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. 

Roll Over Beethoven

I heard it from across the crowded room. The unmistakable melody. A terrible electronic version of 'Fur Elise' was coming from my daughter's insulin pump. What, I often wonder, would Beethoven think?

Eye contact confirmed that this wasn't a simple 'Bolus cancelled by user button push' or 'Unable to communicate with pump' Animas Ping alarm. My kid looked both concerned and irritated. I made my way through a few conversation groups.

'I forgot to do a site change before we came. I'm out of insulin. It gave all it was supposed to give to cover what's on my plate but now I'm out.'

We were really enjoying this party. I was reveling in the opportunity to hold an adorable baby whose mom needed a civilized plate of food and adult conversation. My daughter was enjoying helping the little ones at the cookie decorating table. We were having great conversations with friends both new and old. To add atmosphere, it had just begun to snow. This particular festive gathering was exactly what we needed after a whirlwind weekend of holiday shopping and preparations.

We were not, I decided, going to let diabetes win the afternoon. My daughter ate a little less than she'd bolused for, to provide a cushion. We kept an eye on her numbers. She held steady for almost an hour, then her blood sugar started to creep up very slowly. We considered leaving then, but I had to return the baby, and then on the way to get our coats we found other people we wanted to talk to. The rise became more significant about twenty minutes later, and we started our round of goodbyes. But considering the homework that still needed to be done and the football that needed to be watched we wouldn't have stayed much longer no matter the diabetes circumstances.

We got home, replaced the insulin and the site, and bolused for an hour and a half worth of missed basal insulin in addition to the suggested correction for her blood sugar at the time (about 220...not bad at all). The rest of the night was uneventful blood sugar wise.

There were few minor downsides: I needed to heat up some leftovers since she had stopped eating anything but raw vegetables once she ran out of insulin. She missed out on a great spice cake. And the electronic Beethoven theme repeated itself every few minutes- but I'm guessing it probably wasn't audible to anyone but us over the music and conversation.

Looking back, I'm glad we didn't panic. There was no need to. She disconnects her pump at the pool for an hour at a time all summer. At the beach it's often longer. We do the same thing we did last night: make up the insulin once she's hooked back up to the pump. Ideal? No. Medical advice? Absolutely not. But sometimes it's more important not to let diabetes ruin a good time.

Handy

 

Each performer was assigned a number for the two-part high school musical auditions. There were dozens of kids auditioning, and the directors are new to the school so it wasn't just the freshmen they didn't know yet. They needed a system to track everyone.

 

For the singing auditions on the first afternoon, the kids could just hold onto their numbers and report them when they individually entered the audition room.

 

On day two, the audition involved learning a dance routine all together on the stage and then performing it in groups of 8. The numbers had to be attached to the performers. While some kids struggled with tape and others scavenged safety pins, my kid had a built in solution.

 

She fastened her number through the snap of her Dexcom case. It was visible at waist level throughout the audition and was still attached when she arrived home:

 

 

 

 

Love these once in a blue moon moments when having diabetes comes in handy.

 



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!

Great?

Thanksgiving weekend was great. We had family travel to spend the weekend with us. We hosted the meal. We enjoyed leftovers, played board games and took some long walks.

Diabetes-wise? It wasn't great. The Dexcom beeped all weekend, mostly for high blood sugars. There was a 'FALLING' alarm each time we set out for a walk, as though all of the insulin delivered over the previous hours had pooled, waiting for the slightest movement to activate all at once. And there was a mysterious low after the Thanksgiving Day pie:



 

 



The leftovers are mostly gone now and the routine has returned to the usual school day schedule. Blood sugars are coming back into range.

We decided long ago, the first time we vacationed with diabetes, that special occasions warranted a loosening of diabetes perfectionism. This doesn't mean we don't correct highs and treat lows. It doesn't mean that we stop trying to count carbs altogether. It doesn't mean that we don't use the tools and tricks in our arsenal to attempt to keep things on as even a keel as possible. It simply means that we accept the inevitability of wider swings in blood sugars because of the change in routine and eating patterns. It means we take a deep breath and don't freak out over every out of range number. It means that we focus on the diabetes to the extent we need to in order to keep my daughter feeling good. Beyond that, we focus on the fun. Not medical advice, I'm sure, but it's a philosophy that keeps us sane so that we can enjoy the special occasions in life.

Which is why I can say that, despite the incessant beeping, Thanksgiving weekend was great.





Thankful

Yesterday was a good day, diabetes-wise.

Early in the day I had a conversation I'd been dreading. I needed to speak with someone from the school about diabetes accommodations specific to a high school event. It turned out to be a great conversation in which I was encouraged to clearly express my questions and worries. I was able to explain the aspects of living with diabetes which led to my concerns. The reaction I got was both compassionate and practical. I expect that, as a team, the school and our family will find just the right solution to our dilemma.

Late in the afternoon we had our quarterly endocrinologist appointment. I've mentioned before how thankful I am for our doctor and our clinic. I was, once again, grateful for wise, fresh eyes on the high blood sugar trends we're working on. We received advice delivered conversationally and with humor. And, while it partly reflected some early-fall lows, we left the clinic proud of my daughter's lowest A1C ever. I know... it's not supposed to be a 'report card. But after the amount of work we've put in to keep her blood sugar from spiraling out of control during this first fall of high school and marching band?  It felt like something worth celebrating.

This day I've described came on the tail of a local JDRF Summit I attended on Saturday. There I encountered people who don't have what we have. They have schools which won't budge on legally required accommodations like testing blood sugar in the classroom. They have doctors who don't take the time to work with them to improve their health or who, even worse, judge and criticize them. They had come to this event because they felt alone and unsupported in their diabetes worlds.

Which brings us back to the November theme of awareness...

I am aware that many families do not find a compassionate voice when they call their children's schools. I am aware that many families are fighting tooth and nail for basic, legally required accommodations. I am aware that many families don't have the time, language skills or knowledge to even ask for their children with diabetes' rights to be honored.

I am aware that there are people with diabetes in this world and country who have no means to get medical care at all. I am aware that much of what passes for diabetes care in this country is far inferior to what is offered at the specialized center we travel to.

I fell asleep last night feeling content that all was right in our little diabetes world. I woke this morning aware that there is work to be done so that more, if not all, families who live with diabetes have a shot at being as well supported as we are.

Every Day is Healthy Lunch Day

Yesterday was National Healthy Lunch Day, a diabetes awareness month event sponsored by the American Diabetes Association.  I spent yesterday morning largely off-line, so by the time I saw the e-mail inviting me to participate I was halfway through my lunch and my daughter's had been at the high school for hours.

Fortunately, almost every day is healthy lunch day in our house, so I bring you today's school lunch:



 

 

A variation on this theme goes to school with my daughter every day in our ragtag collection of reusable containers.  Today's sandwich is PB&J with natural peanut butter and low-sugar spiced pear jam. Grapes are today's fruit choice, and she'll have salt and pepper popped rice crisps for the crunchy course. The muffin of the day is apple and pear. 



All packed up and ready to go, with a note reading, "68 g."