Dear Parents of Children with Down Syndrome...

I've always known I'd write a book about Jacob. 

I knew it the moment he was diagnosed with his disability.

I knew it before I knew I'd become a writer.

His story needed to be told.

This year is the year I will put this knowledge to action.  And, in true Allred fashion, I'm going overboard. 

I'm writing not one book (as blogged about before), but two. And I'm outlining a third book. This is in addition to the four nonfiction books about growing up in a family of ten that I'm re-releasing on Amazon, the six-book YA thriller series I'm self-publishing, 2 anthologies I'm participating in, and a YA urban fantasy I hope to pitch to a traditional publisher in June.

Am I insane?

Probably. Yes.

I've been putting off my "Jacob" books for years, telling myself I'd find time later.  But in light of all the abortions based off a Trisomy 21 diagnosis, and some countries even trying to eradicate Down syndrome completely, I can't put it off any longer. These books must be written NOW.

With that being said, I'm putting a call out to any and all parents of children who have Down syndrome.  I'd also like a select few people who don't have kiddos with Down syndrome but are closely affiliated with them - Special Education teachers, brothers and sisters, aunts and uncles, doctors and nurses, therapists, etc.  I'm looking for letters.

Why?

Because when Jacob was diagnosed, I was inundated with condolences. "I'm so sorry." "I don't know what to say." "What are you going to do?" Sometimes silence and shock.

Where were the congratulations and squeals of excitement I got with my other three children?

I aim to fix that with this book. This will not be a book filled with, "I was horrified and then I learned to love my baby."

This book will be, "Congratulations on having a new baby!  Your life is about to embark on a new adventure. And it will be amazing!"

 Am I going to candy-coat everything? Nope. But my emphasis will be on looking at the good rather than obsessing over the possibility of bad.  Embracing the similarities rather than freaking out about the differences.

If you're interested in being a part of this letter, I want to hear from you!!!

Early Christmas Presents

Today I picked Jacob up from school and his teacher met me at the sidewalk with three bags in her hands. "These are his Christmas gifts.  One was a donation from a nearby church. The other two..." she shook her head apologetically. "He chose them. I swear!" She shrugged and rolled her eyes. 

I thanked her profusely for the gifts, and ushered my kids back to the car, thinking nothing more of the comment.

When we got home, Jake snatched the gift with his name on it and ripped it open before I could get it under the tree.  Nerf guns and candy.  No wonder he was excited! 

I peeked inside and furrowed my brows before pulling out a leather day-planner from one bag, and a hand-made tissue holder in the other.  I looked at my daughter, and she looked back at me, equally puzzled. 

Jacob stopped playing commando with his Nerf gun and walked over to me, took the day-planner,  and nudged it toward my chest, indicating it was for me.  Then he did the same with the tissue holder.  He smiled briefly before returning to his Nerf gun and taking off toward the cat making shooting noises.

I stared after him, then at the gifts. He picked those gifts out for me? 

My heart swelled as I thought back over the last four weeks of sneezing and runny noses because of my allergies to our new cat.  He'd often brought me tissue whenever I sneezed. Had he thought of me when he saw the tissue container at school?

But the day-planner? Maybe he saw the two calendars I have on the wall next to my desk or the shelf of tabbed folders for each project I'm working on. Or maybe he just associated it with books because I have hundreds of them in my bookshelf, along with binders for my mystery game business, novels I'm editing, or half-written novels I'm writing.

I don't know what was going through Jacob's mind when he chose those two gifts. But he was clearly thinking of me. 

For the briefest of moments, I realized there is much more going on in that little mind of his than I give him credit for.  Though he may still be non-verbal, he is very aware of us. Of me. Of his family, and all those he loves and cares about. 

As he drifted off to sleep tonight, I hugged him extra tight and thanked him for his gifts.  He held up his hand, dropped the middle two fingers, and signed "I love you" before rolling over and closing his eyes.

This year, I got the most amazing early Christmas gift: Hope.

So I've Started a Thing...

A few weeks ago, I went to a writer's conference.  It's the third or fourth time I've been there, and this year I was on the conference committee, so I knew what to expect.  Plus, I went with two sisters, so we were excited

A few days prior to the conference, one sister mentioned she'd signed up for a pitch session (to pitch a book she was working on to a publisher or editor), but her book wasn't ready. She'd already paid the money to pitch, and would I like to pitch in her place.

"Uhhh. Sure." I said as my mind raced about a million miles a second.  The person she planned to pitch wasn't in my usual genre (contemporary and speculative YA). This person preferred non-fiction, religious, and sweet romances. 

But I did have a non-fiction story I'd considered writing for the past seven years.  I even had a name picked out and a writing partner who would co-author with me. I'd already gone so far as to submit my first 500 words to a Beginning of Book Contest at the conference. Just for kicks.

Where most novels need to be written and polished before you pitch the book, non-fictions usually require the first three chapters and a proposal.  If someone wished to publish, then you'd write the book to the publisher's specifications.

Could I pitch a theoretical book I hadn't completed, or even written a proposal for? Sure. What could possibly go wrong?

I should have asked: What can go write? (pun intended). 

I sat down for my pitch surprisingly calm for a person who had no idea what she was going to say. My pitch went something similar to this:

From the day I found out my unborn child was going to have Down syndrome, nearly every person who found out apologized and gave me condolences.  My doctor was required to tell me about abortion options. My mother was speechless.  Everyone treated me as if having a child with Down syndrome was some horrible tragedy.

However, I knew having someone with Ds was the gold standard in disabilities.  I knew he'd enrich our lives, and bring joy to our home.  He would be a blessing.  My doctor gave me books, and I bought books.  All of them were the same.  Nearly every story talked of how the parents were shocked and devastated, but then learned to love their child.  I threw the second book I read against a wall and refused to finish it.  It listed all the things that could go wrong with my baby, and nothing that could go right.  Nobody bothered to point out that every child--whether typically developing or having Down syndrome--has a spectrum of abilities.  Every child has risks. 

Now, other countries actively work to completely eradicate Down syndrome from their society through abortion and other means, as if it's some disease or curse.  Drug companies hope to "cure" us of Down syndrome. 

If everyone treats Down syndrome as a trial, a challenge, or an "issue" to be dealt with, of COURSE the general public will treat it with trepidation and fear.  But Down syndrome is none of these. 

Any and all growth requires being uncomfortable - physically, socially, or emotionally.  When you work out, don't your muscles hurt? When you go to school, don't you have to study? When you strive to better your craft, don't you have to learn, fail, and learn some more?

My story will be my declaration that having a child with Down syndrome is not a bad thing. It is something to be celebrated and excited for.  I don't want anyone to offer condolences for having my child.  There is nothing to fear. Nothing to apologize for.  And so so much to be excited about.

I want to write a new book that defines Down syndrome. And that book will be named, "Take your Condolences and Shove it." It will celebrate Down syndrome and all the good having a child with Down syndrome brings to lives, families, and communities.

Needless to say, she wants to see it. All of it.  Not the typical three chapters usually requested.  She wants me to write the whole book and then submit it to her. She doesn't care how long it takes. She will wait.

So, as I write my book, I'll be blogging more often, keeping you updated on where things go with the book.  And I hope to introduce you to my two co-authors (Wahoo! Three moms with three perspectives on raising children with Trisomy 21!).

If you have ideas on things I can include, or comments you'd like to be included in my book, please post them below! I'd love to have more than just three voices telling this story. 

Until next time...

Susan