Having a child with a disability or rare disease can be a lonely experience, often in ways that parents never anticipated. Their lives have changed dramatically and the relationships they used to rely on might feel suddenly distant.
Family and friends may want to reach out, but they don’t always know how to offer the support that is most helpful for parents. Their “encouraging” comments sometimes miss the mark and can cause even more heartache for the parents they are trying to help. Or, they might be so at a loss for how to offer support that they just stay away altogether.
It’s easy to find lists of things not to say and not to do for parents caring for children with rare diseases, but what about the ways that family and friends CAN offer support?
In this solo episode, Madeline shares suggestions from listeners about the kind of support they want from those close to them as they care for their children with disabilities. Parents of children with medical complexities need —and want— their people to stay in their lives, and these tips can help strengthen these relationships.
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A big, big thank you to everyone who contributed thoughts and suggestions to this episode:
Kenya Davis @sunflowers_sea
Catherine Hoffman @cathsheahoff
Grace Bongiovanni @grace.bongiovanni
Huang Hsin @becky812
Maddison Ward @maddisonjward
Michel-Anne Bridges @mrs.mabridges
Jenna @donotfeedwildlife
Shannon Read @mrs_read_15
Jill Jones @jilllatimer294
@jenangarita
Siobhan and Jamie @jamies_gdd_diary
Victoria Shaver @vicgs
Kate McGregor @kate_mcgregor_
Kate Rolfes @kate.rolfes
Krystal Hatch @mrs_katch
@linavilela
Sarah Harris @sarah_harris_insta
Katie Peterson @katiebpeterson
Chloe @chloerose1127
Marci Dunning @freyasluckyarm
Libby @libby.shidel
Karissa Taylor @the_advocating_mom
@jenangarita
Hailey @Growing_juniper
Rachael Carlucci @rachaelmcarlucci
Julianna Morasse @howlinghive
Kari Harbath @Kariandsloan
Tricia @triciajeanb
Ashley Garrison @ash.garrison