Tuesday, March 4, 2014
This is a story about something that happened last weekend. It is not advice, medical or otherwise. Except maybe to be extra-careful when walking on frozen lakes.
'Does your daughter have any medical conditions?'
I mumbled a little. "Nothing that's relevant here."
'Too young to have much of a medical history, huh?'
'Mmm,' I said with a tight smile.
The EMT continued to treat the facial injury.
We were at a family resort for a girl scout troop overnight. Our last outdoor stop of the day was to explore the frozen lake. I saw it happen in super slow-mo from about 30 feet away. My daughter was walking towards her friends when her feet went out from under her and her face hit the ice. We're unable to reconstruct where her arms went, but they were of no help to her mouth.
She bit deeply into her left outer lower lip. The left side of her mouth was swollen and riddled with abrasions and braces marks inside and out. There was a lot of blood. We took her inside, got ice, washed up her face and rinsed out her mouth. The bleeding wouldn't subside. We were told there was an EMT on site. I decided, particularly being far from home, that it would be smart to have it looked at carefully so I wouldn't wonder later if more should have been done.
My daughter later described our time with the EMT eloquently. "He had trouble finishing his sentences. And he kept repeating himself." He was perfectly kind, and gentle, and competent. But 20 minutes into his work, he was still cleaning the cut. He had reassured us that she didn't need stitches and that her teeth seemed fine. He was finally getting out antibiotic ointment and bandages. Then he asked the question. "Does your daughter have any medical conditions?"
I looked over at the rest of my daughter's girl scout troop, so patiently and lovingly gathered with the other parents, waiting for her. I thought about bumper cars, and dinner, and the evening fun to come.
I ran through the diabetes-related possibilities in my head. I knew I should be honest. But could anything either he or I would gain from the potential conversation be worth the 20 minutes it would take to have it? I mumbled my answer.
It felt really weird. As I denied the diabetes, her life flashed before my eyes: the traumatic events of diagnosis, the countless endocrinology visits, the pump and CGM stashed under her winter layers. What if none of that had happened? What if this lip injury was one of the most significant medical events of her young life?
Eventually we were walking towards the bumper cars with an adorable stuffed lion her friends chose for her from the gift shop (conveniently located adjacent to where we met up with the EMT) when my coat pocket vibrated and beeped. A glance confirmed the inevitable: 240, double arrows up. The adrenaline was at work. Diabetes was, indeed, relevant to this situation just as it is to just about every other one.
But I refuse to let it slow us down.
Friday, February 28, 2014
I'm one of those parents.
I'm the last one to leave the birthday party and the first one back. If I leave at all.
If parents are allowed on the field trip, I'm signed up.
I'm on the sidelines of every softball game from pre-game practice 'til the end and I insist on stopping by the bench at least once during the game to check in.
I hunt her down at the town pool to ask her if she's o.k.
She must text me when she starts walking home from school. If she's not home in less than 20 minutes, I'm headed up the street to look for her.
During school dances, I like to plan an outing with my husband or a friend at a restaurant across the parking lot from the entrance to the gym.
If she's somewhere without me, I'm constantly texting to check in.
I watch her while she sleeps.
People judge those parents. (Actually, people judge just about every kind of parent but that's a topic for another day.) 'Their kids will never gain any independence.' 'Their kids will be wishy-washy' 'Their kids will have no sense of self.'
For the judgers out there, two things to consider:
First the obvious, based on the theme of this blog. You may not know why a parent is hanging around the roller skating party or watching their child like a hawk on the museum field trip. This disease is unpredictable, and when put in unusual situations like the ones I've described, my daughter is very likely to have issues with her blood sugar for which she needs a trained adult's help. I hover because there's a real and ever-present risk, beyond what you can see, to my child's safety.
Second, the interesting part. The same words have come up at every teacher conference since preschool. My daughter is described as responsible, self-aware, and self-confident. How did this happen with me hanging over her for her entire life? I can't say for sure but I try to strike a balance when I can. When it's safe, I encourage independence. She walks home from school with a friend and her cell phone. She's been using a paring knife since she was 8. She attends sedentary birthday parties with uncomplicated food by herself.
When I feel, for her safety, that I must hover I try to be as invisible as possible. I don't roller skate with her (to be fair, there's more than one reason for this decision). I stand back while she hangs with her friends on the field trip. I'm at the umbrella table with the best view of the pool, but I'm usually reading my book. She knows that I'm there to help her with diabetes, not to be incessantly involved in the minutia of her life.
I often wonder if I'd be one of those parents if it weren't for diabetes. It's impossible, of course, to know. I've been hovering over her since before she could walk. It will get harder as she gets older, and I'm grateful for today's technology which makes hovering from a distance much easier. Hopefully I'll continue to be able to strike the balance between being available to help and letting her spread her wings.
Friday, February 21, 2014
By now many of you will have read this Miss Manners question and her response.
In a nutshell, when asked whether it's o.k. for a person with diabetes to test and deliver insulin in public, she said it was not; that both were best relegated to the restroom.
The diabetes community has responded with a torrent of messages to Miss Manners, comments following her column where it is published online, facebook posts and other forms of outcry.
While I certainly do not believe blood sugar testing should be relegated to a restroom, I do believe it should be done surreptitiously. Therefore, the responses to Miss Manners which read along these lines: 'If anyone has a problem with it, they should look away' bothered me a little bit.
Maybe it's where I'm coming from. My daughter was diagnosed when she was 13 months old. We've been through every stage of childhood with this disease, surrounded by other kids in the same stage. We've wanted to avoid freaking out the entire playgroup, or the family at the next table over in the kid-friendly restaurant. Therefore we've always taken care of the diabetes stuff, to the extent possible, on the QT. At a restaurant, and in the classroom, she checks her blood sugar without fanfare, in her meter case, in her lap.
She doesn't disguise her actions out of embarrassment. She does so out of consideration for others and honestly, a little bit, out of self-preservation. We understand that some people are upset by the sight of blood. We understand some families would prefer not to spend their dinner out answering 47 questions from their 4 year old about what's going on at the neighboring table. And, as a rule, we don't want to spend our dinner (or party or zoo visit) answering those 47 questions either. She understands that setting up her testing supplies and displaying her bleeding finger might be a distraction for the child next to her in math class. It's about balancing her own needs with the concerns of those around her.
My daughter checks her blood whenever and wherever she needs to. She just tries to do it in a way that isn't obvious. So far, in 11 years of public testing, nobody has stared or made derogatory comments. The only people who seemed to have noticed at all are the people we've met who also have diabetes.
So, gentle reader, here's my response:
The issue is not where you perform your diabetes tasks, it's how considerate you are of those around you while you do so. If they don't notice what you're doing, they'll have no reason to be concerned.
Wednesday, February 19, 2014
I learned a new word this week.
Chionophobia is defined by Dictionary.com as the 'fear of snow.'
If weather conditions don't improve soon, I'm at risk of developing a full-blown case of this disorder. For now, my fear is limited to times when snow and diabetes cross paths.
As the years go by, there are more and more places I'll let my daughter go without me. The 'what-ifs' of diabetes are ever-present, but visits to friends' houses and evenings at school events have become activities with which I'm fairly comfortable. This is good, giving her a sense of independence and allowing her to test the waters of responsibility.
A couple of weeks ago a friend's family invited her to go sledding with them. I momentarily considered dropping her off with her sled and coming back to my cozy house. Then I began to gather my snow clothes. Sledding and even walking in the snow can cause, for my child, steep and unpredictable drops in blood sugar.
When we arrived at the sledding hill on this particular day, my pockets were stuffed with diabetes paraphernalia. She began sledding with a blood sugar of 190, and dropped very, very slowly over the next hour and a half. I watched the Dexcom graph and made her stop an hour in to double-check with the meter. As we walked back to the car with the Dexcom reading 150 straight ahead, I was beginning to feel foolish for having tagged along. I was not. By the time we'd walked three hundred yards to the parking lot, I saw 68, with double down arrows. This turned into a juice and glucose tab and snack kind of low which wouldn't quit. Even my 'tween' girl was the first to admit she was glad I was there to help her.
A week later, a friend's mom called. Could she take the girls for a walk in the latest snow storm? Once again, I tagged along. We were climbing through snow banks and un-shoveled sidewalks. It was fun, but strenuous. We stopped twice for blood sugar checks and glucose tabs. We followed those up with juice and a hearty snack.
It's unlikely that at 16 she'll want her mom to come with her to the sledding hill. She'll need to figure out how to carry and use all those supplies in the snow in order to keep herself safe.
In the meantime, having a personal nurse and Sherpa is, I think, a perk to appreciate.
Friday, February 14, 2014
Friday, February 7, 2014
I don't speak 'orthodontist' very well.
My daughter and I have been visiting one for a few years now. A year and a half ago the first orthodontic appliance was installed: a 'space maintainer' in her lower palette. Three weeks ago, she had braces put on her upper teeth, complete with head gear.
We've had many consultations with the orthodontist. X-rays and brochures have been viewed together and discussed. Options have been explained. I'm embarrassed to admit that I understood about half of it. If I'm lucky.
In contrast, when we go to the endocrinologist, I follow along completely. I understand all the words. I ask questions if something's unclear and keep asking until I understand the answers.
Why the disparity? Our orthodontist is not the problem. She's a smart and articulate professional. She takes her time explaining things and is always willing to take more.
I think it's me. To be exact (this may sound bad), it's the degree to which I care about what she's saying.
When we leave the endocrinologist's office, I become the resident expert on diabetes for the next 3-4 months. I need to understand every detail about the diabetes treatment plan in order to make it happen 24 hours a day, 7 days a week. I need to be able to explain it to my husband, the school nurse and sometimes even the pediatrician. During every office visit, I'm absorbing information about how to keep my child alive and healthy every day, and for as long as possible. It's information which is crucial for me, and increasingly so for my daughter, to fully understand.
In our initial meetings with the orthodontist, we discussed a 2-3 year plan to straighten teeth. I understood in a general way that the space maintainer would hold her bottom teeth where they were. The braces would push (pull?) teeth to the back of her mouth to make room for a couple yet to come in near the front. Details of exactly how it all works remain blurry to this day. But in this case any missing information will not be life-threatening. I'm able to leave those details for the orthodontist to worry about every 8 weeks when we visit. I need to know a limited amount of information, like not to feed her hard, chewy foods and how to help her get the head gear on. I need to nag her to wear it and to keep her teeth really clean. Beyond that, my basic understanding of the process was enough for me to feel comfortable signing off on it.
Of necessity, endocrinology needs to remain my primary language and focus. I'll just have to muddle through in orthodontist. It's kind of a relief not to have to master another whole language.
Tuesday, February 4, 2014
The photo was created over the weekend and the image uploaded in time for yesterday's event.
We spent the rest of Monday shoveling snow.
So here it is, better late than never, my daughter's contribution to Diabetes Art Day:
We spent the rest of Monday shoveling snow.
So here it is, better late than never, my daughter's contribution to Diabetes Art Day:
|THE CIRCLE OF DIABETES|