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Gazette reporter Steven Cook writes of his mother, himself and his son and the condition all three share

Gazette reporter Steven Cook writes of his mother, himself and his son and the condition all three share

Gazette reporter Steven Cook writes of his mother, himself and his son and the condition all three share
Steven Cook, his wife Laurie and son Thacher at Thacher Park. Steve's late mother Connie Cook at nearly the same spot in 2006.
Photographer: PETER R. BARBER/GAZETTE PHOTOGRAPHER (background); Steven Cook (inset)

My wife Laurie and I became parents almost two years ago to an awesome little boy we named Thacher.

I've shared many a photo of Thacher these past 22-plus months on my Gazette By Steven Cook Facebook and Twitter accounts - most recently Thacher enjoying pineapple-shaped sunglasses and floating bubbles - and I'm bound to share more.

But there's more to Thacher's story - and ours - that I haven't yet shared.

It's a story that starts with my own mother, Connie. It then goes through me and then to Thacher.

It involves a rare condition that we all have that affects the muscles in our extremities, a condition that the Muscular Dystrophy Association counts among those it covers.

I've been a reporter for the Gazette for nearly 20 years - 19 years this June - and most recently I help run the Gazette's website and social media accounts, on top of some continued reporting. I took the reporting job with the Gazette out of college, moving here direct from my native Iowa.

All along, though, I've rarely, if at all, taken the time to write about myself in this fashion.

In a way, I've been fortunate in that I could go out, set my sights on something, and do it. Any secondary issues were just that, secondary.

I guess that's how I was raised by my parents. If I could do it, I would do it. And I'm very thankful for that. 

It's an approach that my wife and I expect to replicate with our Thacher as he goes out and experiences the world.

The condition that we all share, my mother, myself and now Thacher, has affected all three of us differently.

It affected my mother, who passed away in 2011 at the age of 68, in ways that meant she could only ever walk with the assistance of braces and crutches.

She grew up in a large family in South Dakota. She later moved to Iowa to work at a hospital there. She married, had two children, my sister Rachael and I. She also loved to sew - among Thacher's toys is a ball made by his grandmother out of fabric that we knew she'd have loved for him to have.

The condition affected me in lesser ways, though still noticeably. As a child, I could walk without assistance, though still wore braces. That changed a bit as a teenager and a bit more recently.

But, with my parents' support, I did everything that was possible for me to do. I rode a two-wheel bike before my teens, I briefly played baseball in elementary school, and later, in high school, discovered journalism. 

With Thacher, he'll continue to show us what he can do. From what we've seen so far, his situation suggests he is more like his grandmother in that he will walk, but likely with the assistance of both braces and crutches. 

Even with his own issues, he still gets around. He's taken a liking to the usual suspects for kids his age, cars, dinosaurs and, for him, The Cat from Dr. Seuss' "The Cat in the Hat." (That's the theme for his upcoming 2nd birthday party next month). 

But we're well on the path supporting him and getting him to that point where he is up and walking, however he will get there, all the while we celebrate his milestones along the way.

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With all of this, I find myself frequently wishing I could share Thacher with my mother and father. My father, Steven Sr., passed in 2014. 

We know they would have loved to meet Thacher. In fact, we named Thacher for Thacher Park, where we twice took my Iowa-resident parents. They never got to meet him, but we know they heard his name and they heard it associated with us. 

But my wife and I never really considered having a child until after they were gone. In the years they were here, I never sat down with either of them to really talk about how they raised me, or, with my mother, about her experiences growing up.

So, in addition to the regret of not being able to share Thacher's life with them, there is also the regret of lost connections, not directly knowing how they did it. How my mother did it. And how all this could apply to raising Thacher.

Fortunately, in one respect, my mother did leave behind some glimpses into her own childhood and young adulthood, questions that I never thought to ask or took the time to.

She left behind a box of her writings, compiled from various classes she took over the years. In some of her most fascinating stories, which I compiled and shared online in the months after her death, she placed her own experiences at the center.

She wrote of entering the second grade outside Sioux Falls, S.D., about 1950 and, for the first time, being able to walk as she had just gotten her braces. Her large family had helped her before that, but she hadn't walked herself.

We know and believe Thacher will be up and walking long before his grandmother was.

In another story, written shortly after the events in the early 1970s, she wrote of learning to drive for the first time at age 28 using hand controls, and the freedom that brought.

We know Thacher will hit the road exactly when he's old enough, with his father's example. Just like his father did with his grandmother's example.

But that driving story also included, I think, a nice distillation of my mother's approach to everything.

"I wear full-length leg braces and walk with the aid of crutches," she explained in that account written about 1973 or 1974. "I didn't consider myself limited, however, because it hasn't stopped me from doing nearly anything."

While we thought we had a handle on everything to expect with Thacher, we got a glimpse early on of a scary situation we didn't expect.

After a battery of tests to try and find out why, at 2 months old, he was breathing so loudly, we found ourselves in our car, panicked and flying into the Schenectady Fire Department's main station.

As we were driving home, Thacher had stopped breathing. The firefighter paramedics happened to be right out front enjoying that sunny evening, making their response immediate.

Thacher came through, but the issue has persisted - and there have been scary moments since. However, we hope and believe as Thacher has grown that the threat has diminished, though the threat remains on our minds.

After some further tests, specifically genetic testing, we learned the exact name of the condition my mother, myself and my son all share. We had had some ideas over the years. One proved just off the mark, another way off. But doctors centered on something called "congenital distal spinal muscular atrophy." I prefer to explain it as most akin to another condition called Charcot-Marie-Tooth, rather than a similarly named condition, mostly because we know, through my mother and myself, what we have is generally stable.

But, as we heard this new name, we checked the condition's Wikipedia page and it showed a basic list of issues seen at some point in either my mother, myself or Thacher. 

Thacher's scary breathing issues were traced to a symptom of the condition we all seemed share, related to the vocal chords. The thinking is that my mother and I had the same thing in ways that maybe made us sound in similar ways, but didn't prove threatening. 

More about Steve and Thacher:

In Thacher, though, this unexpected condition - like so many parents who have encountered their own unexpected and frightening detours - upended many of our well-laid plans. My wife left her job to stay home with him to ensure he stayed safe. She is just the best with him. (Happy Mother's Day!)

But with the help of some good people - and some good luck - we made it through.

Speaking of good people, my wife discovered and spearheaded in February an online vote drive to win Thacher a special adaptive bike through the organization Friendship Circle's program called the Great Bike Giveaway. With the help of many locals through Facebook, Thacher won his bike. It's three-wheeled and hand-powered, a kid version of the kind his dad now has and rides. It will be ready for him when he's ready. Thank you to all who voted.

But I think that bike is emblematic of how Thacher will grow up. If he can do it, he will. And we will encourage and support him every step of the way. 

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