Having a Child with Down Syndrome, Part LXIV: Pride and Shame

Copyright © 2013 Stephen Hawley, all rights reserved.

Last weekend, I went to my 25th college reunion at Oberlin.  It was a wonderful time – so fabulous to see where people have gone with their lives.  At this point, many of us are well in our stride in terms of our professions and it’s great to talk to so many sharp, incisive people with common backgrounds.  When asked about my work, I spoke about how 20 years ago I was helping create Adobe Acrobat and now 20 years later, I’m still working on PDF tools.  When asked about family, it gets challenging.  This is because in my mind, our society is at best indifferent to people with Down syndrome and typically biased against them.  So I have a certain degree of shame that I have a child who is so far out from the norm.  It was difficult to talk to people, even when I knew I was among the most open-minded, considerate thinkers I am likely to encounter in one place.  “Alice”, I said, “is my greatest joy and my greatest challenge.”  And there is so much truth to that.  Both E and I are often stretched to our limits to try to find the right balance between doing what’s right, what’s appropriate, what’s effective and what’s expedient.  It’s rough.  More than once, we have each begged the other, “please don’t die.”

So I found myself feeling like I was using her as a challenge to my peers – “so try to be accepting now!”  Of course they did.  Of course.  What else should I expect?

Today was a ballet recital for Alice.  E has been taking Alice to all her rehearsals, so we decided that I should take her to the performance and be the family in the audience.  E thought it would be nice for me to give instead of living my more typical role of martinet.  This is another thing that bothers me about how I have changed in fatherhood.  I feel like I have become harder and more detached.  I don’t like that.  So it was good to get out of the rut and enjoy that I could just drop her off at the theater before the performance and get a rare solo lunch.

I watched the entire performance and I am so very happy with the work that the PVB has done.  They have built a magnificent program over the past 8 years and Alice has grown with it.  It’s easy to spot Alice in the group.  She’s a little dumpy and because of her stroke she limps, but she was doing every move and really working to hit her marks.  I don’t think the choreography was significantly modified for her.  I shed a single tear watching her.  I’m so proud at how far she has come as a dancer.

At the end of the program, they brought all the dancers out on stage from oldest to youngest and handed out roses to each.  I managed to get some video of Alice’s group as they got their flowers.

 

And I cried again.  Listen carefully – you can hear one voice yell out, “Good job, Alice!”  That was from somewhere in the front of the theater.  So many people in the PVB know Alice and know how hard it must be to dance ballet when you lack gross and fine motor skill on one side of your body.

I could not have been happier.  I helper her get on some street clothes over her tights and leotard and orthotics and shoes.  Normally, I insist that she do as much on her own.  Not today.  I think she deserved a lot of praise and a little reprieve from our usual standards.  One of our house rules for the kids is “do your best” and she had done her best on stage.  We walked a few blocks, holding hands, to Herrel’s and had a little ice cream before heading home.  She’s terrific.

Post Ballet Recital Ice Cream

1 thought on “Having a Child with Down Syndrome, Part LXIV: Pride and Shame

  1. JenML

    Awww, Steve. Great piece. I get it. So lovely for you to be there for her.
    Proud daddy… and (as a teacher) there are so many folks out there who are JUST as proud of her as you and E are. Believe it.
    A well deserved treat, special day with dad. Love it.

    xox

    Reply

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