Project Life


It’s on my mind to name something that I suspect all parents of kiddos with special needs struggle with. I often see my daughter as a project. It’s a dangerous and warped view. It makes sense, though, that all the doing takes over. From Norah’s early days she needed to be fixed. She required open heart surgery, medication for severe reflux and hypertension, early intervention. I have waves of panic even now that flood me with doubt. Am I DOING enough for her? I reach out to other parents of kids with Williams Syndrome (WS) for support and advice. But a part of me is also checking in and comparing. How is Norah doing compared to other kids? How am I doing as her mom and advocate? But regardless of the feedback something feels off; icky; insincere to my true intention.

When I’m with my family and tapped into that intention it is clear; just love…just be….just be love. What is love? It’s presence; being. Love is being and being is love. Fixing and controlling get in the way. I think I imagined my Norah as a flower and myself the gardener. I am but another flower. Let her see me follow the sun, soak up the rain, weather the storms, become compost to nourish her at her roots. Let me not presume to prune away the parts of her that do not match the other flowers. Let me be curious to see her glory. Curious to learn her colors, the shades of which I’ve never seen.

Opening to that intention is wild and scary. Let go? Yes. Let go.

So, I often swing wildly from two parenting extremes. Sometimes I am very goal-oriented and attempt to facilitate Norah’s independence and education with fierce determination. Fix her. And then, in exhaustion, frustration and ickiness I let her be altogether. I tell myself that’s letting go. It’s not. Neither of these extremes is at all ruled by my deepest loving intention for Norah. They are driven by my ego. Even in the letting go I am trying to DO it well.

Norah and Charlie are at Summer Camp this month. This year Norah is a “Chatty Caterpillar”. I asked her a few days ago, “If you’re starting camp as a Chatty Caterpillar will you end it as a butterfly”. Her answer, “I’m a beautiful butterfly”.

It brought to mind a story that I first heard in a podcast by Tara Brach. Here is the written version.

The Butterfly by Kazantzakis from Zorba the Greek

I remember one morning when I discovered a cocoon in the back of a tree just as a butterfly was making a hole in its case and preparing to come out. I waited awhile, but it was too long appearing and I was impatient. I bent over it and breathed on it to warm it. I warmed it as quickly as I could and the miracle began to happen before my eyes, faster than life. The case opened; the butterfly started slowly crawling out, and I shall never forget my horror when I saw how its wings were folded back and crumpled; the wretched butterfly tried with its whole trembling body to unfold them. Bending over it, I tried to help it with my breath, in vain.

It needed to be hatched out patiently and the unfolding of the wings should be a gradual process in the sun. Now it was too late. My breath had forced the butterfly to appear all crumpled, before its time. It struggled desperately and, a few seconds later, died in the palm of my hand.

That little body is, I do believe, the greatest weight I have on my conscience. For I realize today that it is a mortal sin to violate the great laws of nature. We should not hurry, we should not be impatient, but we should confidently obey the eternal rhythm.

As I practice dropping regularly into the deep love I feel for both of my children I find a truth there about the rhythm of life. Letting go of orchestrating Norah’s life allows me to tap into the very inner wisdom that will guide my actions. Because wise action is so necessary when parenting special needs children, and all children (including our inner ones).

What wise action does this reflection bring? In this moment it is patience with me and my own parental unfurling. It is not setting a goal to be wise. It is touching my intention in as many moments as I can muster and understanding and forgiveness for all the moments that I forget.

To name something else, though, as right as this feels it is equally difficult. There is no To Do list, no box to check. It takes heart and struggling against our own cocoons. Where special needs are involved we ride the daily waves of noticing that our kids unfurl in unfamiliar ways. It can be excruciating to watch. I am regularly stricken by my grief over Norah’s struggles and protect myself by turning away. On my bad days I feel I’ve failed her already. On my good days I recognize that it is enough that I’m digging deep and practicing.