In Other People's Hands

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

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

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

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

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

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

An Hour's Worth of Emotions

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I present to you the story of the events of Monday morning, with words describing our wide-ranging emotions about said events highlighted in bold print:

On Monday, my kid arrived at school anxious- not about the first day of standardized testing, but about which teacher had been chosen to proctor her private testing room. Her 504 plan has accommodations allowing her to stop and restart testing to deal with any diabetes issues, so she is separated from other kids since her test might be timed differently than that of others. "It's so awkward, mom, I hope it's a teacher I know at least." She checked the list posted in the school lobby and was confused. She had, inexplicably, been assigned to a room with a large group of special education kids. The texts to me began...

"Help! What do I do?"

"Go to guidance and explain that you've been told you were testing alone."

We texted back and forth for 25 minutes or so while she sat in the guidance office. People came in and out asking her questions and then disappearing for stretches of time. All of the teachers not assigned to a testing room were summoned to the principal's office via the PA system. She eventually stopped answering my texts at which point I assumed the situation had been resolved and that she had started taking the test somewhere- with someone.

Scrolling back through those texts, the words and emojis described the following emotions:

Surprise
Anger
Confusion
Frustration
Boredom
Impatience
Sadness
Anxiety
Loneliness
Aggravation
Annoyance
Hope
Disbelief
Stress

Those were interspersed, because how else were we going to cope, with

Amusement and
Laughter



In the end she was relieved that it got resolved, and amazed that the stress hadn't spiked her blood sugar. We were surprised that the rules required 2 teachers to be in the room with her and thankful that they were two teachers she knew and liked. They helped her settle in well and she feels confident about how she did on the day's tests.

In the end, I was proud of her for handling the situation herself and happy that technology allowed me to support her via text.

I would be embarrassed, however, if school officials discovered the number of circus-themed emojis I sent over the course of the morning.

While this story highlights in a somewhat lighthearted way how diabetes can lead to a wide range of emotions in just an hour of every day life, the possibility of long-term serious mental health issues is real. Depression, burnout, anxiety and other mental health issues impact most people with diabetes and their caregivers at one time or another. To read other perspectives on this topic, click here.

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.

 

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.

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.

Elmo In Grouchland

There was, for some reason, a recent conversation about Sesame Street.

"Like in Elmo in Grouchland,"  my husband replied in response to some important point.

"I never liked that movie," my daughter piped up.

No wonder.

My daughter recalls nothing of her diagnosis story.  She was only 13 months old, too young to remember the emergency room, the helicopter ride, the subsequent emergency room, the intensive care unit or the excruciatingly slow days on the regular hospital floor.

We had some toys with us, and the hospital had some we could bring into the room.  We had a collection of picture books, and some crayons.  There were excursions for different tests and blood work.  The nurses came and went.  But a 13 month old in a hospital crib is tough to keep busy.  Up until this point, t.v. had not been a big part of my daughter's life, but this felt like the time to let her watch a little.  Anything, really, to make the time go by.

There was a t.v. in the room which had limited channels- especially for a 1 year old.  The PBS morning shows were about all we had.  She wasn't into Jerry Springer or Days Of Our Lives.  There was also a VCR  in the room (yes- my child is now 100 years old).  The selection of videos for anyone under 7 or 8, however, was tiny.

In fact, the only one we found which seemed relevant was "The Adventures of Elmo in Grouchland."

So we watched it.  Every day.  For 6 days straight.  If nothing else, we reasoned, we were all temporarily distracted.

My daughter has apparently seen it since, though I don't recall viewing it with her.  But then again, I don't recall viewing it the first 6 times either.

It appears 'The Adventures of Elmo in Grouchland' has impacted each of us in very different ways. How have we developed strong opinions on one hand and complete cinematic amnesia on the other?  I'll speculate:

For my daughter the movie is somehow intertwined with a week of her life which, despite not being able to recall the details, I'm certain she did not enjoy.  Subconsciously, I'd guess,  she connects that movie with a week of endless discomfort, stressed parents, and everything being very new and different.

For me, I don't think I ever really saw it to begin with.  It was on in the room, but I was so overwhelmed by the whole situation that I used that 73 minutes to zone out completely.  It was a rare moment in each hospital day when I could let my mind wander, assimilate a fraction of the new information coming at us, rest, and regroup.

Or the maybe the movie is just genuinely terrible and forgettable.

What I am sure of is that we'll never watch it again to find out.

A Break

The circumstances were not great. My daughter and husband ended up traveling without me over Christmas. A local relative needed me close by. They were gone for 3 days and nights during which I spent good quality time including playing many games of Scrabble with the aforementioned relative, caught up on my reading and binge watched HGTV.  It wasn't the worst Christmas I've ever had, nor was it the best.

What was unique about it was going 3 days and nights without diabetes.  This is a luxury my daughter and millions like her may never have.  As a  parent, I've never had it either until now.

The sleep was the highlight.  I can't remember the last time I slept through the night more than 1 night in a row.  Except maybe when I was so sick I couldn't haul myself out of bed anyway.  It's truly amazing what 3 nights of uninterrupted sleep can do for a person.  I felt rested when I opened my eyes.  I felt less scattered. I didn't yawn throughout the day.  I didn't even finish my usual allotment of coffee in the morning.

Perhaps it was a combination of the sleep and the lack of diabetes questions (o.k.- and maybe being home alone), but my concentration improved.  I read for hours without moving from the sofa.  I started and finished a few small projects without jumping between them or leaving them for another day.  I got up, made coffee, ate breakfast, checked the news and left the house without doing a single math problem.

I ate 10 meals without counting a single carbohydrate. I had lunch out without menu negotiations or french fry approximations. I ate a bagel without anyone looking at me with sad puppy dog eyes because she knows they're horrific for her blood sugar and she only indulges about twice a year.  I snacked without making two equal bowls of 12 carbs of crackers to go with the hummus.  I ate at 4 in the afternoon once, and 7:30 at night the next day.

I often wonder where I'd be if diabetes hadn't entered the picture.  This was just a small glimpse of the possibilities.  Evidence shows I'd be well rested.  I'd get more accomplished in a more orderly fashion.  I'd have time to read.  I wouldn't count my food.

I sure missed the kid who has the diabetes though.  I'd give up bagels forever for her.

Saturday Snapshot

We're in the process of cleaning out a house my grandparents had built in 1956.  My parents moved there in 1990.  My daughter was born in 2001 and diagnosed with diabetes in 2002.  We've all spent plenty of time in this family home.

This lancet was at the bottom of a hall closet, under a variety of other items, surrounded by a few years of dust.

Diabetes is as much a part of our family's historical fabric as my grandfather's tool box, which was next to it on the floor of this closet.

Want to see more picture-based posts for diabetes blog week?  Click here for the link list!

What Brings Me Down

Today's topic: May is Mental Health Month, so now seems like a great time to explore the emotional side of living with, or caring for, someone with diabetes.  What things can make dealing with diabetes an emotional issue for you and/or your loved one, and how do you cope?  More  posts on this topic can be found here!

What brings me down as a parent of a child with diabetes is when the disease impacts what my child can and cannot do.  With her cell phone, insulin pump, Dexcom and growing self-awareness, my daughter is now able to do most things other kids her age do.  But not always.

A couple of weeks ago, I wrote about having to say 'no' to an overnight birthday celebration at a friend's vacation home two hours away.  If you'd like to read the whole story, it's here.

Looking back on the post, it tells the story from start to finish.  It explains the logic of our decision and touches on the difficulty of making it.  Yet the emotions are not adequately conveyed.  I mentioned tears, but the whole thing was a real downer.

Reading the invitation?  Deflating.  Anxiety-producing.  Disappointing.  Saddening.

My daughter's reaction?  Like the stages of grief.  They were all there, though not necessarily in order:   denial, anger, bargaining, depression and acceptance.   Fortunately she moved through the whole thing in under an hour, but she was and still is deeply disappointed she can't be there.

How do we deal with it?  With this situation and others like it, we tend to combine two tactics to face the curve balls diabetes sends us.

One, I suppose, comes from our stoic New England and Pennsylvania Dutch roots. With this party invitation, as with other situations in the past, we didn't dwell on it. We had a little cry over the whole thing and unleashed a healthy tirade over diabetes' awfulness.  Then we had lunch.  What else was there to do?

The second is the fun part.  It's the 'when life gives you lemons, make lemonade' idea.  No, she can't go to the party, but we did arrange a fun sleepover at our house for the same night, and there's likely some mini-golf on tap for the weekend as well.  Is it as good as the original opportunity?  No.  But fun will be had, gosh-darnit.

Diabetes can be awful, painful, isolating and depressing.  It takes conscious effort every day to keep it from taking over our household.  Some days it takes everything we've got.

A Limerick

There once was a girl with a meter.
They said diabetes would beat her.
She rose very tall
And said with some gall,
Fall?  I won't even teeter.

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.

Diabetes Art Day

The photo was created over the weekend and the image uploaded in time for yesterday's event.

We spent the rest of Monday shoveling snow.

So here it is, better late than never, my daughter's contribution to Diabetes Art Day:

THE CIRCLE OF DIABETES

For Me

This is where needed to be yesterday afternoon.  The 'to do' list was as endless as always but in a flash of wisdom I realized I needed to take a few minutes for myself.

It's been a long week. With my husband traveling, diabetes has been my responsibility alone. He generally takes late evening checks and every other overnight.  As a person who needs her sleep, I'm dragging. During daylight hours, I've been working through the paperwork for a Dexcom system, analyzing new trends in blood sugar numbers in child who's grown an inch in one month, and troubleshooting my fair share of random incidents such as this one.  

I could have done many things in the hour before school pick-up yesterday. I chose to take a walk.Views like the one above, the sound of ducks quacking, and the wind at my back were what I needed. The exercise sent me back energized despite my sleeplessness. 

I often forget to do things like this for myself, to fuel myself up for the journey. It's never the wrong choice though.  The to do list will still be there when I get back and I'll be better equipped to tackle it.

Her Voice

Sometimes my daughter will treat a low at school and I'll find out later when the nurse has a moment to call. Other times, particularly when she's really feeling the low, I'll get a call right away.

The phone rang the other afternoon.

"I'm... 59," the voice at the other end of the line said.

There was a brief pause.   "I'm...I'm drinking juice."  Slurp.

"Good.  What were you at lunch?"

"I..I...don't know. Should I...go... back to class?"

"Um...no.  I think you should sit with the nurse and check again in 10 minutes."

"O.k.  Yeah.  I will."

I'm certain the nurse would have kept her there anyway, and that the phone call was mostly to hear my voice.

What was unsettling was to hear her voice.  It was quiet, hesitant, scared.  Her thoughts came slowly, foggily. It made me want to get in the car, drive over there, and hug her tight.

Ten minutes later, the phone rang again.  "Hi!  I'm up to 79.  Should I do anything else?"  The confident, happy, energetic, clear thinking kid was back.

"Chew a glucose tab just to be sure and check again between periods."

"O.k.  Bye!"

"Love you. Bye!"

And she was off.

Walking. Again.

Below are excerpts from the letter I emailed and facebooked to our friends and family last week:

This year marks the 10th year our family has walked for JDRF.  Our first walk was in Boston, 11 months after she was diagnosed.  We walked 3 miles through Boston in the pouring rain carrying a 23 month old who refused to sit in her stroller.  Despite all of that, it was an incredible day.  People lined the banks of the Charles River as far as we could see in either direction. They were all there because they knew what we'd found out over the past year.  Living with diabetes is painful and challenging.  They were hopeful that the research supported by JDRF would improve the lives of people with diabetes. That hope was contagious, and started us on our journey towards supporting this organization.

I'll spare you the paragraph about the how crappy it is to live with diabetes, and the one about the kinds of research JDRF supports. If you're reading this, you have at least a rudimentary knowledge of both.

Ten years is a long time.  Some of you have been asked ten times now to join us and/or donate to our walk team.  Maybe you're tired of being asked.  We're certainly tired of asking. Yet we hope you've caught a little bit of our hope that JDRF is making progress, and that one day you'll be able to join us in saying that we made our hope for a cure a reality.

Writing the walk letter gets harder every year.  I truly am tired of asking people to give money to JDRF.  I'm tired of organizing the walk-day logistics.  I'm tired of how difficult it is for friends to participate because they're overloaded with fall sports, activities and competing charitable commitments. I'm tired of setting aside the day every year on our calendar.  Every September, I find it harder to begin again.

Then I remember that I'm tired of the aforementioned crappiness of living with diabetes. So another walk season commences.

Before I know it, nice things start to happen.  People donate generously. Someone who hasn't walked with us before is able to come. An encouraging note comes along with a donation.

I begin to realize again that I'm not alone.  While these people aren't in the trenches with me every day, they care.  Before I know it, I begin to feel a bit of that hope I artfully described in my letter. 

It feels good.

When Is Enough Enough?

After our last endocrinologist appointment at the end of the school year, we decided it was time to look into a continuous glucose monitoring system.  We also decided that we'd wait until fall.  This decision honored my daughter's concerns about having things stuck all over her during bathing suit season as well as my concerns about keeping things adhered to her during the season of water and sand. 

At the end of the summer we visited the orthodontist.  The idea of some kind of braces sometime in the future transformed into definite braces this January.  These won't be just run of the mill braces.  We left the appointment understanding that she will be chewing with only her four back teeth for between eighteen  months and two years, and that she will be wearing head gear, thankfully only at night.

So here she is...about to turn twelve.  She's growing quickly, and at that adorable-only-to-parents awkward, gangly stage. She already has an insulin pump toggled to her at all times.  She already has to carry around a bag full of accouterments everywhere she goes.  Now we're going to fill her mouth with metal, make eating anything coarser than applesauce a challenge and attach head gear to her at night.

Can you see why her enthusiasm about the CGM is waning?  Tacking on another bionic piece and adding another item to her already overloaded purse doesn't sound so appealing, no matter the benefits.  Lets add that it will probably beep at the most humiliating times.

Can you see why, if she knew anything about 70's television, she would be asking why we want to turn her into the bionic woman? 

We'll still proceed with the CGM.  Once those crazy braces go on, it will probably be even more important to keep a closer eye on those blood sugar numbers, at least until she gets used to eating with them. 

But from a psychosocial perspective, I'm reluctant.  Everyone's awkward at 12.  How much equipment can we adhere to her before the balance tips from awkward to crazy robot girl?  When is enough enough?

Playgroup

During my daughter's baby and toddler years, we attended a great playgroup in the community center gym. The local 'mothers club' had collected a plethora of toys and secured a closet in which to store them.  Every Friday, the toys were dragged out into the gym and children from birth to four were invited in to play.  A weekly donation of $2 got you two hours of playtime, a snack and juice, and even a cup of coffee for mom. 

My daughter and I, for the most part, enjoyed it.  She liked the 3 different play kitchens, the giant bouncy balls and the dress up clothes.  I liked meeting other mothers and having somewhere to go, particularly on frigid winter mornings.

This was one of the first places we brought diabetes out in public.  One or two other moms knew my daughter had diabetes, but I imagine many wondered about us; especially at snack time.

The kids would all sit on a couple of blankets laid out on the gym floor to eat their snacks.  Most mothers would then head for the coffee or sit on the bleachers and chat.  We'd head over to the side to check her blood sugar.  I'd then vet the snacks for carbs and determine whether she would eat the playgroup snack of the day or an alternative from my bag.  She was on NPH at the time, so very restricted at snack time. I would then awkwardly hover over the eating children.  I needed to be sure she ate her snack, and didn't eat anybody else's. What if she got her hands on somebody's juice? When snack time was over the children would be instructed to throw away their trash and go back to play.  More often than not, I'd have to drag my child over to the bleachers and make her finish her goldfish before she could go back out there. 

At home, diabetes was becoming part of our routine and its intervals were becoming second nature. The contrast of being somewhere diabetes wasn't part of the routine was challenging for both of us.  It was isolating to be the mom obsessively observing toddler snack time instead of sharing potty training tips over coffee.  My daughter desperately wanted to get back and play whether she'd finished her snack or not.  She wanted the playgroup snack whether it was goldfish (o.k.) or donuts(not o.k.).  She was really little, and any parent can therefore imagine her reaction to not being allowed to have her way.

In retrospect this was the beginning of a long series of moments when we brought diabetes along with us despite its challenges.  Yes, there were 2 or 3 days when I had to give up and bring her home because she melted down at snack time.  Most weeks, though, the fun far outweighed the challenge.  I wasn't going to let the possibility diabetes might throw us a curve ball stop us from enjoying a happy morning out.   A few years have passed, but that last bit remains just as true today.

Adrenaline 2

My previous post described our experience with adrenaline when my daughter performed in the school musical last weekend.  The excitement and anxiety of performing resulted in a large spike in blood sugar.  The spelling bee, amusement park rides, and other big moments have resulted in similar spikes.  Yet there are circumstances in which we'd expect to see an adrenaline spike and do not, such as this weekend's other stressful event.

In the midst of her busy play weekend, I dropped my daughter and my husband at softball practice at 11 a.m. on Saturday morning.  I returned an hour later to find my daughter with an ice pack and a growing bruise near her eye.  She didn't catch the fly ball.

This scenario involved physical trauma, fear and embarrassment.  It seems to me that this would be a perfect trifecta of adrenaline production.  For her? Nothing. Her blood sugar was 81 after practice and didn't spike until her performance later that afternoon. 

There is a long list of areas in which people's experience with diabetes varies.  Foods which are disastrous for some pose no difficulty for others.  Exercise may cause a slow and steady drop, or it might cause a spike followed by a later crash.  Low and high blood sugar symptoms differ greatly from person to person.

It becomes a matter of tracking individual experiences and learning the patterns. We learn the basic science and execution of it all from our health care team.  We read and listen to the experiences of others with diabetes.  Yet diabetes management also involves a great deal of 'learning by doing.'

We hope not to have a repeat of the softball to the face incident, with its resulting black eye; particularly not hours before the school play.  Perhaps, though, we've learned something about the difference between physical and emotional trauma in their ramifications on my daughter's blood sugar.

Expansion

Last week, I announced my intention to explore new territory as far as pump sites were concerned.

Monday evening, I informed my daughter of this plan.  I followed my own advice and began with an explanation of the medical importance of site rotation. She'd heard the spiel before and understood.  I made sure there would be plenty of time to choose among three possible locations, and for both of us to work up our courage.  I laid out the reward system.

Despite my thorough approach, I expected a different reaction.  Reluctance.  Fear.  Tears.  Outright refusal.  All were possibilities.  As a rule, suggestions of new areas have been stubbornly vetoed in the past.

Instead I heard, "You mean I really get a prize every time?"

Never underestimate the power of tic-tacs or plastic penguin plates in convincing an 11 year old to try something new.

"Yes...as long as it's a new spot."

"And if we do 4 in row, we really get to go out for frozen yogurt?"

"Yep...we really do."

"O.K., but I'm only doing it for the prizes."

We've started with small excursions from the comfort zone. She was surprised to find she liked the area near her hip quite a bit. We tried a higher spot, and a lower one, experimenting to see what was comfortable.

We'll continue on with these small steps for a while, essentially expanding the current circle by 3-4 inches.

Eventually, I plan to throw in a really new spot (belly, thigh) as one of the three choices.  She won't choose it, but she'll think about it. Then I'll up the ante again.  Big rewards for entirely new body parts, and back to the usual prize every 3 times for the expanded territory.

Provided the next site change is successful, we're off to the frozen yogurt shop for a reward.  Since my own prize is now in sight, I might be brave enough to try her hip again.  Angling the insertion set there felt precarious, but in the end, it worked out fine.  Practice makes perfect.

Unlike my daughter, the prizes are not my primary motivator here.  Her health is my first concern. Yet, the truth is, I'm already wondering if there will be a fun new seasonal yogurt flavor to try.

Sad

We really do our best around here to move on with life despite diabetes. It doesn't get a say in where we're going, or a choice of how we get there.  It's constantly with us, and does get its needed attention, but we make every attempt not to let it weasel its way into places it doesn't belong. 

Yet, this philosophy isn't fool-proof.  Diabetes has its ways.  Often it doesn't even need a major ploy to get to us, just a well-timed nudge.

Take last night. 

My sleepy daughter reappeared at 9:15 p.m. after being tucked in at 8:30.  Wearing her pink and red angry bird jammies, squinting in the living room light, she said, "I couldn't sleep.  I'm 65.  I'm also out of test strips in my room."

We rose from the couch. I fetched the juice and my husband fetched the test strips.  There was a dreary quiet about these tasks.  I walked my daughter back to her bed, retrieved her stuffed rabbit from under the covers, and gave her a hug.

"You ok?"

"Yeah."

"I'll check you again in a little bit. Hopefully you'll sleep now."

"I hope so.  I'm tired."

"I know.  I love you."

"Love you too."

Sometimes I can tough out this routine mindlessly.  Juice, kiss, bed.  All in a day's diabetes work; better luck next time.

Yet last night, it just felt extraordinarily unfair.  All she wanted to do was get a good night's sleep and wake rested for school. Instead she was up needing juice and worried about her supply of test strips.

It made me sad.