What's That?

Little kid (pointing at Dexcom receiver on my daughter's belly): What's that?

My Kid: I wear it to keep me healthy!

(Little kid swims away/ continues eating popsicle/ asks about something completely different)

This conversation has repeated itself several times this summer at our town pool.  These are usually kids who know my daughter's friends (neighbors, kids from camps they've volunteered at, relatives). These kids enjoy the opportunity to hang out with the 'big kids' for a while in the water or on the volleyball court. My daughter chose her stock answer at the beginning of the summer and so far it's worked every time.

These conversations are in significant contrast to those she's had this summer with new peer and adult acquaintances.  These people want (or the case of the band director, for example, need) more complete answers to what the devices she wears and uses are, and how they work.

Through middle school, her social circle remained fairly static.  As she starts to spend more time with the band kids, and with the people her middle school friends are collecting as they start new activities and endeavors, the explaining has begun again and the conversations have become longer.  Recently examples include, 'why do you still have to poke your finger if you wear the dexcom?' and my daughter's personal favorite, 'what's your blood sugar usually?'  These are a little harder to answer but they're thoughtful questions. 

I'm glad her friends are interested in and concerned about her diabetes.  High school means she'll be spending lots more time with her friends.  The more they know, the better.

Though the conversation is certainly simpler with a 4 year old.

I Can't Remember

There are some diabetes facts (and  'facts') which are always readily available to me for instant recall.

I'm always able to remember that ritz crackers have 2 carbs each, that walking around a museum results in a steady decline in blood sugar, and that the total amount of insulin needed to fill the canula for a site change is 0.7 units. These and many other oft-used bits of information will forever be embedded in my mind.  I'll likely still remember them well beyond their usefulness to me.

Yet there are other bits and pieces which I am simply unable to retain.

We've had 12 Thanksgivings with diabetes, but every year I have to look up carb counts for squash and pie.  Similarly, corn on the cob doesn't stick with me from summer to summer.  Worse yet, I find myself looking up Italian ice if it's been more than 3 days since the last cup.

Doctors' visits regularly stump me with questions like, 'When was her last blood work/dental appointment/eye exam?'  Or 'What is your copay?'  If I could even remember ahead of time that I'd be asked, I could at least look them up and make myself notes. Instead I have to slowly work my way through the recesses of my memory to come up with an answer, or an approximation there-of.

When was the last site change?  Half the time we have to look in the pump's history to find out.  Did I call  to change the amounts on the order for pump supplies after the last box was delivered or do I still need to do that?  Did this bill for the lab work cross in the mail with my check or did I never get around to paying it?  When is nurse's day again? 

Fortunately, none of these are unanswerable questions.  I can turn to calorie king, the memories of our diabetes devices, my thoroughly annotated planner, the checkbook, and the internet. 

Which is good, because on the whole it is impossible to remember every detail about diabetes.  At least if I also want to remember anything else.

Baring It All

I'm incredibly proud that my daughter is willing to bare it all at the pool.

Said no mother ever.

Except me.

She's not really baring it all all, of course.  But she decided this spring that she really wanted a bikini.

Many sentences uttered at our house now start with, "All of my friends are...," and I was informed this spring that all of her friends would be wearing only bikinis at the pool this summer.  This was a big step for two reasons:

While some girls wear bikinis from the beginning, my daughter never had, so this was a milestone in terms of growing up.  Despite our concerns about finding bikinis appropriate for a tween/young teen, we found two very cute ones.  Ruffly tops and bottoms with plenty of coverage are out there if you look long enough.

The second concern, of course, was the increased obviousness of the diabetes paraphernalia.  About this, my daughter decided she simply didn't care.  Wearing a bikini trumped any concern about the dexcom sensor taped to her belly and the insulin pump clipped to her bathing suit.

My daughter has so far had more people ask her about the dexcom and  pump at her morning summer music program (where it's generally in her pocket or clipped to her waistband under a t-shirt) than at the pool. Perhaps we'll keep a running tally.  When asked, she has a couple of short answers prepared, and is able to move on without much fanfare.

The only comment I've heard so far was from a mom I know tangentially, a friend of a friend, who came up to me and said, "I just wanted to tell you I'm so impressed with her wearing a bikini and not caring what anyone thinks.  I think that's just great."

At 13, it's an impressive decision to make. As a rule, these are the years of trying to fit in, the years of "all my friends are."  So I'm proud of my daughter for baring it all at the pool.  I'm proud that she's comfortable with what she looks like, taped on contraptions and all.  I'm proud that she's willing to answer the inevitable questions.  I'm proud that she's not going to let diabetes stop her from doing something she wants to do, however relatively trivial this particular decision may be.

I still have mixed feelings about this. Watching my little girl walk past me at the pool in her bikini makes me do a double-take every time.  But it has nothing to do with the dexcom sensor.

Tetherball

A couple of weeks ago, my daughter found herself explaining the need to keep her pump attached somewhere under her costume for the school musical.  It brought to mind this post from a few years ago:

My daughter had a softball “workout” a couple of weeks ago.  All of the girls playing this spring were summoned to demonstrate their skills at batting, catching pop-ups, and fielding  grounders.  Groups of 5 at a time entered the gym to be evaluated by at least that many adults.  Based on their skills, the girls were sorted into evenly-matched  teams. 

Fielding grounders is my daughter’s best skill.  She can hit when she gets in a groove, but given the amount of snow on the ground, she hasn’t swung a bat since October sometime.  And she’ll readily admit that she can’t catch a pop-up beach ball, let alone softball.  So she was excited to demonstrate her infield skills. 

I was not allowed in the room, but as she tells the story, here’s what happened:

Someone bounced a grounder to her.  She was ready, leaned down, and got it.  Then her pump fell out of her pocket.  She threw to first, grabbed the pump and stuffed it deeper in the pocket of her sweats.  From behind her, comes the coach’s voice.  “Can I hold that for you?” 

Diabetes has been part of my daughter’s life since she was 13 months old.  And it’s always been interesting to watch how she responds to people responding to it.  She tends to be very matter-of-fact about the whole thing, and is developing an increasing vocabulary to answer questions and to respond to potentially awkward situations.

“Um…well…actually, it’s attached to me.  So I don’t think that would work too well, but thank you.”

I couldn’t have said it better.  

Of course, on the way home, we became hysterical envisioning her fielding grounders while the coach tried to hold the pump. 

Tetherball, anyone?

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.

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.

In A Nutshell

We've all had this experience.  Maybe it's with a new aquaintance at playgroup or at a little league game.  It could be a curious bystander at the gym or the office.  Perhaps it happens when running into an old friend at a party, or a long-lost relative over the holidays.  Whatever the circumstances, this person wants to know about your, or your loved one's, diabetes.

"How's she doing with that?"

"Is it under control?"

"What's that like to deal with?"

How to answer these well-meaning questions?  Ideally, the asker will come away more knowledgeable about Type 1 Diabetes.  The asker will feel compassion for you and/or your child. The asker will understand how un-simple these seemingly simple questions are.

Sometimes circumstances require a quick answer.  My stock response is a variation on this theme: "It isn't easy.  Every day is a little different. We have to work hard at it, but she's usually good about everything and we keep up with it all as best we can."  Vague?  Very.  Yet it clarifies that, no, it's never 'under control,' it's a daily challenge to 'deal with,' but that we're 'doing' o.k. with it all.

Sometimes this ends the conversation, particularly with complete strangers or very new aquaintances.  More often there is a specific follow-up question.  Common ones include:

How often does she have to check her blood sugar?

Are there things she can't eat?

Does she have to wear the insulin pump all the time?

Somehow I'm never prepared for how surprised people are by my answers.  That my daughter pricks her finger at least eight times every day and that we must do complicated math problems for every meal are just part of our reality.  Of course we get up every night to keep track of her blood sugar.  Yes she does indeed have to visit the school nurse's office at least twice a day.

As much as I'd like to, it always seems too much to lead with these little bits of our reality.  They certainly give a much clearer picture of what our days are like, but they're hard to consolidate into a quick, simple answer.

I'm often left wondering how others answer these questions.  Feel free to comment if you have a way you've found to sum up your 24/7 diabetes life in a nice little nutshell.

Visible vs. Invisible

Diabetes is often referred to as an 'invisible illness.'  If you met my child in the grocery store yesterday, you would never have known she had Type 1 Diabetes.  Maybe with some serious eavesdropping and a base of knowledge, our discussion of the carbohydrate counts of different cereals would have given her away.  On the surface, though, she didn't look different from the other kids at the store.  Today she has no pockets, so she's wearing her pump outside her skirt.  It's a bit more obvious.

For many years, we bought only clothes with pockets, or overalls, or dresses.  These completely concealed the pump.  We did this not because we were embarrassed of my daughter's disease.  It wasn't even because we didn't want to answer the questions which inevitably arose on the rare occasion her pump was revealed. 

We did it because my child was little.  All of her friends and classmates were little too.  In case you haven't been around little kids lately, I'll remind you that every one of them is interested in electronic objects; particularly those with buttons.

Initially, at 3 when she got her pump, it was in a fanny pack on her back in a case with a little luggage lock on it.  We kept the keypad 'locked' as well.  She spent her toddler and preschool years wearing overalls, jumpers, and leggings with long tops.  The pump was out of sight and out of mind, both for her and for the curious children at the playground.

She's still most comfortable with the pocket option.  It's physically the most comfortable for her, and the pump is easily accessible that way.  On occasion, however, there's no pocket to be found in those cute shorts so decisions need to be made.  Now that her friends are past the age where they're going to run up and start poking at her pump, she can choose fashion over function in her clothes. 

On any given day, she can choose whether to make diabetes visible or invisible.

Questions and Answers

She has diabetes.
Type 1, not type 2.
The crying and puking
Gave us our first clue.


She must stop and check
Eight times every day.
Yes...it most certainly
Gets in the way.


That thing on her back?
Or in her left pocket?
An insulin pump.
Not a launch for a rocket.


So all that technology -
It must be a perk?
But yet it takes three of us
To make it all work.


Her pancreas is broken.
It cannot be fixed,
But that doesn't mean that
All sugar is nixed.


The cupcake? The pizza?
Yes, she can eat it.
With insulin and vigilance,
Surely, we'll beat it.


Daytime and night time
The hours between.
Is she high is she low?
Have the carbs all been seen?

The questions - keep asking
But pretty please know
Diabetes is with us
Wherever we go.


Until there's a cure
It won't go away.
It's a primary part of
Each night and each day.


This one falls somewhere between 'what they should know Friday,' and the 'creativity wildcard' prompts for: