Almost 10 years ago, my daughter Paige was diagnosed with type 1 diabetes at the age of 12. I was scared, worried, stressed and overwhelmed. I struggled to be brave and not cry in front of my children. My story may sound similar to yours.
During Christmas break, Paige was constantly hungry, thirsty, irritable, and anxious. She was tired all the time, made frequent trips to the bathroom, and her clothes hung loose against an increasingly thin frame. I did not put the pieces (or should I say symptoms?) together until we traveled together during the holiday break. As I looked at pictures from the trip, I realized something was wrong. Very wrong.
I called our pediatrician and said I thought my daughter had either type 1 diabetes or an eating disorder, though I had serious doubts about the latter. I took her in and 15 minutes after a blood glucose check, he said, “Your daughter has type 1 diabetes, her blood glucose is 561, and they have a room waiting for you at Children’s at Egleston. Go immediately to the fifth floor, do not check in downstairs.” I barely remember the drive there, and I know now I am fortunate my daughter was only at 561, not in diabetic ketoacidosis (DKA) and did not require being in the emergency room or ICU treatment.
I am thankful I knew the symptoms of type 1 so that I was able to catch it somewhat early, although my daughter had already lost 19 pounds. Type 1 likes to creep up and its symptoms often mimic that of the flu: excess sweat, dizziness, anxiousness, blurred vision, weakness, headaches, fatigue.
Please know you and your child did nothing to “get” type 1 diabetes. He or she did not drink too much juice as a baby, eat the wrong foods or “catch” something. It is an autoimmune disease and your child would have gotten it no matter what you did.
On our second day in the hospital, we met a pregnant nurse. My first thought was that my daughter would never be able to carry her own children. Fatefully, the nurse told us she was also a type 1 diabetic and had two healthy children in addition to the one on the way. You cannot imagine the relief I felt. Now 10 years later, I wish I could find that nurse and tell her what a great, positive impact she had on our family.
The first few months were not easy as we learned to count carbohydrates, weigh and measure food, check blood glucose levels, give shots and remember to take the diabetic kit everywhere we went. And that’s not to mention explaining and training teachers and friends “what to do” if we weren’t around. But the fog lifted when I met other type 1 diabetic parents and my daughter met other type 1 friends.
These people “got it” and understood what we as a family were going through. The counting, measuring and explaining to others does not go away, but it does get easier and your child can lead a normal, healthy life.
Do not let diabetes control you or your child’s life. Let your child control his or her diabetes, and that will give your child the power. I highly recommend reaching out to your local diabetes community for support groups. I became a JDRF support group leader nine years ago and am so glad I did. I also visit newly diagnosed families at Children’s and volunteer at Camp Kudzu.
Paige has had lows and experienced a few crashes during volleyball games and vacations. The lows and the highs will always be there, but you’ll learn how to treat them and go on. Paige rode horses, swam, and played lacrosse and volleyball in middle school and high school. In high school, she went on week-long mission trips to visit orphanages in Ukraine. I truly did not worry as I knew she knew how to manage her glucose levels.
Now a college senior, Paige continues to lead an active life in another state (yes, I did let her go away!). She does not consider having type 1 to be a disability and refuses to let it define her.
Yes, a type 1 diagnosis changes life as you know it. But, it has made Paige a stronger and more caring person. We’ve come a long way since those holiday pictures, and I couldn’t be more proud of my daughter who just happens to have type 1 diabetes.