By Catherine Marschilok, MSN, CDE, Board Certified in Advanced Diabetes Management
The anniversary of the day the uninvited guest–type 1 diabetes–came into my life to stay is one I would rather not have to acknowledge. It was exactly 20 years ago that our oldest son, David, was diagnosed with type 1 diabetes at age 8. Nine years later came the news of our daughter Amy’s type 1 diagnosis at age 21. Like many parents learning to deal with a child’s chronic condition, I had to struggle at first to let positive thoughts and actions overcome the emotions I felt: sadness, frustration, powerlessness, fear, and anger. I realized I had no power to prevent diabetes, but I did have the power to make decisions about how to deal with it, and the ability to cultivate what I needed to help our whole family.
Underlying our every action was the knowledge that we were in charge of our children’s diabetes care. However, as both a parent and a medical professional, I quickly came to see that it takes much more than caring parents to raise a child with diabetes. Rather, it takes a larger “family”–a team with key medical professionals with whom you become acquainted, and then recruit.
Who are the members of this team, and what should you look for them to provide?
Physician: Depending on the age of the person with diabetes and the availability of specialty care, your physician may be a pediatrician, primary care doctor, pediatric endocrinologist, or adult endocrinologist. He or she is responsible for the management of your/your child’s diabetes, prescribing necessary tests, medications, supplies, equipment, and referrals.
A diabetes educator is the medical professional with special, advanced training in caring for and teaching people with diabetes. When certified in the field of diabetes, he or she is known as a certified diabetes educator (CDE). CDEs are most often registered nurses (RNs). The diabetes educator will be able to guide you and your child through the issues of living day-to-day with diabetes, and teach you about home testing and record keeping.
A registered dietician (RD), who often is also a CDE, will work with you to develop a meal plan, increase your knowledge about eating well and counting carbs, and guide you on sports nutrition, weight control, and special-occasion dining.
A mental health professional (psychologist, psychiatrist, social worker) can help you/your child and/or the family with stress, depression, anxiety, and other emotional challenges often associated with diabetes.
The school nurse or other school or day care personnel provide essential help in dealing with blood sugar testing, insulin therapy, and symptoms of blood sugar highs and lows.
As you assemble your team, keep in mind that your health care providers must be compassionate people who can communicate well with you/your child, and each other. Remember, it is your right–and responsibility–to receive clear answers to your questions and even to switch doctors if you are not satisfied with the care and service you are receiving.
Once you have a team, I encourage you to reach out to them as often as needed, even if you have to talk to them daily, to answer your questions. I promise you, things will get easier as you gain experience and confidence.
The Rest of the “Family”
Looking beyond your health care team, I cannot stress enough the importance of the invaluable emotional support and practical advice you can receive from other people.
Look for an adult relative, friend, or neighbor who is willing to listen, learn, and understand what it means to have diabetes in your lives. Any friend who learns enough to care for a child with diabetes is a friend to keep.
The same goes for your child’s friends. Once they learn that your child is the same person they knew who needs to be a kid and have fun, they can make such a difference. Sometimes children can be quicker than adults to learn the signs of low blood sugar and help a friend through it.
Teachers and day care providers are also part of the wider diabetes “family,” and they should be involved in your child’s management plan.
Find different people with diabetes whom you can admire. When my child was young, every time I met a new teen or young adult with diabetes, I felt a bit better about my child having it. Meeting happy, healthy people who have lived well with diabetes for a long time can be a great experience. There are many such examples in the public arena: professional entertainers, athletes, businessmen, and politicians.
Finally, and perhaps most critically, you will learn that parents or family members of people with diabetes have walked in your shoes, have most likely felt what you are feeling, and can become a tremendous source of information and inspiration. If the opportunity to meet other families is not available locally (have you tried your local JDRF chapter?), the JDRF Online Diabetes Support Team (ODST) volunteers can fill that gap.
In closing, let me say that I have great hope that researchers will cure diabetes during my child’s lifetime. They’re part of the family as well. Research progress is advancing at a much more rapid pace than when I started following it 20 years ago. Recent improvements resulting from scientific progress–types of insulin, delivery systems, pumps, meters, food labeling, and much more–make better management of diabetes more possible than ever before.
Putting these thoughts on paper has helped me get through this anniversary and acknowledge that there are reasons to “celebrate” it. I wish you all the best.
To locate a CDE in your area, talk to your doctor or contact the American Association of Diabetes Educators.