Hard Questions on World Diabetes Day, and Everyday

November 14th is World Diabetes Day (WDD), a day created by the International Diabetes Federation to bring awareness to the growing concerns surrounding type 1 and type 2 diabetes. Last year, I recognized WWD with the 2015 Type 1 Diabetes Index.  This year, some of those numbers have grown.

 

My son is in his second week of participating in a sport, so I’m new to managing blood sugars during organized physical activities. During his first week of practice, I sat watching the CGM (constant glucose monitor) as it read 120 with an arrow straight down, then the next read out, five minutes later, was 90 with two arrows down. At practice this week, I disconnected his pump, hoping to avoid the rapid drop.

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As I held his makeshift pancreas in my hand, I looked up and saw grandparents taking short videos, parents cheering kids on, siblings sitting through practice, drinking from juice boxes, eating unmeasured food. In one hand was my son’s insulin pump, the other his CGM receiver, and with all my willpower, telepathically, I was willing his blood sugar not to drop any lower, but it was 98 with an arrow down. As I rushed downstairs to give him a glucose tab, it struck me, once again, how different my experience of the ordinary often is, usually because I’m thinking about some difficult diabetes question or trying to do diabetes math, which is impossible, by the way.

For World Diabetes Day 2016, I’m sharing a few of the typical questions I have throughout any given day.

If he’s eating 45 carbs for dinner, with lots of protein, but not much fat, is 1.75 units of insulin enough to cover the meal?

Should I wait 5 more minutes to see if one glucose tab is enough to bring his blood sugar up?

Will the school nurse think I’m overprotective if I call? I just dropped him off at school with 2 units of insulin on board, a glucose tab in his mouth, and he’s 79 with an arrow down. Yes, call. Are you crazy? Why would you not call and tell her this?

Did I give him enough insulin?

Did I give him too much insulin?

Should I explain to the man who just picked up his kid and moved him to the other side of the pool after seeing the medical devices on my son that my son is not dangerous or contagious? Should I tell him it’s OK to ask questions, but not to stare and ostracize?

OK, the packaged pasta says 2/3 cup of dry pasta is 44 carbs. Hmmm. How is dry pasta a useful nutrition fact? Do people actually eat dried pasta?

Why do I feel guilty and lucky at the same time because my son has access to insulin and others don’t?

When I walk in his bedroom this morning, will he be conscious?

Why does he eat the exact breakfast every morning and sometimes he’s 120 an hour after and other times he’s over 300? The.exact.same.breakfast.

What if Henry has kids and they get diabetes?

As I look at his CGM many hours after eating out, I wonder just what exactly is in restaurant food.

When I’m talking to a representative  from my insurance company after they’ve limited my son’s test strips and declared his Dexcom CGM out of network, and I ask this person how much my son’s life is worth, do I really expect an answer? Do I really want them to answer this question?

How will my son handle the burden of type 1 diabetes as a teenager?

Is his sister peeing more than normal? Am I?

After asking for the nutrition information at a national chain of ice cream parlors, do I push it and try to explain for a third time that I’m asking for carbohydrates, which are a very different thing from calories?

When Henry is anxious about a site change, he says, “I don’t want to have diabetes. Why do I have diabetes?” Is it enough to say, “I don’t want you to have diabetes either,” and “I don’t know.”

Those two pieces of pizza are 70 carbs. Right?

After learning of someone else in my local community is diagnosed with T1D, I wonder why the CDC is not tracking the incidence of type 1.

How will Henry respond when some of his classmates stop being curious and start being hurtful?

Sleeping in two and three hour intervals is enough, right?


November is diabetes awareness month. Please consider signing this petition that asks the CDC to start tracking the occurrence of T1D or making a donation to a diabetes organization.

Confessing to a Cookie

A few times a week I find myself in a conversation or action that illustrates how different my son’s childhood is from his sister’s and classmates’— my own childhood. On one hand, I attempt to manage diabetes, but with the other, I try to orchestrate a “normal” childhood for Henry. We’ve never made any food or activity off-limits for him, but instead try a little bit of most things.

The weather is still warm enough to walk to and from school, and easily my favorite part of the day is being greeted by Henry after his day at Kindergarten. He usually has some very important fact to tell me, such as, 16 is an even number.

The day the local firemen came, Henry bounded out of the classroom door yelling, “How old are our smoke detectors? Did you know you can only use a smoke detector for 8-10 years? If you take it off, there’s a date on the back. Can we go home and see the date on the back?” (For the record, I did not know this).

Today he ran out of the door, hugged me, and took my hand for the walk home. He was uncharacteristically quiet, until he said, “I didn’t eat all my lunch.”

“That’s O.K.,” I replied. “What part didn’t you eat?”

Chocolate Nibs. I ate a cookie instead. We celebrated somebody’s birthday. That means my lunch was 56 carbs, not 31 carbs.”

Our small town is so adorable that I jokingly say we live in Stars Hallow. It was a gorgeous fall afternoon, the maple trees orange blazes against a blue sky, leaves crunching underneath our steps, but we weren’t talking about any of that. Instead, Henry seemed almost worried, checking in to make sure everything was fine.

“You know that you can eat anything you want?” I asked. “We just need to know how many carbs it has so we know how much insulin to give you.”

“Yes, I know. The insulin comes in units. We count those too.”

Of course he knows. He knows beyond knowing.

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Back to School Night with Type 1 Diabetes

My son with type 1 diabetes starts Kindergarten day after tomorrow. He’s excited, and we’re excited. We anticipate a safe environment in which he’ll learn, grow, and be healthy. We’ve met and planned with the school, but just hours ago, on the walk home from back to school night, tiny cyclones of fear, worry, and jealously snaked inside me.

Back to school night with type 1 diabetes means a pile of glucose tabs, glucagon kits, test strips, extra insets, a ketone serum meter, airheads for the really low lows, spreadsheets of instructions, snacks with carbs, snacks without carbs, lancets, a back-up meter, and extra adhesive have been queued in your dinning room for a week.

Back to school night with type 1 diabetes means you walk your son to all the bathrooms closest to his classroom. You point out the water fountains along the way.

Back to school night with type 1 diabetes is taking four times as long to drop off materials as other families because you have so many more items. In fact, when you’re dropping off supplies and signing form after form in the nurse’s office, the courteous mother behind you tells the staff that she’ll be back tomorrow, meaning when they’re less busy. It’s realizing, in that moment, despite your two big bags of supplies, that you forgot the snacks with carbs, so you’ll be back tomorrow as well.

Back to school night with type 1 diabetes is walking the route between the nurse’s office and his classroom several times, just to make sure he doesn’t get lost. You realize it’s a trip he’ll make several times a day, and he’ll know it like the back of his hand in a week.

Back to school night with type 1 diabetes is rushing from work to the pharmacy so you can get the glucagon kits for school, and as you walk past the cashier to the pharmacy counter, you see a mother wave a purple glittery pencil box before she pays for it. You overhear her say to the cashier, “It’s back to school night tonight, and this is the last thing we need. We almost forgot about it.” A needle of jealousy pierces you, and you wish back to school night was just about pencil boxes and markers, a blithe almost forgetting of things. But then you remember to be kind, because everyone is fighting great invisible battles. Surely living with type 1 has taught you that.

Back to school night with type 1 diabetes means looking at all the other boys and girls that your son will most likely go to school with for the next thirteen years and hoping that they will be compassionate and understanding. But you’ve been a kid on a playground and in a lunchroom. You know kids aren’t empathetic and kind all the time.

Back to school night with type 1 diabetes is hoping your non-T1D kid doesn’t feel minimalized as she waits for you to finish something diabetes related for the fourth or fifth time that day. She’d like to see her classroom too, and asks if there’s still time to visit her teacher.

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Back to school night with diabetes is forcing yourself to breathe as you walk behind this guy who is, and will, shoulder so much. You tell yourself you’re just sending your kid off to Kindergarten, that lucky parents whose kids were born after the discovery of insulin 95 years ago, and kids whose T1D is caught in enough time, get to do that— send their kids off to Kindergarten.

#Teampancreas

T1D is a family disease. Our family has learned how to recognize and treat a low blood sugar. We make decisions about what to eat and when. We monitor blood sugars 24 hours a day. Henry’s sister also helps. She watches his numbers while they play and distracts Henry during site changes.

Part of Henry’s pancreas may not be functioning, but he’s got a village of support replicating (as close as humanly possible) what his beta cells once did.

Beyond Type 1 is celebrating #Who Do You Love? on their Instagram wall. Of course, Ava is a great addition to #teampancreas.When it comes to diabetes, there’s not a lot to celebrate; however, the way family and friends rally with support and understanding is something to honor.