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.