Issues of Control

Hard terrain for any human being to navigate: What am I in control of? What is the universe in control of?
Sandy, mother of Jack and Ben. Jack was diagnosed with the rare blood disease Kohlmeier-Degos and died 15 years ago at the age of 5 – only 9 months after his diagnosis, most of which was spent in the ICU. The experience was traumatic. Here Sandy shares that she thought she could control the outcome for her son, which took a toll on her well-being. “There’s just no way to know.”
1 / 13

Hard terrain for any human being to navigate: What am I in control of? What is the universe in control of?
The Role of Medical Orders: A Nurse and Mother Reflect (Vicki, Shaelyn and Katlyn)

Parenting a medically complex child: Letting go of the PUSH and the expectations.

How is this my life?

What if something happens to one of us, the healthy ones?

When people feel out of control, they respond differently.

The lack of diagnosis frustrates me. I’m a planner. For him, he couldn’t care less.

Everyone has their stuff.

Control is a huge factor at every level in the situation.

Caring for the child allows parents to feel pride and a sense of control.

I get control by being open about her situation.

Being with my baby makes me feel better.
