Originally published in the April 2019 issue of Tampa Bay Parenting Magazine.
It’s the day that you don’t forget—kind of like the day that your beautiful babies came into the world, but slightly different. It’s the day you cry.
It’s the day that you are so thankful that you finally received word on what’s wrong and that you are on the path to recovery.
On July 30, 2019, our 9-year-old daughter, Shelby, was diagnosed with type 1 diabetes (previously known as juvenile diabetes). If you had asked me a week earlier if I even knew the difference between type 1 and type 2 diabetes, I would have said no.
At the time, I didn’t feel the weight of this diagnosis. But then again, this was not our first introduction to a rare medical condition.
When our first child, Jake, was born 14 years ago with a rare adrenal condition, I dove into learning, research and connecting to learn as much as I could so I could be the best person to care for our child.
When you have any child with any medical condition you, the parent, become the advocate, the expert, the wealth of information as you live and breathe each day with the condition, whatever it might be.
Educating others about small nuances of daily routines and giving support to other parents who have newly diagnosed children is where I have found solace in making sense of it all.
On July 30, 2019, we became a part of a new rare condition family: Type 1 diabetes.
Shelby had been feeling tired and had started to lose weight. Many of the typical type 1 diabetes symptoms were being masked by her other medical condition, the same adrenal insufficiency that her older brother suffered from.
Trusting our intuition, we took her in and were told to go to the hospital for a full diagnosis. I remember asking if she would grow out of it.
The sad look on our sweet nurses’ face told me my answer.
We knew nothing, and I felt like I was starting over. I cried because I knew how long it took to learn about the first condition. So I posted a long Facebook post and cast my net wide and far to learn from those in my village who could be my teachers. The response was overwhelming. From friends who are diabetes educators offering help and assistance, to my friends and family who are nurses, firefighters, teachers, school nurses, caregivers and the many parents in our circle of friends—all were willing to listen and learn more about how they could help.
I finally felt the strength again to learn, research and begin the long process of educating myself to become the advocate Shelby needs for years to come.
Our daily life is slowly getting back to normal, or as normal as we can possibly make it. Checking sugar before meals, insulin injections and routine endrocrinologist visits are a part of the normal.
As a family, we are in this together. We cook and eat healthy together. We are learning the technology that helps us anticipate how Shelby’s body is working and what she needs to keep her “in range.”
We know that knowledge is power and we want to learn from those who know more than us. Each year, 40,000 people are diagnosed with Type 1 diabetes. There is still so much work to be done to turn “Type 1 into Type None”.
On April 13, 2019, at Amalie Arena in downtown Tampa, we will be walking with the JRDF One Walk to help fund research, advocate for policies that accelerate new therapies and build communities and networks for families like ours to connect with others who are just like Shelby. Support Shelby here!
The JDRF in Tampa Bay has welcomed us with open arms. We hope that all our friends and family can join us to walk together and do some good for this community.
I will always be learning, always advocating for better care and treatment of my children and their two medical conditions.
As for Shelby, she is strong, brave and ready to learn the new ways that make her body stay healthy. She has learned to listen to her body, understand nutrition, understand how her body works and have the strength to give herself what it needs to function.
We are just getting underway, learning about new technologies and therapies that can also help Shelby’s daily management. If you ask her about what it means to have type 1 diabetes, she’ll say: “I’m still just me.” This is our new sweet life and one diagnosis can’t ever change that.