Grandparents / Extended Family

Delivering the diagnosis to her mother: “I wanted to control the blast because I was the epicenter.”
Carla, mother of Nathan, Audrey, and Talia (died at 23 months from infantile Tay-Sachs) and her mother Robin remember how Carla delivered the news and Carla’s wanting to protect her parents from such sadness.
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Delivering the diagnosis to her mother: “I wanted to control the blast because I was the epicenter.”

A grandmother on her daughter: “She said, ‘don’t cry in front of me, ever.”

My mother: "The biggest support she gave me was tracking me from afar."

“I was just a grandmother.”

Going to the affected families conference: "I needed my mom nearby."

“I learned you can’t take care of the future by planning.”

Mom to Grandma “I remember us talking about how you were stronger than I was giving you credit for.”

"I think we all work best when we don’t expect each other to change the core of who we are.”

A mom - "My mom initiated conversations about plans for arrangements after the death."

Mom and Grandmother: My mom had no opinion on my daughter’s medical care.

The other grandparents – “We were shared equals.”

Writing to process for both mom and grandmother: Observing the experience; Preserving the memories

Bringing my sister up to speed.

I couldn't imagine how much pain Sarah was in. I could only go along with it.

Most of my attention went to my daughter, not my granddaughter.

My concern was for them as a couple.

I did the little things that I could do, like watch Emerson so they could have a date.

I would keep it together until I talked to Mom. Then I'd fall apart.

I spoiled my granddaughter.

I think the hardest part is after she's gone.

I put my heart at rest that they don't have any regrets

Grandmother: I'm inspired by them, very proud.
- The Beginning
- Advocating for Your Child
- Understanding Interventions
- Coping, Family and Relationships
- End of Life and Bereavement
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