This link will bring you to a New York Times op ed documentary called 'Midnight Three & Six.' The video is about 11 minutes long. If you haven't seen it, go ahead and watch. We'll be here when you get back.
In a nutshell, this is a strikingly produced documentary depicting one family's experience with type 1 diabetes. This family's experience has been scary for them. The daughter, Grace, experiences hypoglycemia unawareness. She has lost peers to the disease. The family is genuinely afraid that Grace will die from her diabetes. They are vigilant. They are anxious. They are overwhelmed. The long silences and dim lighting speak volumes about this family's experience.
Take a moment and go back to sample a few comments if you haven't already done so. Perhaps you've also seen some commentary from the diabetes online community. What concerns me are the negative comments from other people and families living with Type 1 Diabetes. There were comments from people who never check at night asserting this hypervigilance was uncalled for; ones from people who found fault with the depth of the family's fear; ones from people who believe a CGM will solve all the household's problems; and ones asserting that diabetes isn't really that bad and that these people should get over it and move on with life. There are concerns that this film does not accurately depict life with diabetes. Maybe you thought some of the same things.
To me it seems important to remember that this is a filmed snapshot of a real family and their very unique experience with this disease. The number of deaths this family has experienced from Type 1 diabetes is alarming. If I knew 4 kids who had died of diabetes in the past 5 years I might never sleep again. The mom tells us that Grace's blood sugars are unpredictable. I'll take that to mean 'more unpredictable than normal' and go on to note Grace's age of 15 which comes with its own very unique set of challenges. They are, like the rest of us, doing the best they can with the information, skills and help they have available to them.
Do we live with diabetes exactly like this family does? Does this film accurately depict the details of how we cope with this disease? Of course not. But their life is not foreign to me. I jumped every time the mom's alarm clock rang because it makes the same sound as mine does in the middle of the night. My daughter drinks Clifford juice boxes too. Grace's concern about stopping to check her blood sugar while being filmed made me smile since I'm sure my daughter would have asked if it was o.k. too.
I wonder what kind of commentary would come my way should a documentary be made about our life with diabetes. I'm sure there are ways we do and think about things which differ widely from others' perceived 'right way.' We're not perfect. But we, like this family in Texas, have been handed the impossible job description of 'acting pancreas.' No film could ever depict the multitude of ways people end up acting and feeling when the diabetes diagnosis is handed over or in the years that follow. I can only guarantee you that nobody is perfect at it. We can only do our best.
From the time my daughter was diagnosed at 13 months old until she was almost 3 and got her first insulin pump, we managed her diabetes with shots of insulin. She usually received 3 shots per day: breakfast, afternoon, and bedtime: thigh, arm and bottom respectively. Each one was a challenge.
During our hospitalization, an educator suggested having a specific location in the house where diabetes care took place, particularly the painful and scary parts. This turned out to be among the best practical advice we received. The upside was that she knew that in all the other rooms of the house, she was safe. Nobody was going to appear with a needle or a lancet. The downside, of course, was that if she was being taken to the room she was bound to get jabbed with something.
The good news was that there was a t.v. in the room and t.v. was a rare treat. People with kids my kid's age will remember the advent of 'Noggin' and be familiar with Oobi, Oswald, and Miss Spider's Sunnypatch Friends. Oobi was on approximately 12 hours a day I think, despite a very limited number of episodes. Those peculiar talking hand people will be forever intertwined with my experience of giving insulin shots.
Day after day, we'd go into the room, I'd turn on Oobi and we'd check her blood sugar, which she called 'doopities.' I'd draw up the insulin shot based on her blood sugar and anticipated meal carbohydrates. Then came the fun part.
Anyone who's met a toddler knows they're not the most consistent bunch. Sometimes she'd cooperate, and sometimes she'd (understandably) want no part of this activity. Sometimes she'd change her mind about how she felt about the whole thing halfway through. So it was necessary to immobilize her as much as possible. If she decided to flail at the syringe halfway through a shot, not only would she not get her proper dose of insulin, but she could cause injury to herself and possibly to me.
For the arm and leg shots, I'd gather her into my lap and become a pseudo-octopus. I'd wrap one arm around her, pinning both of her arms to her sides and her legs between mine. Then, with the pinning arm, I'd pinch up a little arm or leg fat and with the 'free' arm, I'd administer the shot. Bum shots involved pinning her standing against the bed with one arm holding her arms and the other administering the shot. This one was easier with 2 people and 4 hands, so became our evening site so daddy could help. These methods were not, incidentally, suggested by medical professionals but rather the successful result of much trial and error.
I surely couldn't have gotten through those first couple of years without help. I've thanked family, friends and medical professionals who gave support and advice. I just wish there was a way to thank Oobi, Uma, Keiko and Grandpoo.
The Dexcom buzzed incessantly for days.
Friday: High. High. High.
All weekend, Monday, Tuesday: High.
It was like we'd swapped out the insulin in the pump cartridge for simple syrup.
We tried every trick in the book:
Site change? High.
New insulin? High.
Walk around a museum for 4 hours (which has never failed to result in a low)? High.
Walk around the mall (also tried and true). High.
Another site change. High.
Up the basals. High.
Rage bolus, repeatedly. High.
When she wasn't across the alarm line of the Dexcom, she was skirting it and dropped below the mid-100's only twice over several days.
Then suddenly after dinner last night? 120.
All night: 120-150.
This morning: 115.
Why? I can't be sure but I think perhaps the hormone factory ceased its overtime production.
Since last week, she's been HUNGRY like only a 13 year old can be. And she's been 13 like only a 13 year old can be. A scientific explanation of growth hormone and puberty, and of their impact on blood sugars can be found here.
A less scientific description can be found above.
A week or so ago I participated in an online diabetes survey in which one of the questions was, 'do you have an A1C goal? If so, please provide a number below.' The question made me pause for a moment, but my answer was 'no.'
The real answer was only sort-of no. Our A1C goal is not quantifiable. It's to do our very best at managing this unmanageable disease. It's to get the lowest number we're capable of getting every three or four months.
One would think that not having a numerical goal would lead to less glee or disappointment when the all-important number is unveiled at every appointment. But the truth is that I always have a guess, optimistic or pessimistic depending on my sense of how the past couple of months have gone. Sometimes my guess is high and I'm pleasantly surprised. Sometimes I come away feeling unpleasantly discouraged. Sometimes I'm so close to the actual number I consider a side trip to the race track on the way home. But no matter what the result, I can't say this test plays a huge part in our daily diabetes decision making.
Do I think about the A1C as the months go by? Sometimes. When we're having a few days of high numbers, I file the week in my memory to explain a higher A1C. A few days in range will give me hope it won't be so high after all.
But it's more of an afterthought. My goal for my daughter is not a good A1C. It's for her to feel well every day. We strive to avoid the kinds of major highs and major lows which would impact her functioning and fun on a daily basis. We strive to keep her pump humming and her blood sugar monitored with the understanding that this steady flow of insulin and awareness lessens the likelihood of complications down the road. Then we work to incorporate these arduous tasks into a full, happy life at school, activities, home and wherever else the road may lead her.
These more immediate goals should, and usually do, lead to an acceptable A1C. But that's not our goal.
My daughter has been wearing head gear to bed for almost a year. Head gear works with braces to pull the teeth back with additional pressure. For the uninitiated, Kit Kittredge has agreed to demonstrate the look with her own equipment:
|Kit wants you to know that wearing head gear while playing volleyball is not recommended.|
At yesterday's appointment my daughter was told she no longer needs to wear the head gear. She'll switch instead to an unpleasant configuration of rubber bands, but overall this was good news. The head gear was uncomfortable and significantly limited her side and stomach sleeping. It was also unfashionable. So for those reasons alone, she's thrilled.
At 4:30 this morning, the Dexcom buzzed. "LOW." A finger stick confirmed 60-something, so I got the juice. "Sweetie, you need some juice. Sit up," I nudged. It was gone in 4 sips.
"Wow. That was easier!" she happily remarked as she snuggled back under the covers with a smile.
You see the head gear, with its attachments both inside and outside the mouth, made drinking a true challenge. First she had to figure out how to slip the straw in her mouth around the metal. Then, four ounces of juice would take a good minute of noisy slurping to consume. The process was interspersed with verbal encouragement from the parent and attempts to roll over and go back to sleep from the kid.
Whether she was awake longer after the previous juice drinking marathons, or last night from the excitement of being able to drink easily I can't say.
The circumstances were not great. My daughter and husband ended up traveling without me over Christmas. A local relative needed me close by. They were gone for 3 days and nights during which I spent good quality time including playing many games of Scrabble with the aforementioned relative, caught up on my reading and binge watched HGTV. It wasn't the worst Christmas I've ever had, nor was it the best.
What was unique about it was going 3 days and nights without diabetes. This is a luxury my daughter and millions like her may never have. As a parent, I've never had it either until now.
The sleep was the highlight. I can't remember the last time I slept through the night more than 1 night in a row. Except maybe when I was so sick I couldn't haul myself out of bed anyway. It's truly amazing what 3 nights of uninterrupted sleep can do for a person. I felt rested when I opened my eyes. I felt less scattered. I didn't yawn throughout the day. I didn't even finish my usual allotment of coffee in the morning.
Perhaps it was a combination of the sleep and the lack of diabetes questions (o.k.- and maybe being home alone), but my concentration improved. I read for hours without moving from the sofa. I started and finished a few small projects without jumping between them or leaving them for another day. I got up, made coffee, ate breakfast, checked the news and left the house without doing a single math problem.
I ate 10 meals without counting a single carbohydrate. I had lunch out without menu negotiations or french fry approximations. I ate a bagel without anyone looking at me with sad puppy dog eyes because she knows they're horrific for her blood sugar and she only indulges about twice a year. I snacked without making two equal bowls of 12 carbs of crackers to go with the hummus. I ate at 4 in the afternoon once, and 7:30 at night the next day.
I often wonder where I'd be if diabetes hadn't entered the picture. This was just a small glimpse of the possibilities. Evidence shows I'd be well rested. I'd get more accomplished in a more orderly fashion. I'd have time to read. I wouldn't count my food.
I sure missed the kid who has the diabetes though. I'd give up bagels forever for her.
Personally, I love a good appetizer and snack focused buffet table. Interesting dips, meatballs, crackers with good cheese and foods encased in puff pastry are a few of my favorite things. Top it off with a good cookie table and it's perfect. If I'm there alone.
With my daughter around, a couple of hours of happy grazing turns into a couple of hours of math and negotiating.
When there is a buffet table, one is expected to graze. You have a mini hot dog, meet the relative in from out of town, try a couple of dips, chat about the school play, make your way to the meatballs where you spend time with the party host; and on it goes.
The first problem with this scenario is that each snack requires a math problem and a bolus. When every conversation is interrupted with 'I took 4 meatballs, mom,' or 'I just ate 7 corn chips,' it's hard to carry on a conversation. When I'm interrupted to nix the plea for a 4th cookie, my already limited cocktail party-related social skills take a big hit.
The second, but related problem is an extension of the standard regular-people buffet party challenge. If I have a drink in one hand and a little plate in another, I already must find a third hand to eat. Add the meter remote to that third hand and I'm out. Even with the understanding that every mother develops a third hand (a.k.a. the ability to juggle well), this scenario becomes impossible and I remain hungry or thirsty so that my kid doesn't end up high.
So a buffet party turns into me with a drink OR food in one hand, following my kid with the meter remote while trying to make small talk and perform carbohydrate equations in my head at the same time.
Ironically, I suppose, we throw one of these parties every year. The difference is that I painstakingly create a list of every food with its carbohydrate content and post it on the fridge. My daughter takes the meter remote and is able to do her own juggling act while I play hostess and eat my fair share of mini quiches.
In a perfect world, we'd be handed a cheat sheet at the start of every party, and one of these cool plates .