What about when we are gone

Parents of children with special needs hear a lot of questions: How old is she? What happened? Does she go to school, have friends, work? Will she always live with you? How do you do it?

We ask ourselves many others: Why her, why me? Is there freedom in being different? Will the world be gentle, kind, forgiving? Who will take care of her when I no longer can? What will happen?

Ali was 13 the Saturday I went to my first workshop about planning for the adult lives of our kids with special needs. The leader, himself a father of an adult child with Down Syndrome, asked us to name the three things we feared most when we thought about our kids being here without us. I wrote isolation and loneliness, and started crying. I remember little more about the day, except that I was not alone in my sadness: nearly every parent in the room expressed those same fears. Most, like me, were in tears.

We parents leave workshops like that one and watch lines come to our faces, see puberty blossom in our kids, see the signs of their growing up and our aging appear simultaneously, the harbingers of life to come. We establish Special Needs Trusts and fund them with life insurance policies on ourselves. We talk with family members about serving as trustees, wondering if they have any idea what a “yes” would entail if we were hit by a car on the way home. We create a master list of all the agencies and individuals who provide services for our children, with names and phone numbers, and put the list in a labeled file. We give copies to our brothers and sisters-in-law. We look at our other children, at our nieces and nephews, and wonder who among their generation will step up to help manage our child’s life in 20, 30, 40 years. We practice yoga. We look for angels. Like a mantra, we affirm that we stay healthy and strong. Much has been asked of us; more is yet to come.

Of course, I don’t know how life will unfold any more than you do. I set the stage with props and lighting, and lean on trust, guessing that the biggest issues will be things I haven’t even thought of. The thread connecting my heart to Ali’s is crafted of blue steel, indestructible, unbendable, tough as nails. I have imagined snipping that thread and dropping my end into a canyon, so heavy it’s become, only to hear the imaginary echo and shudder to recognize my own level of exhaustion. Other days my eyes well with tears at even the thought of her living somewhere other than in our home. When she is away at camp, I’m struck not by how the days grow big with freedom; that would be expected. I’m struck by how much I miss her. Not the lifting or the loud music or the ongoing requests for assistance, but HER, that positive energy, remarkable insight, and those frequent outbursts of unbridled joy. I take myself out of the picture and squint to see the future, waiting for the blurred edges to come into focus. I think I recognize an image but it doesn’t last. I can only know now.

From time to time I’m asked to talk with groups of parents whose kids have special needs. Usually the kids are younger than Ali. Having traveled more miles on a journey few of us have chosen, I offer the perspective of time. The invitation comes with an expectation: show us what’s ahead, we want to prepare. “They want to see that you’re still standing,” says my friend Caroline, herself one of us.

So what do I tell them?

That even though we’ve never met, I know them. I know what defines them above all else. I live with their fears and I understand their love. I show them that I have a life and so does my child, and that our lives are moving out of intertwined and tangled into side by side. They see that I haven’t forgotten how to laugh or cry, haven’t gone numb or been consumed by the sheer managing of all that’s asked of us. I’m convinced it’s not so much what I say but that I am there to say it. I show them I am still standing.

Near the end of our time together, we hear Ali squealing out in the hall. We hear her smile before we see it. She zips into the room, asks me how much longer, turns on a dime and takes off again. On her own, happy, communicative, engaging.

Does anyone have a question?

2 thoughts on “What about when we are gone

  1. Rebecca, I love this new site and everything on it. And you. I am so teary reading these lovely offerings. I’m forwarding them to my daughters and my writers’ group. You are an inspiration.
    So much love,

  2. Rebecca, You articulate everything I feel and that is the greatest gift – to feel understood, especially in “our” circumstances. I didn’t even know about your blog until I read “Between the Lines” this afternoon. Thank you for sharing your gift of expression – and your friendship when we see each other.
    Also really enjoyed Ho,Ho,Ho – I, too, am recovering from being sick after the holidays. Why do we expect more from ourselves than we would of anyone else?
    Thank you – and, happy new year!

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