On Fatherhood and Disability: My Happiest Moment

March 26, 2012

pages from a children's book showing the alphabet

by Jon Medders

A few evenings ago, my daughter and I shared a moment. It was the kind of moment I had let go of. One I thought she and I would not get to share.  My daughter is eight and has cerebral palsy.  She is in a wheelchair, has minimal motor control in her upper and lower body, and she is non-verbal.  This moment I want to tell you about was one of the greatest surprises and delights of my life so far, and it has to do with the fact than she is non-verbal.

Don’t get me wrong: a child doesn’t have to be verbal in order to share many great moments with her.  Chloe and I share almost more joy and connection than a grown man can handle. We share laughter, hugs, books, movies, walks, roughhousing, dancing, music, love, sadness, meditation, prayer, imagination, and a divine appreciation of wackiness in the world.  She teaches me, over and over again, how to jump on her wavelength and stay there and feel timeless.

But I do want to tell you about some of the things we don’t get to share. This is important because, like all parents of a child with a disability, I feel grief.  And grief, if not acknowledged, can turn into darker things, like bitterness or withdrawal.  So I am not looking for any pity, here, just for you to witness a few things that are sad to me before I take you to the moment of delight that I really want to share.

Things I grieve:  I will never get to see Chloe’s first steps, because she will not ever walk.  I will never get to teach her how to catch fireflies or frogs. Or how to defend herself from a bully. I may never get to take her to some of my favorite caves or waterfalls, even ones with hiking trails, unless they are super-accessible. I will never get to listen to her side of the kinds of deep, philosophical conversations I imagined—when my wife was pregnant— having with her adult-self, over wine.  We will not dance, except with me spinning her in her wheelchair (which actually is pretty special).  We will not race on bicycles.  I will not teach her how to build a fire or juggle or make homemade pizza.

These things are sad.  So is this:  until this past week, I thought I would never really know what it felt like to hear Chloe say the word, “Dad.”  But now I do.  Are you ready to share my moment of delight?

Here’s how it went down:  My wife was out of town, and I was feeling especially close to Chloe and kind of nostalgic. At bedtime, instead of reading a chapter book, I decided to pull Chicka Chicka Boom Boom off her shelf, one of a handful of books I read to her at least a thousand times once when she was a baby.

I asked her if she remembered it, and—with her yes-no hand signals—she told me no.  So I told her it was one she loved as a baby, and I read it to her the same way I did when she was a baby, beating a rhythm with my hand and kind of rapping it.  Three pages in, her face was wide with a smile, and her bright eyes showed me that, on some level, she did remember.

As we progressed, we were together on that wavelength I mentioned earlier, and on this evening, it was a little like being bathed in golden sunlight, the happiness I felt in those moments.  And then it got better.  On the inside back cover of Chicka Chicka Boom Boom is an alphabet page.  For old-time sake, we sang the alphabet a couple of times.  I noticed, as we did, that Chloe pointed to some of the letters.

So, then, I asked her to point to some specific letters.  She nailed, “H,” and “Y,” and, “M,” Excited, I asked her if she wanted to spell her name.  She signaled yes, and proceeded to methodically reach her hand directly onto C-H-L-O and E.  We have used letter boards before, but she had never demonstrated such precision.  So then, I had an idea.

“Chloe, is there anything you would like to tell me?”  This is the first time I’d ever asked her such a question.  She smiled, as if she’d been waiting years for me to ask it, and signaled, “Yes.”

So as I held the letter board steady, she made eye contact with me, to make sure I was paying attention.  She placed her hand on, “D,” and then she looked straight into my eyes.   I said, “D.” and she smiled and looked back to the book.  “A.”  Again eye contact.  Again, me saying the letter, and her smiling with what almost seemed like patience.  She returned her hand to the book again, and hit.  “D.”

“You just spelled D-A-D!”  She smiled softly, now, and I could almost hear her thinking, “Of course I did.”  Tears were in my eyes.  “I asked you to tell me anything you wanted, and you just told me, ‘Dad.’ Chloe…this is so special to me…” And then I realized there was nothing else to say, that she felt it all, too and through the tears I started laughing, and so did she.

A few days ago, I believed that I would never know what it would feel like to “hear” my daughter call me, “Dad.”  Now I do.  The more I think about it, if you look closely at the way life works, joy is always right there alongside grief; maybe the two are even made of the same substance.


5 Responses to “On Fatherhood and Disability: My Happiest Moment”

  1. Diane Roberts Says:

    Oh John! What a thrilling JOY for you and Chloe! Thanks for sharing!!! Diane (Alex’s M-O-M)

  2. Phuong Berlanga Says:

    Tears…and more tears :,-)

    Our kids bring us such joy!

  3. yannashumaker Says:

    Jon, that truly brought tears to my eyes. Not only the intrinsic joy in the event, but your telling of it. BEAUTIFUL.

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