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.

Not All Statistics Are Boring

I struggle every November to think of ways to use my personal social media accounts to raise awareness.   I've posted general diabetes facts.  I've posted symptom checklists.  I've shared bits of our story.  I've received very little reaction to any of those posts, and those who did 'like' or comment were almost always people whose lives were also touched by this disease.

Thanks to JDRF, this year is different.  The above infographic can be created by  going to this page on the JDRF website.  Type in a few dates and details and, voila: a personalized diabetes stats sheet. 

I posted this on Facebook on Tuesday and it's still generating conversation today. People are genuinely moved by these numbers.  They're big numbers, and somewhat alarming if you really look at them. These numbers invoke, in a unique way, both surprise and empathy.  She's had how many fingersticks and she never complains about it?  You've lost how many hours of sleep and you're still (usually) functional?  The people closest to us see some of it, but I imagine there's almost nobody who realizes how much sleep we lose or how often my kid has a sharp object pierce her skin.

Last November, I wrote about how awareness-raising within our small circles of friends can not only generate more personal support for us which, let's be honest, we could always use; but also how it can also create a ripple effect, raising awareness and advocacy on a larger scale.

This year I'm grateful to JDRF for providing me an extremely effective way to start several meaningful conversations about what life with diabetes is like.

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.

Sleepover Dilemma

Sleepovers at friends' houses always pose dilemmas: uncertain menus, late night activity, relying on the Dexom for alerts of overnight issues,  heavy breakfasts, and more; but this weekend was the first time I found myself in a quandary right here at home.

Home game sleepovers aren't completely uneventful, diabetes-wise.  We've had to check blood sugars at 2 or 3 a.m. with another child in the room, and even had to give juice or corrections.  To my knowledge the friend I desperately try not to step on as she dreams in her sleeping bag has never woken up.  Snacks and bedtime involve a more structured routine than most of our guests are used to but they are, of course, kind and flexible as any good friends would be.

Sunday morning presented a new quandary though.  I woke up at 7, and my daughter and her friend were, as expected, still silent in my daughter's room.  The Dexcom read 80, straight across.  At 7:30 it read 76 straight across and it was still very quiet in the house.  At 8, it alarmed:  69.  Here's my thought process:

At 2 a.m., the friend would certainly sleep through my barging in, but at 8 a.m., chances are good I'm going to wake her up.  I don't want to do that.  The sensor is only a day or two old and it seems to have been running a little low since we revved it up.  It's probably just still a little bit off.  And with the margin of error on all blood sugar readings if  I wasn't running in there at 76, how different is 69, really? But, of course, what if it's off in the other direction and she's really 50 and I don't do anything about it? If she's 50, that's bordering on dangerous.  But maybe it'll go back up.

By the time I'd hemmed and hawed over all of this, it was 8:20 and the Dexcom alarmed again:  under 50.  It buzzed four times since we had it set to vibrate first, then to beep if the vibration went unacknowledged.  Now at this point, I'd been listening very intently, hoping for any sounds of life from the bedroom.  I was pretty sure I'd heard my daughter moving around in her bed (there's a squeaky spring). So I put Dexi in the bathroom, on a shelf which backs up to the head of my daughter's bed.  A minute or two later it blared, "beep beep beep beep!" 

At which point I heard her get up, grab her meter and check, and get back into bed.  It was still quiet.  The rattles, clicks and beeps of the blood sugar check hadn't woken her friend.

Within 10 minutes, the line on the Dexcom graph started going back up.  My daughter's friend woke up a few minutes before 9, and they came out for breakfast soon thereafter.

"I guess you corrected when Dexi alarmed at 8:20?"

"No- I was 88.  I just got back into bed."

Should I have acted sooner?  Probably.  A severe low blood sugar emergency would have been worse for the friend to wake to than me creeping around her air mattress.  But am I  glad I didn't wake her up for nothing?  I am.  What would others have done in my shoes (or slippers)?  I'd love to know.

Support

I'm going to take a little liberty along the time-space continuum and continue Thanksgiving weekend one more day. While we traveled this weekend, I was reminded how thankful I am for support along our diabetes journey from our family and friends. We were very fortunate to spend the weekend with people who are concerned and interested in a helpful way when it comes to my daughter's diabetes. I'd like to share one example of the kind of friendship I feel very blessed to have enjoyed.

We visited a couple this weekend with whom we've been friends since long before we had children. They and their 2 kids are great people and there are many reasons we enjoy their company and friendship.  As I think of so many people with diabetes who spent this past weekend surrounded by family and friends who simply don't get the whole diabetes thing, I'm ever more thankful to have these and other people in our lives who do.

These friends were at our hospital bedside after diagnosis, with funny gifts for my tiny daughter and treats and hugs for us.  They were kind enough to feed and shelter my husband for a night during our hospital stay since we'd been helicoptered to a city over an hour from home.  This hospitality allowed him to get some rest, to have a civilized shower and to bring some calm and perspective back to a challenging situation.

When we returned for appointments at the diabetes center where my daughter was diagnosed, we were invariably invited to this home afterwards.  I'd arrive at 4 or so, exhausted from the appointment's conversations and from the travel. I'd have an over-done toddler in my arms who'd just screamed through a blood draw.  We'd be escorted to their great playroom and I'd be handed a glass of wine and asked how things went this time while my daughter was handed an amazingly distracting toy or craft.  My friend would work with me ahead of time to plan a dinner my daughter could enjoy despite the NPH and humalog shots of that era and their related dietary limitations. There were always string beans, my daughter's favorite vegetable- at least when cooked al-dente the way our friend always makes them. Husbands would arrive from work in time for dinner and I'd leave the house relaxed as my daughter dozed on the drive home.

Several years ago, we moved a few hours away and don't see these friends as often.  Yet when we do, they remain concerned and interested in all things diabetes.  They still go out of their way to make their home and meals hospitable to my daughter when we arrive, saving carb counts, stocking seltzer, and asking questions.  We spent a great evening with them last Friday, catching up on all sorts of things.

And, of course, enjoying the string beans.

We Need to Talk

If I ask a colleague to donate $10 to my walk for a disease she doesn't understand, she's unlikely to give.

If the big debate in town is whether or not to save money by eliminating school nurses, and my neighbor thinks that nurses just give out band-aids and call parents of sick children, she'll vote differently than I would.

If I tell the parents that my child knows everything she needs to know to be safe at the party, cross my fingers, and go home, they'll assume that what she's dealing with is no big deal.

Earlier this week I shared my diabetes awareness month goal of opening up a bit more about diabetes during regular every-day kinds of conversation: awareness-raising on a very small scale. These conversations feel, at first pass, inconsequential in the grand scheme of things.  They seemingly pale in comparison to traveling to Capitol Hill to meet legislators or starting a foundation.  I think, though, that I've been underestimating their importance.

In addition to the potential for more support for me, and for my family, those conversations have the potential for a big ripple effect.

Someone who's heard my story about a scary low blood sugar incident is more likely to keep an extra eye on my child at their house.

Someone who's heard our harrowing diagnosis story will be better prepared to support a friend or coworker whose relative is newly diagnosed.

Someone who knows the amount of time and money it takes to keep just one child with diabetes alive will be more attuned to legislative issues related to health care and medical research.

Someone who knows how very tired and occasionally anxious diabetes makes us will be more likely to buy that paper JDRF sneaker at Marshalls.

If I'm really doing it right, someone who hears our story might even pass it along to a friend who will be more likely to do all of those things too.  And if every one of us whose lives are touched by diabetes were to share a story now and then about why it's a big deal, imagine the ripples we could create.  We need to talk.

Awareness of the Need for Support

When my neighbor's husband died suddenly a couple of weeks ago her driveway filled with cars.  The florist truck was on autopilot to her address.  People arrived carrying trays of food.  Her mailbox was full of cards.

As I pulled in my driveway this morning after school drop-off, she was leaving her house alone, headed for a day of work.

When my daughter was diagnosed with diabetes during Christmas week 2002, we were surrounded by support.  By the time we'd returned home from the hospital,  Santa and his helpers had filled our living room with toys.  There were cards and phone calls from afar.  Relatives and local friends brought us food and kept us company as we adjusted to this new and challenging way of life.

When my daughter called from the nurses office because she was low, again, last Friday, nobody was around to offer a hug.

My neighbor's grief has not gone away because three weeks have passed.  Similarly, our family's need for support has not gone away because nearly thirteen years have passed.  Both have become less visible, and less urgent.  But we'd be much better off not traveling this road alone.

November is Diabetes Awareness Month. Grateful that raising awareness is not up to me alone, I intend to narrow my focus down to just a few avenues of awareness-raising.  One area I've struggled with over the years is being open with even our closest friends about what living with this disease is really, really like.

Therefore, my personal goal for this November is to be just a little bit more candid about the frustrating, scary, and painful parts of having a child with diabetes.  Maybe just once when I meet up with a friend and she asks how I am, I'll go ahead and share that I was up half the night treating low blood sugars.  Or maybe I'll one-up a story of a cantankerous teenager with a description of what happened when I attempted to engage my child with a 300+ blood sugar in conversation yesterday afternoon.  Maybe, given the opportunity, I'll even share that there are aspects of having a kid with diabetes which terrify me.

Friends and family are no longer at our door offering hugs and asking how they can help.  The major crisis has long passed.  We appear to be doing just fine: good grades, extracurricular activities, nice friends, weekend adventures.  But it's my goal this month to raise awareness among those who care most about us that it's not all rainbows and unicorns.  That we still need their support.

The People In The Orange Hats

We raised about $6000 for JDRF this month.  We had many donors, and their concern for my daughter and for everyone else who lives with diabetes does my heart good. I'm optimistic about where those funds are going.  Great advances in diabetes treatment are coming down the line in the near future, and my daughter's life is going to get easier. 

But - and please don't tell the fundraising people at JDRF this- I'd be almost as happy about our walk if we'd raised only $600, or even $60. 

What particularly sticks with me this year is the feeling of support.  We had more walkers for our team than we've had for several years.  As is our tradition, each of our walkers wore an orange hat (my daughter's favorite color) with our team name on it.   At any given point, each of us could look forward or behind us, and most importantly next to us, and see orange hats worn by people who care about us. 

They were my daughter's friends who walk her to the nurse's office when she's low.  They were her friends' parents, who keep an extra eye out for my daughter when she's in their homes and who we're happy to count as our own friends too.  Family and great family friends rounded out the contingent of people who surrounded us for the morning.

There will be days in the coming year when diabetes throws us for a loop.  On those difficult days, it will do our hearts good to look back and remember Saturday's walk. Our friends and family won't be right next to us for the three juice box night, or the long endocrinologist appointment, or the stomach bug that turns into a diabetes nightmare, or the days we simply feel like we can't do one more site change or math out one more dinner plate.  But when I've reached the end of my diabetes rope, I intend to look back to our walk and to remember the people in the orange hats.

 

Wandering Around Town

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.

Behind the Scenes of an Average Friday

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.

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.

Watching

This summer marks the first when my daughter is sometimes hanging out at the town pool without me. She and her friends gather there in the afternoon after their assorted camps and volunteer activities.  They bring snacks or money for the snack bar.  They play volleyball, swim, and walk in circles around the pool grounds to see and be seen.

For me, it's an exercise in trust.  First, I have to trust that our general routine and a healthy helping of good luck will keep her safe from any diabetes emergencies.  Second, I have to trust her that she will keep an eye on herself and be aware of impending lows so that she can treat them.  Thirdly, I have to trust that she will choose and bolus for her snacks wisely.  And fourth I have to trust that she will 'remember' to reconnect her pump within a reasonable amount of time after swimming.

I still like to go to the pool too.  On a hot day, some time in the lap lanes is my favorite form of exercise. When I can arrange to meet some other moms there in the late afternoon, it's fun to catch up. When I go, my daughter still sits with her friends and does her own thing.  Which is interesting to watch.

One day as I watched, she ate a cookie, and bolused for it.  She reconnected her pump after swimming, clipping it onto her bathing suit.  She checked her dexcom after getting out of the water the second time and grabbed a handful of goldfish crackers, later telling me she was 80 and felt like she was going down.

Another day I watched as her friends waited patiently for her to reconnect her pump and gather her little bag before they headed for the snack bar after a swim. She bought sour patch kids and bolused for them, as evidenced by the blood sugar of 77 when we got home for dinner.

Would I rather she bring a container of grapes or pre-portioned packages of whole grain crackers to snack on?  Of course.  Do I worry about whether she's going to forget to reconnect her pump and end up super high?  Yes.  Do I wonder if she's relying too much on the dexcom and not actually checking with a meter while she's there. Sometimes.

But here's the thing:  She's coming home with nice looking dexcom graphs and excellent pre-dinner blood sugars.  She's obviously responsibly reconnecting her pump and bolusing for the junk food.  She's noticing when she's trending low and grabbing a handful of something to stop the slide.

Really, this is a great opportunity to practice dealing with all kinds of diabetes issues on her own.  She'll make mistakes this summer, I'm sure.  I've made my fair share of them over the past 12 years when I've been in charge.  Nobody's perfect.

But so far so good.

Birthday Day and Other Heavy Eating Occasions

My daughter's friend had a birthday last week.  It was on the same day as mine.  The kids have found a way to skirt the school nutrition policy of 'no outside food for celebrations' by bringing in treats to share at lunch. So lunch that day included oreos, hershey kisses, doritos and munchkins.  To her credit, she ate the sandwich and grapes I packed first, but she sampled the rest as well.

For dinner we went to a Thai restaurant and she had an uncountable portion of pineapple fried rice. We came home and had mini cupcakes and cannolis for dessert.

Our household diabetes philosophy (yours may vary) allows sweets, and even junk food.  Birthdays include cake.  S'mores over the fire pit or a trip for italian ice are part of summer fun.  A little bag of chips for the walk home is o.k.  Most days include cookies or a non-dairy frozen treat before bed. Taken one at a time, or even two in one day, we're o.k. with both the questionable nutrition of it and with the diabetes challenges.

'Everything in moderation' is the general idea. But on days when moderation goes out the window, I'm left feeling torn.  Should we ever let her eat this way?

"Yes!  You can eat anything except poison...or cookies made with poison..." is one side of the coin. But she really can't eat anything and maintain the same kind of blood sugar numbers she does when she eats healthy, countable things.  Twenty carbs of oreos and doritos is not the same as twenty grapes. Half a restaurant portion of pineapple fried rice and a bakery cupcake simply can't be counted and dosed for as accurately as portions prepared, weighed and measured at home. Add the 'one more dorito because everyone else is still eating,' or the picking all the pineapple out of the fried rice despite bringing home 'half,' and the challenge increases.

Still, I lean towards letting her learn from her mistakes over outright forbidding her from eating like this. She'll encounter days with heavy eating potential for the rest of her life, so perhaps helping her develop a healthy sense of how to handle them is the answer.  Last week's birthday day was an example of how not to handle it.  And she knew it.  She was upset that her blood sugar was high for hours.  Between that lengthy high and the general junk food overload, she had some lingering indigestion into the next day.

Sometimes she makes better choices.  Last weekend, she said no to lunch out with a friend before an evening birthday party because it would consist of too much uncountable food in one day.  She's come home from parties and told us she was the only one who ate the proffered grapes or salad to balance out the junk. She will report with alarm how many cookies or cupcakes some kids consume in one sitting.

I guess it's like all things diabetes, really.  We do our best.  We try to fit the diabetes stuff into what we consider a normal, healthy lifestyle.  We try not to let it ruin our fun.  We learn from our mistakes.  And we're never quite sure we're doing it right.

Snack Time

I hear a lot about teenage boys.  They're always hungry.  You can't keep anything in the house.  Buy out the snack aisle before you even consider inviting their friends over.

What nobody every clued me in to was that the same is apparently also true of teenage girls.  Maybe it doesn't last as long, or maybe I'm encountering a particularly hungry bunch.  But these kids are ravenous.

A bunch of friends came over on a recent half day.  Each one had bought a sandwich or a bagel at one of a couple of eateries on the way home from school.  They sat around our dining room table and ate them. Completely.  It wasn't long ago that I'd have 6 girls here for lunch and there'd be half bagels, large portions of sandwiches or the bulk of the pizza I'd ordered leftover.  On this day, there were napkins and crumbs.

Half an hour later my daughter emerged from the basement playroom (hang out room? rec room?  what do we call it now?).  "I'm bringing down the popcorn chips."

Within half an hour she returned with a bowl containing only a hint of popcorn dust and absconded with over a pound of grapes.

Pretzels were next, enough to fill a large sized salad bowl.  Crumbs and salt covered the bottom half an hour later when it was returned for a refill, and again when it was cleaned up as the girls went home.  Presumably they, like my kid, proceeded to eat full dinners and ask for dessert.

The whole experience felt like a cross between feeding cookie monster and a pack of wolves.  Food disappeared instantaneously.   Crumbs and dust were left in the wake.

The diabetes link in this post, you ask?  It's a challenge to bolus for this kind of grazing.  Up to a year or so ago, I just didn't allow it except at the occasional party.  Snack time involved a bowl, careful counting or measuring cups, and a nice solid bolus.  And on a regular basis, that is still the preferred procedure here.

Somehow, though, she managed to count and bolus enough of her snacks to end up with a very good blood sugar by the time her friends went home and she started asking what was for dinner.

From The "It Gets Easier" Files: Sleepover

My daughter came home Friday with a request.  She'd been invited to sleep over at a friend's house that night.  Could she go?

The first sleepover terrified me.

A few subsequent ones caused significant anxiety and loss of sleep.

There was one for which we had to say no.

But this one felt surprisingly easy.

It was at the home of her oldest friend, at whose house she's slept several times before.

It's just a few blocks from our house.

The mom would never hesitate to call me about anything.

She'd eat dinner at home first and then go.

The house is always stocked with plenty of pre-packaged snack choices with their easy to use nutrition labels.  Since sleepovers and snacks go hand in hand, I'll take well-labeled junk food any day.

She'd have Dexi with her, which wasn't the case at the earliest sleepovers.

So aside from considering the next day's plans and the potential ramifications of sleepover-related lack of sleep, there wasn't much to think about.

"Yes. You can go." was an easy reply.

She checked on the way to her friend's house.  She texted me at 11 with a 'bedtime' number.  She texted me when she woke up at 7:30, and at before breakfast with a carb counting question.

The half an hour or so before 11 when I was struggling to keep my eyes open until her goodnight text was long.  The 45 minutes I was awake waiting for her good morning text was longer. Overall though, it truly felt like no big deal.

Would I still say no to an overnight 2 hours away?  Probably.  But small steps are being made for both of us, and that's a good thing.

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 .

Time Suck

A sampling of annoying events from the past few summer days:

I received a lunchtime phone call from the beloved nurse-free music program.  "I'm 72.  How should I bolus?"  The question took several minutes to sort out.

While at the pool, she had to stop to disconnect or reconnect her pump while her friends were already running for the diving boards/ping-pong table/snack bar.  This scene repeats several times daily.

She had to leave her friends in the pool to treat a low blood sugar.

We delayed leaving for the pool to replace the tape on the Dexcom.

We delayed leaving for music to add tape to the Dexcom.

I spent half an hour online searching for tips to keep the Dexcom stuck when frequently submerged in a swimming pool, lake or ocean.  (Suggestions are still welcome...).

We expected to do a quick site change, only to find that the pump battery needed to be replaced and the supply of wipes needed to be replenished from the downstairs closet.

A desire for a summer peach turned into an ordeal involving the food scale and the calorie king app since it was the first peach of the season and we couldn't remember the carbs.

A group of friends descended on the kitchen for a snack break.  She was the last to eat, as usual, since she had to stop to check her blood sugar, read the nutrition label, and bolus for her food.

A cure and/or a bionic pancreas will some day dramatically improve my daughter's health.  That, in the big picture, is the reason we want these things.

The other benefits are indisputable though.  When the day comes, we'll go through every day without any of these kinds of stops and detours.  She'll stop being the one lagging behind at the pool.  She'll dive into her friend's pantry right along with everyone else.  Diabetes won't delay the fun.  We can't wait.

We Had To Say No

"You can do anything other kids can.  Diabetes can't stop you."  For the past 11 years, there have been very few exceptions to that rule.  This time, though, we had to say no.

My daughter was invited to a birthday celebration, overnight, at a friend's vacation home two hours from here.  This (very brave) family invited eight or nine girls to come celebrate.

Let me begin by saying how happy I am that she was invited.  I'm always incredibly grateful when no assumptions are made by other people about when and where diabetes becomes an obstacle. No matter how difficult the ensuing conversation was, I love that my daughter was included.

I thought carefully about this invitation before telling my daughter about it, weighing how to approach the conversation.  In the end, I let her read the invite, and respond however she chose to.

"That sounds so fun.  I don't think I can do it, though.  I wish you could come too. But that might be weird."

"I wish I could too, but even if it wasn't weird, Daddy and I set aside that Saturday for {insert awful activity daughter would love to have an excuse to get out of here}. I'm really sorry."

As I said, I considered the possibility carefully. Maybe she could do it.  She could text me pictures of the food.  She'd be wearing the Dexcom.  She's responsible.  She's 12!  Then came the what-ifs, and they were plentiful.   What if the pump site failed?  What if the Dexcom conked out?  What if she forgot to check often or missed the Dexcom alarms since she was having so much fun?  What if she needed glucagon?  What if she ate more or less or differently than what we agreed on?  What if she forgot to plan ahead for activities involving exercise? What if her low blood sugar symptoms got lost in the chaos of a crowd of partying tween girls? I would be 2 hours away, a 4 hour round trip.  For over 24 hours. She's only 12!

The birthday girl and her family are great people. But while our families have spent time together, my daughter hasn't spent time alone with them. There would be a big learning curve, diabetes-wise.  A party at their house a few blocks away?  Absolutely.  Two hours away?  As much as she wanted to go, even my daughter knew this was impossible.

We talked at length about all of this.  It precipitated a conversation about when something like this might be possible.  We came up with a list of things to work on.  They include being able to do her own site change, knowing how to give a shot if she needs to, becoming more proficient at and confident in counting her own carbs, actively planning for periods of exercise, and consistently responding to alerts on her Dexcom.

My daughter finds this list overwhelming.  Understandably.  But then we looked back.

"Three years ago, did you ever think you could go to a sleepover party?"

"No."

"And now you've been to a few.  Did you think you'd be able to go to things like the school social or a movie and pizza birthday party without me there to help you with your diabetes stuff?"

"No."

"Six years ago, I came and stayed with you at almost every playdate.  Look at all you've learned to do. You'll figure it out, when you're ready.  Soon enough, something like this will be no problem.  And until then we're here to help you as much as you need."

The conversation continued with a tirade about the awfulness of diabetes, a few tears, and the promise of finding a few minutes of fun amidst the aforementioned boringness of the weekend in question.

In the end, I think we made the only decision we could.  We had to say no. I wish it were otherwise.

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.

Absolutely Not?

Would you allow your Type 1 eleven year old child to go to another child's house after school if you did not know the parents well, or at all?

Had you asked me less than a year ago, the answer would have been 'absolutely not.'  I may also have added a look which indicated I thought you should have your head examined just for asking.

Yet a couple of weeks ago, my daughter was invited to go to the home of a girl whose family I don't know.  It was last minute.  Several other girls were going, including a few of my daughter's closest friends.  They were going to work on team t-shirts for an upcoming school event.  She went.

Maybe you're thinking, 'of course she did.'  Maybe you're thinking I'm the most irresponsible parent in the world.  I'm still somewhere between those two myself, but I think it was the right decision.

I let her go because:

• I do everything in my power to never have to say 'no,' when it's qualified by 'because you have diabetes.'
• It's important that her middle school experience includes meeting new people and testing the waters of independence.  These aren't her favorite activities. I felt I needed to encourage her willingness to go. 
• I had it on good authority that the parents were kind and responsible people.
• If she'd made the shirt at home by herself I would have had to help her.  The project involved some sort of aerosol fabric paint. It sounded terrifying.
• She's responsible with her diabetes tasks when she goes to friend's houses, so I trusted she would check and bolus as needed there.
• She had her cell phone with her and could text or call me at any time.
• Close friends were going with her, who know about her diabetes.  They are girls I knew would support her if she needed it.

You know how this story ends.  It ends the same way as most stories about children who are gently allowed brief flights from the nest.  She bolused for some pretzels.  She had fun making her shirt.  She enjoyed hanging out with new friends and old.  She came home happy. 

For my daughter, now was a reasonable moment in time to allow this small yet significant step.  She didn't go because she was eleven, or in fifth grade, or even because I have a healthy fear of fabric paint.  She went because she was ready. We spend an extraordinary amount of time helping our children with diabetes develop the skills and confidence they need to care for their own diabetes.  Each is ready for a different step towards independence at a different time. Yet at some point, the time comes for each of us when we must clutch our cell phones in our fists and allow them to go out there and use what they've learned.