How I was Inspired By Isabella

waltdisneyI’ve always wanted to interview one of my heroes. But I never thought the week of Thanksgiving, after a year that has given me so many new challenges and gifts, I’d be on the phone with a 4-year-old little girl in Ohio.

This is the story about how I was inspired by Isabella.

I have never met this little lady in person, but she and her amazing parents, Kristina and Greg, are the stars behind the diabetes awareness and advocacy website, InspiredByIsabella.com. Kristina had read The Sugars before, and reached out to me through Twitter a week ago. Before we knew it, I had totally fallen in love with her family, their story, and wanted nothing more than to talk to this tiny gal that goes through life with such a tremendous amount of courage.

Isabella is 4-years-old, she is a triplet (to brother, Max, and sister, Mia), and she was diagnosed with diabetes at age 2 while her family was living abroad in Mexico. They were thousands of miles away from family and friends, with hearts full of fear and hope. Without ever stopping to question this challenge, the tribe of 5 picked up the pieces and carried on as they always had. They’re home in Ohio now, and they have made it their passion pursuit to be able to say “our daughter USED to have diabetes.”

Last night, I had the distinct pleasure of meeting Isa’s entire family via FaceTime.

When the call rendered on Isabella and her mom, she was sitting on the couch with a nervous little grin on her face. “Hiiiiiiiiii!” she said with surprising confidence. I could immediately sense that this girl knew what she was doing. She was the boss. It is also important to note that she was wearing striped tights, a chic black tutu, and a Hello Kitty shirt. She also had a pink bow on her headband, giving her an extra dosage of charm. (Spoiler alert: my kid will1,000% sport this look.) She also loves princesses and playing dress-up.

Isa stared at me for a minute, trying to figure out if she could trust me or not, then wiggled over to her mom and whispered (/yelled/spit/blew hot air) into her ear: “Momma, where’s her POD? Can I see hers?” Kristina laughed nervously like, “Sorry my kid just asked you to essentially flash her within 1 minute of meeting you.” She then proceeded to proudly show me her Omnipod and CGM, and I showed her my Minimed pump and infusion set. Instantly, she smiled. It was like I had successfully completed a top-secret handshake to be let into her exclusive club.

I was so honored.

After some casual back and forth, Isa asked me, “Where’s your mom, why are you alone?” I laughed. What I thought in my head was, “Ohhh, you sweet little peanut…just wait until you’re in your 20’s…we’re all so very alone.” but then I remembered I was talking to a precious child and revised my response to, “My mom lives in another town!” I’m still laughing about it now.

Next, Isa asked me a very personal question. “Have you ever been to the hospital? Cuz I have.” I thought of the picture her mom had posted on their blog from the time in August when she had been hospitalized with a serious DKA incident. My heart sank. “No, I said. I’ve been really lucky. I’ve only been to the hospital one time at the very beginning of having diabetes. Was it scary?” 

Yeah.”

My heart sulked a little more. “You’re so brave. But you’re okay now, right?” I tried to change the tone, lighten things up a smidge.

“Yeeeeeah!” she exclaimed, fluffing her tutu and jumping up and down. There we go, devilish confidence was back. She leaned over and “whispered” to her mom again. I could hear everything she said…the whole art of speaking quietly is rather lost on a 4-year-old. She wanted to tell me who her favorite singer was. “I love Katy Perry!” she squealed. And promptly thereafter proclaimed that the Cars gummy snacks she’d just finished were great and all, but she was still hungry. And then poof, she disappeared in search of Daddy, who would have to test her blood sugar again, and bolus her…again. Sigh.

While Isa went hunting for some Goldfish (only our mutually most fav snack ever), I got to know Kristina. This woman, I’m convinced, has some serious super powers. She was so composed, patient, funny, and open-minded. We got real personal real quick, which I loved. Secrets are no fun. Truth be told, she shared, Isabella is struggling emotionally. She’s not always the happy, bubbly 4 -year-old her siblings are. Because she’s so young, she can’t always articulate why that is, and as a loving parent, that’s understandably torture. Isabella gets really pissed off when she’s high, and really goofy when she’s low. She acts out and causes trouble when she’s high, and laughs hysterically about things when she’s low. Her numbers are so unpredictable; on Thursday she woke up 51 with no explanation. She has a CGM and an Omnipod. She’s learning to test herself, and know what the numbers mean. And, though she barely can recall what she ate for lunch (she and I have that in common), she told me her least favorite part of having diabetes were “the shots” before she was on the Pod. How does she even remember? I was fascinated by this response. She also likes to decorate her Pod with “tattoos” to snazz it up. All of this, Kristina says, is growth and progress. Obviously, she and her husband look forward to her becoming more independent with her diabetes care, but there’s no denying that the learning curve and drastic swings in her blood sugar affects her happiness day in and day out.

Kristina talked about her fears: leaving Isa at birthday parties where no one knows how to care for her, reprimanding her unfairly for misbehaving because her numbers were too high, making sure her other 2 kids get as much care and support as Isa, Isa growing up and becoming a defiant teenager that resents her diabetes, and even further down the line…what’s in store when college comes around?

And, true to form, I asked her about the humor in their diabetes infused life since that’s the only way I get myself out of sticky situations in one piece.  She recalled a time when a woman was staring at Isa’s Omnipod (it’s a tubeless pump, so it literally is just a little white pod attached to the skin) and tapped Kristina on the shoulder. “Is that some sort of insect repellent?” she inquired. No, honey. But thanks for askin’!

We also talked about some of her parenting philosophies, one of which particularly stuck with me:

“Greg and I never apologize to Isa if we have to inject her with insulin. We never want her to feel like she did anything to deserve this. We want her to just accept diabetes as part of her life without feeling like it’s all negative, all the time. Causing panic and alarm would just add insult to injury. Bad blood sugar? There’s no such thing. Everything is fixable. Using guilt is not a healthy way to raise a little girl with this disease.”

I was 17 when I was diagnosed; presumably old enough to “do it by myself.” My mom and dad never had to experience the fear of laying in bed, terrified that I wouldn’t be able to help myself in the middle of the night if something happened. They never had to teach me what 300 meant vs. what 80 meant while trying to mask their anxiety. I tested when I wanted to. I tested on my own. I didn’t need nurses or caregivers at school or home. I resumed life on the lacrosse field, in the classroom, and with my friends. I was still me. I honestly cannot imagine a world where I had to learn how to be a kid, while also developing the fine motor skills advanced enough to handle the mechanics of opening a bottle of test strips.

Talk about perspective.

Kristina admitted to me that every time Isa takes a bath and the Pod and CGM are visible on her little body, she snaps back to reality — that as much as we all want to say Isa is a “normal little kid”, she only looks “normal” when her pump and CGM are hidden under her clothes. Or when there isn’t a pizza party going on at school. Doesn’t everyone know what pizza does to 4 year old diabetics? Isa is only able to be “normal” because of the incredible little devices stuck in her skin, monitored by others 24/7. These are the same incredible little devices that are stuck in my skin. Kristina expresses her appreciation for having the ability to take care of Isabella. That technology and the diabetes community have made it doable.

She wants Isa to grow up aware that though her troubles may be taxing, someone else out there is having a worse day no matter what. And to not compare problems to problems, she wants her kids to adopt the mission of seeking out others in need, so they can make them smile.

I admitted that I too, have had many moments with myself where I’ll stand in front of the mirror before a shower or before the beach, feeling an equal mix of disdain, gratitude, and pride. I’ll stare at my infusion set, trying to grasp its significance. It’s a powerful thing that I often forget to do. It’s a little white circle stuck on my back. It allows me to be me. It keeps me alive. Now Isa and I can celebrate that together in spirit.

Kristina was smiling as she shared all of this, but I could see some pain in her eyes. She knows the road ahead for their whole family will be a long one, but she is so proud of her kids and their resilience. For their ability to care for one another, and understand their inherent bond. She is so filled with gratitude for the diabetes community that they have become such an active part of. Isa actively seeks out other diabetic kids so that she can bond with them over their “Pods”. She is proud. She’s vocal. She’s extremely brave.

Isabella came back into our conversation after snack time 2.0. She wanted to know if she would ever see me again. I asked her if she’d want to come New York and eat Goldfish with me. She said we could. But we could only eat 5. I should be so lucky.

For the grand finale, Isa, in her purple leopard print jammies, danced to a song for me. It was a remix to “All About That Bass” called, All About That Cure. As the little kids in the video sang, “All about that pump, bout that pump, and testing” I totally cracked up. Kids are fucking awesome.

Spending an hour on the phone with this family was an amazing experience. There was laughing, whining, things crashing in the background, two rounds of testing and bolusing, snacking, Minnie Mouse stuffed animals flying around, and just about everything you’d expect in a busy, loving household at night. But what I got out of it was so much more than a sense of, “Good God, I need a glass of wine after witnessing these two perfectly innocent parents try to put 3 kids down for bed”.

I will think about Isa now. Always. Whenever I test I’ll think, “I hope Isa feels happy today.” Whenever my blood sugar spikes I’ll think, “I hope Isa has laughed enough today.” I hope that in the future, there is something I can do to help Isa out in some way… I tell pretty bad jokes, so I don’t think that’ll be my angle. But maybe eventually, she really can come to New York and hang out with me. Maybe getting Isa to crack up and “throw her head back like a muppet” as her mom described her laugh, could be my mission. Just knowing she feels enabled to be the fun-loving kid she’s entitled to be, will continue to motivate me.

So, now I can officially say I’ve interviewed one of my heroes. Or five, I guess. The whole family was incredible. But just knowing that Isabella is out there, seeing her face, hearing her voice, learning about her day-to-day, made diabetes feel a little more real, much bigger than myself, and yet it made the daunting task of taking this on seem much more plausible. We’re in this together now. No two diabetics are the same, but we can certainly be there for one another.

This Thanksgiving, I hope we’re all able to reach out to someone that inspires us. Someone who has gone through something in a way you found really impressive. A person in your life that you admire and respect. Thank them. Tell them what they’ve done for you. Let them know that they are very special to you for whatever reason. There’s no greater feeling in this world than being told “I appreciate you for ___________.”

Thank you so much to Greg, Kristina, Max, Mia, and Isabella for taking the time out of your busy night to talk to me and teach me about your life. I hope we can stay friends, talk again, or go play in Central Park when you come visit the Big Apple someday soon.

photo (2)
(This is Isabella telling me Katy Perry is her favorite singer. Girl’s got great taste!)

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