Grandparents/Extended Family

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

A grandmother of a little girl who died from Gaucher Type 2 acknowledges that she could never fully know her daughter's pain. Her daughter, the little girl's mother, talks about how her mother's strength helped her get through. "We felt taken care of."

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

A grandmother of a little girl with Gaucher Type 2 shares how she experienced the deep sadness and found her role in supporting the family: supporting her daughter and son-and-law but not trying to manage everything.

My concern was for them as a couple.

The grandmother of a little girl with Gaucher Type 2 talks about how her biggest concern was for her daughter and her daughter's husband to stay together and be OK as a couple. She also shares how unnatural it was to say, "My daughter's daughter is dying," and not be able to do anything but support her daughter.

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

A grandmother of a little girl with Gaucher Type 2 shares the ways she found to be helpful without being too involved (aka bossy!) or being able to actually fix the disease. The mother talks about how helpful her mother was with her daughter. "She had a real connection with you."

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

The mother of a little girl with Gaucher Type 2 talks about how she  would only fall apart when she talked to her mother -- where she could be most vulnerable. "You were always the first person I wanted to talk to but the person I couldn't talk to if I needed to keep it together"

I spoiled my granddaughter.

The grandmother and mother of a little girl with Gaucher Type 2 laugh at how even during Emerson's short life, she still got to be spoiled by her grandmother.

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

The Grandmother of a little girl who died from Gaucher Type 2 shares how challenging it has been to miss her as much as they have and how family wants to help but doesn't know how.

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

A grandmother finds peace after her granddaughter's death in the fact that her daughter and son-in-law have no regrets about the decisions they made for their daughter and the life they gave her.

I'm inspired by them. I'm very proud of them.

A grandmother of a little girl who died from Gaucher Type 2 talks about her pride in her daughter and son-in-law after their daughter's death. "They're capable. They get up in the morning."

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

I'm inspired by them. I'm very proud of them.