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!