Knowing Jesse

I am in the airport on the way to what has become an exciting speaker tour in California. I stop for just a sec at the book store [of course!] and a book catches my eye. It has on it the photograph of a young family- mother, father, and son. The son is in a wheelchair and has the same look on his face, the same facial features as my teacher Noga Gazit’s daughter Noa does. I flip through it and see lovely pictures of the boy, named Jesse, and precious poems that Jesse has written over the years. There was one about when he swims he feels alive, and the picture shows a six year old with his eyes closed, the look of a calm angel, in the arms of his father.
Another poem was about how he walks on the inside, about how outside he’s mute, but inside he talks. The last photograph shows Jesse, with this I-know-I’m-cool look on his face and gelled spikes. It says, “Our last photograph of Jesse, age 16.” That picture and what you are about to read made me cry, like a baby, with great pain, admiration, and connectedness.

Chapter twenty seven of Marianne Leone’s Knowing Jesse- A Mother’s Story of Grief, Grace, and Everyday Bliss. It is titled “Finding Jesse.”

When I try to find Jesse every day, I am not expecting the gasp-producing, transcendent Madonna-and-Son reunion in the Piassaba Garibaldi. Such bliss is meted out only in seconds of unconsciousness when I meet Jesse, hold him, kiss him in dreams that are really visits from him. I look for him the sky but the hawk isn’t there as often as I need to see him.

Jesse told me in a dream visit ‘I’m always with you. I take him at his word and talk to him. I ask him to send me songs sometimes when I’m alone in a car, just another of the many shifts in sanity in my life without Jess, like talking to myself and addressing inanimate objects out loud. Anyway, he does send me songs when I turn on the radio….. and I feel a frisson of contact for that moment. But the hunger for touch is abated only temporarily in the seconds of dream-visit bliss. I don’t try to find that bliss every day because the touch we shared was only one part of what was Jesse, alive.

It in the giving part I miss, the feeling of giving to Jesse without expectation of anything in. And now that’s how I experience Jesse in the fullest way, in the giving. By giving I don’t mean the charities, though I know he would appreciate the foundation in his name that helps other kids with disabilities to go to school. I mean the giving of myself to others in less tangible ways, the sympathetic ear, the small thoughtful remembrance, the acknowledgment of other people’s joys and sorrows. That’s exactly what I don’t want to do. I want to stay inside and be alone. I want to wander the rooms of my home blankly, like a confused spirit trapped between worlds. But I can’t find Jesse that way.

I try to use my mother-warrior skills to train future warriors and to slay the bitterness and loss of hope in my own treacherous heart. I talk to mothers who have babies like Jesse. They are afraid, angry, desperate. Like I was. I hold their babies and I tell them they will have joy, that they have a teacher. They don’t always believe me. I don’t blame them. I am aware that I sound like a refrigerator magnet. They see work, unending work, and years of fighting ahead. And they see my work as over. But it’s not. I’m still trying to find my son. …..

To be present in the world, the world without Jesse, that the hardest part. But it’s the only way to find him.

Posted in: Nomadic Parenting