How a Diabetes Pen Pal Program Helped Kiley Be Herself
Editor’s Note: Snail Mail is a program of Beyond Type 1, made possible by Abbott, an active partner of Beyond Type 1 at the time of publication, makers of the FreeStyle Libre glucose monitoring systems. Snail Mail is supported by the JDRF x Beyond Type 1 Alliance. To learn more about Snail Mail or sign up for your own pen pal, click here.
Amber, a mother of three, opted in to her hospital’s routine health screenings after each of her daughters was born. With no family history of things like diabetes, she figured it was best to know her daughters’ risk levels but didn’t expect anything out of the ordinary.
With Amber’s first two daughters, the tests came back normal, but after Kiley was born the hospital asked Amber to give them a call. They found that Kiley had a higher likelihood of developing diabetes. “I didn’t really think much of it,” explains Amber. “I figured diabetes wasn’t something she’d have to deal with until she was an old lady.”
Then, when Kiley was 7 years old, she began drinking a lot more water. She also lost a lot of weight, but because Amber saw her on a daily basis she didn’t notice initially. As she went through her phone’s camera roll, however, she saw how much weight Kiley had actually lost. At this point, Amber decided she needed to take Kiley to a doctor.
“I don’t know why, but I had a feeling to not take her to her general practitioner,” says Amber. “Instead, I took her to my friend’s urgent care that she just opened. There, she took Kiley’s blood sugar and told us we needed to go to the hospital ASAP.”
Kiley was immediately diagnosed with type 1 diabetes and had to be flown to a children’s hospital in Madera, California. Once Amber and Kiley went back to Kiley’s pediatric practitioner, he told them it was good they went to the urgent care. His office did not even have a blood glucose monitoring system and it would’ve taken several days for them to give Kiley a diagnosis.
Like a lot of other people with type 1, Kiley was the only one in her school with diabetes and the family didn’t know anyone else with type 1 diabetes (T1D). A few weeks after coming home from the hospital, Kiley began asking her mother, “Mama, am I better yet? Can you stop giving me these shots?”
“I remember thinking, “Oh, gosh. She doesn’t understand this,’” remembers Amber. “I wanted her to meet other people with T1D so I joined a Facebook group and we met up for ice skating.” Through the group, Kiley saw other kids and families with type 1 which helped her and Amber feel more normal and connected.
Even still, Kiley sometimes feels embarrassed about her diabetes. She doesn’t like when her insulin pump and CGM (continuous glucose monitor) beep, and often feels very different and isolated from her classmates. But her experience meeting other kids through the Facebook meet-up encouraged her to connect more to those with type 1. Ultimately, this is what led her to join the Snail Mail program.
Celebrating the highs and lows
Through Snail Mail, a type 1 diabetes pen pal program that matches participants based on age, Kiley has two pen-pals, Samantha and Sophie, who she has been writing with for two years. The girls exchange letters and text messages with one another; together they celebrate birthdays, diaversaries (diabetes anniversaries), and the every day highs and lows of being a teenager.
“Snail Mail is a great program because type one isn’t super common,” states Amber. “Diabetes can be very lonely and isolating. Kiley just wants to be normal and be like everybody else, and as a parent, I encourage her that she is completely normal and she doesn’t have to hide who she is, but that doesn’t always help. When she’s around someone else who has type 1, though, she turns into herself and she’s no longer worried about her beeping and diabetes.”
Kiley agrees with her mom and says she enjoys the program because it makes her feel normal and acts as another support system. Additionally, both Kiley and Amber have found it helpful to learn about how the girls manage their diabetes so they can see tricks that may help in their own day-to-day.
Overall, Snail Mail has helped bring a sense of normalcy and connection to Kiley and Amber. As people with diabetes know, the condition can be extremely isolating but these families have found support and friendship the old-fashioned way, mail.