emotions & diabetes

To Celebrate

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To mark milestones in our family, we usually cook a nice meal and invite friends and family to celebrate with us. Of course there’s a cake, some ice cream, and  a few streamers left over from the previous event, like a baby shower we hosted seven years ago. Instead of planning an elaborately themed party, we enjoy good food and conversation to celebrate birthdays or anniversaries.

Our son, who has type 1 diabetes, turned five this September. He was diagnosed with type 1 at three-years-old, so he’ll probably never remember a life or birthday without this disease. We were planning a party per usual, and I don’t know exactly where the plot shifted, but it did. Henry’s only requests were Toad Cupcakes (à la Mario Kart) and a few Lego sets, but a little planning and a few Pinterest visits later, his 5th birthday was under the big top.

I made this. This is not a Pinterest Fail.

I made this. This is not a Pinterest fail.

We went BIG. I don’t want to say the circus celebration was diabetes related, but I have to admit, our whole family is seeing life and milestones through the lens of diabetes. Sometimes, the future I imagine for my son is grief-worn and full of woe. Other times it’s more kick-ass and victorious. The truth is probably somewhere in the middle with weekly visits to both extremes.

So, this year we erected a massive play structure that was given as birthday present by grandparents:

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We rented a bouncy house:

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We invited the neighborhood kids over to a drive-in move later that night:

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The truth of it is that this year has been hard. Every two days Henry anticipates a painful site change for his pump, which is an improvement over an injection of insulin every time he wants to eat. He waits to eat his food while his blood is checked and other people are already eating. Some nights he drinks juice in his sleep to combat lows. The truth of it is that future years will be hard too, and Henry will grow up before his time, because type 1 diabetes demands attention, focus, and discipline; characteristics not every adult posses.

I don’t believe that disease makes my child an angel or a hero. I realize this statement offends many people. I understand how this statement offends people. However, living with a chronic disease has taught me that the distinction between hero, and sick, and victim aren’t very useful. In fact, the distinctions between most things aren’t very useful. Having type 1 diabetes has made my son’s life more complicated and this makes him one tough kid, because a diagnosis of type 1 doesn’t allow for other options.

I’m cautious to say that living with a chronic disease is instructive. If I could flip  a penny into a magical fountain and wish this away, I’d trade every realization I’ve had about living with a chronic condition before that penny made one full rotation.

However, living with a chronic disease has shown me it’s worthwhile to look for what to celebrate. Sometimes it’s a birthday. Sometimes it’s a blood sugar that’s in range. Sometimes it’s the fact that I don’t cry when my son asks me a really difficult question, like why he has diabetes.

Around our house, most of the recent celebrations are pretty simple: like not being late despite everything we have to do to leave the house, guesstimating the carbs in a restaurant meal of beef tacos with a side of rice and beans, finding just the right spot to start a site, and really, really, really meaning it when we sing “Happy Birthday.”

https://www.youtube.com/watch?v=3pg0qpl6L2g

#DOCburnout2015: Looking Ahead to Diabetes Burnout

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The kids are tucked in, the kitchen is cleaned, school lunches are packed, and my husband and I finally sit down to watch a T.V. show before bed. During the opening credits something beeps. We pause the show and listen again for the beep, which could mean a number of things: there’s only 10 units of insulin left in the pump, there’s an occlusion in the pump, our son’s blood sugar is rising (or falling) rapidly, he is high, he is low, something needs calibrating or is out of range, a battery is dying.

Sure enough, there’s the beep again. We look at each other, wondering who’s turn it is to address this diabetes need this time. Diabetes has a knack for needing attention at almost every inopportune moment and roughly every two hours during the night.

Our son is young, so right now we manage his care, and we’re his parents, so as any parent knows, the motivation to keep a kid healthy is a deep biological drive. If one of us could have Henry’s diabetes instead of him, we’d do it in the blink of an eye, but we can’t. Instead, we’re teaching him to manage this disease one task at a time.

We’ve only been living with diabetes for 18 months, and certainly we were scared that first night in the hospital, but not like we’re scared now.  Part of the reason we’re more scared now is because we’ve read stories in the Diabetes Online Community (DOC) that don’t end welll. We’ve done research and understand what the risks and complications are. We’ve tried to manage blood sugars and learned that sometimes no matter how diligent you are, a blood sugar cannot be controlled.

While there is a lot to fear when living with type 1 diabetes, the fear isn’t very helpful. My son is four. Do I really need to be worried about him driving a car right now when that’s eleven years away? It’s not useful to worry over potential line items on his 504 when this meeting is still a year away. And it’s not entirely fair to say the DOC creates fear. Sure, stories like Kycie’s and Will’s circulate, but these stories should circulate because diabetes is a serious disease. If we weren’t sharing stories like Kycie’s on the DOC diagnoses would be missed and efforts for standard blood glucose screenings wouldn’t be part of the conversation. If fear is a result of being part of the DOC, then so are solutions, better glycemic control, inspiration, and humor, and I’ll take all this over fear any day.

I can usually set aside the future fears and deal with the daily tasks, but one fear is more nebulous, and that’s the fear of burnout, a complete and total lack of interest, and investment in diabetes care due to denial or a set of complicated emotions. My husband and I can play rock-paper-scissors to determine whose turn it is to make the beep go away, but what will Henry do when he’s 15 or 18 or 20? I’ve heard and read testimonies of teenagers who completely disregarding their diabetes because if they don’t acknowledge T1D then that means it’s not real. And this is reasonable because teenagers are tasked with managing an unmanageable disease during a time of quick physical change and great social pressure coupled with needed independence from adults. Being a teenager with diabetes is like sailing into a perfect storm.

DOCBurnout2015

Type 1 diabetes can’t be ignored, not even for a meal. It’s the long uphill trudge that I dread for Henry. The knowledge that to do almost anything he wants: eat a piece of cake, take a shower, turn a key in car’s ignition this means he always has to do something before. Strict attention and action will be required before the most basic tasks, tasks most of us do multiple times a day without a second thought. He’ll always have second thoughts. I hope the DOC is a place he’ll go to give and get some of these thoughts.

A Week In Review: Diabetes’ First Week at Preschool

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It’s Sunday night. With only one work and school week behind us, the next week and the one after that loom. Last week was mixed with some new ratios (adjusting how much insulin is given for a set amount of carbs), a couple of lows, technology failures, and an embarrassing encounter with my neighbor. Here are some of the highlights mixed with a few tales of low.

Monday

Having a continuous blood glucose monitor (CGM) is like having a porthole into this strange metabolic dance between insulin, carbs, exercise, and stress. After Henry’s first day back at preschool it wasn’t his sweat soaked hair or his teachers remarking how much more “outgoing” he is this year, as it was the CGM data that told me he was a wild man. He was really, really glad to be back at school, exerting lots of energy, which lowered his blood sugar. For dinner he ate a cup and a half of pasta and was double arrows down with a reading of 135 an hour after dinner. By blood he was 80. His blood glucose never rose above 160 the entire night. If only first days back could be bottled and used with insulin to help control high blood sugars.

Tuesday

My husband teaches an 8am class, so on Tuesdays and Thursdays I get the kids up and off to school on my own. I woke to Henry’s pump beeping because the battery was dying. Here’s the short of it: a battery change requires priming, which means a new site. It still takes two adults to help with Henry’s site changes, so I cheated and changed the battery with a new cartridge. I did this in the dark, not wanting to wake up Henry, and in this great plan, I didn’t realize I’d put the battery in backwards. Now the battery cap would not come off and the pump wouldn’t turn on. No matter how hard I tried, I could not unscrew the cap. I began looking out my backdoor, wondering which neighbor’s door I could knock on before 8am and ask for “the man of the house” to help unscrew the battery cap from an insulin pump. Thankfully, I caught a neighbor on his way to work. With my wet hair still in a towel and in bare feet, I set feminism back a few years, but Henry got insulin and everyone got to work and school on time.

Wednesday

I know only about 10-20% of people with type 1 diabetes use a continuous glucose monitor (CGM), but based on the hold time with Dexcom, I’d say market penetration is closer to 90%.

Thursday

At preschool drop off Henry was 111 with double arrows down on the CGM, but he was really 60 by blood. He still had over a unit of insulin on board. I stayed during group time to correct the hypo. One juice box and 4 glucose tabs later his numbers were moving in the right direction. This was when I realized preschool has ushered in a new activity level, so while sitting criss-cross applesauce during story time, I increased the insulin to carb ratio. The further those dots (a glucose reading sent out every five minutes) are from each other, the faster things are happening.

arrows on CGM

Friday

There was a light spirit in the air; as a family, we were closing the first week and moving toward the weekend. Over breakfast and out of the blue Henry asked, “Will I always have diabetes?” Henry’s asked this question before, and we’ve always answered in the affirmative. Matt, Henry’s father, took a deep breath and said, “Yes.” 

This sat with all of us for a moment. Then Matt added, “But people are working really hard to create new things to make diabetes easier. It will get easier.”

It will get easier. We’re ready for the second week.

T1D Helicopter Parents Unite!

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I used to teach English at a distinguished college preparatory high school in Los Angeles. Occasionally, the faculty would bemoan the “helicopter parent” after an exhausting and ghastly encounter. For example, a father told me his son, a sophomore in my composition class, could not complete the homework because the son was sad his pet goldfish died. Another mother drove her son’s homework to school after she completed it for him. At my classroom door, in front of his class, she explained he was too excited to do his homework last night after he found out he made the freshman football team.

Even helicopter parents understand that if they always tie their child’s shoe, the child will never learn to tie a shoe. But parenting is a complicated paradox: as a parent, my job is to make myself obsolete. The whole business of parenting is weaning. The process of weaning and independence is  easy to see with young children, when desire precedes ability, and they want to pour the milk or pick out their own clothes. After many days and years of scaffolding independence the hope is my children will get an education and job, be able manage money, make decisions to safeguard their health, find people that make them happy, and join communities.

That’s how the whole plan is supposed to proceed, but the plan requires revision when a chronic disease enters the scenario. Our four year old has type 1 diabetes. Now our job is to aim for all the aforementioned things, but also to daily administer a drug, insulin, which preserves his life, but could take it. In a few years, we’ll have to teach him how to deliver this same drug. We have to teach him how to wear medical equipment (Animas pump and Dexcom) on his body 24 hours a day and how to take care of this equipment. We’ll have to teach him how to heal and advocate for himself when he encounters unkind or ignorant people.

School is starting, so a parade of parents are meeting with educators and administrators about 504 plans, and educating staff on caring for a student with T1D. In her article, “What It’s Really Like To Raise A Child With Diabetes” on The Huffington Post, Lisa Gastaldo explains some of the fears and realities of diabetes care from a parent’s perspective, as well as her history of working well with schools and doctors. I think it’s a great read to pass along to teachers and family members who may not recognize the trials of living with diabetes.

Even people who are in the diabetes community debate when and what a parent’s role in T1D care should be. As CGM in the Cloud and Nightscout emerged and engaged in important debate with Dexcom over moving to an FDA approved platform that enabled sharing of CGM data, people in the diabetes care industry predicted that the helicopter parents of T1D children would be distracted and consumed by the data. We’ve had Dexcom share since June, and have found the opposite to be true. Rather than wondering what our son’s blood glucose is, and texting or calling to find out, we look at the number and move on. We’ve been able to leave our son with family members for the first time since diagnosis. Just this week, both of Henry’s preschool teachers downloaded the app on their phones and marveled at how this continuos stream of information would make monitoring and care easier in the classroom.

Dexcom Share data on follower phone

Dexcom Share data on follower phone

My job is primarily to be a parent, but as I watch my four year old son struggle to put on a pair of pants while holding an insulin pump, I realize my other more arduous job is to be a parent to a person with type 1 diabetes. How long do I watch him try to untangle the tubing from his pants before I step in? To stall, I play a trick on myself and say this is like any other challenge every other kid faces, right? I tell myself only the scenario is different, but then Henry looks at me in frustration. He asks for help, and I can see on his face that he knows this struggle is different, more intricate and undue. There’s no need to say anything in this moment that requires action. Instead, we sit down on the floor, where he can place his pump, and find a new way to put on pants.