This is the story of not only how Type 1 Diabetes changed our lives 21 years ago, but how our family hopes to change the story of Type 1 Diabetes.
The year was 1995, and I had questioned our pediatrician over a nine month period about our six year old daughter's symptoms (bed wetting, extreme thirst, irritability) and the possibilities of diabetes. His reply time and again was: "If she had 'that' she would be 'really' sick." By December 13th she was 'really' sick, had lost a lot of weight, and was finally diagnosed by our general practitioner. (Only later did we realize how ignorant we were to not know we could simply have 'tested one drop' of her blood or urine ourselves and screened for sugar.)
Praise God she was not in DKA at diagnosis like so many others. Still, we spent the first five days of our new life at Children's Hospital soaking in what seemed to be many years' worth of knowledge. I remember being so thankful for having taken every single home economics and health class available in my school career, which had resulted in a thorough familiarity with food groups and nutrition allowing me to take a deep breath and concentrate on learning about Type 1 Diabetes (T1D) itself, insulin dosages, emergency plans, and--worst of all--how to stick needles into our baby girl.
Back home, we spent the next several months coping with the loss of life as it had been, hitting all the normal stages of grief. Type 1 doesn't just affect the child whose pancreas has malfunctioned, but the entire family unit and other close loved ones and caregivers as well. It takes a while to learn to trust others to keep one's child alive once the balance between life and death has become so delicate.
Years passed in the T1D groove. Lots of missed sleep, especially for her dad and I. Erin had hypoglycemia unawareness while sleeping on top of a high insulin sensitivity rate. To top it off, she was extremely athletic during her high school years, which made her T1D even more difficult to manage. In fact, one semester found her playing three sports simultaneously, with six hours of weights, running, practices, and games each Tuesday, divided between her pre- and post-school hours!
Honestly, we literally served as human continuous glucose monitors in the years before their existence. Even then, glucagon became our best friend, as she had countless seizures and near misses. Her early adult years brought even more stress as rebellion set in. Personally, I truly felt a sense of PTSD, one in which the source was never completely in the past and seemed to be coiled like a snake, hidden and ready to spring without any particular disturbance.
Fast forward to now. I am beyond grateful to be able to say, we are on the other side of those stressful years. Our daughter is a strong, independent, successful 25 year old young woman, working as an RN and volunteering countless hours serving the diabetes camp she loved as a child and traveling the world for medical mission trips. She stands as a testament to the power of persistence, hope, patience, prayer, and lots of love--in a way that those who grow up fighting for their lives 24/7/365 do. There is a certain strength and maturity that is only born through overcoming.
As as a side note: our son married a beautiful girl with Type 1 five years ago, so our lives are now twice as sweet. She, too, is an RN and wise beyond her years, adept at managing the fragility of T1D. She is carrying our third grandchild, at the moment, who is certain to be as wonderful as the first two they gave us. With that said, we have now endured another facet of living with T1D by walking the tumultuous path of T1D pregnancies and their risks. Without doubt, much more effort is involved in assuring healthy moms birth healthy babies when doing the insulin dance.
With so much at stake in the T1D world, we are committed to not growing complacent about the constant dangers T1D presents to our girls, the others, and those yet to be diagnosed. Over the years, we have heard numerous horror stories of children whose T1D symptoms were misdiagnosed leading to tragedy. Each time, the DOC (diabetes online community) erupts with passion about the changes that need to be made. To this end, our family founded Test One Drop. We have been called on by parents to represent them as a voice to a larger community. We now work as an alliance (UP Rising Against DKA) with Diabetes Activist, a group dedicated to improving the lives of those with Diabetes, and others, who are joining us to bring change in preventing DKA.