The Support of Other Parents
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Finding support and the limits of disease-specific support groups.
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.
Navigating peer support groups.
Connecting with the PMG in the early days post diagnosis: Take some, leave some
Finding support from an older couple – different diagnosis but commonalities-- that took us under their wing
Watching videos helps put words to things.
Finding most of my support from other cardiac parents who already get it.
Helping parents like us connect with fellow parents helps us feel less isolated.
Twin brothers, two children with Tay-Sachs: Considering care decisions together.
Going to the affected families conference: "I needed my mom nearby."
Finding Support: My brother can help me get through this.
One day you are going to be that person for someone else.
Finding Support: "Other parents showed me that there was hope."
A Mother's Testimonial: How Courageous Parents Network helped a family do the unimaginable.
Parents like us, we're all on this island of misfit toys
I trust parents more than professionals when it's the home life
When you start talking, they start sharing.
Try a group. There is something cathartic about grieving with other people.
Chaplain: I encourage parents to connect with other parents.
We put our heart out there and they shared it back with us.
Reach out to other families, they’re on the front line every day.
Can we help you:
Related
From our Blog:
- 8 Tips on How (and How Not) to Just Show Up for Families of Children Living with a Serious Illness
- The Lost Shoe
- Finding My Extraordinary People
- Public Service Announcement
- The Miracle at the Mirror
- Beyond 'Love'? Please help me find the words.
- I Belong to A Club
- After Diagnosis – Gaining More ‘Family'
- Words, Stories and What Courageous Parents have to Say to the Rest of Us.
- What Parent to Parent Looks Like
- The Little Green Dress
- No Man’s Land