Raising the Goddess of Spring – Book Review
I can’t even begin to tell you how many times I’ve wish I had a “manual” 😆. Well, it finally arrived 🥳. “Raising the Goddess of Spring: A Guide for Raising Children with Rare Chromosome Disorders” by Stephanie Rese is full of knowledge and helpful information. Stephanie is the founder of Chromsome 22 Central – a nonprofit run by parents that represents and supports rare chromosome 22 disorders. Her daugher Maia is almost 26 and she has the same rare chromsome disorder as Joaquin, Emanuel Syndrome.
In my opinion, Stephanie is the definition of #AdvocateLikeAMother 👏🏼
What You’ll Find
This book covers everything from pregnancy to facing the unthinkable (yup, she goes there). It has chapters on understanding chromosomes by Dr. Melissa Carter. Sections on education planning by Murney Rinholm – teacher and mother to a (now adult) child with a rare chromosome disorder. You’ll also find chapters on advocacy, dealing with trauma, self care, and friendships. I will say one of my favorite things I found in this book were the parent perspectives and words shared by siblings.
Reading this book I not only gained knowledge but I cried, I smiled, I felt seen, and I felt validated in my struggles and feelings. I also felt empowered and let’s face it, some days that’s really difficult when you’re facing such an uphill battle.
Raising the Goddess of Spring is so all encompassing that I skipped over some chapters (uhm, no thank you “Reproductive Considerations” we are all done with that 😂). There are also some chapters I’m not quite ready for. I see you – “Looking to the Future” & “Facing the Unthinkable”. I know they’re there and I know that when I’m ready I’ll read them…just not right now.
If you are a parent, caregiver, or adult sibling of an individual with a rare chromosome disorder this a must read – find it on Amazon (affiliate link).