Plinth Blog Special Needs Parenting

25Apr/101

Having a Child with Down Syndrome Part XIII: Surprise Mourning

Copyright © 2010, Stephen Hawley, all rights reserved.

My alma mater, Oberlin, hosted a 25th year reunion for computer science students this weekend. This was an event for which I was quite eager to be an active participant. I have a strong passion for software and the process of writing software. It has been an infinitely fascinating area for me and one that I was eager to share with my friends and other students, present and former. I had a presentation that I had done at Worldcomp a few years back that I was going to recast for this audience. One of my former professors warned that I shouldn't make it too heavy on the technical side, so I instead took the opportunity to try to present the parallels between taking an obvious problem and how thought and happenstance allowed me to turn an ungainly performing algorithm into something more nimble and contrast it with the process of becoming a parent to a child with Down syndrome.

So what does computer science have to do with Down syndrome? In writing the initial draft of the presentation, it occurred to me that there are a fair number of parallels in the process of becoming a parent to a child with special needs and the process I followed for this algorithm.

This statement reminds me of a passage I read by Raymond Smullyan in the book the Tao is Silent, where he describes heaven and hell. He wrote that heaven is not a place. It is not a destination. It is not an end goal. Heaven is a process, in this case the process of reaching enlightenment. Hell is how long it takes.

I bring this up, because giving this talk surprised me. I went over the deck at least a dozen times, adding and removing smaller and smaller things until my editing was simply nuance. I knew the talk inside and out. As part of it, I present a picture of Alice taken when she was in the NICU 7 years ago, looking like a Borg, connected to hoses and wires and the machine that goes 'bing'. I chose this picture because it elicits a strong visceral reaction. And to my utter surprise, I joined my audience in the collective inhale. Even with the preparation and practice, even with 7 years distance between living through this event I was hit hard and I took a moment to apologize because I was getting choked up.

When I prepared this talk, I put the following in the notes for the title page: "Combination of hard CS, what I did last summer, catharsis". And that last word was the focal point for me. Catharsis is a cleansing or a purging and that moment of pain 7 years gone by burned far deeper than I had anticipated. I knew that I was intentionally trying to take the audience on an emotional roller coaster and that is perhaps unfair, yet this is a large part of my journey and I can't imagine not presenting it in this context.

And so I have not yet reached enlightenment, but rather than hate the length of time, I'm trying to embrace it and take the journey as it comes and to accept the itinerary, not all of which was my choosing.

The most wonderful thing about attending this reunion is striking up conversations with people who I knew while I was in college and being able to talk about our transformative moments and see the understanding and to share the passion.

Although it can get lost in the day to day trivia of potty training, oppositional behavior, and so on. Alice is a central passion in my life and I can't help but be reminded of this intense feeling that I did not choose to be a father of a child with special needs. Instead, I was chosen to be Alice's father. There are too many coincidences of need dovetailing with my ability to provide to be dismissed as pure happenstance.

There is nothing like some distance and perspective to remind me of the deep love that I have for my family. Yet in presenting this very human aspect of life in the context of a technical presentation, I felt like I had my particular parentage closeted - is this something that you really share? Am I breaking a social boundary by doing this? I think I had the right audience, so in this case the answers to those questions are apparent.

And still I wonder not when I will reach enlightenment but when I will no longer need catharsis.

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