Trick-or-Treating ON Halloween!

It's been 3 years since my daughter has gone trick-or-treating on Halloween.  First there was a freak snowstorm that put our town out of commission for a week.  Then there was Sandy.  Each year a different night was designated for trick-or-treat, but the experience lost some of its luster with the delay and the lingering damage we walked through as we navigated the sidewalks.

Below is the post I put together after last year's "Halloween." It shares our candy allocation system, which will be the same this year.  Rereading it, though, I was particularly struck by how it highlights our Halloween philosophy.  It's not about the candy.  It's about wearing a fun costume, being with friends and visiting neighbors. Combine those factors with the excitement of going out ON Halloween night, and tonight should be spookily delightful.

No...this post isn't late.  It's only the day after Halloween at our house.  Our sense of time and connection to the rest of the world continues to be altered a bit from the after-effects of Sandy.

Glad for the opportunity to trick or treat, my daughter the witch met up with a blue and green striped monster and a werewolf for a some fun last night.

As is our tradition, we came home and sorted the winnings into four piles:

From left to right, we begin with the dish of candy to keep and enjoy over the next week.  Next is the container of fast-acting carbs like smarties, sweet tarts and nerds.  Third is the container of pretzels and chips, great to throw in the lunch box or to snack on.  Last is the bag from which my husband and I will pull a few favorites before the rest gets donated.

I often get asked if Halloween is hard for my child because of diabetes.  I have two answers.  First, I clarify that she can enjoy candy in moderation.  Then I talk about all of the other fun aspects of Halloween like costumes, pumpkins, being a little spooked, enjoying friends, and walking around after dark.  Last night, we walked around a neighborhood which had only had power back for about 24 hours.  People were so happy to have the kids come by and to catch up with their neighbors. Doing something so fun and frivolous after the week we'd had made this Halloween extra special.

Sick Day Project

Yesterday was a sick day to recover from a cold.  So Ruby and Rufus came out 

to help us with a very important project:

We put together our cards for the World Diabetes Day postcard exchange.

The germs should die off in plenty of time to mail them.  Now if the glue would just dry in time too...

Having Diabetes and Trying Not To

This week finds us balancing the work of living with diabetes with work towards awareness and a cure.

A month and several packages of juice boxes later we're getting a handle on a low blood sugar trend.  It will undoubtedly morph into a high blood sugar trend very soon, requiring a restoration of the basal and carb settings as if the whole episode had never occurred.

Yesterday was our fall endocrinologist appointment.  My daughter's A1C was down, probably not just from the aforementioned low trend, so that was good news. The charts and graphs looked pretty nice. Bad news? It's time for annual blood work.

Meanwhile, we're collecting materials to make postcards this weekend for the World Diabetes Day Postcard Exchange.  This will be our third year participating.  It's fun to create and write our cards, and particularly fun to get mail!

The middle school had its annual JDRF Kids Walk last Friday.  My daughter has gotten involved in the club that runs it.  She made announcements and helped put up posters. She went around at lunch all week collecting donations in exchange for kids writing their names on paper sneakers. She learned yesterday that they raised over $1000.

This Saturday is our local JDRF walk. We've managed to recruit a few new team members this year, and our fundraising is going well.  It also looks like (fingers crossed) the sun will shine!

On one hand it feels like it's all diabetes all the time around here. Can we not think, talk, write about anything else? On the other hand, having these positive diabetes activities to balance the everyday burdensome ones isn't bad.  We're feeling supported and encouraged by our personal community and the diabetes community at large.  And we feel like we're doing something to change our circumstances in the long run.

Walk season and November's diabetes awareness month are when we recharge our batteries.  Like sponges, we suck up the kindness and hope.  The notes which come with donations, the surprise support for our walk team, the $1000 raised at the school, the postcards, the buildings lit in blue, the people in the media talking about and advocating about diabetes are all absorbed in the fall.  At 2 a.m. on a Wednesday in February when I'm standing by my daughter's bed surrounded by empty juice boxes and feeling defeated by this crummy disease, I hope I can draw on some of the hope and encouragement which surrounds me today.

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.

Strips

Our latest shipment of test strips arrived the other day.  I opened the box to put them away but stopped, puzzled.  These boxes were smaller, about half the size of the usual ones.  Maybe there were twice as many boxes of 50 instead of the usual number of boxes of 100?  A quick count told me no, there were the same number of boxes as usual.  Dreading what I presumed would be an unpleasant call to customer service, I investigated further.  Was I missing something?

Indeed I was.  Once I peeled off the label which covered most of the new box, I discovered the secret.  This box held 100 strips just like the old ones.

They'd put 50 strips in each vial instead of the usual 25.  I happened to know this was possible.  When we've traveled, or gone on long, strip-intensive day trips, I've always combined two vials of strips.  It's good insurance against running out somewhere inconvenient.  It saves us digging through the diabetes travel box trying to find another vial at 2 a.m. the night we arrive at grandma's.  There's probably some reason the strip manufacturer would discourage me from doing this, but it's worked for us.

While fewer trips to the closet to get a new vial of strips will be very convenient for our family, this change makes me particularly happy for another reason.  This change means half as much waste.  We're tossing half as many strip vials and recycling boxes half the size for the same amount of product.  

Kudos to One Touch for packaging strips this way, and to our mail order pharmacy for sending them this way. The amount of waste diabetes creates in our household continues to bother me.  I'm grateful for any changes to lessen the environmental impact of managing this disease.

Junior Diabetes

I was waiting for the question.  The sneakers were up behind the counter. The cashier at Marshalls rang up my purchases. Then he looked up.  "Would you like to donate to the Junior Diabetes Foundation?" 

As you may be aware, there's an ongoing discussion in the diabetes community about the name for the autoimmune form of diabetes.  Juvenile Diabetes was the original.  Type 1 is the current.  Some think the third time will be a charm.

Despite the push to use 'type 1,' or an even newer moniker, 'juvenile' lingers. One reason is that it's featured in the original name of the disease's primary foundation.  JDRF began as the Juvenile Diabetes Research Foundation.  According to the people running our local walk kick-off event this summer, JDRF has chosen to shorten its official name to the acronym, but not to change it completely.  The concern is that brand recognition is imperative for their fundraising efforts. An explanation of their re-branding can be found on the JDRF website.

Their decision is understandable in some ways, but problematic in others.  When people see an acronym, they assume it stands for the organization's name.  JDRF has redrawn their logo to make the J and D resemble T1D.  Next to their logo are the words, 'Improving lives. Curing Type 1 Diabetes.'  Yet verbally, that doesn't come across.  Selling sneakers at the check-out is very much a verbal transaction. The cashier was stuck with an acronym: JDRF.  I imagine a training packet comes with the sneakers, with sales pitches to use.  I also imagine that if staff are actually trained, not much of it sticks.

So I was asked to donate to the Junior Diabetes Foundation.  It could have been worse.  Diabetes made it in there, which defined the essential purpose of the fundraising.  Anyone with a connection to the disease would probably have accurately translated the question.

I suppose I could have said something like, "It's actually Type 1 Diabetes.  The J used to stand for Juvenile, and the organization used to be called the Juvenile Diabetes Research Foundation but they changed their name to just an acronym because the disease was renamed and because people of all ages live with it."  I'm guessing his eyes would have glazed over pretty quickly.

So I simply donated and said,  "Absolutely.  And thank you for asking.  My daughter has diabetes and JDRF's research means a lot to us."

Vegetable Garden

Today is 'no d day' when we try to make it through the day without mentioning the d word.  For more info, to participate, or to read more no d day posts, visit Ninjabetic.

This spring we added a vegetable garden to our back  yard.  We bought a raised garden bed kit from Home Depot and built a 4 x 4 square, filling it with topsoil and compost.  We're still working on eradicating the weeds and vines which came with the house's existing garden beds. Starting fresh gave the plants a fighting chance with fresh soil and few weeds. 

Our plentiful crops of cucumbers and spinach are finished. What else did we grow? 



We're eagerly awaiting our next crop of lettuce.  The first round provided countless salads.

We grew herbs. Basil and parsley are pictured here.  We also grew mint and rosemary.  I love going out back to pick just what I need for a recipe.

These sweet little grape tomatoes just keep coming.  My daughter, who doesn't ordinarily like tomatoes, has been eating them off the vine all summer.

No, it's not a vegetable.  But it's a gardening success.  The seed for this sunflower came in my daughter's Easter basket.  We started it inside, assuming that like every sunflower we've tried to grow it would instantaneously die once transplanted.  I decided to help it along a bit by planting it in the corner of the new vegetable garden.  We staked it up.  More than once we thought we'd lost it.  But here it is...about to bloom!

We planted marigolds too, amongst the tomatoes to repel pests.  We had no tomato problems, but next year, I might not need so many marigolds. They kind of took over.

Next year?  We're seriously considering adding another bed.  We'd love to try growing green and yellow beans, summer squash, peppers and more herbs.  Yum!