From Michele: When we are born, the first thing parents wants to hear is a cry and to hear that their son or daughter has 10 fingers and 10 toes. And growing up, we oftentimes don’t worry much besides cuts, bruises, and broken bones. For Kristi, that was a bit different as she was diagnosed with Type 1 Diabetes when she was only 13 months old. As a young kid she was given extra responsibilities that not many other kids had to take on. But in spite of it, she found a way not only to survive, but to thrive. Read Kristi’s story on what it’s really like to be diagnosed at such a young age.
All my life I’ve known diabetes.
In recent years, an increasing percentage of the people diagnosed with type 1 diabetes has been young adults. This was not the case with me. With a diagnosis age of just 13 months, I’m a bit of an anomaly. Type 1 is usually diagnosed in children, around ages 5-11 (roughly). It’s not as common in young adults or babies. But shortly after my first birthday – a week and a day to be exact – I was taken to Mt. Sinai in New York City for hyperglycemia (high blood sugar) due to new onset of type 1.
A mother knows
Around the time of my first birthday, something seemed to be off. I was constantly asking for my bottle, peeing a lot, and had less of that good ole’ baby energy. On a Friday, my mother took me to the pediatrician. They told her it was a virus, and sent me home to let it run its course. By Monday, nothing had changed. “You looked like a rag doll,” my mom always says, “and I said ‘something’s not right.’”
Mom brought me right back in to the pediatrician and shared her concerns. At this point he must have suspected diabetes, because he collected a sample of my urine. It was loaded with sugar. The doctor told my mom I would have to go to the hospital immediately. She paged my dad – yes, paged, this was 1993 – who came to meet her at the pediatrician’s. Together, we journeyed into NYC where I was admitted into the ICU at Mt. Sinai.
My total hospital stay was 1 week. During that week, my parents practiced checking my sugar on my toes and doing injections on oranges. I often wonder about that time and wish I could remember what it was like, especially when I hear other people talk about their diagnosis stories.
Knowing nothing else
Most people who were diagnosed young say they don’t remember life before diabetes, but I really don’t remember. I grew up going to diabetes camp. I talked about diabetes in school: my mom came and did presentations in my class; when the debate about stem cell research surfaced during Bush’s presidency, my classmates wrote letters to advocate for it since it could possibly help find a cure for diabetes. People often look at me wide-eyed and make a sad face when I tell them how I old I was when I was diagnosed. But to me, it seems there are many advantages to being diagnosed so young. Most of which I didn’t realize until I was older.
Advantages of Being Diagnosed Young
One of the biggest advantages was the community and the normalization. Growing up at camp meant I was surround by other kids and young adults with type 1. I knew I wasn’t the only one out there. How big of a privilege this is didn’t really hit me until I started going to meet-ups and meeting people through the diabetes online community. There are so many adults out there who have never spent time with another type 1. Every time I meet a family or individual living with type 1, I recommend camp. Or support groups, or meet-ups. Some people are more into it than others, but it’s really remarkable the positive impact it can have on type 1 management.
Growing up with type 1
Now this isn’t to say that I never struggled. Having diabetes so young meant it was very difficult for my family and me to transition into adolescence and independence. We had to negotiate how certain responsibilities would be addressed, and how diabetes made me feel even though I had lived well with it for so long.
We fought often. I struggled with feeling overwhelmed and feeling like a burden – a common concern for people living with chronic illness.
There were bumps on the road, but with a lot of love and patience (and therapy), we made it through.
Camp inspired me to want to help others for a career, children in particular. I went to Rutgers University and majored in psychology. Afterwards, I got my masters in social work. I’m now a Licensed Clinical Social Worker and currently work in a children’s hospital with patients and families. I love what I do, and I often reflect that diabetes is a big part of what got me here. It’s easy to take for granted how normalized diabetes was for me since it was just always a part of my life. I write my blog to try to spread awareness and show other people with type 1 that their experiences aren’t isolated, and that they’re not alone.
What We Can Do…
There are so many things that we’re capable of as people with type 1. This year I ran my first half marathon, and I wouldn’t have been able to do it without the insight of the diabetes running community. There are diabetics climbing mountains, scuba diving in the sea, lobbying Congress, or just living average, normal lives. Just knowing someone else is out there with the same chronic illness as you and has struggled and come out the other end is incredibly encouraging.
If you were recently diagnosed… Check These Sources Out!
1.) https://www.jdrf.org/t1d-resources/living-with-t1d/school/
2.) https://www.medtronic-diabetes.com.au/living-with-diabetes/type-1-diabetes/what-is-type-1
Highland AvenUe restaurant says
This is really fascinating, You’re an overly professional blogger.
I have joined your rss feed and sit up for searching for more of your excellent post.
Additionally, I’ve shared your web site in my social networks