Trying to capture the emotional heartbreak of a diagnosis and simultaneously making sure specific medical information is correct was a big hurdle for me while writing My Emily.
I wanted this book to be a quick read, but one that could leave a lasting message or lesson. Someone could sit down for an hour – give or take a few minutes – and perhaps walk away being touched in some small way. My intention was to have the reader feel I was sitting right across from them telling our story.
It was my hope when I started writing this book that I could share the feelings and heartache one experiences when hearing that your little one is born with Down syndrome or later diagnosed with leukemia. I wanted to put readers in the hospital room with us – to wonder what my emotions and thoughts were when hearing this gut-wrenching news.
Although there are some intense moments in My Emily, I also did my best to infuse humor. I’m told I can be quite humorous and I tried my best communicating this sense of humor, whether it was in particular moments or just how I talk. Again, I wrote this book with the premise of me and the reader sitting down at a coffee shop and talking. I wanted readers to have a hunch as to who Matt Patterson is as a husband, father and regular guy.
In addition, I wanted to make sure my medical information was correct, but simple. When one begins to use words like chromosomes and genetics, I didn’t want to lose readers. I didn’t want them to have to read paragraphs three or four times to understand what I was trying to say.
In the following excerpts from My Emily, I share the moment where we learn our daughter may have Down syndrome …
He walked into the room and closed the door. As he set down his clipboard, he also pulled the ceiling curtain around the bed – even though we were the only ones in the room.
I began to think, This can’t be good.
My mind raced.
After taking a very deep breath, our physician told us that Emily was born with Down syndrome – a genetic, chromosomal disorder. To be honest, I didn’t even know what Down syndrome was.
We were numb.
I couldn’t breathe. I truly couldn’t breathe.
“An extra chromosome,” the doctor said with a deep sigh. “At conception, an individual inherits 23 chromosomes from the mother and 23 from the father. However, sometimes a person receives an extra chromosome from one of the parents. In Down syndrome, an infant most often inherits two copies of chromosome 21 from the mother and one chromosome 21 from the father for a total of three chromosomes 21.”
It was as if the world went quiet. I heard nothing.
We did everything right, I said to myself. This just doesn’t happen – not to us, anyway. It’s not real. It’s a dream – a really bad dream – right?
“It’s nothing you did or didn’t do,” he said. “This could happen based on your genetic history or by just pure chance.”
I was of the opinion that this was just a horrible mistake. Chromosome 21? I asked myself. Chromosomes are numbered? Copies of a chromosome? Pure chance?
Return for Part II on Wednesday.
Matt Patterson is the author of My Emily and an award-winning writer, editor and communications professional. His two-plus decades of experience include public and media relations, as well as print and broadcast journalism. He volunteers his time to helping organizations and charities dedicated to assisting families with children who have special needs or those battling pediatric cancers. He resides in Arizona with his wife and two daughters.You can learn more about Matt at http://mattpatterson.me/ and http://www.my-emily.org/.