Control

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

Pediatric psychologist and grief counselor Nancy Frumer Styron talks about how parents of a child with a life-limiting illness feel out of control all the time, and suggests strategies for finding a helpful sense of control.

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

A pediatric palliative care social worker notes that caregiving can provide parents with a sense of control during a journey that feels very much out of control, and that it can provide them with a sense of parental pride they will have always.

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

A mom of a son with multiple progressive disorders talks about while she has spent years imagining the death of her son, she worries that something she hasn’t imagined will happen to one of the other members of the family, and how she can’t control any of it.

How is this my life?

A mom talks matter-of-factly about how her son's diagnosis with cancer changed everything for her life, her day-to-day. "Whether it's a good day or bad day, you just have to deal with it"

I get control by being open about her situation.

A mom of a daughter with Trisomy 18 talks about trying to get control by being open about her daughter's condition and not having fear.

Being with my baby makes me feel better.

A mom of a daughter with Trisomy 18 talks about how she holds her baby whenever she feels like it, even if she has to wake her up.

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.

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

How is this my life?

I get control by being open about her situation.

Being with my baby makes me feel better.