The Mother of All Game Changers

It's glaringly obvious something is not right. By now I'm walking with a walker and wearing an electronic bracelet on my lower extremity, much like Martha Stewart's.

Even so, I was keeping my diagnosis semi private, only telling family, close friends and TMZ. As my teeny tiny, big things come in little packages Gramma 'O' used to say "If you're going out ~ take the party with you ~ if not, stay home." That's the Irish in me, we carry our troubles close to our pearls and beads.

Most people thought Lou Gehrig's Disease was something only baseball players got and that worked for me.

My mother called my malady the Tipping Disease because I fell so often. What can I say, Ellie called them like she saw them.

I could not bear ~ the visual ~ of my future self in a wheelchair and wasn't about to let others see my future self that way either. Keeping things upbeat and private was working out nicely until April of 2010. Then came the ~ great disruptor.

The Walk

In early April of that year, my daughter Megan came flying in the door one day over the moon, telling me she and her good friend Jordan were looking online for ways to help fight ALS and came across an upcoming Walk to Defeat ALS ~ in Lincoln Park.

Megan: "The ALS Greater Chicago Area Association, now ALS United Illinois, is having a Walk To Defeat ALS in less than two months and I signed us up! Isn't this wonderful mom?!"

Me: "Wait, wait, can you say that again Megs?!"

Megan: "Finally, there's something I can do to help you mom, something we can all be a part of, to help find a cure!"

Me: (Now everyone will know what I have.)

Megan began describing all the details of the event with so much love and excitement and I thought… how did we go from keeping my diagnosis under the radar to skywriting it over Lake Michigan?

I did the only thing a mom can do when her daughter's joy is a runaway train, I hopped on.

This would be a first. Not our first fundraiser, we've attended plenty of those over the years. This would be the first time I would be one of the faces and names people are fundraising and walking for. And this time my future self at every stage, would be on full display.

2010 Walk to Defeat ALS

The 2010 Walk to Defeat ALS was an outside event held at Chicago's Lincoln Park, right on the lakefront. You'd be hard pressed to find a prettier setting. This was their biggest fundraiser of the year, raising critical funds and the awareness ALS so desperately needs.

Each team would have their own custom made T-shirts and we'd all make our way around the park with music and balloons helping make the Walk fun and festive.

Even so, it broke my heart to imagine dozens and dozens of pALS (people with ALS,) at all different stages of this disease, gathered together in one place. All I pictured was a sea of wheelchairs and BiPAPS and it was killing me. This did not sound uplifting and no amount of balloons, cheering or even Chicago's captivating lakefront were going to convince me otherwise.

I kept all this to myself with one exception. My mother. I remember telling Ellie not to come. It would be too depressing. She was lighting candles and sending me Mass cards every other week as it was.

That's the Catholic way ~ we light a candle or two, call on Mother Mary, recruit our favorite saints and send Mass cards when someone needs prayers. If necessary we've been known to add a bit of Irish Blarney to make it convincing.

Megan wasted no time spreading the word and as you would expect, family, friends, and neighbors all hopped on the ~ Walkin' for Kate ~ train.

Our team shirts were made at Rumpleshirtskin, a great little uniform and printing shop in downtown Wheaton. Every year, the owner Jim would cheer us on saying he's praying for a cure! It's a blessing to live in a community like Wheaton, where people show up, shirts get made, prayers said and you never have to walk alone if you don't want to.

Leading up to the Walk I was split in two; one part of me was overwhelmed with gratitude, humbled by everyone's love and enthusiasm. (Like I just handed out tickets for a surprise trip to Ireland!) The other part of me? Still wishing I could disappear.

The great thing about my people is even in the heavy, they can always find the light and make you laugh. I would smile my way through the awkward parts and trust that we were meant to be a part of this Walk.

"Let go and let God" needed to be my mantra.

Turns out, I was as prepared for my first ALS Walk as a toddler for Wimbledon…

If you're wondering about the electronic bracelet, it's called a WalkAide — a device I wore on my calf for a few years that helps with drop foot.