Sharing the Journey
Parent to Parent of PA has truly been a remarkable support system for myself at a time when I felt no one else in my family could understand. My daughter, Julia, was diagnosed with selective mutism at age four. We first learned of this unique anxiety disorder after completing pre-school. She would only speak to immediate family members and never uttered a single word throughout her year at preschool. Upon speaking to her pediatrician and first hearing of this anxiety disorder I realized that this needed to be addressed.
Approximately six months after learning of her first diagnosis we soon found ourselves rushed to the closest pediatric hospital for symptoms of diabetes. We had no clue what journey would ensue.
It began with about one month of frequent bed wetting, excessive thirst and weight loss, classic symptoms I was told. No one in either of our families has diabetes, let alone the less common type one diabetes. Our daughter was 4.5 at this time and her energy level was normal and there were no symptoms of illness. I asked my husband, “If she is eating normal and not ill, then why were her pants falling down and why were her shoulder blades protruding?” My motherly instinct kicked in and I made an appointment with her pediatrician. They did urine and blood work tests and sure enough her blood glucose levels were very high. We drove to our nearest pediatric hospital and found ourselves there for the next three days.
The first day consisted of lots of blood draws and dietary guidelines to follow. Day two followed with intensive training in the proper care for a child with type one diabetes. We were given a glucose meter and taught how to test her blood up to 10 times per day by pricking her fingers. It was quite tough as parents, but we learned it was part of our “new normal” daily routine.
After three days and two nights at the hospital we were sent home with eight prescriptions, a folder of instructions, dietary guidelines, and endless paperwork to be completed. I almost compare it to bringing home your newborn first child. I felt so many emotions including being nervous, anxious and overwhelmed. We got through day-by-day and after two weeks we went to a follow-up appointment. Her A1C was down to 8.5 which the doctors said was a huge improvement. And so life with diabetes began. We soon learned that nights were the most trying times, especially in the early days, as we were so focused on not letting her sugars drop while she slept. I would set my alarm to awaken me every 3 hours just to check on her.
I was first made aware of Parent to Parent from a friend of a friend. I called and explained that my daughter had two very different conditions that both presented serious issues.
It didn’t take long to find local parents dealing with the same health issues. I was connected with a total of three gracious mothers who were truly a blessing to speak with.
Parent to Parent has definitely been a positive support system for our family in so many ways. I am very close to my family and extended family, however I know no one with either of these medical needs, but Parent to Parent allowed me to discuss all questions in great detail with these moms. One mom and I spoke on several occasions as my daughters needs changed and she got different school nurses or teachers. I learned about getting her as much attention as possible in school so that she didn’t fall behind or get overlooked.
The scary part of having diabetes and not speaking was definitely finding a way for her to be able to let someone know if she didn’t feel well. The school nurse helped us to make this easier by providing laminated flash cards that she kept on a key ring. She would flash a facial expression as to whether she felt dizzy, nauseous, hungry, or tired.
Julia is now six and still working on her social anxiety issues. We have chosen not to use medicine for treatment at this time, however she does see a counselor and speech therapist at school. She wears both a continuous glucose monitor and a pump and both of those help to make our daily routine a bit more normal.
I want to take the time to thank Parent to Parent for such a great program that brings parents of children in Pennsylvania together and allows us to form a strong bond. I no longer feel that I am struggling with this alone.
— K Berger