Tuesday, January 18, 2011

The road sometimes chosen (sometimes given)

Sunday afternoon I was surfing through high school web sites -- Dancer will be in 8th grade next year -- when I accidentally clicked on the name of a very good all-boys school. I'd been looking at girls' schools, so I stared stupidly at the photos trying to figure out what was going on. And then, just as I realized my mistake, an avalanche hit me: Big Guy belongs in a school like that. In a split second I tumbled down and over a slope of grief until I landed, huddled, snowed in by unexpected feelings. My very bright son will never attend any high school other than a therapeutic one.
When you have a child with significant special needs, every now and then you get mugged by what might have been. This happens even after you've learned to value what you have instead of mourn what you don't. It happens even if what you have been deprived of was neither a right nor a possession, but only a wish. I wonder if there are losses of omission as well as of commission, or if it just feels that way.

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When Big Guy was five and things didn't go the way he liked, he wanted to rewind and start again. If we were walking down the street he'd literally run back to where the problem began. It was cute -- except after a while it wasn't. He was unwilling, or perhaps unable, to live with consequences.

Real life is different from reel life: our choices move us to new places, and although there are choices there also, they aren't always the same as the ones we had at first. We can ask what next? from wherever we are, but we can't rewind to where we were.

There are times we wonder, miles down the road, what life would have been like had we chosen another path. We ask ourselves whether, as Robert Frost said, another road would have made 'all the difference'. Given the odd turns and unexpected detours of life, I think it's pretty clear that no road leads us exactly where we think it will. When we consider the road we didn't choose, we need to remember there would have been other things on it to make us happy and unhappy, some dreams fulfilled and others unfulfilled, different joys and disappointments in ourselves and our lives. It's highly unlikely that choosing one road in the wood over another will bring us complete contentment. Roads aren't the route to peace; that journey only happens in our hearts.

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I do wonder what our family would have been like had Big Guy not developed such serious problems. I can remember what it was like in the early years of his life, before his world cracked and crumbled. Eldest remembers, too, and surprisingly so does Dancer. Little Guy and Snuggler have not known life outside their brother's long shadow, except in these four months he has been away. It is interesting, and sometimes painful, to watch them discover a new definition of normal, one where consistent sibling behavior is a fairly reliable commodity.
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Life doesn't always hand us what's comfortable, or dole out problems at convenient times. The first time Big Guy was hospitalized his friend's mom said, "It's not fair that my son has to know about things like this at this age!" I stared at her silently, wondering how she expected me to respond. Is there a good way to learn about mental illness? Is there a right age to learn about it? Do we have a choice about the timing of crises?

Yes, I wish things had been different. I wish my other children had not had to suffer so much. I wish there had been other, less painful ways to teach them how to grow in compassion and coping skills and the ability to forgive. I wish life had been easier for all of us. I wish we'd had some way of knowing what the right thing to do was at each intersection of Big Guy's care.

And yet I don't regret anything. We have done the best we could. We have become more resourceful, more knowledgeable, more understanding, and more attuned to what's important in life with each passing year. I have learned where my weaknesses lie, both in my personality and in my faith. Perhaps an easier path would not have taught me these things. If I stood at the divergence of two roads in the wood today, one holding out the seeming promise of painless parenting, and one containing a rocky path to teaching my kids things that are really important, which one would I choose?

Which one would you?


  1. When I was in the hospital last winter with "the itis," I asked Doug to bring Zeke to visit me. They didn't come until I was out of the ER and into a room, because Zeke said, "I don't want to see all that suffering."

    And that was the first time I realized how much he has seen on our many trips to the ER with his asthma.

    Not learning about a lot of tough stuff is a luxury often afforded to middle-class white children. Not always, but sometimes. I shield my kid from news of violence, even as children in other countries have to live with it on a daily basis. I talk to my kid about race and racism, but there's a lot I leave out -- for now.

    I don't know that I have a point. But I do think the friend's mother's comment was insensitive, and fairly appallingly so.

  2. I agree with Heide that the comment was appallingly insensitive. On a different tack, what if it was HER son with the illness instead if just "learning about it"? You and Big Guy have my prayers.

  3. To give that mom credit, once she wrapped her head around the depth of Big Guy's troubles, she was incredibly understanding and supportive through a very, very difficult time. So that one comment stands out in my memory both because it was jarring and because it was an anomaly withing a strong and true friendship.

  4. i can relate to this not as a parent but as one who has walked the road of divorce (not by choice) ....tho i would NEVER (in a million years) have chosen the road....i wouldn't change it either....

  5. As a mom to a special needs kid and another I so recognize the juggling between the differences between what my friends are expecting for their kids and what I'm expecting for each of my kids.

    I've been grateful that my daughter says she realizes the blessings from having a brother who has taught her so much - including how to deal with his special need matters.

  6. Being this is the first time reading your blog Julia, I had no idea that there was a problem with "big guy." I absolutely look forward to any written words that you or Andrew write in the Daily Guideposts. You are so "down to earth" where one can truly relate. Your family life is unique & always full of activity. Thank you for being so open in sharing your life with us. You are a blessing!

  7. Our oldest daughter has very similar challenges. Last Summer we rented a beach house for a few days. A strange fluke of visitation rescheduling, a court mandated hospital stay for the oldest, and a last minute Summer camp left us with only one kid! Wow--talk about a Twilight Zone divergence! I was kind of sad, but ended up getting to really know my 13 year old daughter all over again. We had never really appreciated the shadow she's lived in all her life. She's pretty cool. The trip built a neat foundation we've needed for a tough year.