Phantom limbs


November 6, 2014 by whirlyjoy

I woke up abruptly this morning at 4:37am, emerging from an intense dream in which Aida was talking to me.


I used to have these dreams all the time, from when she got her first hearing aids at 22 months,

Tiny but powerful hearing aids

Tiny but powerful hearing aids

through the next couple of years to her cochlear implant, her autism diagnosis, entering preschool, entering kindergarten, her first signed words (the still perennial favorites “no” and “more”), 5th-grade graduation with the royal blue gown and cap she suffered through just long enough for photos… DSC00463

Throughout those years, even after I had consciously accepted that I would never hear Aida’s voice shaping anything other than the low chirps and decibel-breaking shrieks that seem to satisfy some kind of inner need of her own to feel her vocal chords move and her inner ear reverberate, still I would dream vivid, lengthy, exhausting dreams, filled with the sound of Aida in speech.

She would emerge from her room and find me in the kitchen making breakfast — not a scenario based in even the remotest reality, since her sleep patterns’ dictatorship over my own meant that in fact she almost invariably tore me straight from slumber with exuberant Aida shouts, or if in silent mode that day, flipped on every light from her room all the way into mine and pulled back my comforter to help me understand that It’s Time To Get Up — but life is different in these dreams where I’m visited by Aida’s phantom speech, here I get to be a mother who rises early to prepare breakfast in a calm and lovely and invariably tidy kitchen for her daughters, with an eldest daughter who emerges a bit sleepily and comes to hug me as I stand over the stove… Up to this point, the dreams feel normal, preternaturally normal, a kind of normal I’ve never experienced in waking life; there’s a calm sense of rightness without urgency, it is morning, I have slept, I am making breakfast. Like The Truman Show before the first hint of the world outside the set.

And then Aida begins talking! and the soap-bubble Joy in the dream bursts into damp droplets of panicked urgency. Every dream is different — Aida might simply say “good morning” as if it were the most natural thing in the world, and go sit down at the breakfast table to wait, calm body, no flapping hands… or else she speaks floods at me, urgently detailing everything she was unable to tell me until this dream day, when she woke up and felt the words ready and lined up to come out, lips and tongue and throat connecting back properly to brain, all working in harmony to communicate — oh! anything! the magic of how the cheddar is oozy and orange and warm between the slices of bread toasted caramel brown buttery crunchy in the iron skillet for breakfast. “I love it so much I just have to flap my hands, Mom!” says the dream Aida with her ghostly visitation of freshly minted words.

As Aida chatters on, dream-Joy is always struck speechless. With her first words I awake from the false dreamy morning with a shot of adrenaline that boosts me into much more familiar emotional territory. It’s now a dream permeated with anxiety as I struggle to catch up to this new reality, which while wonderful I also recognize as phantom and perhaps fleeting — I must ask her all the important things now, I think, before her ghost speech deserts her again (there’s an echo of DeNiro in Awakenings here, a film I saw while pregnant with Aida and that touched me deeply from what I wrongly thought back then was a safe distance), I try to marshal my foggy slow-motion dream brain into coherent questions that will help me better love and care for my daughter when she falls silent again (at this point the awareness of being in a dream often begins to intrude, but I despise this doubt, reject it utterly as I try to maintain rapt attention to Aida and drink in her every word) — or I hold her tight, hug her to me, try to tell her how amazing this is, what a gift to me as her mother to finally know her thoughts, want to beg her to just blab away and say anything she wants, no matter how trivial, what does it matter after 5-10-15 years of silence, guessing, frustration pooling between us day-in and day-out? — or I begin looking for the telephone even as I listen, desperate to call everyone and share this wonderful news of Aida Talking, to arrange an impromptu party to celebrate and anchor it as a real thing, not so much a ceremony as a shotgun wedding.


This morning’s dream was my first visitation by Aida’s phantom speech in several years, and  it played out in a similar scenario, except this time in the dream as in life she no longer lives at home. It is morning, she walks in from outside and drops a stack of papers and pamphlets onto the kitchen table where I’m having my coffee, sits down next to me and begins telling me about all these college applications she’s filling out. She’s excited by her goals, chattering on as I, stunned, begin wondering how I missed planning for this eventuality and how on earth we’re going to pay for it?


My dream self was feeling the same sense of slightly overwrought maternal anxiety that I’d fallen asleep with, although the real tasks I have to tackle are far removed from SATs, GPAs and college application deadlines. Here are the items I’d compiled in the “House communication” reminders list that’s coded yellow on my Mac screen (telling me to slow down and keep things in perspective — Joy, go on, put on the brake — did you hear me say Yellow?!): make sure her nails are trimmed more regularly; use lotion on arms and legs to see if she stops scratching as much; don’t let her wear her Crocs to school now that the rainy season has started; could we make a wall poster with photos and names of all the staff so she can learn them?

I’m not saying that the real to-do list is any less important to my job as a mother, to Aida’s well-being, than the tasks that were looming as odd outsized fears in my dream. But I see the going-to-college dream, a brilliant subconscious work of stark magical realism, as a clear message from my dormant self to the driven and hyper-energetic mother I tend to be when awake, reminding me that Aida is growing up, that others are helping to take responsibility for her now, that mistakes will be made and lessons will be learned that have nothing to do with me… the same realization I’ll have to make for Mimi in a few years, probably with at least equal levels of trepidation and disbelief that she no longer needs me around to protect and defend her all the time.

3 thoughts on “Phantom limbs

  1. Bonnie/Bernard Ruekgauer says:

    Hello, Joy –

    I am so glad to still be on your blog! While we haven’t experienced autism in our immediate family, I have several friends whose children are somewhere on the spectrum. Your real life stories (even your dreams) help me to have a deeper understanding of their lives – although I don’t think anyone without direct experience can truly understand or relate.

    Thank you for allowing me to continue having this little peek into your life with “Aida.”

    With gratitude,

    Bonnie (Brad’s mom)


    • whirlyjoy says:

      Thank you Bonnie! I’ve been semi-absent from this blog this year, but so appreciative that people are still connecting with it. More to come soon, I hope you’ll stay on board!


  2. Linda Keeney says:

    I miss you my Friend. All of our lives take some pretty real and brutal turns sometimes. I thought of you very strongly last week when I stopped by Grateful Bread.

    Much Love,
    Linda K.


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