Hi, my son was born with Costello Syndrome. It's an extremely rare genetic disease that will likely result in health complications throughout his life and potential cognitive disabilities. My wife and I are obviously devastated, but we are doing our best to survive this nightmare.
I'm wondering if there are any books that you would suggest I read. I'm open to philosophy or stories that have helped others through traumatic periods like this. I'm not sure what other guidance I can give, but hopefully that gives you enough to suggest some books. Thank you
by dragunight
4 Comments
Please remember in the midst of caring for him to care for one another.
Patricia Locksmith’s novel _No One is Talking about This_ is a weird, gorgeous narrative based on the short life of her infant niece, the child’s extensive congenital impairments, and how deeply this little girl’s family cherished her and found meaning in her presence. That writing is (hear me out) interlaced with all these snippets of unnervingly memorable moments from the internet, descriptions of memes, response GIFS, and other odd viral ephemera. The work is not sentimental or pandering. Its prose is clear-eyed, and acute; Lockwood’s first published books were volumes of poetry. If you would like to read a text centered on a family undergoing challenges surrounding a beloved, medically fragile child continually punctuated by fragments of popular internet lore, this could be a good choice.
Karen by Marie Killilea.
A memoir about the life of her daughter, who was born with cerebral palsy at a time when it wasn’t taught in medical school and a doctor literally told them they should leave the baby on a mountainside. They fought for care, founded the first cerebral palsy association, and also lived a normal and chaotic life full of insane pets and kids doing dumb and hilarious stuff. The family is quite religious, but as a heathen, I really enjoyed the book. Might make you feel less alone and remind you to not be so worried about health stuff that you neglect to make nornal parenting mistakes like getting too many pet rabbits. The parents also have a lovely relationship and balance to make time for all their kids and their social life
The Reality Slap: finding peace and fulfillment when life hurts, by Russ Harris. There are very few self help books out there that are truly helpful, and this is one of them.
A self-help book that uses Acceptance and Commitment Therapy (ACT) to help readers cope with major life setbacks like loss, illness, or divorce. It provides practical strategies, exercises, and real-life stories to help people manage painful emotions, find inner peace, and build a more meaningful life by accepting what they can’t change and taking courageous action towards their values.