Mary’s Story: Pediatric Diabetes
My daughter, Victoria, was diagnosed with type 1 diabetes on September 30, 2010. She was four years old. We were overwhelmed, scared and in shock. From the moment we met nurse Becky in the emergency department, we have been connected to the University of Vermont Children’s Hospital.
We spent the next several days being trained on how to live well with type 1 diabetes. Becky was the calm, compassionate, fountain of knowledge we needed. She prepared us well, and remained composed and caring through all of our emotions. We had daily phone calls until we were comfortable managing on our own. She listened as we worked through balancing Victoria’s insulin dosing with her nutritional needs. Becky let us figure it out under her guidance.
A few weeks after diagnosis, we traveled out west to visit family. Victoria had her first serious low blood sugar episode, but remembering our training with Becky, we were able to keep Victoria safe and continued with our visit. Thanks to the guidance we received, we have been managing high and low blood sugars as a family ever since. Becky made our transition to our new life successful.
The team at the UVM Children’s Hospital endocrinologist’s office has been respectful and helpful beyond measure. They have always presented choices to us, and the knowledge we need to make informed decisions. Whether it was choosing a pump, an insulin, or where to put the sets, the choice has always been ours. Our questions are answered patiently, and then the decision is left to us.
Related: Join the Type 1 Diabetes Advisory Council
They respect our experience with our child. Nurse Lisa has more knowledge about living with this disease than anyone we’ve met, but she never presumes to know more about our situation than we do. She provides guidance and tips and tricks for type 1 maintenance, but always in a team fashion. She has calmly talked us through severe episodes of hypogylcemia, or low blood sugar. We needed her when Victoria had a stomach bug and it was extremely challenging for her to consume the needed glucose.
Our family has become very involved with Juvenile Diabetes Research Foundation, the leading organization funding research towards better treatment options and a cure for type 1 diabetes. Through our volunteer work with JDRF, we have seen the importance of connection. Time of diagnosis can be a time of self-blame, anger, fear and disbelief. Connecting with others who are going through or have gone through the same thing makes it all seem doable. To know others mess up sometimes, and still live well with type 1 diabetes is empowering, and provides permission to not be perfect. This is why we serve as Patient and Family Advisors at UVM Children’s Hospital because it is an opportunity to connect and be that resource for families on a very local level.
Related: What is a Patient and Family Advisor?
Our advice to anyone in a similar position is to ask questions, make your needs known, listen to the wisdom of the team and follow-up. Come to your appointments prepared with data and questions. Because of UVM Children’s Hospital’s commitment to patient-and family-centered care, the success of the team effort depends on you as much as them.
Becky Beaudoin, RN, and Lisa Bolduc-Bissel, RN, are certified diabetes educators at the University of Vermont Children’s Hospital.
Mary McQuillen volunteers as a Patient and Family Advisor for UVM Children’s Hospital.
