Kim from Texting my Pancreas started the You Can Do This Project to allow people to tell their stories about living with diabetes and also to watch and read these stories and hopefully be inspired. Visit Kim’s special page to learn more and see a list of links to all the contributions.
Here ‘s what Caleb has to say. As he puts it, you CAN do this!
I’m stretching the “Saturday Snapshots” prompt by posting a video. This is largely because this event is a very close second to meeting Nick on the list of awesome things for Caleb. He cannot help but smile and burst into song (DCamp chant song) at the mention of DCamp. It was an amazing experience and this is one of his proudest moments:
Because I have diabetes I was able to meet Nick Jonas. I liked meeting him because he’s a famous rock star and he likes the Yankees. I look up to him because I want to be a singer and I want to manage diabetes like he does. He was nice to me and he made me comfortable to be there. What I remember the most about meeting him is when he walked into the room, walked right up to me and said, “I know you’re a Yankees fan. You’re a good man.” It’s a great memory that I will always remember.
The prompt for today is “Ten things I hate about you, Diabetes”.
Caleb was quite eager to respond to this, but he started to struggle for ideas after number five.
1. Changing my Pod
2. Changing DexCom
3. Having to wake up in the middle of the night to change my Pod
4. Feeling low
5. Not being able to eat right away when I’m high
6. Having to always prick myself
7. Feeling lousy when I’m high
8. Having to explain myself to other people who ask me what I’m doing when I’m checking my sugar
9. Having to deal with my blood sugar in weird places and weird positions like at a party
10. Having to change my Pod every other day
That’s Caleb’s list, now I’m going to insert my voice on this one. I think the thing that I hate most about diabetes is that even when you follow all the rules, and you’ve spent countless – and I mean countless – hours analyzing data, trends, etc., and you put forth more effort than you’ve ever put into anything in your life, you still fail to achieve the desired results. If diabetes played fairly, it would still be a royal pain in you-know-what, but it would be much less so.
Background – This happened at the beginning of the school year last year. We started the year with a new nurse and a new protocol regarding Caleb’s diabetes. All of Caleb’s teachers were on high alert. For a couple of weeks in a row, Caleb had to check his blood sugar during art class due to feeling low. The event he writes about happened shortly thereafter.
One day at school when I was in art, I raised my hand and my teacher, Miss P, asked, “Do you have to go??” I said, “ Yes.” Miss P called Mrs. M, the nurse, and told me to check my blood sugar. My blood sugar was fine so Miss P sent me to Mrs. M’s office. I did what I was told.
When I got to Mrs. M’s office, Mrs. M was confused. She looked at my blood sugars and was about to ask me to check again when I told her all I had to do was GO to the bathroom.
Poor Miss P was trying her hardest to be quick to address any issues Caleb had. Her unfortunate choice of words, “Do you have to go?” had dual meaning in this case. This time, he did NOT have to go to the nurse, just the regular old bathroom.
As I did last year, I am letting Caleb author the Diabetes Blog Week posts.
Since Caleb has no appreciation or lack of thereof, for that matter, for the differences among people living with diabetes, there isn’t much to say on yesterday’s topic. He just simply isn’t aware enough about what is different about being type 1 versus type 2 or being an adult versus a child versus a caregiver. He doesn’t really care. I see that as a good thing. At his age he’s just living life, not focusing on it and I think that’s appropriate for an eight year old.
He was, however, willing to write a letter to diabetes. Here is is:
Sometimes you get annoying like when I am high or low. Sometimes I wish I didn’t have diabetes. It really sucks, but I got used to you. I want a cure. Please go away. It would help.
P.S. I want to let you know you’re not going to bring me down, – I’ll always be standing up!
We are fans of the Pinkalicious series of books. Pinkalicious is fancy and loves pink, her parents are fun but they’re not shy about enforcing the rules, and Pinkalicious learns a valuable lesson about eating healthy, green foods. What’s not to love?
For Christmas, we chose to share the pink fun with my niece and the kids’ younger cousin by giving her the first three books in the series: Pinkalicious, Purplicious and Goldilicious. Since there were three books and I have three kids, I asked them each to make an inscription in one of the books to make the gift a little more special.
Lila picked Goldilicious because she likes “unackorns”.
Caleb’s initial note summarized a very important, yet succinct message from Purplicious:
This story will teach you that you don’t have to agree with other people. Just be yourself. Love, Caleb.
An excellent point, indeed. Nevertheless, I asked Caleb to personalize it so that it would mean more to his cousin. He met my challenge with this:
P.S. So far in each grade I’ve had to teach people about diabetes. In the story “Purplicious”, Pinklicious is the only one who likes pink. Pinklicious feels like she is being teased. I feel the same way when I’m in front of people and they stare at me. At the end of “Purplicious” Pinkilicious feels better because she meets a girl who likes pink because it makes purple. I feel better because I get used to it and tell them what it is.
So M, if you ever feel like you’re being teased just know that you can stick up for yourself. It doesn’t matter what other people think. Caleb.
No matter how much I try to normalize his environment, and despite the best efforts of the caring people who surround him, this feeling of being different remains.
As heart-wrenching as it is to read his words, I take comfort in the wisdom that he has gained, and his willingness to share it with those he loves.
Our friend Bill from 1HappyDiabetic.com is hosting the “Pay It Forward Program”. Bill is a diabetes video master. He, in conjunction with wellthen.org has created this program to get video cameras to people who might not otherwise have access to one. If you’ve always wanted to create a diabetes related video, but couldn’t get your hands on the proper equipment, now’s your chance to let your creative ideas and energies flow. See Bill’s site for more info on the program.
Because we love all things Bill, Caleb signed up for the program, we received one of Bill’s Mino HD Flip cameras and we went to work. After considering a few ideas, Caleb felt the story of his mini-glucagon experience was an important one to share.
You may have read my version of events yesterday. Here is Caleb’s recap. However, I warn you, this may not be appropriate viewing if you are the slightest bit squeamish. This video was created by Caleb, a seven year-old boy with a typical seven year-old boy’s sense of humor. Please keep that in mind should you dare to proceed.
I decided not to discourage Caleb’s creativity as he was particularly enthusiastic about his ideas. I apologize in advance. 🙂
Caleb woke up on Monday, sat up in bed with a smile and a sigh and said, “Today is going to be a regular lunch.”
“What do you mean, Caleb?”
“No special shows to watch today while we eat.”
“Oh! Nope. Not today.”
“I like World Diabetes Day. It was exciting.”
We had two World Diabetes Days. Our 2nd Annual School Blue-nity event was on Friday. There was an even bigger swarm of blue this year since not only was Caleb’s school involved, but also the “big school” next door. There are three children among the two schools of approximately 800 students living with type 1 diabetes. It was great to broaden the scope and include all three of them this year.
I made ribbons: special ones with a red sequin for the three children of honor, ones with a small red bead for those people (family, school nurses, teachers) that support them most, and plain ones for all their classmates and extras for whomever wanted one. The red sequins and beads represent the drop of blood needed to check their blood sugar. I was able to meet one of the other two diabetic children for the first time on our school spirit day. I told him I liked his pin. I was happy to hear him proudly reply, “Thanks. Mine is special.” I told him I knew – I had made it especially for him.
Our awareness video was shown during each of the eight lunch sessions. I went back and forth between schools to watch the kids’ reactions. The younger kids were all “oohs and ahhs” at the beautiful blue monuments. The older kids ate quietly and watched. The principal did a great job of asking questions of the kids to reinforce the things they learned from the video. I was happy to hear them answer the questions correctly.
Colin, Lila and I each wore an OmniPod (from our failed stash accumulated over time) in support of Caleb (I still have mine on and I am amazed at how I’ve completely forgotten about it). Caleb even added an extra one on his arm so that people could see it. Colin and I both got a lot of questions about it and we were able to explain what it was and get conversation going. Colin said that one of his classmates began explaining to others what it was once he learned. I thought that was just great!
I don’t expect that anyone walked away with a comprehensive knowledge of what diabetes is, but I do believe that an overall message was sent, even to the younger kids – people who live with diabetes are just like everyone else and should be treated as such. For Caleb, at his age, that’s what I want his peers to know.
Perhaps the highlight of the day was what Caleb’s teacher did for him. Not only did she allow me to gather the kids to take a great picture of unity of their outstretched hands with arms sleeved in blue, she helped put all those little pins on each student. Best of all, she sent Caleb out of class under false pretenses so she could do something extra special for him. She had each student write a note on green paper (his favorite color) telling him what they like about him. They surprised him with them when he returned. There was one from each student, his teacher and his school nurse. The kids had such lovely words of support for Caleb. I think his favorite comment – which was on almost every note – was that “he is funny”.
On November 14th, we made a cake for Dr. Banting’s birthday and I let Caleb dictate the rest of the day. He took many, many pictures. He showed us videos he accumulated on his camera including footage from last year’s walk and last year’s World Diabetes Day. He set up Olympics (it was more like just playing outside, but we went with it).
He even made every diabetes management decision himself. He decided when to check his sugar, what action to take for each reading, he made his lunch and bolused for it, etc. I just sat in the background and said “Mmm-hmm. Okay. What do you think you should do?” I think it was harder for me to restrain myself than for him to actually take all the actions.
And we did the Big Blue Test – all of us. Lila’s reading was originally “HI”. Ahem. Okay. Please wash your hands and we’ll try again. She came back with a 113. My original reading after activity was 57. Alrighty. Checked again and I was 115. Gotta love the meter accuracy.
We ended the day with lots of blue glow in honor of the many monuments lit up around the world. It was a lot of fun creating the swirl pictures in our attempt to make blue rings. Overall, I think we had a great acknowledgement of the day, and of Caleb. He was happy through it all, and that’s what I’ll remember.