Allison's Mom

My fourteen year-old daughter, Allison Eva, has Type I Diabetes. Now I understand how we came to name her after her grandmother (my mom), Eva. Allison has both challenged and accepted this illness with the same grace and courage and sense of humor as her "Mom-mom" did at the same age in dealing with the difficult times and life during World War II-torn Germany.

My name is Chris, and my first and favorite job is being mom to Allison and her younger sister Sarah. Outside of home, I have been an Intensive Care Unit nurse for 20 years. Yet my nursing training and years of practice prepared me little for the challenge of raising a child with a chronic illness. Yes, I knew most of the medical part of it, (although I learned a lot more and actually improved and fine-tuned my practice in the ICU) and quickly caught on to dosages and exchange diets and insulin adjustments for more or less exercise or parties, etc., etc.

It was the emotional impact and the constant "chronic" impact that I think affected me and the family. We do everything most families do, and Allison has had more opportunities than most. She plays sports and music, takes art classes to improve her natural talent, frequently enjoys concerts and live theater, is a favorite student of her teachers with honor roll grades, skis, belongs to a health club, baby-sits in our neighborhood, travels with her family, volunteers in community efforts, enjoys a large group of really nice and mostly supportive friends who accept her as she is, and has a family who loves her very much and does anything and everything possible to help her. And yet, this disease seems to loom over us like a rain cloud always threatening to down pour and thunder and lightning.

We were strolling along in our lives with good jobs, a simple home in a nice, close-knit neighborhood where our kids walked to school (just a picture of happiness) until diabetes hit Allison when she was six and in the first grade. I remember vividly that day and the doctor's visit. It was Allison's routine check-up. The only thing that was unusual to report was that she was very pale and had lately had less energy. Her doctor made the diagnosis quickly with a urine strip followed by a blood test (blood glucose was 500: we had red licorice on the drive in). What I remember most, though, was the sensitivity and caring with which the doctor delivered the news to me. It was late Friday afternoon (and she had several more patients to see) and yet she sat with me, answered my questions, gave me hugs, and sent us on our way to see the specialist.

So, the journey began, and in addition to all the wonderful things in our lives and everyday stresses, tensions and relationship issues, we also had (are you ready for the list?) diabetic supplies like glucometers, lancets, different size needles, different types of insulin, glucagon, blood testing strips, urine ketone strips, medic alert bracelets and necklaces (which kept getting lost), insulin pens, glucose tabs or juice boxes, cracker packs, alcohol swabs and cotton balls. Then there was the frequent visits to school to formulate a care plan with the nurse and multiple hours of time to educate teachers and aides and anyone else who would have contact with Allison in school. Each day was different, so we often sent a journal back and forth to school to share information. The same communication had to take place with any extracurricular activities, such as sports or art/theater classes or even going to a friend's house to play or for a party or sleepover. Everyone had to understand her needs and feel comfortable with her. There were lots of phone calls as well as lost work hours due to Allison's special needs. There are four diabetes clinics a year to attend, which include appointments with a doctor, nurse, and nutritionist, followed by support groups for the kids and for the parents.

Shall I go on?

There are blood sugar checks before each meal and sometimes before or during sports or by mom in the middle of the night. I was sleep deprived for several years. Allison goes to diabetes camp, and we both go to counseling. Diabetes fundraisers were added to our busy lives. And I should mention all of the trips to the pharmacy: I can fill out those insurance claim forms with my eyes closed.

Someone recently accused me of having a "Pollyanna" attitude towards life. It's true! And that, coupled with God's overseeing eyes, has carried me this far in helping and guiding and loving Allison and my family throughout this journey. I was able to make the best out of each situation and try to find some good in it.

Starting with that first visit, I remember being grateful that the disease was diabetes, which we could manage, and not a disease which was really out of our control. We have heard horror stories from other parents about schools and yet our experience has been very good with caring people willing to go the extra mile for Allison, such as the CHaD diabetes nurse coordinator and the school nurse. The people at my workplace have been flexible and understanding. We have received countless hours of help in dealing with the huge emotional impact of this disease through the STAR program and Allison has been working to move into adulthood and take on the challenges of diabetes on her own. A college student mentor taught Allison to love life and pursue her dreams, in spite of her diabetes.

I have received an incredible amount of empathy and friendship from so many people. My thirteen-year old daughter, Sarah, has been patient with Allison and I, even though her needs often came behind the needs of Allison and diabetes. I know that she will always be a loving source of strength for Allison. My parents have also been a constant source of support for all of us as well. All in all, we have had good experiences and lots of help from many very caring people.

The part of this story which is hardest to tell is what I wish I had done differently: