Five years ago, I was expecting my daughter, Moxie.
Having had an amnio, I knew she was coming with Down syndrome. I suppose my background in disability should have made it easier, same goes for my being deaf and having TBI, PTSD… but it didn’t.
I locked myself up everyday in my offices either at work or at home, and spent countless hours scouring the internet in hope of finding information that would point to a life that would not be bad, either for our daughter or for ourselves.
I wanted pictures. I wanted stories that I could connect with. I wanted groups. I wanted mentors. I wanted friends who understood.
Now you are here, and if you are here because you googled “Down syndrome” or “expecting a child with Down syndrome”, I want you to find what you need.
Here are some links that will hopefully help.
My free e-book –
“4 Years” is a collection of essays from this blog, covering Moxie’s diagnosis, what to say to me (when you hear I have a child with Down syndrome), fear, the choice to suffer, the choice to keep a child, learning to run, speaking, abuse, breastfeeding, “more alike than different”, siblings, learning to have courage and more.
142 pages with lots of photos and artwork by me.
e-book from i-tunes (this is the nicer format but it can only be read using an i-device)
pdf version (can be read anywhere, on any device)
Expecting the Unexpected: stories from families, broken down by category (free pdf book)
Down syndrome Pregnancy: if parents could say something to themselves when they received the news… (short stories on the website)
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives
(actual book compilations of stories purchased through Amazon or elsewhere)
Very Useful Sites:
Down syndrome Blogs – blogs by sub-category
A Day in the Life with Down syndrome – read about a day lived in a life with Down syndrome. A community space, posts from a wide variety of families and individuals.
You are not alone. Please contact me if I can help in any way.