Sarah and Steve
Sarah and Steve, parents of Emerson, who died at age 16 months from Gaucher Type 2.
Watching videos helps put words to things.
A father talks about how watching CPN videos of other parents sharing their feelings helped him put words to his own.
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Watching videos helps put words to things.
Our Pediatrician provided stability.
We were actively protecting her from things that wouldn’t be right for her.
We are learning to be patient, rebuilding slowly.
The Diagnostic Odyssey: It never occurred to me that it would be fatal.
Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life
We felt we better step up and show her that she picked the right parents.
Most of my attention went to my daughter, not my granddaughter.
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.
Finding Hope
Our pediatrician was the key that held everything together for us.
I put my heart at rest that they don't have any regrets
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.”
“Do you want to have more kids?”
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.
We waited a few months, and decided we wanted to try to have another child.
Enzyme Replacement Therapy helped our daughter be more comfortable.
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.
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.
"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."