The Support of Other Parents
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Finding support and the limits of disease-specific support groups.
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There was a lot of veiled language around these decisions. What does ‘goals’ even mean? We had to find other parents to get a sense of what to expect.
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Navigating peer support groups.
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Connecting with the PMG in the early days post diagnosis: Take some, leave some
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Finding support from an older couple – different diagnosis but commonalities-- that took us under their wing
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Watching videos helps put words to things.
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Finding most of my support from other cardiac parents who already get it.
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Helping parents like us connect with fellow parents helps us feel less isolated.
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Twin brothers, two children with Tay-Sachs: Considering care decisions together.
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Going to the affected families conference: "I needed my mom nearby."
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Finding Support: My brother can help me get through this.
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One day you are going to be that person for someone else.
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Finding Support: "Other parents showed me that there was hope."
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A Mother's Testimonial: How Courageous Parents Network helped a family do the unimaginable.
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Parents like us, we're all on this island of misfit toys
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I trust parents more than professionals when it's the home life
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When you start talking, they start sharing.
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Try a group. There is something cathartic about grieving with other people.
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Chaplain: I encourage parents to connect with other parents.
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We put our heart out there and they shared it back with us.
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Reach out to other families, they’re on the front line every day.
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- Words, Stories and What Courageous Parents have to Say to the Rest of Us.
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