I am the father of Isaac, an eight year old boy that has Down syndrome. His mom started an awareness website and asked me to write a short piece about being inspired by a Down syndrome “moment,” of which there are many. I tried writing about some inspiring episodes but I felt unsatisfied, like I was missing the bigger picture. I deleted all of it and I am starting over.
I want to write the truth.
->> I’ve met a lot of good people in the Down syndrome community, families, doctors, volunteers. Many have spent their lives helping and advocating for people with Down syndrome, like Dr. Oppenheimer at Children’s Hospital, or Brenda Cox of Families Connected out in the county. I’m inspired by these people. Even though I’m in that community too - I’m a parent of a special child, I sit on boards and committees - I still feel like an imposter compared to them. There are many other things that inspire me about Isaac and his world. They are moments of success such as swimming across the pool for the first time, or being student of the month at school. I remember the first time he ate off a spoon all by himself. It was refried beans in a Mexican restaurant.
But you don’t need me for all that. I said I wanted to write the truth so here goes. There is something I learned from Isaac that has not only inspired me but possibly saved my life. It is about faith, something I’ve never been long on. Most of my life I never thought about faith. Everything was good. I traveled, got college degrees, had girlfriends. Eventually I met Isaac’s mom, got married. Then came Isaac – who we loved from the first second – and the Down syndrome – which we didn’t know anything about. We started learning.
I was never a big believer. A lot of things happened in my life over the years, and by the time Isaac was born, I was 47 and very short on faith. It seemed like a racket to me, a delusion, a futile clutching at straws to make us think there was more to life than our little time here.
Some bad things started to happen. I won’t list them, but times got tough. My hands were full, with a special child, a young wife, sick, aging parents, a full time job and all that.
Faith still didn’t occur to me and I didn’t much care. What was it going to do for me anyhow? Go to work for me? Catch up on lost sleep for me? I worked, struggled at being a single dad after Isaac’s mom moved out. Contrary to having faith, I was anti-faith. After long nights of work, carrying my sleeping child home at midnight, back aching, I’d look at the stars in the sky and think, fuck you. A futile gesture, I know, as hollow and pointless to tell now as it was in the doing of it.
I felt alone, but as I watched Isaac grow and develop I gradually began to see things differently. I began to see how unique Isaac is, and how he fit so naturally into the world, like he is part of a huge pattern, like there is a reason to all this, to him, to everything. The vast mosaic of Creation. Watching Isaac’s pure, guileless responses and emotions I see an heirloom quality, pure, undiluted by the culture around us, by the pressures of being ‘typical.’ There is a realness – joy that is real joy, love that is real love. In Isaac there is a sense of how we could have been, back in the Garden, before the apple and the snake and all that. In Isaac I get a glimpse of the Maker’s hand.
Maybe I still don’t know what faith is going to do for me, but at least I feel a little less random, like none of this is an accident. And that’s big.
By Louis Friedman
