“We’re human. We adapt. We find ways to manage the unpredictability of life. I had done that by believing I could control this, when in fact, all I could do as a parent was to anticipate and monitor her condition as best I could and then treat and react accordingly…The reality, the devastating truth that crushed me that night, was the horrible realization that no matter what I did, harm could find her anyway.”
–Stefany Shaheen, Elle & Coach
After watching her daughter Elle collapse into a seizure brought on by low blood sugar, Stefany Shaheen didn’t know how she could continue to manage the round-the-clock care necessary for type 1 diabetes management. It can be impossible to see the light at the end of the tunnel, especially when it seems like you’re doing everything right and it still comes out wrong.
But as the mother and daughter duo will tell you, hope comes in the unlikeliest of places. For their family, that hope was a fuzzy yellow lab so attuned to high and low blood sugars it almost seemed miraculous. In her new book, Elle & Coach, (pronounced “Ellie”) Shaheen brings readers through the story of her daughter’s initial diagnosis at age eight, the years spent trying to manage her diabetes, and the ultimate decision to welcome a diabetes alert dog named Coach into their home.
Shaheen first got the idea to write a book about her family’s experiences after sharing tales of Coach’s amazing abilities with friends and family over social media. As more and more people reached out to her, Shaheen began to see that sharing the whole story about Elle’s diabetes could potentially help others managing diabetes and educate those who didn’t know much about the daily realities of the disease.
While reading the book, readers may feel like they are watching Elle grow up. When Elle is first diagnosed she is just a child, unable to explain why she’s so irritable, growing thirstier with each passing day and ultimately having to go to the bathroom four times a night. Only after Shaheen puts her foot down in the doctor’s office, insisting they do a simple urinanalysis (she has suspicions of diabetes since her husband’s brother has type 1), do they find that Elle’s blood sugar is off the charts at 964. Elle was rushed to Boston Children’s Hospital, where she and her mother took a weeklong crash course in diabetes management. They returned to Joslin Diabetes Center for check-ups and began the long journey to help Elle learn to live with diabetes.
In the coming years, Elle and her family learn how to count carbs, navigate the school nurse’s office, and the holiday season. The journey continues as Elle enters her adolescent years, which brings new challenges in managing her blood sugars. Elle is devastated when her A1C comes back at an all-time high and Shaheen shudders at the thought of facing milestones like learning to drive and leaving for college.
And then during a trip to Washington D.C., where Elle and Shaheen served as co-chairs of the JDRF Children’s Congress, they witness a diabetes alert dog in action:
“[The dog] scanned the room looking for the girl’s mother. When he couldn’t find her, he started circling around the child to get her mother’s attention… I wasn’t close enough to discern if she was high or low, but they made their adjustments, rewarded the dog, and he lay right back down. The incident was over in a matter of seconds. They didn’t even disturb the hearing. It was stunning. I made a mental note to myself: I need to learn more about these dogs!”
In the book, Shaheen splits her family’s life as B.D. (before diabetes) and A.D. (after diabetes). But it could just as easily be split into B.D. and A.D.–Before Coach and After Coach.
Shaheen is incredibly reluctant to get a dog, but she soon sees how much he helps Elle and what an asset the dog is to her entire family’s wellbeing. Despite the initial skepticism, Coach quickly becomes a fixture in their lives.
Although the book is told from Shaheen’s perspective, she and Elle worked very closely to write the book together.
“I was willing to be a part of it with her every step of the way,” says Elle. At one point during the drafting process, very close to when the final manuscript was due, Shaheen decided the tone of the book felt off. Shaheen and Elle spent an entire day in their basement sifting through Elle’s old journals and memorabilia, excerpts of which were added to the beginning of each chapter. “I think that was an interesting way to bring my voice into story,” says Elle.
In telling their story, Shaheen wanted to incorporate accurate medical information to inform readers. She discusses basic facts, explaining the differences between type 1 and type 2. She presents information on the newest clinical trials. She dispels misinformation—especially the notion that insulin is a cure. “It’s a way to stay alive,” she says, “But it doesn’t resolve the day to day challenge of management that type 1 demands.”
Shaheen explains that Coach is not the only component of Elle’s care. She takes multiple daily injections and now uses a Continuous Glucose Monitor. But Coach’s skills are invaluable to her, taking away that suppressive anxiety to constantly check her blood sugar levels, especially during the night.
“I just feel relieved at this point. Before Coach, everything was always up in the air,” says Elle. “But he’s helped not just me but my parents. We feel reassured that we have another support system to help me.”
When the Shaheen’s finally decided an alert dog was right for their family, they turned to the organization CARES. “I think people often wait until they’re psychologically ready for the dog and then it’s still a two year wait,” says Shaheen. “So I suggest for folks who think this might be something that they would benefit from, just start the application. Because I wish we had done it sooner.”
Elle & Coach tells the story of having to live with, deal with, and overcome adversity in order to move forward. According to Shaheen, it’s written for any parent who has lain awake at night worried about a child who is struggling, whether it’s a learning disability at school, a medical condition, or a social challenge. “Whatever it is,” says Shaheen, “I hope, that our story will speak to those folks. I want them to know they’re not alone.”
Elle, on the other hand, thinks everyone should read this book. It’s a relatable story, whether or not you’re a parent, whether or not you have diabetes, about overcoming life’s challenges and finding hope in the most unlikely of places.
To learn more about Elle and Coach’s journey, click here.