Not Real Blood Though, Right?
I was in New York City, meeting up with my brother for lunch.
While I was waiting for him in the lobby of his office, two of his associates struck up conversation with me.
They liked me.
They really liked me.
They tell me to hang around for a minute, and then scurry away.
They invite me into a room with a large round table.
Soon, about ten people file into the room and sit down at the large round table.
They ask me questions. Random questions. "Tell us about yourself," one faceless person says.
Charlie appears. I have to test him.
I prick his finger and squeeze. A clear, water-like glob oozes from his finger.
It doesn't look like blood, but I fill the test strip anyway and get an error alert on the meter.
I nervously pull another test strip out of its canister and prick his finger again.
People around the table sense my growing panic.
This time a blue glob trickles from his finger.
I leave the room, I think. I can't remember. A thin young man in a red v-neck sweater calms me.
"It's OK, it's OK. He's 133," he says, meter in hand.
He looks like Justin Timberlake. He's holding Charlie. "I'm type 1," he reassures me.
A woman at the table mutters suspiciously, "that's not real blood though, right?"
I roll my eyes and think to myself: man, wait until I tell the OC about this lady.
I wake to a 25-pound drooling baby riding my incredibly full bladder like it's a Hoppity Hop.
The monkey. The Maeve-inator. Principessa. Maeve the Brave.
Maeve was just 4 years old when we rushed Charlie to the hospital in the middle of the night. She stayed with her Aunt Kimmie for five days, unaware of what was suddenly happening to her baby brother.
Everything revolves around Charlie. The forecast of the day is set by Charlie. It consumes us. It must consume us. It will consume us today, tomorrow, the next day, and all days after that. When we're not talking diabetes, treating diabetes or blogging about diabetes, there's 20-month-old Ben, wanting every ounce of excess attention. So, where does that leave the monkey?
This post goes out to the girl.
Maeve has a heart as big as Alaska. She'll compliment you on your hair. She is compassionate and kind. She's a daydreamer. She would share even her most special thing in the world with you without hesitation. She cries when she's happy. She's been planning her wedding since she was 2. She called movie theaters "movie gators" until she was about 5. She says "deal with it, dad" with a giggle, when talking about liking boys. She wants to author and illustrate her book, "The Dog with a Purple Ear."
Maeve is beautiful.
Maeve has been witness to thousands of Charlie's finger pricks. She's rubbed his head or held his hand for thousands of needle injections. She's seen way more blood than a child should. Always there. Always good. A good girl. So good that we've lost sight of how she has been affected by this disease.
Early in the school year, out of the blue, Maeve broke down crying in the arms of the guidance counselor. She said she was worried about her brother. This was a shock to us. She had never expressed this to us nor did she show signs of worry.
Since then, she has had a few big cries, sobbing about the boys getting all of our attention. We tried to explain that she wouldn't want the kind of attention that comes from having diabetes. But, she was clearly sad and had every reason to feel that way.
With large, gasping sobs she said, "why does Charlie always get his food and his drinks first?"
It was a very good question. She was right. Her snack and meal schedule became contingent on her brother's blood sugar. And when they did sit down to eat, I found myself stuck in the routine of getting food to Charlie first all the time. Even when it wasn't necessary.
We sometimes role play on weekend mornings where I play various waiters, taking the kids' breakfast orders and delivering their food.
There's Pierre, the French waiter (real original, Carey); Godfrey, the grizzled old Scottish sea captain who tells scary stories; Sebastian, an insecure, overly apologetic, odd sort; and Cowboy, who, uh, sounds like I suppose a cowboy would.
Just a few of the horribly stereotypical and culturally insulting characters that I play.
So, it's not too uncommon for me to enter the dining room with a Texan accent like Flo Castleberry from the TV sitcom Alice.
"Reckon y'all wanna start with some coffee while yer lookin' at the menu?"
I'm going to try very hard to break the habit of serving Charlie first. It's Maeve's turn. She deserves it.
And ya know what? I may not even spit in her pancakes this time when she sends it back because it's too cold.
Our Meeting With Gary Scheiner
We met with Gary Scheiner yesterday afternoon in his office just east of Villanova University.
Charlie, who is quite shy with adults, warmed up after Gary took him on in a game of tic-tac-toe. Still, I served as interpreter.
"Tell him if he likes Star Wars," Charlie whispered hot and steamy in my ear.
"You mean ask him?" I whispered hot and steamy back in his.
Gary and his staff were great. He got right down to the business of making things better and we felt immediately confident that he could do so. He downloaded the data on our meter and printed out the problem areas in what looked like a constellation of high BGs. We rejiggered bolus levels slightly, talked about the importance of basal testing/fasting and discussed Charlie's diet.
"Tell him I like bananas cut up in a sandwich," Charlie whispered hot and steamy in Susanne's ear.
Gary explained things clearly and used simple diagrams to illustrate, for example, why Charlie has very high BGs on site change days. It's something that has stumped and frustrated us for a while. We had thought it was the stress of the site change. Gary pointed out that we weren't changing his site in conjunction with a meal bolus. A timing issue. He illustrated how it was taking a long time for the basal drip to make its way through his fatty tissue. Changing the site just prior to a meal bolus could likely get that insulin stream flowing.
Yes! That makes sense! Something makes sense! I got slightly teary.
He also mapped out an effective way to move sites around the landscape of Charlie's butt. Charlie liked Gary's illustration: ( i )
Though I listened intently, I did find myself looking around like a tourist. I spotted signed posters of professional athletes and one of Nicole Johnson Baker that said "Gary, God Bless You." On his "Wall of Fame" in the waiting room area, there was a clipping of Allison and I spied with my little eye something else in Gary's office - Scott's WTF Did You Eat? meter picture. Gary mentioned that he was going to pass that around at the next support group meeting.
Near the end of our session, Gary showed us clippings of many professional athletes, pointing out to Charlie that they all had type 1 diabetes.
"What do you want to be when you grow up, Charlie?" Gary asked.
"A fireman ..."
"But without a mustache."
In just our first visit, I feel our diabetes doldrums lifted. I feel hopeful that we can do more, we can do better.