A Bittersweet Week

Christmas is coming. The carols are playing...everywhere. We're making cookies. There are pageants and parties and concerts. The stockings are hung by the chimney with care. We'll gather with family this weekend. We'll attend a candlelight service. Santa will come. Gifts will be exchanged.

We'll enjoy all of those moments, but with a unique perspective.

Fourteen years ago we spent this week at a children's hospital. We'd been helicoptered there on December 21st with a very sick baby. We spent the night in the ICU and the week at the hospital. We spent the week grateful for life, knowing that our baby had been treated just in the nick of time. We spent the week scared and overwhelmed by the ways our world had changed with the diagnosis of diabetes. We spent the week surrounded by other hospitalized families, some of whom were not expecting as happy an ending as we had been granted.

The experience has forever added a bittersweet thread to our family's Christmas week.

This year's first tears came while I watched my daughter narrate the Christmas pageant on Sunday. I was overwhelmed with gratitude that she was there at all. The specter of what could have happened if we'd waited even hours more to take her to the emergency room lingers a little closer during this season. Hearing her beautiful voice and watching her smile at the little angels scampering down the aisle stood in stark contrast to what might have been.

I'll tear up when we sing 'Away in a Manger' at the candlelight service. I sang it hundreds of times to calm my baby in her hospital crib. I'll skip wearing mascara to the school holiday concert, and take a few deep breaths when I unbox a Christmas decoration we were given in the hospital fourteen years ago. I'll experience a flood of empathy when I encounter or hear about people who are spending this Christmas in a hospital, or in a shelter, or who are grieving or afraid this season.

The thread of Christmas 2002 runs through all of our future Christmases. While it's not a thread I would have chosen to weave into our family's story, it has added a depth of meaning to all of the Christmases that have followed. The thread reminds us that at the core of this season's stories there is light and hope despite the apparent darkness and despair.  As I wrote to conclude the first post I ever wrote for this blog:

My daughter’s second Christmas, when we sat together in the cafeteria of the children’s hospital eating prime rib off of Styrofoam plates, remains one of my favorite Christmases ever.  Despite all that we had lost in the preceding days, we had each other, we had the power of modern medicine, and we had hope. 

A Letter From Santa!

What kid wouldn't cherish a personalized letter from Santa?

Mine certainly did. We had the Diabetes Research Institute Foundation help us solicit a special letter from Santa several years in a row. Santa always writes great letters, but with help from DRI's special elves, these were particularly personal and even included a bit about how well my daughter handles her diabetes.

The cute video above illustrates the program well.

If you love a little one who's expecting a letter from the North Pole, you can make it extra special for everyone involved. Here's the link to the page with all the details about how to make a small donation in exchange for a unique handwritten letter this season. I promise you won't be disappointed!

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.
 

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.

We Forgot

Scrolling through my facebook feed this morning, I ran across a mention of someone's 'diaversary.'  Which reminded me that yesterday was my daughter's.

Twelve years ago yesterday we were supposed to celebrate Christmas with my husband's family before traveling to my parents' for the holiday itself.  Instead, we found ourselves speeding to the emergency room at sunrise, taking a helicopter trip to the Children's Hospital by noon, and spending  the night in a hospital crib in the pediatric ICU.  We spent 6 days in the hospital, including Christmas.

Yesterday we celebrated Christmas at home, so that we may more easily travel to the other half of the family for the actual day.  So immersed were we in those preparations and festivities that the significance of the date never even crossed my mind.

It's an age-old question in the diabetes community: 'Do you celebrate your diaversary, and how?'  We've never celebrated, per se, but we usually talk about it.  We talk about the day's chain of events, which remains amazing all these years later.  We talk about the people who visited us, and reached out to us, while we were in the hospital.  We talk about how great Santa was to us that year.  We talk about the years that have passed since then and all the good things they've brought.  We've become more well informed.  Technology has improved.  We've benefited from the help of some great professionals.  My daughter has gone from a helpless baby to a kid who is an active participant in managing her diabetes.

Perhaps these conversations are a celebration of sorts.  By reminiscing, we're lifting up some positive things. We were strong enough to make it through that first day and week.  We were and continue to be surrounded by friends and family who care.  We've learned.  We've sought out and been helped by excellent endocrinology professionals.  My daughter is learning how to eventually take the reins as she continues to live with diabetes.

The season in which this milestone falls never allows much time to reflect- if we remember at all.  But better late than never, tonight at dinner I'll plan to reminisce about just a little bit of the past 12 years' journey.