The latest bit of independence I've allowed my daughter is the freedom to wander around town with a friend or two. The middle school is in the middle of town, and our house is just a few blocks from the main drag. After school, the girls will sometimes stop to buy a snack before walking home. On a half day or a weekend, they may walk around the park or go for lunch.
We had this past Wednesday off for Yom Kippur. My daughter and a friend walked around the park in the afternoon and headed home via the convenience store.
The phone rang an hour and a half into this expedition.
"I just stopped to check and I'm 62. We're sitting on the grass at the edge of the empty lot."
"You had juice?"
"Yes- a whole box and I bought mini York Peppermint Patties at the store. The whole bag is...let me check..."
"49," piped up a familiar voice in the background.
"Yup...49 grams...thanks. I'm only going to eat about half of it. It's a lot."
"O.k. Stay there for another few minutes and check to make sure you're coming up. Then you should probably bolus for some of the candy if you're going to eat it on the way home or you'll end up high."
She was fine. She was fine because she stopped to check her blood sugar. But also because she had a friend with her. A friend who knew about her diabetes, and who'd even learned to read a nutrition label.
I worry about her wandering around out there without a diabetes-savvy adult. But in a way, I'm happy when something does go awry. Because it gives her a chance to prove she can take care of it, and because it's so reassuring to know that her friends have her back.
On Friday, my daughter got up, had breakfast, got dressed, and went to school. She had a test and a quiz there, ate lunch, and walked the track during gym. After school she and a few friends stopped at a pizza place and went to the park for an hour before walking back to a friend's house. Once home, she practiced piano, watched t.v., ate dinner, and enjoyed dessert while watching baseball. She was in bed before 10 and asleep soon there-after.
Sounds like an average 13 year old day, right? Let's look a little closer:
On Friday, my daughter had her finger poked at 2 a.m. and was woken up to drink juice. When she got up in the morning, she poked her finger again, chose among a limited selection of high fiber/high protein breakfast choices, and did some math problems. She programmed her insulin pump and finished making breakfast. She wanted to wear a skirt she likes, but decided that since a busy afternoon was planned, she'd be happier with her insulin pump tucked in the pocket of shorts so she wouldn't have to worry about it slipping off her waist band.
She poked her finger after gym at school and was detoured to the nurse's office for juice before heading to take her quiz. She finished the quiz while the rest of the class started the next lesson. Before lunch she went back to the nurse to poke her finger again and program her pump using the note her mother put in her lunch saying how many grams of carbohydrate were in there. A friend came with her to the nurse and they both arrived at lunch later than the other kids.
After school, she poked her finger again before walking to the pizza place. She really wanted to try the garlic knots. This decision necessitated a phone call and several texts with her mother to discuss how many carbs would be in this snack. After deciding they were close in size to half a mini bagel each, she programmed her insulin pump and ate. She and her friends walked the block to the park and after walking around for a while, she poked her finger again. She needed to eat some glucose tabs before walking to her friend's house.
When she got home, she poked her finger again, gave insulin for a high blood sugar, and drank a large glass of water to counteract the effects of the high. Between piano practice and t.v. time, her mother used an enormous spring-loaded contraption to insert a sensor under her skin. She hugged her stuffed rabbit.
She poked her finger again before sitting down for dinner. After sitting down at the table, she had to get up again to get a measuring cup to make sure she ate the amount of rice she would take insulin for. She then programmed her insulin pump to deliver a dose for the meal.
During a commercial in the baseball game, she poked her finger and counted 10 mini nutter-butters into a small bowl. She debated whether she was still hungry and whether she wanted to add some apple slices to dessert and decided it was too much trouble to count and dose for them. So she put on her pajamas and her insulin pump pack, since pajamas don't have pockets.
At around 11, her finger was poked one more time before her father went to bed, but she didn't wake up. It had been a busy day...even busier than most people would imagine.
A piece I was asked to write for Disney and Lilly Diabetes' joint website, T1 Everyday Magic, was posted last week. It's called, "10 Signs You're No Longer a T1D Newbie". The top 10 format was a great vehicle by which to organize a list of milestones familiar to those of us who've been at this a while and also seemingly attainable to the new parents on the block. By design, it lent itself to adding humor to the mix.
As I reread the list, I was struck by a theme which runs through the piece, a common denominator: You know you're no longer a 'T1D Newbie' when your anxiety level becomes manageable. You don't panic about every high and low- you just move on and treat them. You are able to leave your child at a party or sleepover and concurrently do something besides sitting around worrying about it. You've assimilated the carb counting and the organizational needs into the background so that the rest of life can go on in the forefront. Every-day life levels out to a calmer, more even keel.
The anxiety never goes away completely. And sometimes it's still unavoidably prominent. The first time the kid takes a new step towards independence or tries a new athletic activity is going to be stressful. The 400's and 30's are still going to keep you up at night, even if they happened at noon. Every time you don't get the anticipated check-in text from your kid, you'll assume the worst. The truth is that while it really does get easier (which is an important message for parents of newly-diagnosed kids to hear), it never gets easy. While the initial ceaseless anxiety about every little thing dissipates, it remains a recurring theme.
Having been asked to provide an encouraging piece of writing, I didn't add that last paragraph to my top 10 list. But as I add it here as an important footnote. If you're looking for the more positive, funnier ways you'll know you've gotten the hang of things, click here!
I met the new school nurse last week.
Each time gets easier, though.
As she gets older, my daughter is less dependent on the nurse. By 7th grade last year, her usual interaction in the nurse' office was down to a quick 'hello.' Gone are the days of needing daily 1:1 help to check her blood sugar and give her lunch bolus. Her nurse needs are now limited to troubleshooting high blood sugars, helping with treatment of lows, occasional supervision of a site change or pump battery replacement, and ability to administer glucagon should the need ever arise.
While we want the nurse to know about diabetes and to be helpful in a true emergency, the thing my daughter needs most in the nurse's office is to feel comfortable. She needs to know the office is a safe, friendly place to go every day to check. And even more importantly, she needs to feel good about going there when she's having a problem.
If first impressions mean anything (which I firmly believe they do), this year's nurse is a keeper. She was calm. On her first day in a middle school of over 700 kids, she was calm. She was also kind, smiled easily, and asked a few very appropriate questions. She talked about making sure my daughter took care of her diabetes as independently as possible while having all of the help and moral support she needed. She seemed like the kind of nurse who will make small talk with her through a low. I don't think she'll hesitate to call me with a question.
As I left the office, the nurse had these parting words: "I'll tell her, but you should tell her too: more than anything I want her to know she's welcome to come here any time. My door is open. I want her to feel comfortable here."
I think she will.
My daughter and I spent a week this summer on a church youth group trip. We stayed in a little white church, sharing a room with 5 middle and high school aged girls (the boys had their own space). It was an experience in communal living in many ways, including sharing more about my daughter's diabetes than we usually do.
We're not embarrassed about diabetes, but at the same time we tend to keep it undercover when possible. Ordinarily when there's a low in public or the need to check before a communal meal, only the most diabetes-savvy eye would know what was going on. We weren't even to our destination yet when this way of doing things became impossible. The caravan of cars stopped for dinner on the way there, and we ended up at different tables, yelling blood sugar numbers and estimated carb counts over the heads of our fellow travelers.
On the first night, Dexi was on high alert for a borderline low blood sugar. The kind where she thinks it's hovering at 65 and the finger sticks all say 85 and she can't be convinced she's wrong. Except this was happening in a room with 6 other people who were trying to sleep, all right next to each other. I'd never realized how incredibly loud the vibrate mode on the Dexcom is, or how loud the faint little beep is when then the blood sugar reads out on the meter. And when I gave up and opened a juice box so that Dexi and I could both just get some sleep? That straw wrapper was deafening.
We had a few moments when we had to step aside from work or play to treat lows. Our brightly colored meter case was visible at all times from wherever we were working or playing. Math was done out loud at meals and my daughter hoisted the cookie package over her head nightly to check the carbs.
The experience made me contemplate why we tend to keep diabetes out of sight when we're not with our closest friends and family. For me it has to do with not wanting diabetes to get in other people's way. We don't want everyone to stop what they're doing because my kid has a low blood sugar. We don't want people to wait to eat because my kid still has to check or read the label for the taco shells. We don't want everyone in the room to worry when they hear the Dexcom buzz.
It turns out, that two things happened over the course of the week, neither of which had to do with diabetes causing an undue burden on our fellow travelers. Primarily, despite having to deal with diabetes out in the open, people rarely noticed. There were plenty of other people there, doing plenty of other things, and my child stepping aside to check her blood sugar, or even the buzzes and beeps of the first night went, for the most part, unnoticed. And secondarily, when people did notice, they wanted nothing more than to help. It turns out that taking a break from the evening basketball game and chatting with my daughter while her blood sugar came up, or running back to the kitchen to grab the nutrition label were not deemed onerous tasks.
Anyone who knows me knows I'm not too good at accepting help. For anything. But people with diabetes sometimes need help. This was a great experience in reminding my daughter that sharing a little of her diabetes with others isn't a bad thing, though she was already better about it than I was. It's a lesson we both needed to learn, but which will serve her particularly well as she continues to grow up and to be out and about in the world without me.