Tag Archives: Life

Common Unity

com·mu·ni·ty    kǝ-‘myü-nǝ-tē\  n.   
            1. A unified body of individuals.

We were blessed to spend our Thanksgiving this year with a wonderful group of new friends. This group of people has been working together, living together, and celebrating together throughout the evolution of life over the past ten-plus years. They are singles, couples, parents and children, and soon-to-be-parents. The group has shifted and changed over time, but their core values persevere:

Love. Compassion. Support. Joy. Family.

Put into practice, these values result in acceptance, generosity, genuine interest in the lives and hearts of other people, true emotional connection, and gatherings that are dang fun.

Something new that my brood and I bring to the group is diabetes. Insulin, pumping, finger sticks, hypos, infusion sets, middle-of-the-night alarms, carbohydrate counting–these are things that are now so pervasive in our lives that I’ve almost completely lost the perspective of life without diabetes. Spending extended time like this with new friends makes me more aware of just how burdensome and strange it all can be.

For example, another mom in the group offered to take Luke home with her from the park we were all at to play with her son, and it took me nearly a full 60 seconds of silent internal deliberation, calculation, and trouble-shooting to even answer her. And then I had to give The Plan. And then I made mental notes about absolute times when I was going to need to call and check-in. Would 1 hour be too long? I’m sure I seemed like a crazy person.

And did I wake anyone when I was shuffling through the house, barely conscious at 3 o’clock in the morning, to maneuver through a pile of sleeping kids and check blood sugars? Did anyone notice the vacant stare I adopt when my kids sit down with a plate of food and I’m mentally analyzing and calculating the carbohydrate content? That fleeting look of panic when someone starts to cut up pie?

Evie learns to make pecan pie from scratch. Score!

Evie learns to make pecan pie from scratch. Score!

The great thing about this cohesive group was their acceptance and attendant willingness to learn about what makes our world go ’round. People asked questions. They talked to my kids about their experiences and were interested in the answers. They watched me change infusion sets and dial in boluses, asked me about food and routines, and just genuinely cared about us.

And that’s what is so valuable about being part of a community. Whether it’s a small group of friends and family, a church or social circle, a local support group, or the larger cultural or medical communities, it’s valuable and vital to be able to share your struggles, burdens, accomplishments and joys with people who share some common thread. A common unity.

Everyone needs a community.

Kids have a remarkable ability to meld into relatively cohesive groups within hours of meeting each other.

Kids have a remarkable ability to meld into relatively cohesive groups within hours of meeting each other.

An Amusing 2 am Blood Sugar Check

Things like this remind me that the fingers I’m poking belong to a six-year-old boy. Luke rocked his beloved new skate gloves all through the night. Good thing they are fingerless!

All For A Free Shower

“Mom, I only have 6.7 units left in my pump.”

These words were uttered during breakfast this morning, about five minutes before we were set to leave for school. Five. Minutes.

Evie is fairly self-sufficient with her insulin pump. Self-sufficient in that she knows how to perform the operations herself, not so self-sufficient that she notices and acknowledges things like low-reservoir and missed-bolus alarms. This happens a lot. Luckily, we’re pretty quick with the set changes.

Ok. FIve minutes. I can do this. She has to finish eating anyways.

But then, Evie made an impassioned plea to save her set change for after her pre-birthday-party shower this afternoon. Could she do an injection bolus for breakfast and lunch and save the rest of her pump insulin for her basal needs for the day? After my shower? Please?

Oh, sweet girl.

I take for granted the ability to simply take a shower without having a medical device adhered to my body. If you’re a pump wearer, it must feel really, really great to be able to soap up without worrying about scrubbing your infusion set off in the process. To have your body completely free of adhesive tape and invasive plastic cannulas, if only for the time it takes for a good, long shower.

So we’re doing a combination of injections and pumping today to get her through to that highly-anticipated free shower. It’s sure to confuse the Bolus Wizard–the name given to the complicated algorithms the pump uses to calculate dosages–but that’s what our backup brainpower is for.

If that’s the normalcy she is craving today, then we’ll do the extra work to help her find it.

Diabetes Family Camp: Laugh. Cry. Bolus.

I wrote last month about our opportunity to attend ConnecT1D’s Diabetes Family Camp in Seattle, and how excited we all were for the weekend. Evie has gone away to diabetes summer camp for the past couple of years on her own, but this was the first camp that we’ve attended all together with other Type 1 families. We were ready for an adventure!

We skipped their half day of school on Friday and made our way leisurely through Seattle (“look, Mom, the Space Needle!”), playing a little along the way, and then headed North to the retreat center. After we checked in, met the camp directors, and found our cabin (double bunk beds!) we gathered in the meeting room with the other families for orientation. Then off to bed for a good night’s rest.

The morning started off with a bang, with a keynote presentation by a family psychologist that had me tearing up in my seat. The topic was parenting and diabetes and he touched on standard issues like discipline and family dynamics, but also addressed more tender topics like grief and loss. He asked us to reflect on our diagnosis stories and my chest tightened. We have two of those; they are different, but equally painful. Being in a room full of other parents who I knew shared similar stories and experiences made it a little easier to confront those memories and emotions.

Photo Credit: Kristine Burtner. Everyone gathers together in the center of the meeting hall to get to know one another.

Photo Credit: Kristine Burtner. Three teens with type 1 diabetes share their stories and answer questions

Photo Credit: Kristine Burtner. Parents and caregivers listen together to the presentations.

Other sessions that day included a research update, a panel to discuss diabetes in the school environment, and a small group session in which we all shared tips and for living and coping with diabetes in our families. This hour or so of more intimate and open discussion was my favorite part of the weekend. Groups included caregivers with newly diagnosed kids, some who have weathered years and years of diabetes in their families, and everything in between. My group even included another set of parents that had two kids with diabetes.

Even though I’ve been parenting diabetic kids for four years now, I was a sponge, soaking up information and experience like I was a newbie. It was so comforting to be surrounded by other parents who Understand—other adults who have to navigate school policies and holiday parties, wake up multiple times during the night to check blood sugars, and learn to live with a complicated disease that has unpredictable and ever-changing effects on their kids and families. We could all look at each other, recognize that underlying burden of physical and emotional fatigue we wear like an old sweater, and say “I get it.”

I hope that my kids had similar feelings of solidarity. Evie and Luke go through most of their daily lives being the only kids with diabetes, singled-out by blood sugar checks, trips to the health room, and well-intentioned but isolating comments from teachers (“Please avoid sending sugary treats because we have a Diabetic in our class…”).

I expect that it’s a relief to be in the company of other kids who have to stop and pull out a medical device before tearing into that mid-morning granola bar and bag of pretzels. And whatever your age, its fun to swap “war stories.”

This one time I had a vampire cannula and my tubing totally filled up with blood!! 

Don’t you hate it when your mom pushes too hard on the lancet and your finger is still bleeding three hours later??

One morning my school served french toast sticks that had 300 carbs per serving and I had to do TWO injections just to cover!! (Er….WHAT??)

Evie offers moral support to friends about to have a blood test.

Siblings of kids with diabetes also need peer support, and I was happy to see Will interacting and making new friends. I doubt, at eight years old, that he engaged in any conversations specifically about his feelings and experiences being a middle child sandwiched in between two kids with major medical issues, but he certainly saw that he wasn’t alone, and that was the whole point of camp. So that none of us would feel alone in our circumstances.

Photo Credit: Kristine Burtner. Evie plays carpet ball with a fellow camper.

I hope to go again next year and see many of the same families I met. Evie collected some e-mail addresses and is already busy keeping in touch. And Will asks me nearly daily if I’ve heard from his new friend’s mom yet.

But the most important take away for me was the realization that support and connection with other people who live with diabetes is vital. Not only to share information and resources, but to have people that can laugh with you when you make jokes about infusion sets and low blood sugars, panic together at the empty coffee pot, and not bat an eye when you cry over breakfast conversation. People who “get it.”

See you next year!

Evie is enjoying keeping in touch via e-mail with her new friends from camp.

Dinnertime Drama

I was thinking about this photo the other day during a relatively peaceful dinner with my kids. I think we were having grilled cheese sandwiches and tomato soup. I snapped this grainy photograph of Luke, then only 4 years old, nearly a year ago during a particularly frustrating episode of what I have dubbed Dinnertime Drama. It was when the idea of a family-life/diabetes blog first blinked into the atmosphere of my creative musings. Surely, I had thought, other families must have similar challenges. Why not share mine? At the very least, writing about moments such as these might help to quell the desperation I sometimes feel as a single parent trying to toe my own line.

Some context–Luke was diagnosed with diabetes just 6 weeks shy of his second birthday. His diet still consisted, in large part, of Cheerios, applesauce, yogurt, noodles, and breastmilk. When he returned home from the hospital several days later with two terrified parents who were just learning how to wield a syringe, there wasn’t much thought as to what he was eating so much as whether he was eating enough to fend off scary middle-of-the-night (or anytime, really) hypoglycemic episodes. The thing about injection therapy is that there’s not much room for finicky toddler food-refusal power plays when you have blood glucose-chomping long-acting insulin on board. And a 25-lb child who didn’t show symptoms of hypoglycemia until he fell into the 30’s. So it often went like this:

“You don’t want to eat that yummy couscous with steamed carrots Mommy made you?

But Mommy just gave you some insulin. Don’t you want to at least try it?

Well, how about some more Cheerios and yogurt then?”

That’s a lot of power to give a 2-year-old.

And so it went for two more years. Sure, there were a few more foods he learned to enjoy, but our opportunity to really introduce new foods and easily influence his food choices had passed with the last of his beta cells. Finally, I decided that enough was enough. Luke would no longer get a free pass to eschew unfamiliar or less-kid-“friendly” (more on that subject another time) foods at mealtime. And the time was right; his food intake was getting more predictable, his episodes of hypoglycemia less frequent, less severe, and more obvious, and most importantly he started insulin pump therapy.

The flexibility of pumping allows me to dial down the amount of insulin he receives if, say, he refuses to eat his dinner of sweet potatoes and black beans. So I instituted some new dinnertime expectations. Namely, that everyone would be required to at least try the things on their plates. No one would be served something different than what the whole family ate. And no more routine bedtime snacks. Which brings us back around to the photograph of Luke, above.

I had prepped all the kids beforehand about our new mealtime guidelines. We had talked about the importance of healthy eating and variety, and trying new things. We sang “Party In My Tummy” and did a silly dance. I served up what I thought would be a fairly innocuous meal–pretty cool (I thought) purple carrots from the farmer’s market, wild rice, and chicken apple sausage. No unfamiliar sauces, no foods mixing or otherwise touching each other on the plate, nothing green or leaf-like for this first run.

But my inner resolve began to crumble when he broke into tears at the sight of the foods he was expected to let pass over his lips. Big, pathetic, puppy-dog tears coupled with a Momma-Why-Are-You-Doing-This-Awful-Thing-To-Me expression. The other kids were relieved that this first night of “trying new foods” was actually going to result in a full belly, and were ready to move onto dessert in a flash. Sitting alone at the dinner table intensified Luke’s woefulness and all I could do to cope was to stealthily take a picture with my phone. Hopefully, I thought, I will be able to look back at this photo and see how far we’ve come from this moment.

And we have.

One of his favorite foods now is the aforementioned tomato soup. He eats some of his sweet potatoes and black beans.  I get a little thrill every time he tries something new and his eyes light up with surprise and relief. One thing that I’ve learned about Luke is that he protests changes loudly and passionately, and then eventually he will acquiesce. He no longer reacts as if I’m trying to poison him when I put vegetables on his plate. And while he still grimaces and follows bites of unfamiliar foods with gulps and gulps of water, he does try things. We have a long way to go before I will proclaim him a “good eater,” but I will voice my ideals and maintain expectations, keep things positive, and continue to persevere.