Walking Again

Our family is walking in this year’s Walk To Cure Diabetes on Sunday, October 2nd.  We’re dedicating this one day to our daughter and the many kids like her because for them, diabetes is every day.

 Our daughter has had diabetes every day since December 21, 2002. Every day, she pokes a finger 8 or 10 times to test her blood sugar level.  Every day, she wears her pump which is continuously giving her the life-sustaining insulin most of us make easily on our own.   Every day, before she eats, she stops for a math exercise in which she adds up the number of grams of carbohydrate in her meal.  Every day, before she takes a walk or plays outside, she stops to consider whether she needs to adjust her pump or have a snack to prevent a low blood sugar reaction.   Every day, she carries a glucometer, a juice box, and an emergency kit with her wherever she goes.  Every day, her parents sent an alarm clock for a middle of the night blood sugar check in case dangerous low or high blood sugars need to be taken care of.  Every day, we worry about diabetes.

 We’re dedicating this day to our daughter with the belief that some day will be the last day for diabetes.  JDRF is an organization which was founded by parents and which has become the leader in research on Type 1 Diabetes.  We continue to believe their claim that the day is in sight when people will live without the day-to-day responsibilities and anxieties of diabetes. 

This letter went out to our friends and family asking for their support of JDRF, in honor of our daughter.  Some walk with us every year.  Others donate.  Some can do neither, but are generous with hugs and kind words.  All help us maintain our hope that a cure will come some day.
I believe Invisible Illness week was last week, but better late than never, here are my responses to a meme I found over on Six Until Me

1. The illness My Daughter lives with is: Type 1 Diabetes

2. She was diagnosed with it in the year: 2002

3. But she had symptoms since: Maybe a month or so before. We should have bought stock in a diaper company.

4. The biggest adjustment we’ve had to make is: Being unable to leave the house without a bunch of diabetes supplies, even for a quick walk around the block.

5. Most people assume: That her diabetes is “under control” and that her day to day care runs on autopilot. 

6. The hardest part about mornings are: Making sure she gets out of the house with lunch, snack and a note for the school nurse. Too often, we’re 2 for 3 on that one.

7. My favorite medical TV show is: I can’t watch them.  We’ve got enough medical drama at home.

8. A gadget my child couldn’t live without is: A glucometer. 

9. The hardest part about nights is:  It’s maddening, and also quite challenging, to give a sleeping child juice at 2 a.m.

10. Each day she takes 0 pills & 1 vitamins: And infuses insulin constantly. That’s really the most important part, no?

11. Regarding alternative treatments I:  Roll my eyes.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. It’s nice to be able to hide it as long as your pockets are big enough.

13. Regarding working and career: I think child labor is still illegal in our state.

14. People would be surprised to know: That I could tell them how many grams of carbohydrate are on their plate.  And that I think this would make a fun party game.

15. The hardest thing to accept about my new reality has been: That it’s not new, and that the cure in 5 years they told us about has been 8 so far in the making.

16. Something I never thought we could do with my daughter’s illness that we did was: I’ve always said nothing’s impossible, but our trip to Europe with its many changes in routine and loss of control over menu plans was an extremely fun accomplishment.

17. The commercials about my illness: Always feature a glucometer with a blood sugar of eighty-something. 

18. Something I really miss doing since my child was diagnosed is: Having the phone ring and not always assuming it’s because my child is having a medical emergency.

19. It was really hard to have to give up: Leaving the house empty-handed (see #4)

20. A new hobby I have taken up since my daughter’s diagnosis is: Blogging.

21. If my child could have one day of feeling normal again I would: Stick a wad of cash in my back pocket and go to a county fair where she would proceed to eat herself silly.

22. My daughter’s illness has taught me: Incredible math skills.

23. Want to know a secret? One thing people say that gets under my skin is: “She can’t eat that, right?” 

24. But I love it when people:  Call me and tell me their food plans before a party so that we can plan ahead.

25. My favorite motto, scripture, quote that gets me through tough times is: To everything there is a season and a time to every purpose under Heaven.

26. When someone is diagnosed I’d like to tell them: Diabetes is now going to tag along wherever you go, but you’ll be fine as long as you never give it the job of navigator.

27. Something that has surprised me about living with an illness is: How many really great people I’ve met because we live with this.

28. The nicest thing someone did for me when my child wasn’t feeling well was: Santa visited our hospital room a few days after my child was diagnosed.  Santa is the best.

29. I’m involved with Invisible Illness Week because: I can’t have an invisibility cloak like Harry Potter, so this was the next best thing.

30. The fact that you read this list makes me feel: Like maybe diabetes is a little less invisible, even though there are still days we’ll want to keep it in my daughter’s pocket. 
And grateful that you put up with my inability to fix the weird formatting.

A Tricky Balance

Before the first day of school, we had our annual visit with the nurse and this year's teachers.  There is a stipulation for this meeting in my daughter's 504 plan.  The purpose is to make sure the teachers understand what Type 1 Diabetes is, and how it affects my daughter's daily routine.  We review her low blood sugar symptoms, show everyone her pump, and discuss her need to pop down to the nurse's office on occasion.

It's a tricky balance, this meeting. 

On the one hand, the purpose is to make clear that diabetes is a serious thing to contend with.  Untreated low blood sugars could lead to confusion or even fainting.  High blood sugar during an important test could result in poor grades. Skipping morning snack can throw her out of whack for the rest of the day. Forgetting to bring the little bag with meter and glucose tabs outside during a fire drill or real emergency could, unnecessarily, result in an even bigger emergency.

On the other hand, we're trying to convey that my daughter is a regular kid and wants to be treated as such.  This is something she lives with every day, and if we were in a constant state of alarm or anxiety about it, we'd never survive. Once she gets the hang of the weekly routine, she wants to slip in and out of the classroom unnoticed.  If she raises her hand and says she feels low, a buddy needs to be assigned to quietly escort her downstairs, but there need not be a sense of panic throughout the classroom.  Her teachers should be concerned about her, but not asking her if she's o.k. every 15 minutes.  On a regular basis, she needs no special treatment or accomodation.

The essential message is this: "This diabetes thing is a really big deal.  Please don't make a really big deal about it." 

Tummy Trouble

If only my daughter would throw up before I bolus.  This one wasn't as bad as the stomach bug that hit half an hour after Christmas dinner, but still left us scrambling to undo a lunch bolus for 50 carbs. 

It may seem strange to a non-diabetes family to realize that as I was holding hair back and wiping tears, I was already scheming what I had in the pantry or fridge that my child could eat.  Under most normal circumstances, one would avoid feeding anything to someone who had just thrown up.  Maybe in an hour or two you'd offer a sip of ginger ale or tea. 

For my child, however, once she was upright on the sofa, she had regular coke and a straw in front of her.  The every 15 minute blood sugar testing began. 

150.  Good...a little wiggle  room.
97.  Not bad, have a sip. 
84.  Still ok...just keep sipping slowly, sweetie. 
68.  Hmmm...do you think you could get down some smarties? 
52.  OK...guess it's time to go for broke, hon.  Drink at least half the soda.
80.  An improvement! 
75.  I think the real sugar blue jello is ready...want some? 
134.  Finally!

She finished a 20 oz. coke, half a cup of blue jello and a role of smarties in the first 2 hours after throwing up.  That combination alone, without a stomach bug, would make me throw up, but she held out until later that evening when things had stabilized.

For the Christmas episode, we ended up mini-dosing glucagon as suggested by our endocrinologist and as described here on the Children With Diabetes website.  That bug was much more severe, and she could keep absolutely nothing down.  It was extremely effective and saved us an ER visit. 

Stomach bugs are tough enough diabetes-wise with their concurrent dehydration, ketones and change in meal patterns.  Let's hope the next one starts right before breakfast.