Sarah and Steve
Sarah and Steve, parents of Emerson, who died at age 16 months from Gaucher Type 2.

Three bereaved moms share how they view the spiritual connection between their children.
Three bereaved moms share their beliefs about the connection between their children who have passed and their children who follow. They talk about the beauty of the signs they have been given, the intersection between life and death, and seeing beyond what happens on earth.
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Three bereaved moms share how they view the spiritual connection between their children.

The hospital where I had my second daughter was the same hospital where Emerson died

“I would go to appointments and I really wanted them to acknowledge that my first daughter had died.”

The baby, and doing things again, highlights the missing piece.

For others, talking about Emerson's life was now okay because there was a happy ending.

“Do you want to have more kids?”

We waited a few months, and decided we wanted to try to have another child.

We were actively protecting her from things that wouldn’t be right for her.

We are learning to be patient, rebuilding slowly.

Finding Hope

The Diagnostic Odyssey: It never occurred to me that it would be fatal.

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

Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.

The therapist helped us process and translate our actions and feelings.

We felt we better step up and show her that she picked the right parents.

Our pediatrician was the key that held everything together for us.

Our Pediatrician provided stability.

Watching videos helps put words to things.

Enzyme Replacement Therapy helped our daughter be more comfortable.

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.

"When she was alive, we invited people in. We are learning how to help people connect with us again."

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 doctor explained: not doing a feeding tube isn’t same as letting your child be hungry.

Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life

"Now I can have the long view towards finding a treatment or cure."

A Mother's Testimonial: How Courageous Parents Network helped a family do the unimaginable.

The doctor was very gentle and also clear that there was no treatment at this time.

We came to the realization that this is the path we’re walking and there is nothing to be done about that.

"Now I have deep conversations about the burdens people carry."
