Unanswered questions become part of life when parenting a chronically ill child. When Kyleigh was diagnosed with diabetes, she quickly had the goal of getting an insulin pump to transition from insulin shots to the pump. At each endocrinology appointment, we would ask, ”When can Kyleigh transition to a pump?”.
Each time the response was the same, “I don’t know. Let’s just see how her blood sugars do.”.
There were criteria that needed to be met to transition to a pump, but an exact date and time that it would be safe to transition remained uncertain. Each unanswered question from Kyleigh’s doctor led to discomfort and disappointment and we could have easily given up asking or trying for the pump.
The future of our child regardless of their health issue is never in our control. Sometimes it is expected that questions are left unanswered. We ask questions such as “What’s the next treatment?” or “What happens if this class intervention doesn’t work?” or “When will we be able to sleep through the night?” and we don’t gain clarity because of the unpredictability of chronic illnesses. As parents, living with uncertainty is uncomfortable, but it is a necessary part of life.
The twists and turns of a child’s medical journey can sometimes be out of our control. We need to be cautious, though, that the known lack of control doesn’t turn into defeat. I was recently discussing a classic psychology study by Dr. Seligman in which dogs were put in different circumstances and given an electric shock. The group of dogs who inferred that they did not have control of the shock, gave up and didn’t try to escape. The conversation about this study reminded me that as parents, we, too, can experience this behavior of learned helplessness. I could have easily become one of Seligman’s dogs who gave up when things seemed out of my control.
Becoming defeated by uncertainty can destroy our confidence. The job of advocacy is an important task when we are parenting a child with chronic needs. Advocacy can only be successfully accomplished with confidence. If I allowed myself to be defeated by the unanswered timing of Kyleigh’s pump, I would have stopped asking and lost my confidence in advocating for Kyleigh in the physician’s office and in other areas like school accommodations.
We maintain self-confidence when we maintain awareness and acceptance. Since our emotions are created by our thoughts, the first step is awareness of the ideas leading to feeling defeated. Thoughts such as “That was a stupid question” or “I should have never asked because I knew the answer” need to be recognized so we can intentionally work on halting and changing our thinking.
Acceptance of an uncertain path forward also works to maintain our confidence. I didn’t know when Kyleigh would get a pump, but I knowing it would eventually happen gave me the confidence to continue to ask about it at each visit. Focusing on things that are in our control and accepting the uncertain things that we cannot control is the key to finding peace and confidence.
What are the unanswered questions about your child’s health that you need to accept?
