Teenage Thoughts Interrupted

This is only a sample of what I imagine is circling through my daughter's mind, on repeat, every day:

when am I eating next
4x+y=47...where do I start
what's my blood sugar
when is that English essay due
we're running in gym today so I might be low
I wonder if Molly can come over after school
I'm sitting for an hour and a half in the assembly- I'll probably be high at lunch
I love the new Nick Jonas song
the school schedule changed for the day so lunch is really early- that'll mess up my blood sugar
should I get a new mirror in my room
should I have dinner before or after tennis so I don't go low
my piano recital is on Saturday
is it site change day
which dress should I wear for 8th grade graduation
why am I high
I need to get something for grandpa's birthday
should I ask all my friends to stop and wait for me while I check my blood sugar
why are my friends arguing over where to go for lunch on Friday
how many carbs are in this dish of Italian ice
are the Red Sox on tv tonight
should I correct again or will I crash because I might only be high from being nervous about the quiz
when are auditions for the summer musical
did I silence the dexcom or is it going to alarm during the concert
maybe I'll call my cousins tonight
why are there no clean measuring cups so I can measure my rice for dinner
that panda video is adorable
should I go to the nurse for this 69 blood sugar or just eat a couple of glucose tabs at my desk
should I ask for a new phone case
I need more dexcom tape
maybe we could shop for shoes for the 8th grade dance this afternoon
I have to bring more juice boxes into school tomorrow for the nurse's office
does the library have the book I'm waiting for yet
where did I leave the meter
is it my turn in words with friends with grandma
I have to remind mom that we need to reorder the pump supplies
should I post a selfie on Instagram today or is it too soon since the last one
maybe I'll just have cucumbers and hummus for snack so I don't have to count carbs
I'm so excited about this ancient Egypt history project
I can hear the alarm but where did I leave the dexcom
this box of tic tacs is almost gone

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.

 

 

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.

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.

Dexi's Vacation

Dexi survived the first few salt water laden days of our vacation.  Initially, we were checking and reinforcing tape regularly.  They we got sidetracked by swimming and beach walking.  As we prepared for the outdoor shower after a long beach day, she was discovered to be slightly dislodged.  A delicate operation to attempt to resuscitate her failed and she was removed.

Our deal when we first started the Dexcom was that breaks were o.k.  The request was to take one at this point, so we did.  I must say there were plusses.

It was hard enough to remember the meter kit every time we left the cottage.  The constant transferring of the meter and other necessities between my purse, a small string bag and the beach bag was challenge enough. The Dexcom receiver would have been just one more thing to track down - or forget.

While the alarming is, of course, helpful to alert us to high blood sugars, there were a few frozen treats and fried seafood meals I'm glad Dexi never became aware of.   We didn't ignore the highs - we tested and corrected regularly.  But there's at least one night I'm sure Dexi would have ended up sleeping in the car so she didn't keep us up all night.

Wearing the sensor in the ocean makes me just a smidge nervous.  No- it's never fallen completely off, and I don't expect it will.   But were it to do so, I'm certain we'd never see it again.  It would turn into a mysterious item for someone's beachcombing bucket some day.

I think my daughter was happy to have her belly free.  It felt nice to swim and boogie board and dig around in the sand without a protrusion.  Also, nobody was looking at it or asking questions about it. The tankinis cover it when she's standing still, but it becomes exposed with movement, and certainly when the bathing suit ruffles float up in the water.  The pump site is invisible under her suit, and when she's walking or playing, she wears terry cloth shorts with big pockets to put the pump in.  She's willing to answer questions - but a vacation from doing so is nice too.

Dexi's back up and running, and alarming, and being forgotten when we go to the library.  We missed her information, and are finding her graphs helpful as we transition from an active vacation to a quiet week at home. There was no objection to starting her up again, and my daughter's glad to have her around on days like today when she's at the pool with a friend.

But the break wasn't bad.

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.

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.

What If?

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

'Does your daughter have any medical conditions?'

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

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

'Mmm,' I said with a tight smile.

The EMT continued to treat the facial injury.

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

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

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

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

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

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

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

But I refuse to let it slow us down.

Wishing For Invisibility

What middle schooler hasn't wished to be invisible?  The reasons are too numerous to count:

Acne

Bad Haircuts

Clumsiness

Mean kids

Forgotten homework

Sports blunders

Social faux-pas

Being in public with one's parents

Diabetes

Wait...that last one is invisible.  Sort-of.  Which is good.  Sometimes.

With her insulin pump in her pocket and her supplies stashed away, nobody knows my child has diabetes.  Until she disappears from the classroom every day before everyone else.  Or starts squeezing blood out of her finger at a birthday party.  Or gets all glazy eyed and starts chugging an Elmo juice box.  Then it's actually be helpful to know that she has diabetes and hasn't gone off the deep end.

She's not embarrassed about her diabetes, though she may go through a phase some day when she is.  For now, she's open to questions.  But it's not the first thing she wants people to know about her.  She'd rather talk about books or music or American Girl Dolls or the Red Sox.  She'd rather people know she's sweet and funny and smart.

Yet I suppose if the first impression was a choice between dropping all her stuff while tripping up the steps at the new school, or being seen testing her blood sugar on those same steps, she'd choose the latter.

Would you?

This week is invisible illness awareness week.  More information and the opportunity to link your own post can be found here.

Visible vs. Invisible

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

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

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

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

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

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

Take the Cookie or Else

We have a commercial bakery outlet near our home and will occasionally stop there, particularly when we need to bring large quantities of cookies or donut holes to school or girl scout events. 

This story takes place a long time ago, when my daughter was no older than 4.  It was before 10 a.m., and we stopped there to buy bread.  There was an open box of chocolate chip cookies on the counter.

"Take a cookie, sweetie," the cashier said, motioning to the box. 

"No, thank you," my daughter politely replied. I've become a bit more flexible over the years since then, but at that point she knew she wasn't having a cookie at 9:45 a.m. on top of her morning snack and her usual high-ish mid-morning blood sugar.

"Are you sure, honey?  I could open the oatmeal ones instead."

She shook her head, so strong in the face of temptation.

"How about a donut hole?"

Really?  But my child stood firm.

"Well, then take this box of cookies for later...is that o.k., mom?"

My combined Scottish and New England roots could not refuse the offer of a free box of cookies, so we took them.  She enjoyed a few after dinner in the coming week, as did the rest of us.

To this day, six years later, the same thing happens nearly every time we drive past the store.  My daughter incredulously says, "Mommy, do you remember when the lady gave me a whole box of cookies?"