You Don't Send Me Flowers Anymore


Rose Logo w give here


Two years ago my husband stopped sending me flowers for Valentine's Day. 

Our favorite florist has not gone out of business.  The magic is not gone.  We have not gotten a cat like my childhood one who eats the flowers and then throws them up all over the house. 

We just decided that the following is true:

Flowers die.  Children shouldn't. 

The Spare a Rose, Save a Child campaign asks us to donate the cost of one Valentine's Day rose ($5) to Life for a Child, which is part of the International Diabetes Federation.  Life for a child's mission is "Saving the lives of children in the developing world." According to their website, Life for a Child is currently helping 17,000 children and youth with diabetes in 46 countries.  Also from their website, the program aims to provide:

  • Sufficient insulin and syringes
  • Blood glucose monitoring equipment
  • Appropriate clinical care
  • HbA1c testing
  • Diabetes education
  • Technical support for health professionals 

  • Can you imagine being unable to access insulin for your child with diabetes?

    Can you imagine dosing insulin with no access to a glucometer or test strips?

    Can you imagine being handed insulin and syringes with no meaningful education on how to use them?

    Can you imagine seeing your child ill and suffering and subsequently die from undiagnosed diabetes?

    I can't quite imagine any of those scenarios, but I know that they're happening in at least 46 countries around the world.  And I'm certain that if there's anything I can do to help even one child have access to basic diabetes care, I need to do it.

    So once again, we'll spare a dozen roses their Valentine's Day fate. 

    Please join us, and save a child instead.




    ALARM


    The meter asked nicely first, on Sunday if I recall correctly.  "Replace meter batteries soon." Or some similar request accompanied by a gentle, high pitched 'beep beep.'  It asks for new batteries periodically, and thus far we've always replaced them by the third or fourth reminder.

    But we didn't. We had all kinds of excuses. We were out to dinner. The batteries were in the basement.  The phone was ringing. It was bedtime.  I'd do it after the getting to school chaos had ended.  We were about to sit down to eat. 
    
    So today, it decided we needed stronger words:



    This message was still accompanied by the gentle 'beep beep,'
    though it reads like it should be accompanied by a blaring horn.
    
    
    We've never ignored the gentle reminder long enough to get yelled at like this before. It worked, of course.  The batteries are changed and things are back to normal.  Sometimes we just need to be spoken to in no uncertain terms.


    Sleepover Dilemma


    Sleepovers at friends' houses always pose dilemmas: uncertain menus, late night activity, relying on the Dexom for alerts of overnight issues,  heavy breakfasts, and more; but this weekend was the first time I found myself in a quandary right here at home.

    Home game sleepovers aren't completely uneventful, diabetes-wise.  We've had to check blood sugars at 2 or 3 a.m. with another child in the room, and even had to give juice or corrections.  To my knowledge the friend I desperately try not to step on as she dreams in her sleeping bag has never woken up.  Snacks and bedtime involve a more structured routine than most of our guests are used to but they are, of course, kind and flexible as any good friends would be.

    Sunday morning presented a new quandary though.  I woke up at 7, and my daughter and her friend were, as expected, still silent in my daughter's room.  The Dexcom read 80, straight across.  At 7:30 it read 76 straight across and it was still very quiet in the house.  At 8, it alarmed:  69.  Here's my thought process:

    At 2 a.m., the friend would certainly sleep through my barging in, but at 8 a.m., chances are good I'm going to wake her up.  I don't want to do that.  The sensor is only a day or two old and it seems to have been running a little low since we revved it up.  It's probably just still a little bit off.  And with the margin of error on all blood sugar readings if  I wasn't running in there at 76, how different is 69, really? But, of course, what if it's off in the other direction and she's really 50 and I don't do anything about it? If she's 50, that's bordering on dangerous.  But maybe it'll go back up.

    By the time I'd hemmed and hawed over all of this, it was 8:20 and the Dexcom alarmed again:  under 50.  It buzzed four times since we had it set to vibrate first, then to beep if the vibration went unacknowledged.  Now at this point, I'd been listening very intently, hoping for any sounds of life from the bedroom.  I was pretty sure I'd heard my daughter moving around in her bed (there's a squeaky spring). So I put Dexi in the bathroom, on a shelf which backs up to the head of my daughter's bed.  A minute or two later it blared, "beep beep beep beep!" 

    At which point I heard her get up, grab her meter and check, and get back into bed.  It was still quiet.  The rattles, clicks and beeps of the blood sugar check hadn't woken her friend.

    Within 10 minutes, the line on the Dexcom graph started going back up.  My daughter's friend woke up a few minutes before 9, and they came out for breakfast soon thereafter.

    "I guess you corrected when Dexi alarmed at 8:20?"

    "No- I was 88.  I just got back into bed."

    Should I have acted sooner?  Probably.  A severe low blood sugar emergency would have been worse for the friend to wake to than me creeping around her air mattress.  But am I  glad I didn't wake her up for nothing?  I am.  What would others have done in my shoes (or slippers)?  I'd love to know.

    The Screen as a Diabetes Management Tool



    This article, Tech Can Be a Boost to Teens' Diabetes Self-Management, crossed my twitter feed this week.  It lists five specific technologies used by kids with diabetes: social networks, texting, mobile diabetes apps, diabetes-focused websites and pump or meter software. Our household's experience mirrors the positive results of technology on diabetes management found in the study.

    The most used technology for management in our family is texting.  I get texts from parties and visits to friends' houses.  A mystery food has appeared- here's a picture and would I help guess the carbs?  She knows she'll be tired when she gets home but wants us to remember to do site change since she's down to 8 units.  She's low and has treated it but needs a virtual hug.  She's awake the morning after the sleepover- I can enjoy my coffee in peace. Texting is a quick and inconspicuous way to ask me for advice, help and support.

    We do a little less with software. When we get around to downloading the Dexcom, looking at those numbers together does help her buy into any changes we need to talk about making.  She can see, for example,  the daily spike after breakfast and (at least for a few days) will be more likely to bolus before starting to make breakfast instead of as the food is entering her mouth.  This calendar year will bring 'Dexcom Share' to our family's cell phones, which I imagine will also increase awareness and communication. 

    Social media is, to me, the most interesting tool.  It's where the intangible boost comes from. My daughter will share memes with me from accounts she follows on Instagram.  I'll send along blog posts or let her read funny tweets I come across.  She's not learning any specific treatment tips from her Instagram feed. Instead, she's getting support, encouragement and a sense of community.  She's able to see that there's a whole world of people out there living well with the wins and losses, laughter and tears, and the endless daily grind of diabetes. 

    Being able to text me questions allows for better blood sugar control even with increased independence. Being able to visualize blood sugar trends allows us to work together to attempt to improve them.  But knowing that there are all those people out there who have so many of the same diabetes-related experiences she does?  That might be the most important boost to self-management: a healthy perspective on the whole mess.

    It's Great- But It's Not For Us


    Last week, the American Girl company started selling a diabetes care kit for dolls.  It's a great option for girls with diabetes and for those who love them.  Play is a great way to process all sorts of childhood experiences, including that of having diabetes. My daughter has spent countless hours playing with her teddy bears with diabetes- checking their blood sugars, providing them with pretend pumps, and feeding them carefully calculated treats at tea parties.

    Her American Girl doll, however, does not have diabetes. And, as I wrote a couple of years ago in the post below, she does not want to. I double checked with both girl and doll, and neither wants the diabetes care kit.  They may want to visit the American Girl store to check it out, though. I definitely do.


     
    The American Girl Store sells a variety of medical and dental accessories.  Depending on her needs, a doll could have her own allergy-free lunch, a wheelchair, a hearing aid, a retainer, or glasses.  These items allow children to make their dolls a bit more like themselves, or like people they know.
     
    My daughter was perusing the catalog one recent afternoon, dreaming of all the items she'd own if we had a dedicated 'American Girl Wing' in our home.  She was considering whether her doll, Kit, would ever need a wheelchair.
     
    "Maybe some day, they'll make an insulin pump for American Girl dolls," I thought out loud.
     
    The reply was instant and adamant. 
     
    "I wouldn't want one."
     
    A pause. 
     
    Then, "Why would anyone want that?"
     
    "Why not?" I asked. 
     
    "I wouldn't want Kit to have diabetes," was the quick reply.
     
    "No?" I prompted, thinking about how much Kit has in common with my daughter.  She has a ballet outfit, a softball uniform, her own instrument and music stand, and tons of tiny books.
     
    "Can you imagine me telling her she suddenly had diabetes?  She'd be so upset.  I wouldn't want to do that to her.  She wouldn't want to have diabetes."
     
    Of course she wouldn't.  
     
    Indeed, who would?
     
     

    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.