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.](https://i.ytimg.com/vi/S4VyjD_1Avc/maxresdefault.jpg)
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.
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Our Pediatrician provided stability.
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We were actively protecting her from things that wouldn’t be right for her.
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We are learning to be patient, rebuilding slowly.
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The Diagnostic Odyssey: It never occurred to me that it would be fatal.
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Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life
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We felt we better step up and show her that she picked the right parents.
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Most of my attention went to my daughter, not my granddaughter.
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I couldn't imagine how much pain Sarah was in. I could only go along with it.
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Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.
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The therapist helped us process and translate our actions and feelings.
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Finding Hope
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Our pediatrician was the key that held everything together for us.
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I put my heart at rest that they don't have any regrets
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Three bereaved moms share how they view the spiritual connection between their children.
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The hospital where I had my second daughter was the same hospital where Emerson died
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“I would go to appointments and I really wanted them to acknowledge that my first daughter had died.”
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“Do you want to have more kids?”
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The baby, and doing things again, highlights the missing piece.
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For others, talking about Emerson's life was now okay because there was a happy ending.
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We waited a few months, and decided we wanted to try to have another child.
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Enzyme Replacement Therapy helped our daughter be more comfortable.
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My concern was for them as a couple.
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I did the little things that I could do, like watch Emerson so they could have a date.
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I would keep it together until I talked to Mom. Then I'd fall apart.
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I spoiled my granddaughter.
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"When she was alive, we invited people in. We are learning how to help people connect with us again."
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I think the hardest part is after she's gone.
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Grandmother: I'm inspired by them, very proud.
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The doctor explained: not doing a feeding tube isn’t same as letting your child be hungry.
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"Now I can have the long view towards finding a treatment or cure."
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A Mother's Testimonial: How Courageous Parents Network helped a family do the unimaginable.
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The doctor was very gentle and also clear that there was no treatment at this time.
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We came to the realization that this is the path we’re walking and there is nothing to be done about that.
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"Now I have deep conversations about the burdens people carry."
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