excited about the bionic pancreas since the first time she watched a video about it. As I was leaving camp, she said, "Mom, I think I'm going to use up all of my pictures on this (pointing to her bionic pancreas) and of Ed Damiano!" Lol. She is old enough to appreciate how life changing this is for her and for all those with diabetes. And I think she's old enough to understand how proud we are of her too!
Few things make my heart as happy as it does when something gives Ally hope for a better quality of life. THANK YOU AGAIN to the whole Bionic Pancreas team! You have given Ally, our family and all those with type 1 diabetes something to feel hopeful about.
I know that my blog has been gathering dust for the last several months. Life is busy. But this week we have been blessed with an opportunity so big that it warrants a good dusting off of the old blog!
Ironically, one of my last few posts was exactly related to the reason for dusting it off today. "Until There Is a Cure" is the beginning of the story which led us to this point today.
While we have, in a way, been counting down since December...THIS is the most meaningful countdown I've ever experienced. Please take a minute to watch:
(*Video credit goes to Wendy! My video is a mess. I was shaking and you get to see lots of the floor and the ceiling.)
As Ed Damiano counts down from 25, I am overcome with emotions. So many things were running through my mind in those last few seconds. I was thinking about how proud I am of Ally for wanting to be a part of this clinical trial.
T-minus 20 seconds and counting...I was thinking, "Oh my gosh, she is taking her own insulin pump - that she wears every.single.day - off for the next five days."
10 seconds..9..8..7..6..5.. "This is going to be a game changer for all type 1 diabetics. I can't believe we are doing this right now!!"
5..4..3..2..1..GO BIONIC! I heard those words, "Go Bionic", and my heart skipped a beat.
GO.BIONIC. That is huge! That means that her diabetes is now being controlled completely by the closed loop system. That means that for the next five days she doesn't have to worry about counting how many carbs she puts in her mouth. She doesn't have to worry about her basal rates. She doesn't have to worry about figuring a correction dose of insulin for high blood sugars. She doesn't have to worry that she might go low at night after so much activity. The entire burden of diabetes management has been lifted off of her shoulders for five days. She can just be a kid at summer camp!!!!
"Go Bionic!" That is the moment that Ally became bionic. That is a moment in time that I will never forget.
My Bionic Girl!!
We could not be more grateful to Ed Damiano and the entire Bionic Pancreas team for all of their dedication and hard work in making this a reality for our daughter and for all those living with Type 1 Diabetes.
