Sweet Sixteen

Sixteen sweet things about the past sixteen years with T1D:

1. My daughter was diagnosed in time.

2. Christmas in a children's hospital is not an experience I'd wish on anyone and yet was magical in ways no other Christmas could be.

3. She and I both survived the toddler diabetes years.

4. We found other families with diabetes quickly.

5. We continue to have diabetes people in our lives: friendships we treasure both despite and because of their diabetes glue.

6. Ruby, the teddy bear with diabetes, lives with us and continues to be a fuzzy source of support.

7. A perfect and welcoming preschool was, essentially, in our backyard.

8. I found the diabetes online community; and then I got to start a blog and revisit my second grade goal of being a writer when I grew up.

9. The elementary school nurse was a treasure; and her diabetes care was great too.

10. Friends' parents invited my daughter over for playdates, however uncomfortable they may have been.

11.Lots of friends and family have gone out of their way (especially in those early pre-pump years) to loop us in on menu plans and eating schedules, making our visits easy.

12. Teachers have kept an extra eye out, no matter the other chaos in their classrooms.

13. Schools have found a way to make trips, special events and after-school activities work.

14. We've had amazing medical professionals on our team.

15. Math has always come easily for my daughter (and my math skills have greatly improved).

16. My daughter has grown into a responsible, self-confident and compassionate young woman.

Sixteen years ago today we had a tough day. There have been quite a few tough diabetes days every year since then. But, from time to time, it's worth counting our blessings.

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. 

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.

 

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.