In Other People's Hands

I met a woman the other day who was an occasional substitute nurse at the middle school.  While this was the first time we'd met, she knew my daughter well.  There are others like her.

I have sent my child to school, on field trips, to birthday parties, to marching band camp and more.  The older she gets, the more people we collect who've helped her with her diabetes care. Some I know well, some I've been introduced to, and some I've never met.

I wonder if the people in whose hands I've left her fully understand how I feel about them.

These people have taken my child's life in their hands. Maybe they don't realize that, or look at it that way. I certainly wasn't going to point it out in quite those terms to the preschool director who agreed to accept her into the program. Those weren't the words I used when I thanked the parents who invited her for her first sleepover. But these, and many more adults, have been aware that having my daughter in their class, in their home, or in their field trip group necessitated an extra level of responsibility and vigilance.

If taking on that level of responsibility wasn't enough, these people have, quite often, gone above and beyond what I would have expected. Parents have contacted the birthday party venue for carbohydrate counts on food. Teachers have requested to be glucagon trained for my child's safety. Chaperones have sat with her while she stopped to check her blood sugar. Guidance counselors have called about 504 accommodations I never would have considered. Nurses have called just to reassure me that everything was okay. I'm incredibly grateful for every one of these thoughtful acts.

Being the parent of a kid with diabetes is a huge job. Being a kid with diabetes is an endless challenge. We're incredibly grateful for the people who step in to ease the burden in whatever ways they can.

An Audience

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.

The Buffet Table

Personally, I love a good appetizer and snack focused buffet table.  Interesting dips, meatballs, crackers with good cheese and foods encased in puff pastry are a few of my favorite things.  Top it off with a good cookie table and it's perfect.  If I'm there alone.

With my daughter around, a couple of hours of happy grazing turns into a couple of hours of math and negotiating.

When there is a buffet table, one is expected to graze.  You have a mini hot dog, meet the relative in from out of town, try a couple of dips, chat about the school play, make your way to the meatballs where you spend time with the party host; and on it goes.

The first problem with this scenario is that each snack requires a math problem and a bolus.  When every conversation is interrupted with 'I took 4 meatballs, mom,' or 'I just ate 7 corn chips,' it's hard to carry on a conversation. When I'm interrupted to nix the plea for a 4th cookie, my already limited cocktail party-related social skills take a big hit.

The second, but related problem is an extension of the standard regular-people buffet party challenge.  If I have a drink in one hand and a little plate in another, I already must find a third hand to eat.  Add the meter remote to that third hand and I'm out.  Even with the understanding that every mother develops a third hand (a.k.a. the ability to juggle well), this scenario becomes impossible and I remain hungry or thirsty so that my kid doesn't end up high.

So a buffet party turns into me with a drink OR food in one hand, following my kid with the meter remote while trying to make small talk and perform carbohydrate equations in my head at the same time.

Ironically, I suppose, we throw one of these parties every year.  The difference is that I painstakingly create a list of every food with its carbohydrate content and post it on the fridge.  My daughter takes the meter remote and is able to do her own juggling act while I play hostess and eat my fair share of mini quiches.

In a perfect world, we'd be handed a cheat sheet at the start of every party, and one of these cool plates .

An Ode to String Bags

We started with a diaper bag

So many years ago.

Then there was a mommy tote

With toys and snacks to go.

Of late it's been my giant purse

To carry all the freight.

But really couldn't other folks

Help carry all the weight?

With a glance upon the closet shelf

A solution was at hand.

Forty seven string bags

Of every color and brand.

To ballgames, hikes and theme parks,

To museums and parties we'll go.

Taking our turns to carry the stuff

For the perpetual diabetes show.

Armed (and Dangerous?)

The birthday party challenges keep coming this spring.  The latest was an invitation to a celebration at a restaurant serving a buffet brunch.  Mulling it over, I shared the invite with my daughter, offering her an alternative option. If she didn't want to manage the diabetes aspects of a buffet brunch alone, she could join the group after brunch for the pool party which would round out the afternoon.

"I really think I can do it!" was the overwhelmingly self-confident response.

What could I say?

What was the worst that could happen?

How would we ever get to an overnight road trip with friends without first allowing smaller steps like this one?

So she went to a very nice restaurant with beautiful water views to have brunch with a few of her friends and two brave parents.  Armed with her pump, dexcom, cell phone and calorie king app, she was otherwise on her own.

After a two mimosa brunch of my own and a comforting mid-afternoon ice cream stand stop, I picked her up at the pool at 5:45.  She was smiling from ear to ear and recounted in great detail all of the food she'd enjoyed.  She loved the restaurant, being with her friends, and playing volleyball at the pool.

Diabetes-wise? The Dexcom graph included dots on almost every level of its screen.  By 6 it just read 'high,' and stayed that way for over an hour despite two major corrections. The meter's remote showed that over 100 grams of carbs had been bolused for at brunch, and that corrections had been given at 2 and 4 for numbers in the 150-200 range.  She had unplugged the pump twice to swim but not for long since the water was "freezing."

As far as I can tell, she did all that she could, and I made sure she understood that.  A discussion of the desserts she sampled leads me to believe she under-calculated their carbs but since miniature pastries aren't on our regular menu, she was forced to guess.  The real problems didn't start until almost 4 hours after brunch, probably when the fat from the {still unclear to me number of} pieces of bacon she ate met the 105 + brunch carbs and the handful of pretzels she bolused for at the pool.  Truth is, she could easily have hit 400 whether I was with her or not.  Buffets are hard.  Mystery foods are hard.  Add into the mix frigid pool water which tends to spike her, unplugging to swim, and a healthy amount of excitement, and the results are not entirely unexpected.

All we can do is try to learn from the experience.  Mini pastries have more carbs than expected and should be consumed in limited quantities.  Balancing high carb and fatty foods from the buffet with a few lighter options might mitigate disastrous blood sugar results.  Following a heavy meal with an adrenaline-producing dip in ice water while the pump is unplugged shouldn't be a regular occurance.

You may think it was dangerous to send a 12 year old with diabetes to navigate a buffet brunch.  Perhaps a little bit.  But really, on some level, it's dangerous to send a 12 year old with diabetes anywhere.  The best I can do is to arm her with the tools and knowledge she needs to take care of herself, and with confidence. Despite the results, this was definitely a confidence-building experience.  For both of us.

What If?

 This is a story about something that happened last weekend.  It is not advice, medical or otherwise.  Except maybe to be extra-careful when walking on frozen lakes.

'Does your daughter have any medical conditions?'

I mumbled a little.  "Nothing that's relevant here."

'Too young to have much of a medical history, huh?'

'Mmm,' I said with a tight smile.

The EMT continued to treat the facial injury.

We were at a family resort for a girl scout troop overnight.  Our last outdoor stop of the day was to explore the frozen lake.  I saw it happen in super slow-mo from about 30 feet away.  My daughter was walking towards her friends when her feet went out from under her and her face hit the ice. We're unable to reconstruct where her arms went, but they were of no help to her mouth.

She bit deeply into her left outer lower lip. The left side of her mouth was swollen and riddled with abrasions and braces marks inside and out. There was a lot of blood. We took her inside, got ice, washed up her face and rinsed out her mouth.  The bleeding wouldn't subside.  We were told there was an EMT on site.  I decided, particularly being far from home, that it would be smart to have it looked at carefully so I wouldn't wonder later if more should have been done.

My daughter later described our time with the EMT eloquently.  "He had trouble finishing his sentences.  And he kept repeating himself."  He was perfectly kind, and gentle, and competent.  But 20 minutes into his work, he was still cleaning the cut.  He had reassured us that she didn't need stitches and that her teeth seemed fine. He was finally getting out antibiotic ointment and bandages.  Then he asked the question.  "Does your daughter have any medical conditions?"

I looked over at the rest of my daughter's girl scout troop, so patiently and lovingly gathered with the other parents, waiting for her.  I thought about bumper cars, and dinner, and the evening fun to come.

I ran through the diabetes-related possibilities in my head.  I knew I should be honest. But could anything either he or I would gain from the potential conversation be worth the 20 minutes it would take to have it?  I mumbled my answer.

It felt really weird.  As I denied the diabetes, her life flashed before my eyes: the traumatic events of diagnosis, the countless endocrinology visits, the pump and CGM stashed under her winter layers.  What if none of that had happened?  What if this lip injury was one of the most significant medical events of her young life?

Eventually we were walking towards the bumper cars with an adorable stuffed lion her friends chose for her from the gift shop (conveniently located adjacent to where we met up with the EMT) when my coat pocket vibrated and beeped. A glance confirmed the inevitable:  240, double arrows up.  The adrenaline was at work.  Diabetes was, indeed, relevant to this situation just as it is to just about every other one.

But I refuse to let it slow us down.

Helicopter Parenting

I'm one of those parents.

I'm the last one to leave the birthday party and the first one back. If I leave at all. 

If parents are allowed on the field trip, I'm signed up.

I'm on the sidelines of every softball game from pre-game practice 'til the end and I insist on stopping by the bench at least once during the game to check in.

I hunt her down at the town pool to ask her if she's o.k.

She must text me when she starts walking home from school.  If she's not home in less than 20 minutes, I'm headed up the street to look for her.

During school dances, I like to plan an outing with my husband or a friend at a restaurant across the parking lot from the entrance to the gym.

If she's somewhere without me, I'm constantly texting to check in.

I watch her while she sleeps.

People judge those parents.  (Actually, people judge just about every kind of parent but that's a topic for another day.)  'Their kids will never gain any independence.'  'Their kids will be wishy-washy'  'Their kids will have no sense of self.'

For the judgers out there, two things to consider:

First the obvious, based on the theme of this blog.  You may not know why a parent is hanging around the roller skating party or watching their child like a hawk on the museum field trip.  This disease is unpredictable, and when put in unusual situations like the ones I've described, my daughter is very likely to have issues with her blood sugar for which she needs a trained adult's help.  I hover because there's a real and ever-present risk, beyond what you can see, to my child's safety.

Second, the interesting part.  The same words have come up at every teacher conference since preschool. My daughter is described as responsible, self-aware, and self-confident.  How did this happen with me hanging over her for her entire life?  I can't say for sure but I try to strike a balance when I can. When it's safe, I encourage independence.  She walks home from school with a friend and her cell phone.  She's been using a paring knife since she was 8.  She attends sedentary birthday parties with uncomplicated food by herself.

When I feel, for her safety, that I must hover I try to be as invisible as possible.  I don't roller skate with her (to be fair, there's more than one reason for this decision). I stand back while she hangs with her friends on the field trip. I'm at the umbrella table with the best view of the pool, but I'm usually reading my book.  She knows that I'm there to help her with diabetes, not to be incessantly involved in the minutia of her life.

I often wonder if I'd be one of those parents if it weren't for diabetes.  It's impossible, of course, to know. I've been hovering over her since before she could walk.  It will get harder as she gets older, and I'm grateful for today's technology which makes hovering from a distance much easier.  Hopefully I'll continue to be able to strike the balance between being available to help and letting her spread her wings.

Discretion

By now many of you will have read this Miss Manners question and her response.

In a nutshell, when asked whether it's o.k. for a person with diabetes to test and deliver insulin in public, she said it was not; that both were best relegated to the restroom.

The diabetes community has responded with a torrent of messages to Miss Manners, comments following her column where it is published online, facebook posts and other forms of outcry.

While I certainly do not believe blood sugar testing should be relegated to a restroom, I do believe it should be done surreptitiously. Therefore, the responses to Miss Manners which read along these lines: 'If anyone has a problem with it, they should look away' bothered me a little bit.

Maybe it's where I'm coming from.  My daughter was diagnosed when she was 13 months old.  We've been through every stage of childhood with this disease, surrounded by other kids in the same stage.  We've wanted to avoid freaking out the entire playgroup, or the family at the next table over in the kid-friendly restaurant.  Therefore we've always taken care of the diabetes stuff, to the extent possible, on the QT.  At a restaurant, and in the classroom, she checks her blood sugar without fanfare, in her meter case, in her lap.

She doesn't disguise her actions out of embarrassment.  She does so out of consideration for others and honestly, a little bit, out of self-preservation. We understand that some people are upset by the sight of blood.  We understand some families would prefer not to spend their dinner out answering 47 questions from their 4 year old about what's going on at the neighboring table.  And, as a rule, we don't want to spend our dinner (or party or zoo visit) answering those 47 questions either.  She understands that setting up her testing supplies and displaying her bleeding finger might be a distraction for the child next to her in math class.  It's about balancing her own needs with the concerns of those around her.

My daughter checks her blood whenever and wherever she needs to.  She just tries to do it in a way that isn't obvious. So far, in 11 years of public testing, nobody has stared or made derogatory comments. The only people who seemed to have noticed at all are the people we've met who also have diabetes.

So, gentle reader, here's my response:

The issue is not where you perform your diabetes tasks, it's how considerate you are of those around you while you do so.  If they don't notice what you're doing, they'll have no reason to be concerned.