Mommy Beeps: Parenting as a Type 1

This content originally appeared on Beyond Type 1. Republished with permission.

By Kim Baillieul

A few years ago, I sat at a park while my then two-year-old son played on the playground. A wave of dizziness fell over me right as I felt my continuous glucose monitor (CGM) start beeping. One, two, three – three beeps, confirming the low blood sugar I suspected.

Instinctively, I reached into my purse and grabbed the juice box floating among the loose change and used test strips. Of course, my son’s innate ability to sense whenever I have a sweet treat also kicked in, and the next thing I saw were his big, blue eyes fixated on my hand.

“Mommy, can I have your juice box?”

Sure, my sugar had dropped in front of my son before, but this was the first time I had no distraction for him – no alternative snack, no books to read. Most importantly, it was the first time he asked me to share. I shook my head and told him no, but he persisted.

“Mommy, pretty please, can I have your juice box?”

My mind went blank.

How do you explain to a toddler that your juice box is literally keeping you alive?

What I Was Told

For years – even when I was still a child myself – I was cautioned about pregnancy. At 16 years old, my endocrinologist painted daunting pictures of a hypothetical future high-risk pregnancy: weekly doctor’s visits, insanely tight control, constant monitoring. A massive list of things that could go wrong. All of this became my reality over a decade later when I became pregnant with my son.

My high-risk pregnancy with him had overall, gone well, partially thanks to the hard work I put in to maintain a 5.1% average A1C, and partially thanks to luck. I was prepared for the extra scans. I was prepared for the drastic insulin changes. I was prepared for the constant vigilance. I was prepared for what could go wrong.

However, nothing prepared me for how to explain my type 1 diabetes (T1D) to my child. Or why suddenly, at this moment, I couldn’t share a simple juice box. Frankly, I was so dizzy, I couldn’t even get up off the bench.

“I’m sorry sweetheart, I can’t share. This juice box is mommy’s medicine.”

Later, after my sugars were stable, I thought about how to talk to my child about my chronic illness and the scope of what he needed to know. I wanted to achieve a balance – somewhere between knowing enough to be empowered but not so much that he’d become anxious; enough for him to understand what I was doing, but not enough for him to feel responsible for it himself.

All my life I had worked to overcome and ‘beat’ my diabetes, to not let it stop me, you know, upholding the usual mantras of strength. However, as I pondered how to talk to my kids about my type 1, I had to set that all aside. Pride had no place here.

The conversation remained informal, but honest.

Understand that mama’s body doesn’t work the way most other people’s do… I’m not sick, but it can make me feel sick sometimes… This is my insulin pump… This lancet is sharp, please don’t ever touch it.

He had a lot of questions.

Yes, Mommy beeps!… No, you won’t get it when I cough… Yes, even if I forget to cover my mouth… Yes, I can eat most anything as long as I’m careful… Yes, even ketchup… Yes, even ice cream… Yes, even ketchup ice cream – wait, that’s gross!

We both erupted in giggles.

A Universal Struggle

One of the beautiful things about the type 1 community is knowing you’re not alone. As I reflected on this intentional conversation, one of the first ‘growing up’ discussions I had with my son, I realized I’m not likely alone in facing this. Turns out, I wasn’t – the Parents with type 1 community was peppered with struggling T1D parents facing the same hurdle. When I looked for resources, I didn’t find anything quite suitable for a type 1 parent.

Throughout my son’s toddlerhood, I captured my efforts in a children’s book I wrote called “Mommy Beeps: A book for children who love a type 1 diabetic.” It was a passion project of mine to provide a resource that didn’t otherwise exist, and hopefully help another family lessen the mental gymnastics of explaining type 1 diabetes to a child who doesn’t have it themselves. Every page is personal – down to the angry T1D on the phone dealing with a denied insurance claim. Because that is reality. Diabetes isn’t just about the finger pricks and injections – the medical and insurance logistics can be just as heavy. Extra doctor’s appointments, tracking of supplies, prescription refills – it all took time away from playing with blocks, giggling on the floor, or reading “Goodnight Moon” for the third time on a given evening.

As for my son, he took to my carefully crafted conversation well – and all of the impromptu ones that followed. Once, after a particularly harrowing high sugar, we planned a library visit to check out some books about the body, so he could find the “piece of Mama that doesn’t work.” We never made it to that page, though, because he was too fascinated by more amusing parts of the body (the toilet humor sure does start young).

A few years later, I braved the high-risk pregnancy world again and came out with a second little boy. The first time my type 1 diabetes interrupted our playing with trains, I talked to him, too. He shrugged it off and kept the train on its way to the station.

Later that night, he leaned into me. Pointing to my stomach, he exclaimed, “Mama’s Dexcom! I kiss it.” Clearly, something stuck in our conversation earlier that day. And I will take any win I can get.

They won’t know any other way, this will be their normal. And really, that’s a beautiful thing, because the T1D community is now just a little bigger.

Find out more about “Mommy Beeps” here.

Source: diabetesdaily.com

Onederland: Poems About a Childhood with Type 1 Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Eliza Skoler and Kelly Close

Jamie Kurtzig, a high school student living with type 1 diabetes, just published a book of 100 poems that she has written over the last ten years

Onederland: My Childhood with Type 1 Diabetes is a book of 100 poems recently published by a 15-year-old diabetes advocate, Jamie Kurtzig. The book takes readers through Jamie’s childhood, touching on themes of growing up, navigating challenges, and finding hope. We attended the book launch yesterday and were so impressed by Jamie’s discussions about diabetes. We asked her if she could give one piece of advice to families that reflected the sentiments of her own family, and she answered eloquently with a single word “Hope.” She continued, “Never lose hope.”

Jamie was diagnosed with type 1 diabetes when she was one year old and has been writing poems since the age of five. Her book is now available from Book PassageBarnes & Noble, and Amazon. We sat down with Jamie to learn about her poems and her vision for this book.

Jamie: I’ve always liked writing poetry; I wrote my first poem when I was five, and it’s actually included in the book. Writing poetry helps me express myself and make sense of things and think about things, so it’s been a really fun process. I’m excited that Onederland is now published.

What did you learn about yourself during this process?

Jamie: Diabetes has really influenced who I am, and it has also given me a passion for finding a cure, something I want to do for the rest of my life. I realized this while writing my book.

What do you most want people to know about Onederland?

BookJamie: All of the proceeds are going to diabetes non-profits – including The diaTribe Foundation – to help find a cure, one of my main goals. I would love to experience just one day where I do not need to check my finger or bolus for a meal or have glucose tabs for low blood sugar. I’m so lucky to live in the Bay Area and have access to tools to help me manage diabetes; we need to find a cure not only for people like me, but for people everywhere.

How did you go from the poems you’ve written over the last ten years to this incredible, finished book?

Jamie: I had these poems but didn’t know what to do to get them on paper, so I talked with Book Passage, an awesome local bookstore. They introduced me to great mentors, who helped me create a story arc — my story — so that the book evolves along with my life. I start with an intro of me (“Where I’m From”), and then move into some of the challenges in my life and how I’m dealing with them and working with them, and then into more hope. I also wanted to include an index so people could see how old I was when I wrote each poem.

What was the hardest part of publishing a book?

Jamie: Getting all the details right! I had to order three proofs before I caught all the mistakes.

Who are your favorite poets?

Jamie: Mary Oliver – I have a giant quote of hers on my wall. And also Emily Dickinson.

How did your family respond to your choice to publish a book of poetry?

Jamie: My mom has been so supportive of me. In everything I do she always supports me and helps me get things done – which is awesome because sometimes it’s hard for me to get from ideas into… a book!

We asked Sara Kurtzig, Jamie’s mom, to tell us a bit more.

How do you feel about Jamie’s book of poems?

Sara: So, so proud. She’s so graceful to me, and I so appreciate her way and her spirit, and I think it comes through in her book. I had never read her book until she asked me to read her proof. I read the whole thing on the airplane and I was in tears. She had to do a lot of work to make this happen. She had to figure it out. She picked the paper, she picked the font, she picked the title. It’s a lot of thinking. I feel that she did not cut corners and took the time to do all of it. And I am so proud. She did this all in her own way. And she is donating every penny to various diabetes non-profits. We can get a lot of places with that power.

Find Onederland: My Childhood with Type 1 Diabetes at Book PassageBarnes & Noble, and Amazon.

Jamie was a Junior Summer Associate in 2019, working with college students and recent college grads at The diaTribe Foundation and Close Concerns. She is also now a writer for diaTribe – read about her experience with Loop and her advocacy work at the 2019 JDRF Children’s Congress.

Source: diabetesdaily.com

Search

+