Monday, November 8, 2010

Penguins, Polar Bears, & Superheroes

Families crowded the room, moving everywhere around me. Even as the polar bears and Barbies and dinosaurs all stole the attention that I was trying to focus on the task at hand. It was afterall, a monumental job.

Then, a tug at my shirt-sleeve brought my gaze down in front of me.

"I feel Low. I think I need to test," Little Shirt Sleeve Tugging Girl said.

Her inquisitive eyes stared up at me, expecting that the adult in front of her - the one who was a Type 1 diabetic just like her - would have an answer, a blood meter, some candy to boost her if needed. But my callouused-fingertips seemed to find only unprepared ineffectiveness to clutch on to.

In the blink of an eye, as quick as a heartbeat, my 26 years of experience Living With Diabetes went out the window. None of that mattered. At that moment, all that mattered was this girl in front of me who was relying on me to help her.

It broke my heart, and scared the hell out of me.

This was the scene Sunday, when I attended a free diabetes education event at the Children's Museum of Indianapolis. Sponsored by the JDRF Indiana and Peyton Manning Children's Hospital, this event brought in an estimated 300 people and even had a waiting list that meant some who'd wanted to attend could not. I was there as a pseudo-advocate for the JDRF Outreach and JDRF Government Relations crews of my local chapter. This meant I wasn't really volunteering or participating, but could kind of be in the background and experience the event while meeting and greeting, advocating, and experiencing. I'd planned to follow the high schoolers/college-aged Type 1s who'd be talking about "How They've Done It," but plans changed. A volunteer wasn't there as planned, so the organizers summoned me to help keep watch over the little kids in the "child care" aspect while the parents and caretakers were off learning in the various sessions.

Ages appeared to range from about 5 to 12, and in my color-coded group we had about four kids - three girls, one boy - who were all diabetic. Two of the girls knew each other from D-Camp and were about the same age, and ran around and enjoyed pretty much all of their time together. The other little boy and girl were brother and sister - he was a fun little guy who got excited talking about Spiderman and Superman, liked to push buttons, and asked many questions with a pre-reading curiosity about words. The sister was a cute little one who didn't say much, but clinged tightly to her stuffed bunny doll and hugged it close. Except in the Barbie exhibit, where she smiled and played and displayed a happiness you might expect from a little girl that age.

This was a new experience for me. While it wasn't my planned or preferred role for the day, it was educational and eye-opening and an experience I won't forget.

That Little Shirt Sleeve Tugging Girl had been running around with one of her friends most of the afternoon, but when our group split up inside the polar bear and arctic exhibit, I was pretty much the only adult keeping track of the two girls and had to keep my eyes on them. At the time, they were running around putting on the penguin outfits and following the footsteps and sliding down the arctic slide head-first. But a Low changed the mood quickly.

She didn't have her purse with meter, and mine also wasn't on hand. The other adult-supervisor with the backback and candy had ventured off with the other kids. Looking around, I felt helpless. She was still being a kid and wanting to run around, but if she was Low it could go bad very fast. I couldn't just sprint to find the other adult, even with Shirt Sleeve Tugger in tow, because her friend was still running and playing and wasn't interested in leaving that fun behind.

My life as a Type 1 didn't matter. Whatever I knew wasn't important. Sure, I know what it's like to be Low. Know how to bring myself out of it. Know what to tell others so they can bring me out of it. Know what can happen if a Low is left untreated. But that insider experience had no bearing then, as I stood without an answer, without a meter, without any sugar or anyone to turn to for help. All I wanted to do was protect this little girl, and I felt powerless to do it.

That sucks.

Fortunately, I soon glimpsed my fellow adult supervisor and made sure the two found each other while keeping an eye on the friend, who was still dressed up in the penguin outfit strutting around with the many non-D kids at the museum. Penguin Girl said she felt fine, and a test revealed that Shirt Sleeve Tugger was Low. So we all sat down and munched on some Skittles before getting back into the swing of things. We faced a related example inside the Planetarium, when it was time to sit in what was basically dark movie theater to look up at the dome ceiling for the show. Sitting next to that same little girl, she said at one point she needed to test but didn't have her purse with the meter. Adult counselor was a few seats over and gave it back, but then Little Girl told me she couldn't see her OneTouchUltraMini in the darkened room. I'd left my phone back in my coat a long ways off, and didn't have a flashlight. So, what am I supposed to do for this girl who needs to test but can't see in the darkness??? Luckily, I had my pump at my waist and was able to use its backlight to give her enough light to test - and she was fine at that point.

Later, the only little boy in the group - who I'll dub the Little Boy Who Didn't Want to See the Barbie Exhibit - asked me about the insulin pump on my beltline. Though he didn't have one, the little 5-year-old generally knew what it was and thought it might be better than having to take those regular shots that "sometimes really hurt." He wanted to know if it also "gave me sugar" and whether it meant I didn't go Low, like how he does and "feels bad" when that happens. My heart broke again, and I couldn't stomach to tell him the reality that our technology isn't there yet. That we're just on the tip of that "closed loop" system but it could be so many years for it to make it's way to our United States - not only because of company product-creation challenges, but because of political debates and funding and government FDA regulations.

Though I've had my share of headaches with infusion sites and "gushers" and even went on a five-month Pump Hiatus to give my body a rest after nine years of pumping, my own experiences didn't matter. I didn't care about any of that, and an answer of "it's better than shots" wasn't adequate. I didn't want this little boy to need shots or a pump. So, instead, I told him that it takes the place of shots and does help give me insulin like how he gets shots now. I told him my pump's name was "Bacon" because I like to eat bacon and my pump helps me eat what I like, and he smiled at that. Then, we focused on the polar bears and talked about superheroes - his favorite being Superman over Spiderman or Batman.

In my mind, all I could think about was how any D-Parent or caregiver must be a superhero in their own right. How they must conquer their own fears and insecurities for the betterment of that CWD. Maybe some of that just comes with being a parent and I'll learn that when the time comes. Maybe some of it gets easier the more you do it, or if you've served as a D-Camp counselor in the past. Maybe it does, but this experience was my first time. I'm just glad it all turned out fine.

What I faced was just a few brief moments of what these Parents of Children With Diabetes face every day, every night. every moment. Regardless of my own experiences growing up with and living as an adult with Type 1, that doesn't replace the simple reality that I don't know what it's like to be a caregiver to a child - especially a CWD. You think it requires ninja-skills to manage your own D-Life? Well, try being responsible for that from the outside, with the normal parental cares and concerns amplified by this chronic condition's necessities, and having to teach this little one how to grow up to have a successfull life with diabetes. Not easy by any means. I'd known that before, but see it even more clearly now. These Parents Acting Like Pancreases are superheroes. We could recognize them every moment of every day, and they'd still be under-appreciated.

So, to every Parent Who Acts Like A Pancreas: Thank you, so incredibly much. For everything. We Children With Diabetes Who Grew Up are who are because of your care, your guidance, your balancing those daily issues in whatever way you did.

14 comments:

Wendy said...

Wow, Michael....I'm tearing up over here.

Thank you for your kind words. It's encouraging...sometimes I just feel like an outsider. You know, just over here sitting on the sidelines, trying to keep my head in the game, but never really knowing how it's played.

When a PWD acknowledges the experience of being a parent raising a CWD, it's like the coach coming over, patting me on the back, and telling me I'm doing okay.

Thank you for that.

Steve said...

Thank you, Michael, for the acknowledgement and especially your compliments.

At times it does feel like a Justice League world of good vs. evil and like that of any spandexed, cape-wearing hero worth their weight in superpowers, the moment of greatest peace are those like the one you experienced with the Little Girl, when in the seconds right after the arch enemy has been vanquished you know with little doubt that the world is as fine as it can be at that point.

Thank you for thinking of us. It feels good to be recognized.

Lorraine of "This is Caleb..." said...

How great of you to share this experience, Michael - thank you.

People often tell me that Caleb is probably more sensitive to others because he lives with diabetes and can empathize. I think the same thing is coming from you in this post.

Thank you for sharing, inspiring and for taking care of those kids. I'm sure it is something they will not forget, particularly that boy meeting Bacon. :)

Judi said...

This is a really great blog, Michael. It never gets any easier when you’re the parent of a CWD, even if you’re a PWD. Maybe that makes it worse. But you still always worry about the child constantly, no matter how old he is and want him to have all the best. And you sure hope that the cure will be coming for him soon, so that he doesn’t have to struggle every day.

Barb (Diabetes Advocacy) said...

Thank you for such a moving commentary. I have gotten used to this life as an external pancreas but your reflections brought tears to my eyes.

Scott said...

Thanks for sharing. My first instinct would be to use my own meter (assuming I had a clean, new lancet) and test the little girl, but in the absence of that, I guess it's best to error on the safe side and have her eat something immediately. Highs will kill long-term, but lows can do it right away. I suspect that most parents would probably choose to defer that if at all possible!

shannon said...

thank you.

The Chocolate Cheerio said...

I'm glad you had a similarly awesome experience at this event. I was so impressed by the parents and kids that were there. It was very reaffirming to see such a large group of people all doing their best to manage and cope with this disease.

I think as PWD we often forget just how much that caretaker role requires... or dismiss it altogether at points in our life (i.e. rebellious teenage years). I know that I have learned so much from my caretaker role at camp- it is definitely strange to be "on the other side," but it is always a nice reminder of how awesome our parents are :)

Yay D-parents!

Meri said...

It does suck. You are so right! It is a constant balancing act of doing the right thing, having the right things at our fingertips, and making them feel safe and taken care of.

Thank you for this Michael. I know for sure that you are going to be a wonderful father if that is the path you choose.

Thank you for taking care of the children. I know that break meant a lot to those parents.

Terrie said...

Hey Good for you. I bet the Little ones were more interesting than the Big Kids anyways. I know that you were appreciated. You'll get your "preferred" chance the next time around.

Judith said...

Bravo!!!......This is Life. Bless you for embracing it!.....

Hallie said...

Ok, Michael. You got me! I'm crying!!
Thank you for such a wonderful post! Maybe it's the fact that I have hardly slept in a week and a half. Maybe it's that we're battling highs- a 450 bg and 2.9 ketones due to a bent cannula. The fifth or sixth one in the past week! The second episode of crazy highs. We are a little worse for wear over here. She's running around- playing with Barbies and acting fine. I feel like I've been run over with steamroller. So, thank you for this. I needed this today.

Sounds like an awesome event! We want to come over and visit the Childrens Museum soon! Thanks for taking such good care of those kids! I'm sure their parents are VERY thankful for a little break!

Lora said...

I had to walk away and gain my composure before I could leave a comment. I am like a big blubbering baby over here.

Thank you for your kind words. It is hard, but it is worth every minute of it.

I hope Justin grows up to have even 1/2 your strength and is able to embrace, advocate and speak out as you do.

Anonymous said...

I know that K was the one in the Planetarium that needed your pump light (didn't know until then it wasn't backlit!) because she told me how nice you were and how you figured to use your pump to help her see her meter. I thought that she was the one who went low during Penguins since I know she went low but she said that she thought A was shirt sleeve tugger. In any case, your blog was touching and like many of those who wrote comments, brought tears to my eyes. Taking care of a young one with diabetes is a gigantic responsibility. I know most of the people in my life don't get how we parents don't get much a break from it--the care, the worry...it's incessant. Your blog showed that you got it. Your mom should get BIG kudos ... not only was she raising a CWD but dealing with it herself....a double whammy!