I started writing on a whim. After hearing so many times, “You should really write a book”, and “You’re such a good writer”, I took the plunge. Ben had one hell of a winter, I was processing a lot of our past that I had never worked through, mostly because in the moment, we were simply surviving. When life brought us full circle to a point where we believed Ben was in the diagnostic process for a life-limiting disease (which wound up being a med reaction, something that I still cannot believe), the need to get the history written out was the catalyst for me to literally sit down and write nearly 50,000 words on my tablet. In the throes of something bigger than myself I threw the words onto the page with a fervor that sometimes alarmed me.
The rough draft has been done for a few months, and I have intentionally let it sit. It needs ever so much work, but it also needs to ripen in order for me to be able to jump back in and take the story from a literal history to a compelling work with a breathtaking poignancy as I walk you through the many heartbreaking and triumphant episodes of Ben’s 10 years of life, to today, where I have a little boy who has prevailed over many diseases and limitations, but not unscathed. Each episode has left its mark, and changed not only Ben, but our whole family as together we survived not only Ben’s life-threatening and rare diagnoses, but also many other rabbit trails as each other family member has faced down our own battles.
I am so excited and so terrified of this book. I want so badly for the world to see Ben as I do, to be his voice, and for people to marvel over this small wonder whose life I have played a supporting role in. I have already been declined by a publisher who told me that “Down syndrome memoirs just don’t do that well for them”, even after I tried to establish how very different Ben’s story is from the plethora of other “Down syndrome memoirs” out there.
So I took a deep breath and engaged with another publisher, and we shall see where that goes.
I know that rejection is a part of the writing experience, and I am taking this whole bit one step at a time, trying not to get ahead of myself. And so I wait, with the next step either being getting an offer from a publisher, or regrouping and using the next few months to rework the book and continue to seek out the right fit for publication.
But I believe in this book, I believe in this story, I believe that this will come to fruition, that a venue will open, and “Hope Deferred” will go from a dream to reality, and just like I have navigated all of the tricky paths that have come our way, I will navigate my way to the fruition of this story.