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

Parenting with Diabetes: I Taught My Two-Year-Old Daughter How to Be My Caretaker

This content originally appeared on diaTribe. Republished with permission.

By Cherise Shockley

diaTribe Community Manager, Cherise Shockley, shares the story of her diabetes diagnosis and how that diagnosis affected her family

I was diagnosed with latent autoimmune diabetes in adults (or LADA, a type of diabetes between type 1 and type 2) in July 2004, at the age of 23. I was a newlywed, my husband, Scott, was deployed, and I had just finished five-and-a-half years in the Army Reserve. I was placed on oral medication (glipizide), and I began to manage this form of diabetes with diet and exercise, knowing that someday I would require regular insulin for the rest of my life.

In March of 2005, Scott returned from deployment, and a month later we found out I was expecting our first child. Nine months into my diabetes diagnosis, I was carrying my first child; I was temporarily placed on Regular and NPH insulins, because I had to stop taking my oral diabetes medication during pregnancy. At the time, I did not have a continuous glucose monitor (CGM) – the first version of the Dexcom STS wasn’t invented until March 2006,  as my colleagues at diaTribe wrote about here.

My pregnancy was smooth-sailing aside from my diabetes, which took quite a toll on me, but I knew if I did what I could to manage the condition, my little girl would be okay.

Eight months after I gave birth to my daughter, Niya, we said our good-byes to our families and moved from Kansas City, Missouri, to our new duty station in Southern California.

From the time my daughter was one year old, until she was reached two, I was taking oral medication, and my hypoglycemic episodes were few and far between. When I did experience hypoglycemia, I was either at home or at work, and my husband or my coworkers could help me out.

After my daughter turned two, I noticed that my medication was no longer working. With the help of my nurse practitioner, I tried everything in my power to get oral medication to work for me, but it was time to see an endocrinologist.

A few days after my first visit, I met with a nurse practitioner. He told me, “Your beta cells are still present, but we do not want to burn out what little function you have, so I recommend you start taking insulin.” I paused. Although I knew this day was coming, it was like hearing “you have diabetes” all over again.

When we began talking about pump therapy, I asked for something easy to use, knowing that my two-year-old daughter would be my primary caretaker.  I wanted Niya to be able to help me if she needed to.  With my husband working late hours and traveling, we made a decision to teach my daughter how to manage my diabetes. We taught her how to call 9-1-1, how to treat my lows with apple juice, and eventually, how to shut my pump off. In the back of my mind, I wanted her to know how to manage diabetes just in case she received her own diagnosis later in life.

Parenting

Image source: diaTribe

Many parents of children with diabetes share stories of not being able to sleep because they are worried about waking their child up in the middle of the night to check their blood glucose levels. In my family, my daughter was the person I woke up in the middle of the night when I experienced low blood glucose. Before I had a CGM, Niya was the person helping me check my glucose levels and stuffing glucose tabs or candy into my mouth in the middle of the night when my husband was not home.

From the time she was two, my daughter was my primary or secondary caretaker. Scott retired two years ago, so now Niya only helps me out when it’s just the two of us together. If she hears the alarm from my CGM, she asks if I am okay.

I never asked Niya how she felt about her role in helping me manage diabetes; I was nervous to interview my 13-year-old daughter, but I wanted to know how she felt.

Me: How did it feel growing up with a mother with diabetes?

Niya: I was a normal kid. I can eat what I want. I was able to learn how to manage your diabetes and help you when you needed help. I know how to recognize when you are okay.

Me: How old were you when you realized I had diabetes?

Niya: I was four or five. You asked me to film a diabetes video for you.  The hook in the song, “Who has diabetes? Help us stop diabetes,” made me realize that diabetes was a bigger issue. Diabetes was my normal – but the video helped me see that diabetes was also serious.

Me: Was there ever a situation that scared you?

Niya: We recently went to Disney Springs together during Friends for Life. You went really low, and I was scared that you weren’t going to be okay. I didn’t want anything to happen to you when I was with you; I didn’t want to be responsible. Diabetes is a lot of responsibility for a kid, but in some ways, I’m used to it.

Me: That was a scary moment for me, as well. It was the first time in a long time that I was not able to get my blood glucose levels to go up (with glucose tabs or candy). It was important to me to let you shop with your friend while the team at Disney Springs sat with me.

Niya: Thank you for letting me be a kid and not forcing me to live as if I had diabetes. I love you.

Me: Is there anything you would like to say to other children who have parents with diabetes?

Niya: It is sometimes difficult having a parent with diabetes. I now have two parents with diabetes, since my dad has type 2. I want other kids to know that they can navigate it – they will feel extra pressure that other kids don’t feel, but hang in there. When your mother is as special as mine, it’s worth it; diabetes is a big part of my family.

Source: diabetesdaily.com

The World’s Worst Diabetes Mom: A Book Review

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

By Alexi Melvin

Familiar Face

If you have been an active (or even not so active) follower of the type 1 diabetes (T1D) online community in the past few years, you have likely heard of Stacey Simms. Stacey is a radio host, T1D mom and blogger turned host of the popular podcast Diabetes Connections.

But recently, she’s added a new title to her repertoire: author. Her new book, “The World’s Worst Diabetes Mom,” is currently available for pre-order.

“This isn’t the book I set out to write,” Stacey immediately notes in the introduction. What was initially intended to be a book based on past blog posts turned into something much more unique when measured against other diabetes-related books that came before this one. After an offensive comment made against her parenting skills on social media, Stacey realized that she needed to write a book that acknowledges not just the T1D successes in life, but perhaps moments of pure screw-up that all who deal with diabetes know too well.

This is exactly what Stacey’s book does — and beautifully so. “The World’s Worst Diabetes Mom” does not glamorize the life of a parent of a child with type 1 diabetes or the struggles of a child. The book, in a way, celebrates that the idea of perfection is simply not a “thing” that can be attained while managing type 1 diabetes. Stacey is unapologetic and honest about the lessons she has learned as a T1D parent in a way that makes the reader — whether a parent themselves or a person with type 1 recalling their own early experiences — feel a lot less alone.

Book Review

Image source: Beyond Type 1

Stacey’s charmingly relatable book is organized into chapters based on type 1 milestones in her family’s life and other applicable issues such as: The First Night Home, Pump Start, On-the-Road Adventures, Summer Camp and Social Media Support. The T1D mom takes good care to emphasize that her opinions and experiences are not to be taken as medical advice, and she even includes “Ask your doctor” sections with helpful tips for what to address with your doctor with regard to each preceding chapter.

What Makes It Enjoyable

Although there are many stories and perspectives from people who have been diagnosed with type 1 diabetes available to us today, this book is an important window into the somewhat unexplored life of a T1D caregiver.

Every parent with a child who has type 1 diabetes will undoubtedly remember instances exactly like, or at least very similar to, the ones that Stacey recalls in each of these chapters about learning to manage her son Benny’s T1D, who was diagnosed just before he turned 2. And, even if the reader’s child was diagnosed at a much later age, the emotions that tie into each story – i.e. feelings of inadequacy or failure but ultimately becoming stronger for it – will resonate hugely.

Although the book is written by a T1D parent, people who have type 1 themselves will likely relate to the many moments of confusion and frustration, and will appreciate Stacey’s consistent ability to laugh along the way while always taking the topics seriously.

In this day and age where social media status reigns supreme even in the T1D realm, it is refreshing to read a book that encourages parents, caregivers and T1Ds themselves to resist the pressure to get it right every time. Stacey’s book is hinged on the idea that life is a journey, and that there will be bumps, and that regardless of how many bumps, it is your road to navigate. It’s about the journey.

About the Author:

Stacey Simms hosts the award‐winning podcast “Diabetes Connections,” after having hosted “Charlotte’s Morning News” radio show for many years. She has been named one of Diabetes Forecast’s People to Know, the Charlotte Business Journal’s 40 Under 40, and Mecklenburg Times’ 50 Most Influential Women. She lives near Charlotte, North Carolina, with her husband, two children, and their dog, Freckles.

Source: diabetesdaily.com

Search

+