Sarah and Steve
Sarah and Steve, parents of Emerson, who died at age 16 months from Gaucher Type 2.
We were actively protecting her from things that wouldn’t be right for her.
The mother of an infant shares how electing NOT to choose medical interventions at first felt like she wasn’t actively caring for her child and how palliative care helped her understand that ‘doing things’ wasn’t necessarily protecting or helping her daughter. Reframing to see that sometimes less is more.
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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."
