Over the summer, I got an email from JDRF telling me about a free diabetes weekend camp that was coming up in October. The camp would pick 20 T1 (ages 8-12 I think) kids from Arizona and host them for a weekend with full medical staff, etc. They were going to pick the kids lottery style, fill out all the paperwork, get it returned by the deadline and they'd draw names and let us know who got picked. I didn't even tell Kortnie that I was going to put her paperwork in, no sense in getting her hopes up just in case she didn't get picked. Well, last week, I got an email, and she did get picked to go. I was excited for her and told her about it.
Me: Kork! You got picked to go to a FREE diabetes camp, for a weekend in October, in Sedona!!
Kork: What camp? Where is Sedona, how come I can't go to my regular camp in Payson?
Me: It's just like your regular camp, but only 3 days, and in October, and FREE!
Kork: Will I know anyone there? I read her the names of the other campers picked, she unfortunatly didn't recognize any of them. Um, I don't know, I don't know if I should go, who will take care of me?
Me: Kork, it's a camp that has special camping weekends for kids with illness, they have doctors and nurses and JDRF will be there too, it'll be fun, they have horses and archery.....I get on the website....Camp Soaring Eagle.....and read her this description....."Camp Soaring Eagle provides year round, medically supervised, camping programs to children and family members from across Arizona with chronic and life threatening illnesses."
THIS IS WHERE IT GETS DIFFICULT
Kork: What does Chronic and Life Threatening illness mean?
Me: Um, well, Chronic means forever, you will have diabetes forever or until they get a cure, so diabetes is a Chronic Illness.
Kork: What is life threatening?
Me: Um, well, ya know, um, well, like, uh....like I'm always telling you to take care of yourself and listen to your body and take care of your blood sugars and stuff?
Me: Well, you know how I say we need to take care of your diabetes so that you don't get sick.
Me: Well, if you don't take care of it, you can get sick, and if you get too much sick, you could die, that is what life threatening means.
Kork: So, I could die from diabetes?
Me: Well, I guess.....but, we won't let that happen....we will always make sure you are taken care of.
That's it folks, that is it right there. She could die because of stupid diabetes. It is Chronic and it is Life Threatening.
No parent ever imagines having this kind of a conversation with their kids.
When she was first diagnosed almost 4 years ago, we were in the hospital, and she was confused about what was happening to her. We were trying to tell her that she had this disease and a part of her body didn't work right, so she had to have shots every day to help her body do the things it needed to do. She was just barely 5 and she just didn't understand completely. She kept asking us over and over, "I will have to do this until I die?" and I kept answering back with "for the rest of your life, you will have to do this". I was too shocked and devastated and I couldn't bear to hear her say "until I die" so I kept correcting it to "for the rest of your life".
Somehow, we must have glossed over the fact that diabetes can kill. And, that's okay, she didn't really need to know at age 5, 6, 7, 8, or even now, did she? Somehow, I let the cat out of the bag. I felt pretty crappy about it, but I made sure to let her know that I would never let that happen. She went off to school and seemed fine with that new information, but there have been little things here and there that make me think that while she's "okay" she's also thinking about it.
Over the weekend, she showed me that she had put a bottle of glucose tabs, a juice box, a glucagon, and 2 vials of test strips next to her bed.
She's been asking me every morning what her blood sugar was overnight. "What were my numbers last night, mom?"
Yesterday, on the way to her music theater class I had her check her blood sugar in the car. She was 59. I told her "have a juice, and lower your basal -90% for one hour", she says to me. "I guess I should do better about checking myself right when I feel low, sometimes I'm just playing and having fun, and I feel low, but I don't feel like checking, and I just think 'oh, it's almost lunch' or 'oh, we are going to music theater in a minute and mom will tell me to check' so I keep playing because it's fun, I guess I should check when I feel low".
She had been jumping on the trampoline with her sister right before we left for her class. I figured she must have felt low on the trampoline but didn't want to stop jumping. So, I just said to her, "yeah, you should check when you feel low, you know, you can check whenever you need to, you don't have to wait for lunch or when I tell you to check" We've always told her that she can check her BG whenever she wants.
Somehow, I guess, that conversation was a turning point, I'm sure there'll be many turning points over the years. Bittersweet is the only way to describe it.
She's thinking about her T1 and she's thinking about how she feels and what she needs to do to take care of herself, and that is good.
No 9 year old kid should have to think about how to keep themselves alive.
No kid at any age should have to think about how to keep themselves alive.
No one at all should have to put so much thought into not dying.
|This kid,especially, shouldn't have to think about dying.
Screw You Diabetes, Screw You.