Seven years ago, new Detroit Mum Jamie Freeman wrote a personal message into a pristine leather-bound diary. Simply wanting to correspond with other parents with a child with Down's syndrome, she had no idea who would read her words about her beautiful son Benny, or the hands that would write within the book as it travelled through 26 families and across four countries and two continents.
She certainly didn't know that she would later publish The Down Syndrome Diary in a beautiful coffee table format for others to read, pulling its stories together closely, just as she would draw the contributors in, becoming an online family.
"Thank you, whoever you are,
wherever you are, for your words..."
|Jamie wrote her story into a beautiful book she would send out into the world. You can read her blog Ben Through it All here.|
One Big Family
As Jamie posted off her heartfelt words to a close friend, Tara of Happy Soul Project, she had no idea of the destiny of the diary.
Would it be safe?
Where would it travel?
Would it even make it make home in one piece?
What stories would it gather and who would hold it in their hands?
The diary may have started as a way for Jamie to reach out to others, but the importance it would come to have quickly became apparent as one family passed it to the next, sometimes choosing the next recipient themselves, sometimes bloggers putting their names forward as word got out of this exciting project.
The stories were told and shared in time honoured tradition, each family handwriting their tales for the next and adding photographs and mementos. There were even tear stains and a splash of red wine. It was real and emotional.
Watch Jamie tell the story behind the The Down Syndrome Diary here.
Special and Unique
What was clear was just how important the book was to each family who became its custodian. And just how much of a responsibility came with writing within is covers. Everyone knew that their words could potentially make a difference to others and so filled it with love and messages of hope.
When the parcel containing the diary arrived at my door four years ago, I felt a huge sense of relief that it was safe. But an equally large sense of responsibility for taking care of it and scribbling something of note on those waiting pages. It came complete with gifts from the previous contributor, Oliver Hellowell, photographer with Down's syndrome, and his family.
I looked at it from afar for a few days, almost afraid to damage it in some way. Then set about reading the stories of the families before me, my mouth dry and my heart beating faster. I wondered what I could possibly add...
|Mia, Natty and I wrote in The Down Syndrome Diary|
It immediately became apparent that that task was going to be difficult. because for as much as each of us come from different backgrounds and our experiences of parenting are as different as our children are unique, I was struck by the fact that everything I had to say about Natty's journey had already been said.
Those pages were already filled with love, shock, worry, with ground-breaking firsts in the shape of books written, actors and painters and charities started. Others had shared their fears during their child's heart surgery, the closeness of siblings and everything in between.
|A few of the Down Syndrome Diary contributors meeting across the time zones via Zoom|
And I realised in a heart beat that the extra chromosome had sewn our families together, despite our different backgrounds.
We were all in that special members' club we didn't initially want to join, but where we found all the kindest, warmest, funniest souls. None of us have ever looked back.
Mia, Natty and I added snippets of wisdom, our experiences and cut up one of our I Love You Natty books to stick in as a visual record. Our chapter is a moment in time, now preserved forever in print.
|The Downs Side Up entry in The Down Syndrome Diary|
Passing Experience Forward
Finally, the book is about to be published in a stunning full colour coffee table format! The voices of seasoned parents who have beaten a clear path for those of us behind, as well as new parents' thoughts mix beautifully together. I can't believe that we will finally be able to hold a printed copy in our hands and that others who do the same will also feel its power and influence in their hearts.
Thank you Jamie for your vision and support, and for bringing all our words together, whoever and wherever we are.
priced $50 US or via kindle at $9.99
all profits go towards supplying complimentary copies to new parents, so your purchase will help other families.