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.
"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.
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!
Saturday was World Diabetes Day.
Our family took this picture and posted it on all of our respective social media accounts:
It stood out, it appeared, in contrast to the French flags and Eiffel towers populating our screens. I began to wonder... Should I have dug up a family photo from our trip to Paris instead? Should I have kept World Diabetes Day to myself in light of Friday night's terrorism? Was I being selfish?
For two reasons, I decided to leave it:
World Diabetes Day is an international call to action to help people with diabetes, particularly those who cannot help themselves. It's a call to find ways on all kinds of levels, from the United Nations to national governments, to towns, to non-profit organizations to individual actions to bring diabetes education, medication and care to everyone who needs it across the globe. That didn't feel selfish at all.
And the message on our hands? It seemed appropriate for both occasions and for many more. In a world where terrorism is increasingly common and where hatred feels impossible to overcome, what more can we wish for the people being terrorized? The same thing we wish for children who can't afford enough insulin or for places where people are dying all too soon from diabetes: Hope.
The per diem doc who was in our pediatrician's office on Halloween when we stopped by for a flu shot (trick or treat?) asked my daughter if she'd eat candy that night or just hand it out. "I'll eat some," she replied enthusiastically.
"Oh- so you'll cheat," he replied.
"Well, not really," she mustered, looking surprised. "I'll bolus for it."
"With the pump, it's pretty easy to enjoy the treats," I added, wondering if I'd somehow stepped back in time 20 years.
"O.k.," he said skeptically as he headed off to the next examining room.
We've encountered dreadfully unaware medical professionals more times than I'd like to count. There was the nurse at the children's hospital's same day medical center who, when we arrived at 8:30 a.m. for the procedure, asked if we'd checked my daughter's blood sugar in the past 24 hours. There was the lab technician who had access to my child's diagnosis and yet reassured her that once the blood was drawn she probably wouldn't have to deal with a needle again for years. And the pharmacist with whom I had a lengthy conversation about "keystone test strips" (only available in Pennsylvania?) and why any child could possibly need them- because children don't have diabetes.
Finding the words to explain diabetes is often difficult. We've found it even more difficult when the lack of awareness comes from medical professionals who really should know better. But find the words we do, so that hopefully the next kid who shows up at the lab center won't have to.
This year's JDRF walk had what we thought was a particularly cool new twist. The walkers with diabetes were given the special blue shirts pictured below:
Suddenly we were aware (there's that big November word again!) of all of the people around us who had diabetes. People of all ages and from all walks of life were walking around in these blue t-shirts, instantly identifiable as PWDs (people with diabetes) to the world around them. People in blue shirts were nodding and smiling at each other. Parents pushing a stroller containing a toddler in a blue shirt had other parents of blue-shirted people coming up to them and offering support. A blue shirt made the wearer the star of the show, if only for a couple of hours.
There are some plusses to having an invisible illness- I've covered them here before. But along the lines of these shirts and of JDRF's T1D looks like me campaign this November, there are some plusses to being visible once in a while too. A big one is PWD's and those who love them finding each other for support.
Are there ways, even without the blue shirts, we can be more aware of and supportive of the people we know who are on this diabetes path with us? Can we be more attuned to picking strangers with diabetes out of the crowd? Even a smile and a nod go a long way towards not feeling alone.
If I ask a colleague to donate $10 to my walk for a disease she doesn't understand, she's unlikely to give.
If the big debate in town is whether or not to save money by eliminating school nurses, and my neighbor thinks that nurses just give out band-aids and call parents of sick children, she'll vote differently than I would.
If I tell the parents that my child knows everything she needs to know to be safe at the party, cross my fingers, and go home, they'll assume that what she's dealing with is no big deal.
Earlier this week I shared my diabetes awareness month goal of opening up a bit more about diabetes during regular every-day kinds of conversation: awareness-raising on a very small scale. These conversations feel, at first pass, inconsequential in the grand scheme of things. They seemingly pale in comparison to traveling to Capitol Hill to meet legislators or starting a foundation. I think, though, that I've been underestimating their importance.
In addition to the potential for more support for me, and for my family, those conversations have the potential for a big ripple effect.
Someone who's heard my story about a scary low blood sugar incident is more likely to keep an extra eye on my child at their house.
Someone who's heard our harrowing diagnosis story will be better prepared to support a friend or coworker whose relative is newly diagnosed.
Someone who knows the amount of time and money it takes to keep just one child with diabetes alive will be more attuned to legislative issues related to health care and medical research.
Someone who knows how very tired and occasionally anxious diabetes makes us will be more likely to buy that paper JDRF sneaker at Marshalls.
If I'm really doing it right, someone who hears our story might even pass it along to a friend who will be more likely to do all of those things too. And if every one of us whose lives are touched by diabetes were to share a story now and then about why it's a big deal, imagine the ripples we could create. We need to talk.
When my neighbor's husband died suddenly a couple of weeks ago her driveway filled with cars. The florist truck was on autopilot to her address. People arrived carrying trays of food. Her mailbox was full of cards.
As I pulled in my driveway this morning after school drop-off, she was leaving her house alone, headed for a day of work.
When my daughter was diagnosed with diabetes during Christmas week 2002, we were surrounded by support. By the time we'd returned home from the hospital, Santa and his helpers had filled our living room with toys. There were cards and phone calls from afar. Relatives and local friends brought us food and kept us company as we adjusted to this new and challenging way of life.
When my daughter called from the nurses office because she was low, again, last Friday, nobody was around to offer a hug.
My neighbor's grief has not gone away because three weeks have passed. Similarly, our family's need for support has not gone away because nearly thirteen years have passed. Both have become less visible, and less urgent. But we'd be much better off not traveling this road alone.
November is Diabetes Awareness Month. Grateful that raising awareness is not up to me alone, I intend to narrow my focus down to just a few avenues of awareness-raising. One area I've struggled with over the years is being open with even our closest friends about what living with this disease is really, really like.
Therefore, my personal goal for this November is to be just a little bit more candid about the frustrating, scary, and painful parts of having a child with diabetes. Maybe just once when I meet up with a friend and she asks how I am, I'll go ahead and share that I was up half the night treating low blood sugars. Or maybe I'll one-up a story of a cantankerous teenager with a description of what happened when I attempted to engage my child with a 300+ blood sugar in conversation yesterday afternoon. Maybe, given the opportunity, I'll even share that there are aspects of having a kid with diabetes which terrify me.
Friends and family are no longer at our door offering hugs and asking how they can help. The major crisis has long passed. We appear to be doing just fine: good grades, extracurricular activities, nice friends, weekend adventures. But it's my goal this month to raise awareness among those who care most about us that it's not all rainbows and unicorns. That we still need their support.