Our Angel Ornament

Thirteen years ago today, on the winter solstice, the darkest day of the year,  my daughter was diagnosed with diabetes.  It was four days before Christmas and we were supposed to be exchanging gifts at my in-laws' house before travelling for the week.  Instead we spent the day in two different emergency rooms and the night in the pediatric intensive care unit, curled together in a hospital crib, terrified by what was transpiring and by what we were learning was ahead of us.

 

In the midst of that dark day, this angel appeared, courtesy of the hospital's chaplain.  Angels, as we're reminded this time of year, are bearers of good news.  They remind their listeners to "fear not!"  They offer up explanations for confusing situations.  They bring light into the darkness.

For me, even thirteen years later, Christmas is still bittersweet.  There are moments every year when am reminded how close we came to losing our child to diabetes.  There are moments when I reflect on the surreal Christmas we spent at the hospital with Santa landing on the helipad to deliver toys and prime rib dinners in the hospital cafeteria.  There are moments when I look back on singing round after round of Away in a Manger to calm my baby during blood draws and examinations. There are moments when I consider the life which that week's events left us with, and wonder how we've managed to live it for so many years. 

But when I unwrap this angel ornament each year I am reminded that even in the darkest moments there is light.  I'm reminded as I hang it on the tree that in the midst of the confusion of that day in 2002, there were wise and helpful people who diagnosed my child, treated her appropriately, and saved her life.  I'm reminded each time it catches my eye that throughout that terrifying week, and through the years that followed, there have been supportive voices all along the way saying, "fear not."  I'm reminded as I pack it away each January that there is good news on the horizon, of treatments which will make diabetes less and less of a burden in the years to come.

I remain unable to sing Away in a Manger without becoming glassy eyed.  There are moments every Christmas season when memories of that dark week play out through my mind and leave me feeling angry and bitter, or sad.  But a glance at our angel on the tree serves as a reminder to fear not, that there is light shining through the darkness.

 

Impressive

“You should probably check before you go to bed.”  It was late and every second before climbing under the covers felt like an eternity but it seemed smart to head off any problems before we slept.

“191.”

“Not bad- do what it takes.”

“It says to give .5.”

“Go for it.”

We relied on the Dexcom for updates, in lieu of setting an alarm, and Dexi slept through the night.  Morning blood sugar was around 140.

I realized days later that I had said nothing else to my daughter about any of this.  On a normal day, these were okay numbers, nothing to celebrate, nothing to panic about.  On this day they were impressive, and I forgot to be impressed.

These numbers came after our annual Christmas open house. The buffet table included chicken fingers, egg rolls, mini hot dogs, teriyaki meatballs, three or four kinds of chips and crackers with assorted dips and salsas, raw veggies and fruit, and at least five desserts.  My daughter visited this spread several times, and I think she sampled all but one of the desserts.

We’ve been hosting the same party every year since Kindergarten, inviting families back to our home after Santa lights our town's tree.  For the first couple of years, I made my daughter a plate and bolused her for it before sending her off to eat with her friends.  We'd do round two of this routine when the cookies were served.  By third grade or so, she graduated to making her own plate but she still needed to have me calculate the carbs.  Last year was a mixture of her bolusing for the foods she knew (ritz crackers, my homemade cookies, grapes, the egg rolls from Costco) and needing to ask for help with the more complicated items.  This year, for the first time, she was completely in charge of her own carb counting.  This was amazing for two reasons:  first, I got to focus on being hostess and spend more time socializing with our guests, and second, the end results were much better than usual blood-sugar-wise.


It makes sense, really.  Who better to keep track of the carb intake than the person putting the food in her mouth?  Who better to dose the insulin than the person watching the Dexcom graph while she dances around the basement to Christmas music?  Reaching the point where we're both comfortable with her managing her diabetes in these types of situations is a huge plus for both of us.  Especially if she does so as successfully as she did the other night.  It was impressive.

I'll have to remember to tell her so.
 

The Great Lancet Quest

Every time we travel, I restock the diabetes box.  This time was no different.  I counted out the site change items, threw in an extra 50 test strips and added a new 8 pack of juice boxes.  The flashlight was there for overnight checks and the spare glucagon was still good.

Off we went for a weekend exploring a city my daughter had never visited. On the first morning in the hotel, my husband (our household's official lancet changer) went to swap it out.  "Where are the lancets?" 

"They should be in the diabetes supply box in a snack-sized zippy bag.  It's probably in the big Ziploc with the site change stuff?"

By the time every one of us had rummaged through the stash of supplies, we knew there were no spare lancets to be found.

The initial thought was, 'maybe we could make it- it'll only be 2 more days.' But what if we dropped the lancing device and it popped open?  And certainly it would be better for my daughter's fingers to have a new, very sharp lancet at least every morning. Knowing that there was a CVS a block from our hotel, and that lancets were the least expensive of our supplies to replace, we decided to stop on the way to our morning destination.

We wended our way to the pharmacy department, at the back of the store, where the diabetes things have been kept on nearby shelves in every drug store I've ever visited, and there they were.  Locked in a case in front of the pharmacy counter.  Our usual lancets.  I got the pharmacist's attention. "Can I get a box of lancets, please?"

"Well, here's the thing: the key broke off in that case and I can't open it anymore.  What kind do you need?"

"One touch ultra soft?"

He looked in pharmacy area, hoping he had some stocked for a prescription purchase.  No such luck.  "There's another pharmacy on the next corner, and one on the corner after that," he said pointing.  "I'm sure you can get some there."

On to Rite Aid we went, and back to the pharmacy area. There were unlocked, but there were none of our usual brand.  After a careful assessment of the boxes of Rite Aid brand lancets, we learned that they would fit our lancing device, and that there was a size which would (allegedly) prick the finger with a similar impact.  My daughter was extremely apprehensive.  She wasn't convinced that these new ones wouldn't hurt more or be less effective in drawing blood.  But after weighing the options of buying these and continuing on to our fun tourist destination, or finding another pharmacy, we bought the lancets.  They worked just fine.  And the best part (and probably the ultimate selling point to an anxious kid)? 



Colors!

Two-fer

Over the past month or so, my daughter's pump screen has been getting progressively dimmer.  At first, I thought I was experiencing yet another symptom of being 40-something.  But soon my daughter was complaining about it too.  Procrastinator that I am, I figured I'd find the time to call eventually.  The final straw was when the screen got to the point where we barely see it outdoors.  I called Animas on a Friday afternoon.

"We'll overnight you a new pump," the technical support person told me after a couple of her suggested quick-fix tricks were unsuccessful.

The pump arrived by 9:30 on Saturday morning.  I carefully transferred all of the settings from the old pump to the new one, double and triple checking my work like my third grade math teacher always insisted.  The last step was to pair our current meter remote with the new pump. I successfully paired the two up, with their screens showing each other's serial numbers, seemingly as a mark of true love.

Fast forward to lunch.  "What's going on?  Why won't this work???" my daughter grumbled as I washed the grapes.  "When I put the strip in, I get the timer thing-y and then the screen turns black and then the thing just turns off."

We took the batteries out and put them back in again, and tried a different vial of test strips.  We could power it on to check the history but once a test strip was put in, it shut down.

After lunch (don't fret- we have an extra meter or two kicking around- she was perfectly safe), I called and explained the situation to a person at Animas with the title, "meter specialist."  The meter remote would have to be replaced too. "Will not accept the test strip," was the specialist's official diagnosis.  I think it was broken-hearted at the disappearance of it's old pump partner myself, but the guy at Animas is the expert of course.  Meters being apparently less important than pumps, I was told the replacement meter was to come on Tuesday, signature required.  I tried to negotiate this detail since the (significantly more important and expensive) pump did not require my signature, but it seemed there was no choice.

"Put a black x on the back of the meter before you return it," the meter specialist requested.
Should we have held some sort of service of remembrance while we did so?

Tuesday came and we were more excited than we expected to be.  We missed the remote features, particularly at night if a correction was needed.  Rolling a sleeping 14 year old over in bed to find her insulin pump was no easy task.  Noon came and went- no meter.  My daughter came home from school at 3:15.  "Did the meter come?"  Nope.  At 5:30, I called Animas.

"It shipped and my tracking number shows it's out for delivery.  Let me give you the number too.  It should come tonight."

My husband came home, we ate dinner, and soon it was 8:15.  No meter. He called UPS with the tracking number.

"I'm showing it's on a truck and the truck is still out. Our days are already running long because of holiday shopping."

"I understand that," my husband said, "but this is a medical device for a child who is eventually going to bed...I'd like it to be here before that happens."  The UPS customer service person could offer nothing more than sympathy.

My daughter climbed into bed around 9:30 with her book.  At 9:45 (AT NIGHT.  PM.) the doorbell rang and my husband signed for the meter I'd been at home waiting for since 8 a.m. and which, according to the UPS tracking system had been on the truck since 4:30 a.m.  We set up the meter and paired it with the pump. They've gotten along splendidly ever since.

I hope, at least, that the previous pump and meter were reunited and that they will be laid to rest together.

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.

Raising Awareness Delicately

"I thought she couldn't have pie."

"I just read an article about cinnamon and diabetes.  It sounds like a supplement could really make things easier for you."

"Did you see the story about the guy in (insert neighboring state here) who just crashed his car and died and they think it was because he was experiencing low blood sugar?"

'Tis the season to spend time with the loved ones we don't see every day: relatives at the holiday table, friends who come into town once a year, neighbors we talk at length with only at the annual open house.  Conversation starters like the ones above are likely.  

When posed by someone with whom we have no biological or emotional attachment, the following responses might be deemed acceptable:

"You thought wrong." A little half-smile is optional, to soften the impact.

"I think you might want to read a little more about that one," delivered with a subtle shake of the head.

"Well that's terrifying...thanks so much." Walking away could be the next step.

When posed by a misinformed close friend or by a relative we spend a good amount of time with, it's probably worth it to spend some time really explaining the ins and outs of why what they've said is inaccurate and/or upsetting to us.  We can assume this person cares about us and doesn't want us to be upset, and that it will benefit all of us to have a substantial conversation in order to avoid a repeat in the future.

But what to do with dear Aunt Susie who you see, at best, twice a year?  These kinds of answers work for me:

"Ah...but what's Thanksgiving without pie?  She can take extra insulin for it."

"Hmmm...I've read about that too.  Unfortunately it's not for the kind of diabetes she has."

"Oh dear!  I find those kinds of stories so scary- I avoid them if I can.  But even though she's only 14 I've started impressing upon her the importance of checking her blood sugar before driving."

My goal is to remember that people like our fictional Aunt Susie are asking out of love and concern.  Aunt Susie certainly means no harm, and I certainly don't want to spend Thanksgiving dinner or the duration of the cookie exchange party arguing with her.  So a brief, accurate and kind reply works best, raising a little awareness and then moving on quickly...hoping that politics isn't the next topic she decides to bring up.

Banting!!!

My daughter has the opportunity through her school to participate in a scholastic competition called "National History Day." If you want to know lots about it, you can click the link.  But in a nutshell, students in middle and high school extensively research a topic within the year's announced category.  Working alone or in groups, they can create an enormous display board, a documentary, a website, a performance or a paper based on their topic.  They attend a regional competition where they present their projects, and from there can progress to the state and national levels.

This year's topic is 'Exploration, Encounter and Exchange.'  The sample topic list given to the kids was all over the map, with obvious choices like the pilgrims arriving in the new world and the work of Margaret Mead, to the seemingly only vaguely relevant like Pop Art and China's Explosion into Gunpowder.

"We're thinking of doing something that has to do with science," my daughter reported when she came home from school last week.  She and the girl she's teamed up with were considering Jane Goodall, Margaret Mead, Steven Hawking and ... Frederick Banting, discoverer of insulin.   "Exploration in Science:  Jonas Salk and the discovery of the Polio Vaccine" was one of the sample topics, and it got her thinking.

Yesterday they made the final decision: a website about Banting!  He was exploring scientifically, encountered a life-sustaining treatment, and the exchange is still occurring- allowing people with diabetes to live increasingly long and healthy lives.

I'm excited about this for many reasons: 

She'll learn about the guy who discovered the stuff that keeps her alive.

She discovered that this classmate she's working with has 2 relatives with type 1 diabetes, so a new little diabetes community connection has been made.

I get to spend the next 4 months immersed in information and ideas about something fascinating and near and dear to my heart.  This is refreshing since the knowledge I gained from last year's topic of Toussaint Louverture will benefit me only in trivia contests.

She has begun in November, and will continue into the spring, to spread awareness about diabetes.  Her project will be viewed by her classmates, teachers, regional competition participants and judges. 
And awareness is important, not only in November, but always!

Hope

Saturday was World Diabetes Day. 

Our family took this picture and posted it on all of our respective social media accounts:



 

 

 

It stood out, it appeared, in contrast to the French flags and Eiffel towers populating our screens. I began to wonder...  Should I have dug up a family photo from our trip to Paris instead?  Should I have kept World Diabetes Day to myself in light of Friday night's terrorism?  Was I being selfish?

 

For two reasons, I decided to leave it:

 

World Diabetes Day is an international call to action to help people with diabetes, particularly those who cannot help themselves.  It's a call to find ways on all kinds of levels, from the United Nations to national governments, to towns, to non-profit organizations to individual actions to bring diabetes education, medication and care to everyone who needs it across the globe.  That didn't feel selfish at all.

 

And the message on our hands?  It seemed appropriate for both occasions and for many more.  In a world where terrorism is increasingly common and where hatred feels impossible to overcome, what more can we wish for the people being terrorized?  The same thing we wish for children who can't afford enough insulin or for places where people are dying all too soon from diabetes: Hope. 

 

 



Shouldn't They Already Be Aware?

The per diem doc who was in our pediatrician's office on Halloween when we stopped by for a flu shot (trick or treat?) asked my daughter if she'd eat candy that night or just hand it out.  "I'll eat some," she replied enthusiastically. 

"Oh- so you'll cheat," he replied.

"Well, not really," she mustered, looking surprised.  "I'll bolus for it."

"With the pump, it's pretty easy to enjoy the treats," I added, wondering if I'd somehow stepped back in time 20 years.

"O.k.," he said skeptically as he headed off to the next examining room.

We've encountered dreadfully unaware medical professionals more times than I'd like to count.  There was the nurse at the children's hospital's same day medical center who, when we arrived at 8:30 a.m. for the procedure, asked if we'd checked my daughter's blood sugar in the past 24 hours.  There was the lab technician who had access to my child's diagnosis and yet reassured her that once the blood was drawn she probably wouldn't have to deal with a needle again for years.  And the pharmacist with whom I had a lengthy conversation about "keystone test strips" (only available in Pennsylvania?) and why any child could possibly need them- because children don't have diabetes.

Finding the words to explain diabetes is often difficult.  We've found it even more difficult when the lack of awareness comes from medical professionals who really should know better.  But find the words we do, so that hopefully the next kid who shows up at the lab center won't have to.

The Benefits of Becoming Visible

This year's JDRF walk had what we thought was a particularly cool new twist.  The walkers with diabetes were given the special blue shirts pictured below:

 

 

 

Suddenly we were aware (there's that big November word again!) of all of the people around us who had diabetes.  People of all ages and from all walks of life were walking around in these blue t-shirts, instantly identifiable as PWDs (people with diabetes) to the world around them.  People in blue shirts were nodding and smiling at each other.  Parents pushing a stroller containing a toddler in a blue shirt had other parents of blue-shirted people coming up to them and offering support.  A blue shirt made the wearer the star of the show, if only for a couple of hours.

 

There are some plusses to having an invisible illness- I've covered them here before.  But along the lines of these shirts and of JDRF's T1D looks like me campaign this November, there are some plusses to being visible once in a while too.  A big one is PWD's and those who love them finding each other for support. 

 

Are there ways, even without the blue shirts, we can be more aware of and supportive of the people we know who are on this diabetes path with us?  Can we be more attuned to picking strangers with diabetes out of the crowd?  Even a smile and a nod go a long way towards not feeling alone.

 

 

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.

 

Halloween is Fun

Anyone who tells you Halloween with diabetes is no big deal is stretching the truth.  Ditto for anyone who tells you Halloween with diabetes is the worst thing ever.  It's somewhere in between.  Here are some suggestions based on how we've tackled the Halloween challenge over the years:

Make the costume a big deal.  I made several costumes for my daughter over the years even though I do not sew and have never been the crafty type.  But she got to be exactly what she wanted to be despite there being no commercially sold options.  And she knew it was a very special and unique situation for mom to have a needle and thread in hand.

Decorate your house, get some cute Halloween books, and enjoy the silly-spooky parts of the season.

Boo!

Participate in Halloween events.  Carve a pumpkin.  Go in costume to the Halloween story time at the library, or the town Halloween parade.  Host a Halloween party. 

Go trick-or-treating.  And point out that the fun of trick-or-treating is not only in the candy, but in walking around the neighborhood after dark with family or friends.  It's showing off your costume, and seeing what the littler or bigger kids on your block are wearing too.

Have a candy plan.  It doesn't matter what it is, just have one so expectations are managed. Ours (yours will be different) is this: 

Eat a few pieces on Halloween night- she's always low from walking the neighborhood so the amount will vary, but she usually needs some starburst or skittles to keep her going and has a couple of chocolate things upon returning home.  Save one piece per how many years old you are to eat slowly over the coming week or two- this is a completely arbitrary rule I invented when she was about 7, but it has remained the law of the land.  Keep the snack stuff- pretzels, chips, etc.  Pre-braces, also keep the sugarless gum.  Give mom and dad a few of their favorites and give grandpa all of the york peppermint patties.  Turn in the rest to a local dentist who will pay $2 per pound and who will then ship it to the troops oversees.

Yes...the whole season is a one landmine after another of candy and cupcakes and donuts punch that looks like blood and more candy.  And when you live a life of 'everything in moderation,' it means you'll find yourself saying 'no' on a regular basis.  We've found, though, that saying 'yes' to all of the other fun stuff can soften the 'no' quite a bit.

Writing the Letter

We've participated in a JDRF Walk every fall since my daughter was diagnosed.  It's an annual challenge to pen a brief and compelling letter, unique from the ones of years past, in which I explain why diabetes is awful and why donating to JDRF is, in our opinion, a helpful response.  Here's this year's letter, without the opening paragraph with the walk day details, and with the name of our stuffed bear with diabetes substituted for my daughter's own name:

About a mile into our second walk to cure diabetes, Ruby, who was about to turn 3 years old, turned around in her stroller, looked me in the eye, and said,

“Why are we doing this, anyway?” 

“To raise money for people to learn about diabetes and hopefully find a way to make it easier to live with it. Or even to fix it.”

“Oh…okay.”

That’s why we’re still doing this.  And we’re encouraged. 

JDRF is funding research for biological and technological advances which show true promise.  The updates have been coming thicker and faster over the past couple of years, with encouraging progress on a variety of fronts.  Most promising, in our opinion, is the possibility that a ‘bionic pancreas’ system which would regulate Ruby’s blood sugar with little input needed from her, will be available before she graduates from college. 

Even at 3, Ruby immediately understood that the reason we were taking this seemingly endless walk in the windy drizzle was a good one.  Even at 3, she knew that she didn’t like the pokes and prods of diabetes.  She didn’t like the need to eat when she wasn’t hungry, or to avoid the donut holes at playgroup.  She knew she didn’t like how uncomfortable she felt with low or high blood sugars.  Maybe she even knew that she didn’t like how anxious and distracted diabetes sometimes made her parents.

Ten years later, we’re still walking, for reasons which aren't much different.  We’ve walked in different towns, with different people.  What’s remained the same is that we’ve walked closer and closer to our dream of a safer, healthier, easier life for Ruby. 

We’d like you to walk with us this October, in body or in spirit.

While writing the letter is a challenge, watching the response makes it worth it.  I'm pleasantly surprised every year to be reminded that friends, coworkers, family and even tangential acquaintances care about the impact diabetes has on us and on so many other people.  We've raised about $2000 this month and have a team of 15 people walking, with the possibility of more of each to come.  I'm glad we're doing this! 

Where My Rope Ends

The phone rang at 10:30 in the morning again.  I spoke with my daughter, trying to calm and reassure her as she finished her juice box.  When I hung up, there were tears in my eyes.

This kind of reaction doesn't happen often for me.  I'm ordinarily even-keeled and able to roll with the punches diabetes doles out on a daily basis. 

It's not the dramatic, emergency-type  moments that send me over the edge.  I'll treat a 30-something with great calm, and move past a night of high post-birthday cake blood sugars with a deep breath.

It's when I can start to see it in my daughter's eyes, or in this case hear it in her voice, that I lose it.

This was the fifth or sixth time she'd had to leave music class or gym (back-to-back favorite classes) to treat a low blood sugar.  It was the third day in a row.  She was mad. 

I'd been making what I thought would be helpful insulin adjustments. I'd even downloaded the Dexcom, which is a rare event around here.  But there she was.  With the nurse, while her two friends worked on the guitar trio as a sad duet.

And I sat less than a mile away, helpless, wishing things could be different.

Little Things

Some years, the 504 meeting has been formal and dedicated to big-ticket issues like being allowed to use a glucometer in the classroom or the procedures for standardized testing accommodations. 

This years issues are more trivial:

When a nurse is assigned to be present at an extra-curricular activity, could someone let my daughter know who it is?  Somehow this seemingly important step is being missed. My daughter usually takes care of her diabetes stuff on her own at after-school events and texts me if there's an issue, but if someone's being paid to help her, why not at least let her know who it is and where to go for help?

And, in what may seem to be a counter-intuitive follow-up question, could we please just put in the 504 that she is allowed to use her cell phone for diabetes purposes at extra-curricular activities?  The reality is that she does, and that the staff in charge of these programs know she does and are perfectly okay with it.  The school cell phone policy is that kids can use their phones at after school activities with permission from the person running them.  All I'm really asking is that that permission be granted through the 504 instead of her potentially getting caught texting me by an unfamiliar teacher involved in the play practice.

I'm incredibly grateful that things are going well and that there's nothing major to discuss.  But with an opportunity to sit down and advocate for my daughter to have a school experience as unencumbered by diabetes as possible, I figure it doesn't hurt to bring up little things.

 

Not Just Any Bag

We've spent the past six months in search of this gorgeous bag. 

In fact, it really didn't have to be this gorgeous.  It mostly just had to be the right shape and size, and not ugly. 

Our previous bag, purchased at Target, had served at least 2 years of hard time and was on its last legs when it succumbed to a juice box explosion and had to be thrown away.  Turns out cosmetic bag fashions change quicker than you might think, and so we were unable to simply replace our trusty tote with the same model.  We've since made do with make-up bags we had on hand, but none were quite right.  We spent the summer looking in all sorts of stores, to no avail.

The bag had to be the right size, primarily.  Big enough to comfortably fit the meter, lancet, strips, glucose tabs, a juice box, smarties, a spare battery and whatever other odds and ends live at the bottom in case of emergency.  But not so big that it took up an entire purse leaving no room for the other necessities of life.  It also, per its primary user, my daughter, had to stay open at the top.  When unzipped it needed to comfortably fall open so that a blood sugar test could be done in it, like it was a little nest.  This was the feature of the aforementioned Target bag which we couldn't seem to replicate.  Most of the bags we looked at were stiff and wanted to stay closed at the zipper even if it was unzipped.

We'd about given up hope when we stopped in a little local gift shop, for an entirely different purpose, and there it was.  The new bag.  In several colors.  Was it Target priced?  Not even close.  Was it worth it?  Absolutely.

There's even room for the Dexcom receiver, a few dollars for emergency snacks, and lip gloss. 

It's perfect.

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.

Common Denominator

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!

Nurse #6

I met the new school nurse last week.

Again.

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.

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.

Soggy

We love our annual Cape Cod vacation. The chance to slow down, take long walks, sit on the beach, read in a hammock and do jigsaw puzzles is a rare opportunity for which we are grateful.

Dexi does not like this trip at all. This was the second year we've brought her along and the second year she's bailed out on us.

Daily visits to the pool at home have shortened the length of use for sensors to 6-7 days this summer vs. our usual 10 or more. I have no complaints about that.

But there's something about salt water. Or maybe it's the steady 100% humidity.   Is it the sweat from walks and runs and ball games? Perhaps the layer of sand which had somehow accumulated under the tape was the final straw?

The lack of Dexi data was ok.  The lack of beeping was heavenly, and a break from constantly checking the number and graph was nice too. 

But if anyone has a Dex that doesn't mind the beach, I'd love to hear how you make that happen!

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.

Trust

"Okay- let's do this," said my dentist, smiling at me as he put on his gloves and reached for the drill.

A few years ago, my knuckles would have already been white as I clenched the arm rests and squeezed my eyes shut.

This week?  I was o.k.  I wasn't thrilled, of course, but anxious isn't a word which comes to mind either. Why the change?

I like and trust my dentist.  His positive reinforcement at cleanings has helped me improve my overall dental health. And we've been through things together:  broken teeth, a root canal, a handful of fillings some of which were in awkward spots, and most recently an exam and x-ray because I was terrified I'd broken my jaw. He is kind, funny, and has a way of putting even the biggest dentist-phobe at ease. Most importantly, he does his job well. He's up to date on and uses the latest techniques and technology.  I've never experienced measurable pain during a procedure. He works fast and efficiently to minimize my discomfort. And everything he's done so far has turned out just fine.

So yesterday, as the drill revved up to clear the way for a new crown due to a broken tooth from the aforementioned fall and not-broken jaw, I took a deep breath and assumed everything would turn out just fine.

I white knuckled it through countless dentist appointments for the first 35 years of my life.  I dreaded them and often postponed them.  I put off taking care of dental problems because I was so uncomfortable.  And when I went for a cleaning I often left feeling even worse, having been chastised for the state of my gums or the cavity in my wisdom tooth.  It turns out I just hadn't found the right dentist.

This week's experience reminded me of the equal importance of finding a good endocrinologist.  We don't dread those appointments either.  We like the doctor.  We receive positive reinforcement for the work we do at home to maintain diabetes health.  We've been through stuff together: new schools and nurses, first independent site changes, growth spurts, starting a dexcom, and now the beginnings of puberty.  He is smart, kind, funny and very concerned for my daughter's health and overall well being.  He's given us countless effective suggestions over the years.  My daughter's diabetes management is, with his help, just fine.

I know there are people out there who do not realize what having a good endocrinologist feels like. They dread their appointments.  They falsify data so they don't get yelled at.  They leave feeling hopeless. They receive little or no useful advice from the doctor.  They float through years of diabetes care assuming they're entirely at fault for high A1C's or endless rounds of lows.  They feel like I did about going to the dentist, and they don't know that it could be better.

No, I don't put little stars and smiley faces around the calendar dates of my dental cleanings, nor do I do so for my daughter's endo appointments.  But I don't dread them. I enjoy the people I see there, and I leave feeling improved for having gone.  If that's ever not true, I'll know to go elsewhere.

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.

Making It Fun

Yesterday was endo day. We had a 4:30 appointment in the city.

Yesterday also happened to be an extra long weekend day off from the music program my daughter attends in the summer. She's usually there from 8-3.

So what could have been a rare lunch and afternoon at the pool with friends looked instead like it would be a boring morning of errands and chores, a boring peanut butter sandwich and maybe some screen time before a long car ride, a doctor's appointment and  another long ride home through rush hour traffic.

Not so fast.  Maybe we could make some lemonade out of those lemons.  A little creative thinking, mapquesting and internet searching led us to a truly fun day at the zoo. There was some challenging driving involved, and a little anxiety about the timing of the whole operation, but we went for it.

We got ourselves up and to the zoo when it opened and spent about five hours wandering around watching penguins, monkeys, bears, and especially this baby gorilla.  Who was adorable.  

We had an awesome time.  We arrived at our appointment plenty early.  The appointment went well too. But dinner conversation revolved around the zoo, with any diabetes-related news taking a definite back seat.

Living with diabetes comes with a long, annoying list of responsibilities. There are days when diabetes usurps possibilities which would be more fun.  Sometimes sitting out an activity with a low blood sugar, or missing an after school activity because of a doctor's appointment is just the way it is.  But sometimes, with some extra effort, it can be an excuse to do something great.  I highly recommend taking advantage of those opportunities.  Especially if there's a baby gorilla at your diabetes clinic's closest zoo.

Kohlenhydrate

A friend returned from a week visiting family in Germany with these delicious treats as a souvenir for my daughter.

If each piece weighs 16.76 grams and a serving is 100 grams and each 100 grams has 53 grams of kohlenhydrate, then how many grams of kohlenhydrate does one piece have?

These treats appeared in time for lunch at the nurse-free summer music program my daughter attends.  She valiantly tried to figure out how many carbs each one contained but kept coming up with unreasonable sounding answers.  "So I ate one and guessed."

Who could blame her?  It's hard enough sometimes to sort out carbs on an American and english-language nutrition label.  Figuring this one out could significantly cut into a person's chocolate enjoyment.

Freak Accident

We were headed out for a Father's Day fishing expedition.  My husband, daughter and nephews set out first along the short path to the pond. The rest of us straggled behind, finishing coffee and gathering the extra bug spray.  My husband reappeared shortly, with a long gash in his palm.  It was not from a fish hook.

Retracing the chain of events, here's what happened:

When I passed the meter bag down to my daughter from the loft of the cabin, she dropped it.  She quickly picked it up, put it in a ziploc bag with the dexcom and a juice box. With everything waterproofed for drizzle and proximity to the pond, they headed out the door.

On the way to the water, my daughter took her fishing rod from my husband in trade for the diabetes supply bag.  While he was shoving the bag into the large pocket of his windbreaker, he was cut.

As best as we can figure, the lancet cap popped off when the meter case hit the floor.  An increasingly unlikely series of events followed. The tiny sharp tip of the uncapped lancet poked through the thick plastic case the meter is carried in. It then made it through the ziploc bag.  My husband grabbed the bag in the exact spot where the sharp was coming through and sustained his injury.

After some quick first aid, the fishing trip went on. Hooks were baited and fish were caught and released. A good time was had by all.

But consider this a cautionary tale.  Always check through the meter case after it's been dropped.

What If...

My group of seventy-five jurors was called into a courtroom at 11:15 a.m.  We sat and were given the required lengthy speech about jury service.  The attorneys and defendants were introduced.  We were then handed the jury questionnaire.  By then it was noon.

The judge went through the first two pages of questions one at a time.  People who answered 'yes' to any question were asked to stand and give their names to the judge.  He made a note of each.  A dozen questions later, 40 people had stood up and it was 12:30.

Then he brought every person who had answered 'yes' to any question up to the bench one at a time to talk about their concerns.  It was nearly 2 p.m. when we were sent to lunch.

The second item on the questionnaire had to do with whether there were any medical, financial or personal problems which would prevent you from serving.  With that question came a sentence about the Americans With Disabilities Act under which many accommodations could be provided as needed. Nearly three hours of hungry boredom gave me plenty of time to consider possibilities.

If I had Type 1 diabetes and part of my personal management plan was to eat at approximately the same time every day, I would have needed an accommodation 45 minutes into what was turning into a nearly 3 hour affair.  What would I have done?  Stood up and asked to approach the bench? Tried to eat something without anyone noticing?  Sat there and hoped an emergency didn't develop?

What would happen if a person with diabetes experienced a significant low during testimony and needed a few minutes to regain the power of concentration?  What questions would be raised about someone repeatedly looking at electronic (diabetes) devices throughout the trial?  Would the beeping of devices and glucometers prove to be a distraction?

With a Supreme Court justice who must occasionally need to munch glucose tabs during a hearing, I'm certain diabetes isn't a barrier to jury service.  It's more of a question of when and how a potential juror would disclose the concern.  And of what specific information would need to be shared with the presiding judge.

All I can tell you is that if I were that person who'd been sitting there anxious about when or whether I'd get lunch before my blood sugar crashed, I would have been extra upset when we returned from lunch to learn that the morning's process had been all to find only one more person to fill an almost-complete jury.  Even I, being merely hungry and bored, was somewhat irritated that people were not dismissed more efficiently in this situation.

Jury Duty

I had my first jury duty experience a few weeks ago.

I have been called 4 other times but never served.  I was called once when I was attending college out of state and excused.  I was called for the week of my wedding and excused.   I was called at a time my boss considered me an 'essential employee,' and her letter got me excused.  And I was called when I was a parent to a 3 year old with diabetes and was excused as her primary caregiver.

This time I had to go.  Yes, I'm still a caregiver to a kid with diabetes, but

a. She needs significantly less care-giving than she did at 3 and
b. The amount of documentation I would have needed to submit to prove she needed me had grown exponentially in the past ten years.

But she does still need me, which became the tricky part.

I'm o.k. leaving her home alone for brief periods of time, but only if I'm only a few minutes away, and if we're able to text or call easily.

So on the morning of day 1, we rose extra early so she could eat a counted and bolused-for breakfast and be dropped at a neighbor's (who was very generous to welcome her at 7:30 a.m.).  I drove the 30 minutes to the courthouse.  I was then alternately able to be completely in touch with my phone in hand in the jury holding room, or completely forbidden from cell phone use when taken into a courtroom for jury selection.

Therefore my husband was on call for the two days.  He is able to problem solve basic issues, but I'm usually the go-to diabetes person (as evidenced by my being conferenced in after my recent accident).  So he was anxious about the situation.  Also of concern was that he's an hour plus commute away during the day, so should a true emergency arise, there would be a long time to wait.

I arranged for grandpa to be here the first day when she got home since we had a quick turn-around before the evening's school concert.  The second day she went home with a friend.

The good news is that I did not end up on a jury.  The other good news was that no diabetes issues arose.

I spent a lot of time thinking about how I would possibly serve on a jury.  Or whether I would need to be excused.   Would anyone believe I was challenged by finding child care for my teenager?  Would they understand the need to be accessible during the day?  Would it seem implausible that I field phone calls from my child at school or during after school activities a couple of times every week?

Explaining my life to anyone, let alone an absolute stranger at the courthouse, is always a daunting task.  It's a unique situation of needing to be accessible 'just in case,' and never knowing when that moment might occur.