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.

Waste Not, Want Not


We don't usually get down to the actual last drop, but this is what the pump screen looked like when my daughter got home from school yesterday.

When she started pumping (at 3), I put about 40 units in the cartridge with each site change.  We're up to 100 now and it looks like we need a little more.

Although maybe when Christmas cookie season has passed she'll be less likely to come home running on fumes.

Enough Already

Here's an abbreviated list of things I wish I never had to do again:

-Hear my alarm clock at 2 a.m.

-Receive a text that has only a blood sugar number in it.

-Answer a call from the nurse's office.

-Hear "I feel low."

-Do math before my first cup of coffee or in the midst of a party.

-Lug pounds of diabetes supplies through a museum or up a mountain.

-Worry whether my child is passed out somewhere.

-Explain type 1 diabetes.

-Argue with a pharmacist, insurance company representative or medical provider.

-Support my child through a disappointment or frustration diabetes has caused her. 

This parenting a child with diabetes job is intense and unrelenting. Being responsible for keeping another person alive,safe and healthy is a stressful job. It involves countless physical, mental and emotional tasks every day. I must also help with the math homework, do some laundry, make dinner and provide sufficient regular-people parenting support to a 13 year old.  In my spare time I should surely contribute to society in some productive way.  Then I need to get out to see the latest movies, read the big novels, exercise, and make time for the rest of my loved ones.

I've heard diabetes described as a juggling act among carbs, insulin, activity and multiple other factors, and it's a good  metaphor.  There are occasional days when this juggling act seems possible.

But then diabetes throws in a knife or a flaming torch and all those other balls must instantly lose my attention.

Seasonal Chaos

'Tis the season.  The busy one.  With the endless stream of places to be and people to see.  The one with the cookies and cider.  The one with distractions around every corner.

With the aforementioned cookies, cider and chaotic schedule, diabetes should really be getting more attention this time of year.  In a sense it does, with increased blood sugar checks and carb count research.

What we lose track of is the big picture stuff.  Does the basal rate or carb ratio need to be changed at dinner or has she been high after dinner every night because we spent the weekend eating leftover Thanksgiving pie for dessert?  How could we possibly do any kind of basal testing to see which we should change when there's leftover pie to eat for dessert?  If it seems something should be changed, can I manage to remember to do so when she and her pump are in the house with me or will I only think of it when she's at school or when we're together at a gathering at dinner time?  That's the current dilemma here.

Last week brought a night when it was tough to squeeze in just 10 minutes to do a site change.

Next week I need to remember to order the test strips.  It remains to be seen whether I can retain that in my memory bank (or even notice it among the items on the seasonally long to-do list) by then.

To a certain extent, I think letting the diabetes stuff sink a bit among the priorities is o.k. once in a while as long as it doesn't drop too far.  A little change of focus can do wonders for the mental health.

The trick in this season, which lasts over a month, is to bring it to the forefront again on a regular basis to address the troublesome spots.

So tonight, no pie.