Thursday, February 14, 2013


5 years ago, on Valentine's Day, my Uncle Jimmy died.  He wasn't old, or sick; he choked on a sandwich in the bathroom of the sheltered workshop where he spent his weekdays.  His life started out difficult and ended sadly, but these days, on February 14th, when I think of him and his legacy, I'm reminded of the absolute power of pure and simple love.

Both of my mother's brothers were born with Fragile X syndrome, a genetic condition that mostly affects males (since the mutation is carried on the X chromosome, females can be carriers but have a "normal" X to make up for it). My Uncle Jack is older, and less severely impacted: he can write simple words, and operate basic appliances, and groom himself and cook (he's also obsessed with show tunes, but that's another story).  Jimmy was born small, and as an infant had difficulty latching and sucking, so my mother--who was 11 years older--spent the first several months of his life spoon-feeding him sips of milk until his tiny muscles got the hang of sustenance.  From there, their bond was indestructible; they adored each other.  In the 1960s, before all the nifty advances in genetic research and testing, when people with intellectual and developmental disabilities were called "retarded" and relegated to sub-human status, there was little room in polite suburban Chicago society for a family like theirs--yet my mom's stories of childhood are like anyone else's, filled with sibling rivalries and escapades.  But Jimmy was the baby of the family, my mother his protector, so when my grandfather's job took them to Central Florida, my mother left college and followed them to the Sunshine State.

Jimmy had a lopsided smile and a habit of close-talking; he'd get right up in your face and ask you questions in his incongruously soft voice (he grew to be a very large man).  His questions usually centered around whether or not you'd drive him to the store for a "beer," a tradition that started when my father, during visits to my grandparents' house, would inevitably make a run to the 7-Eleven, taking Jimmy along with him.  Jimmy didn't drink alcohol, but long after my parents were divorced, my Dad would stop by and take him for a ride to the store for a soda.

Jimmy called me "Snork," because that was the sound he heard me make when I was a baby.  He loved to bowl, and was of such powerful stature that everyone in his general radius would reflexively recoil when he sauntered up to the lane with his bowling ball.  He was a man's man, he loved tools and could often be seen walking around the house in his toolbelt.  He was in the garage workshop when my grandfather died there, instantaneously, of a massive heart attack; Jimmy was never really the same after that.

My uncles lived with my grandmother until she died in 2004, at which point they went to live in a group home.  They worked during the week at a sheltered workshop--which sounds awful and sweat-shoppy, but was actually a hugely rewarding experience for them, for a long time--and one day, Jimmy went into the bathroom to eat his lunch (he had a tendency to be secretive around food) and they found him, a while later, unconscious on the floor.  He was taken to the ICU, where my mother lay next to him until they discontinued life support.

I flew home for his funeral, 4 months pregnant with Evan, and I was terrified.  I was afraid of how my Uncle Jack would deal, how my mom would handle the loss.  I was not prepared for what happened at the church, the standing room only, the absolute flood of people who came out to pay tribute to his life.  My Dad was a pallbearer, and I saw him cry for the second time in my life.  Fr. Robert, a long-term family friend and Franciscan priest, came from out of town to stand at the altar, though it wasn't his church.  People from Jimmy's workshop, his bowling league, old friends of ours from St. Mary Magdalen, tons of people I didn't know clogged the aisles and the back of the church. And outside, in the parking lot, I met a young man who was sobbing; when I introduced myself he threw his arms around me and said "I just loved him so much." I found out later that he was the manager of the group home where Jimmy had lived.

At the funeral, my mom gave the eulogy.  At one point she told the audience that as a child I told her I loved being with my uncles, because they were always happy to see me.  And they were; the summers and holidays and weekends I spent with them were filled with love and acceptance and fun.  I miss his crooked smile, I miss taking him for a beer.  I miss watching him sidle up next to my mom, seeing her cradle his head in the crook of her neck, witnessing that perfect bond, that pure affection.

We're all a little cynical these days about this holiday, but I'm reminded of how important it is to love someone fiercely, to love them wholly, to do it because it's important, and it's beautiful, and in the end, it's all there is.

Thursday, February 7, 2013


We eat king cake for breakfast, and take baths when it's convenient. 

We are Mardi Gras.

Our fingernails are dirty and we have too many swords. 

We are Mardi Gras.

We want that cup, but when the boy behind us steals it, we let it go.  And we hand him the next cups we catch, because we're cool that way.

We are Mardi Gras.

Our homework is half-done, and our Moms don't care.

We are Mardi Gras.

We know the rhythms: drop back to the curb for the marching bands, rush forward once they're past. But not too far forward.  Let the riders know you're there.

We are Mardi Gras.

When that awesome throw comes flying, the one we've been waiting for, and it rolls under the float, we wait. We know better. 

We are Mardi Gras.

Our siblings are smaller, and quieter; we know what they like.  We yell for them.

We are Mardi Gras.

We never throw coins at Flambeaux.  We hand them bills, and make sure our hair doesn't catch.

We are Mardi Gras.

We link arms and sing pop songs en route to the parades.  We are young, like this night, full of possibility and joy.

We are Mardi Gras.