Our story: our son turns eight years old

Yesterday, I spent most of my time tracking down the situation for a local 6-year old girl with Down syndrome who had been abandoned by her mother for 6 days. Fortunately, this child not only survived (which should impress anyone that a 6-year old with Down syndrome survived on her own for 6 days), but has been reunited with a loving foster family who had intended to adopt her before her mother took back custody. Comforted in knowing this girl is in a safe place, I want to turn to someone who doesn’t receive as much attention here as he should: my son, who turns 8 years old today. And, then I want to ask you for a gift.

Our daughter was born in 2004. My wife and I had planned for her pregnancy, reading a book that a friend swore by after he and his wife soon became pregnant following its advice. Like my friend, my wife and I became pregnant with our daughter after reading the book. Our son, however, was another story.

Unlike our preparation for our daughter, our son simply happened. Conceived ten months after his sister’s birth, he was unexpected. But blessedly so, as he would reveal to us.

While expecting our son, our daughter was in the thick of early intervention, right when kids with Down syndrome start surmounting the physical delays. For whatever reason, my wife and I committed to working towards having our daughter walking by the time her little brother joined us. In hindsight, I wonder about our logic, since we attained our goal, which only meant a more mobile and active toddler while we were also tending to a newborn.

Unlike with our daughter, we chose to find out our second child’s sex while pregnant. We would have been happy with whatever the result, but it was something different to learn we were expecting a son.

Being the sole grandson–as my brothers, and more specifically their wives, had made clear that they were done with adding to the next generation of our family–we were tempted to load up all of the ancestral names on our son. Our initial choice was succinctly struck down by a good friend over a lunch at Skyline Chili.

My father’s grandfather’s name was Denham, which my wife loved, having been raised in England with a township named Denham nearby. Because we lost my father, James, before any of his grandchildren were born, we already knew we would honor him by naming our son after my father. So, we initially thought we would name our son, “Denham James.” I mentioned this to my good friend and, without batting an eye, he said, “No way. He’ll be called ‘Denim Jeans’ his whole life.” He was right and we chose to spare him that ridicule.

His birth date settled what his name would be.

Our son was born today, February 13 in 2006, the same day as my mother’s father’s birthday, Peter Book English. Sharing my granddad’s birthday we named our only son James Book Leach. 

That middle name is also shared with my oldest brother, who has less than an affection for it. But I have always loved it. I thought there was something poetic that Granddad’s name was “Book English.” My son so far loves his unique middle name, and also treasures being named after my father.

In the video at this link, beginning at the 30 second mark, you can tell two things that most people notice about my boy: [1] he is not shy, but a very personable guy who loves attention; and, [2] he has an awesome head of hair. I often joke in my presentations on prenatal testing that his head of hair is exhibit A that counters the view that genetics are determinative for an individual, given my bald pate.

His hair seems to have a power all its own. Complete strangers can’t resist reaching out to give it a tousle. James sometimes gets self-conscious about how much attention it draws, but in the end, he knows it’s an asset.

James has a bit of an ambivalent relationship with his sister having Down syndrome. He has clambered up onto my lap while I write these posts, and, rolling his eyes, says, “oh, you’re writing about Down syndrome again.” And, having just completed my term as Down Syndrome of Louisville’s Board President, James has been to many Down syndrome events. So much so, that occasionally he will say that his sister has “the Down Syndrome of Louisville.”

Like any younger brother, he can be insensitive, impatient, and less-than-empathetic with his sister. But, more often than not, James is a remarkably compassionate brother for his sister. And not just her, but all individuals he sees with Down syndrome.

It warms his mother’s and my hearts to see them interact. To see him sit on the chair arm next to her as they watch a YouTube video and to watch them play games together. The photo at right, is of his homework from October 2012, where, on his own, he wrote that his sister was his best friend. His reasons:

My best friend is my sister. She is my best friend because she is kind. And because she is thotthule (thoughtful). And because she helps me when im (I’m) hert (hurt). She is a good friend when she plays puppy with me. (a game they play). And also when i’m hunngre (hungry) she gives me a snack. James Leach 10-22-2012.

As much as sometimes he resents the attention his sister receives, he’s the first to point out to his mother and I when he sees another person with Down syndrome out in the community. He makes a point of going up and chatting with an employee at our local grocery who has Down syndrome, and is excited to see him each time.

So, Happy Birthday, James. You are a remarkable, beautiful, caring son, brother, and friend. I have no doubt that this world is better for you being in it, and I can’t wait to see what you do in this life.

With that said, as I mentioned in the intro, I will now ask you for a gift.

I am the bioethics specialist for the National Center for Down Syndrome Prenatal & Postnatal Resources. Through March 21, World Down Syndrome Day (chosen for the numerical representation of Down syndrome, 3/21) we have set a goal to raise $21,000. This goal is driven primarily because since February 1, our staff, myself included, will be incurring the expenses to exhibit and/or present at conferences for Maternal-Fetal Medicine specialists, local Down syndrome organizations, and the American College of Medical Genetics and Genomics, traveling to New Orleans, Washington D.C., and Nashville, respectively. We need your assistance to ensure our ability to share accurate, up-to-date resources that patients say they want to receive with a positive test result.

If you believe in our mission, I invite you make a tax-deductible donation through the University of Kentucky’s on-line giving website. Here’s the link with more information. I have a friendly challenge with the other employee at the Center that I will out raise her effort tied to her own son’s birthday. If we can raise $1,000 today through your donations in honor of James Book’s birthday, we will soundly win the challenge.

Many thanks. And, Happy Birthday, James! You are wonderful.