Identity as a Parent

Sanfilippo /MPS: The dreaded question. How many children do you have?

“I don’t always answer the question the same way.” The mother of two children, one who died from Sanfilippo at age 13, speaks candidly about how she answers this question and how she and her husband can differ.

Everyone has their stuff.

A mom talks about how normal it is that she should care for her child who is so medically complicated and is dying. "For me it became our new normal." She shares that it also takes a toll and how she's tired, irritable, and isn't yet the changed, patient parent that people think she must be.

She’s made me proud.

A mom talks about how caring for her daughter so intensively has changed her as a mother in ways that make her proud: I became a greater mother after her diagnosis.

I’m most proud …

A recently bereaved mother and father reflect upon the various ways in which they grew as they kept the family together and cared for and advocated for their son.

I’m proud of keeping it positive.

A mom of a son with multiple progressive disorders (now age 18) talks about her pride in staying positive for her family and that her family is still together.

I’ve learned …

Parents of a son with multiple progressive disorders, who is now 18, talk about what they’ve learned about themselves over the years in caring for their son and keeping it together through the very difficult times. The mom shares how she has come to embrace the world that she has gotten to know.

It’s another sort of loss.

Grief counselor Nancy Frumer Styron talks about the complex number of roles a parent takes on as they care for a child with a life-limiting illness, And how the roles change again when the child dies: for parents who have no other surviving children, "Am I still a parent?" "Now I am a bereaved parent -- a club no one wants to belong to." A bereaved mom talks about her identity after her son's death and about how that identity is forever changed.

Sanfilippo /MPS: The dreaded question. How many children do you have?

Everyone has their stuff.

She’s made me proud.

I’m most proud …

I’m proud of keeping it positive.

I’ve learned …

It’s another sort of loss.