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Home | Episode #47
This Is To Mother You
October 11, 2019 | Student Producer:

Noah Pallmeyer
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This Is To Mother You
Emilie Amrein talks about the incredible pain and joy of raising her daughter, Ellie. (7 minutes)

So I am the mother of two exuberant and exhausting children, George and Ellie, and I am really lucky to be their mom. They are silly and mischievous, endlessly curious about the world, and tremendously empathetic in spite of the generally chaotic and messy household that we've built together as a family. Not long after we arrived in San Diego five years ago, Ellie, my daughter was diagnosed with an extremely rare genetic neuromuscular developmental disorder caused by a mutation on her KAT6A gene. At the time, she was the fourth child in the world with this diagnosis. Now there are over a hundred kids and young adults living with this syndrome from all over the world and I'm in touch with a lot of the families in this ever expanding Facebook group. It's an amazing wonder of technology. 

At nine years old, Ellie is almost completely nonverbal, but she is remarkably social. She's really like the most outgoing person in my family. She is energized by being around her classmates who have been learning how Ellie communicates when she joins her mainstream classroom for a portion of the day. She uses a combination of sign language, gestures, vocalizations, and an iPad to communicate. She's pretty fast with the iPad and has figured out how to export sentences from her AAC app. And AAC, if you're not familiar with special ed lingo means alternative and augmentative communication device. Right? So her AAC app to Messenger, uh, and I wouldn't quite call it texting, but it's pretty close. So she's also a wiz at making calls to unsuspecting relatives on FaceTime at the crack of Dawn. And so if you are interested in a pen pal or, or a phone buddy, you can also receive a phone call at the crack of Dawn. Uh, at her ninth birthday party, Ellie was surrounded by a pack of third grade friends all decked out in ponchos and galoshes for our rainy day birthday party, uh, rainy day birthday parade. And they all seemed genuinely delighted to be in her company. I have this image of her seared in my memory riding this plastic plasma car. Uh, being sort of joyfully half-pushed on the sidewalk by a friend. Her glasses completely fogged over because of the Misty rain, but her head thrown back in laughter and this image makes my heart explode even just telling you about it with joy for our little community and for El, she was seen and understood by her peers in a way that felt meaningful and deep that day.

It hasn't always been this way. I remember when a social encounter like this party was beyond what we believed Ellie would be capable of. Ellie's teachers and doctors and therapists all warned us to lower our expectations for her future. We were told that there was so much that she would never be able to do and I believed it all because I was already living this reality. Even before her diagnosis, I poured over research in an attempt to know and understand what we were experiencing neurologically, metabolically and developmentally with Ellie. This was one of the darkest times I've ever experienced in my adult life. While I never intended to micromanage my child's future, I had held onto certain assumptions about who Ellie was and what her future might look like. Narratives that I had begun to imagine even before I was ever a parent.

Each question begged another with a sharper edge. Would Ellie be able to go to college? Would she be able to earn a living? Would she be able to live independently? Would she be able to read? How would she be able to process all that it means to be human without words? And guiltily, I wondered how this would affect my life. I would see other children and other parents, coworkers and friends, and I would be racked with jealousy and then guilt. I was drowning in grief as I processed the loss of the future I imagined for her, for us, and for myself. By focusing on what I'd lost, I started to see those that I love most in my life very differently, including Ellie. Where I had clung to elaborately constructed dreams of a future, I now only saw a life diminished by deficits and challenges, limits on the life she and we could have had, the life I could have had and I couldn't possibly conceive of being anywhere other than exactly where we were in that moment. 

In this soul crushing darkness, I encountered an essay by #ActuallyAutistic Maxfield Sparrow that transformed my thinking about parenting a disabled child and if I'm honest about myself. He writes "A child, any child, not just a disabled one, is a work in progress. They are a sort of seed of the adult that they will hopefully grow to become. Think for a moment about how plants grow. If you could only see the seeds and bulbs and spores and had no idea what plants they would become, wouldn't you think an Iris bulb held so much more growth potential than a sunflower seed? Yet given time, the sunflower will tower high above the Iris blossom. Tiny acorns grow into massive Oaks, but before Oak trees scrape the sky, that even smaller bit of dandelion fluff will take over the entire meadow filling it with sunny yellow flowers. The seed is not the plant. The child is not the adult."

What a relief I felt to be invited to believe in my child, and children in general, and ourselves in this way. Their lives will never conform to the expectations and plans we construct for them in our imaginations. Letting go of these plans is an act of faith that can both locate us in the reality of the present and liberate us from the limitations of an imagined future that is confined to what Richard Rohr calls "an arrogant way of knowing." This faith, this embrace of unknowing allows me to see and love Ellie as she is and not as she should be, and it allows me to be seen and loved in this way too. This faith opens our hearts to the unexpected joy of a truly unconditional love, a love that heals, restores and transforms