We all have many hats that we wear in our lives– parent, partner, colleague, community member etc. For me, two of my most important roles are that of being a mother and a Diabetes Educator. The fact that my son has type 1 diabetes means that these roles intersect and overlap on a regular basis.
I often wonder how my job affects the way I parent and vice versa, and I often ask myself; is all this overlap a good thing?
As a diabetes educator, learning about and working with the latest diabetes management technologies and insulin therapy options are part of my daily routine. This gives me the opportunity to get detailed information about different diabetes self-management tools and regimens and make assessments about which ones fit well with my son’s diabetes management.
The “Holy Grail”
When I first started my career as a diabetes educator, I found myself thinking that I could outsmart this disease. If I learned enough, incorporated the latest tools, managed things closely – I could achieve “target” blood sugars for my son and protect him from any potential complications. As I got further in my diabetes education, I came to truly understand why achieving the holy grail of blood sugar management, the “perfect blood sugar”, with today’s treatment options just was not realistic.
The pancreas is an amazing organ and able to seamlessly manage the 28+ factors that influence our blood sugar levels. To say that being the pancreas for your child from the outside-in is hard would be the understatement of the century. Not only is it hard, but it is near impossible to do it perfectly.
So while I know that keeping blood sugars in the target range for the majority of the time will protect my son from diabetes complications, I now use my knowledge as a diabetes educator to inform my decisions and expectations about realistic diabetes management goals for a nine-year-old boy. For instance, changing the lancet every time he checks his blood sugar isn’t one of them. Never having blood sugars spike above 200 isn’t one of them.
Turning Emotions into Manageable Data
I’ve learned to emotionally distance myself from individual blood sugar readings and look at them as data points with patterns and trends that I can use as a basis to make adjustments to pump settings, timing of insulin or food choices.
Experiencing the day-to-day challenges and frustrations of diabetes management allows me to connect with my patients from a place of “knowing what it’s like”. I believe the fact that I really do know how hard DM can be helps me form a partnership with my patients to reach their DM health goals. This feels way different than just looking at the numbers or policing their food intake.
But there’s another side to wearing the two hats of mother and diabetes educator. As an educator working on the endocrinology unit at a children’s hospital in a major city, I’ve seen and worked with kids in intensive care due to Diabetes Ketoacidosis (DKA). Sadly, many of them I see time and time again. I’ve had to see firsthand the devastating impact of severe hypoglycemic events.
Even when we’re in a “smooth” diabetes period at home (proving that everything in life is relative), working in the hospital reminds me how quickly things can go wrong with diabetes management. I know that most kids living with type 1 diabetes are happy, thriving and living life exactly as they were meant to live it. But logic doesn’t always win – the reality is, every time I work with a child struggling with life with diabetes I can’t help but worry about my son and experience a moment of grief that he has to rise to face this challenge every single day – no exceptions, no vacations.
It’s All About Community
Whether I was a CDE or not, I believe I would be actively involved with the diabetes community. Being part of the community is a great source of emotional strength. There is so much to be gained from the resilience and energy of others and the knowledge that you’re not in this alone.
I feel that staying connected with other type 1 parents (who aren’t CDEs) helps me stay grounded first and foremost in being the best parent I can be for my kids – with and without diabetes. No one knows your child like you do and learning to trust your instincts – even when it comes to diabetes management decisions – is critical.
There is no single perfect way to do diabetes management. The best gift you can give your child with diabetes is to become their advocate in finding the diabetes management plan that best fits their life and not to make them slaves to the latest study of best practices of diabetes management.
Studies may show that overall, people wearing insulin pumps have better blood sugar control than those who use multiple daily injections but if it’s bathing suit season and you have a teenage daughter – you may find that wearing an insulin pump that sits in the pool bag all day isn’t the way to go. Kids first – diabetes second.
Life with diabetes is a marathon – not a single three-month A1c test. Let your kids make choices where you can and push your diabetes health care team to provide you with options so you can make decisions that will allow your kid to continue to pursue what’s important to them while managing their blood sugars.
As a mom, I can imagine a conversation some years in the future where my son tells me that he and his wife have discussed it and they feel it’s inappropriate for me to continue to come over to change his infusion sets. As a diabetes educator, I know that my ultimate goal is to equip him, and my patients, with the best self-management skills and the confidence to become their own health advocates.
At the end of the day, it’s a tremendous honor and responsibility to wear these hats and I’m grateful to have the benefit of dedicated experts, patients and parents to help me on my journey to improve the lives of people living with diabetes.
Diane Herbert MSS, LSW
Cecelia Health Clinical Manager