How My 8-Year-Old with T1D is Changing the Stigma of Disease in the Middle East
Visit T1D2Go.org to learn more about Sugar Box, find T1D resources in Arabic, an English/Arabic T1D coloring book for the youngest learners, and my latest book—The Diabetes Darling—an early chapter book that brings a bit of magic into a new T1D diagnosis (English). Please help spread the word about this critical resource to help Arabic-speaking families in other parts of the world!
Family and adventure. If you boil it all down, this is what makes me happiest in life.
So when my husband, our almost two-year-old Nora, and I settled in Jordan (as in western Asia—the Middle East) eight years ago, I was thrilled. It is an ideal combination of rich Arabic culture and the ease of western amenities—perfect for our growing family. We finally had a home that can be our own, with some of the most welcoming people I have ever met in the whole world. What other nation opens its doors to a Yemeni-American couple and sells insulin for $25 a vial? Sign me up!
And then, May 11, 2017—a day I will never forget.
My daughter’s type 1 diabetes diagnosis in the country of Jordan
Weeks after our second daughter, Dalia, was born (in Jordan), my husband and I noticed that Nora (then 3 years old) was drinking unreasonable amounts of water and having accidents despite being potty trained. Do you know what our pediatrician said?
“Nora is just jealous. Spend more time with her, it will pass.”
Who were we to not believe this doctor? Still, summer break with my family was a few weeks away, and we would get a second opinion.
Little did we know, she wouldn’t make it that far.
Somewhere between London and Phoenix, Nora slipped into a coma—she was in severe diabetic ketoacidosis (DKA). All I could do was watch the flight tracker knowing that Canada was the closest place to land and it was hours away. (I still have a hard time watching those screens even six years later.)
After that, I can only recall a few memories that sort of sit in a vacuum. What I do remember is this:
I remember the incredibly kind people. The lady that held my 5-week-old baby for five hours so I didn’t have to think about her. The man sitting next to me who offered food and help with luggage. And the doctor on the plane who helped make the final decision to ground the plane.
I remember the three of us being dressed for summer in Arizona and the flight attendants giving us every blanket they could find because it was literally freezing outside.
I remember getting to the hospital and us being the only ones there (though I’m not sure we were).
I remember the doctor standing next to me and saying type 1 diabetes as we both look at Nora laying in her bed, attached to way too many tubes and devices. Of course, I ask, “But she will be okay, right?” The doctor had this look and finally replied, “I hope so.” Nora’s blood glucose was over 900 mg/dL and her A1C was 13.9 percent. She had a 50/50 chance of surviving.
She was so dehydrated from DKA that blood couldn’t be drawn from her arms—they had to use her toes instead. I remember the first time these tests hurt her. She was so angry. All I could do was cry because she was coming back to us.
And yet, we are the lucky ones. As horrific as this was, and under the care of the most amazing nurses and doctors, Nora pulled through. Five days later we were released and our real journey began.
How beliefs in Jordan view a disease like type 1 diabetes
What happened that day profoundly changed me and the way I view the world.
For a while, I lost my sense of adventure. My whole life paused as I learned how to deal with this disease, our new normal. We live in a country where medical differences are taboo.
Yes, we were even told that Nora should hide her diabetes because she would never get married.
Nora was almost five years old and had never been invited on a playdate. Can you imagine that? Her best friends were her wonderful nursery teacher and her baby sister. That’s it.
This all got me thinking: Why can we easily find small acts of kindness like I saw on diagnosis day, but when you look for larger examples, they are few and far between? Why does it take a parent to advocate for the best care, medicine or even for her community to treat their kid with a kind curiosity, not shun them away?
Once we emerged from the fog of her diagnosis, the answer became clear.
Our mission must be to build our community through education.
If we talk about diabetes, then people don’t have to wonder, be fearful or mean. They can just know.
Advocating for herself in the country of Jordan with type 1 diabetes
That first year she was in school, Nora stood up in front of the whole elementary school and spoke about type 1 diabetes like any confident 4-year-old would.
“I wasn’t born with it, I can eat anything you do, I just need insulin. No, you can’t eat my skittles. When you have to have as many pokes as I do, then maybe I’ll think about it.”
Proud mama for sure. And from there she blossomed. Every November, she still stands up and speaks about life with type 1. As I am writing this now, Nora has a meeting with the middle school principal on Wednesday so she can discuss how to bring the older kids on board with the elementary school for diabetes awareness this November.
And then it happened. After a variety of classroom talks, book reading, playdates and fundraising, Nora’s type 1 diabetes was no longer a big thing. Nora’s true group of friends, peers, coaches and teachers just got it. Sure, Nora still has the good and bad days, and times she has to cancel plans because diabetes doesn’t play fair. And these people didn’t know what to do specifically to help her, but they weren’t scared and they learned to ask. Type 1 diabetes is no longer this big scary thing that prevents Nora from being the shark-loving, social and creative girl that she is.
What we have built has taken over four years. And nobody should have to do that alone.
The Sugar Box: Teaching your community about T1D
This year, Nora is 8 years old and we are proudly working with Jordan’s top pediatric endocrinologists to provide a new sort of support for children and their families with T1D so they don’t have to build their communities from zero.
The first of its kind here, Sondouq Al-Sukkar (or Sugar Box) is a free T1D starter kit in Arabic.
It includes all locally made and sourced products to help kids begin this daunting journey. Sure, learning insulin and carb-counting is critical, but it is equally important to have a community that gets you.
The free kit includes a sling bag with a special pocket for glucometers, a cooling pouch for insulin, a kid-friendly blood sugar log book in Arabic, an Arabic/English coloring book about the T1D basics, a teddy—for moral support that also helps you learn how to give injections of insulin—and so much more!
We hope to spread this critical resource to other Arabic-speaking countries—and appreciate any effort to spread the word!
Want to support this project? Visit T1D2Go.org to learn more about Sugar Box, find T1D resources in Arabic, an English/Arabic T1D coloring book for the youngest learners, and my latest book—The Diabetes Darling—an early chapter book that brings a bit of magic into a new T1D diagnosis (English).