Monday, April 13, 2015

Why I don't wish that Soren would speak



Some friends and relatives are confused when I say I don't wish that Soren would speak. I have to check myself that I'm not coping by denying my feelings on this issue, but no, I feel at peace with his not speaking.

I do, however, hope that he develops a robust way to communicate.

That distinction has been on my mind lately. I've used the words wish and hope with purpose here, because those two words can convey a lot about my reasoning when it comes to Soren's communication.

To wish is to want something different from reality. Wished-for things are often impossible, or at least unlikely. They indicate something that's not the way things are. I wish I could play the drums. I wish I could be a tennis ace. I wish I had paid more attention in college. (Those statements are all true, by the way.) But they express situations that can't happen, either because they are in the past or because, knowing my skills, they will never happen. (Wishing requires me to remember those lectures about the subjunctive mood--the ones in college that apparently I slept through.)

But hope--hope is something I can get behind. Hope is a positive. It's about the future, and it indicates something I intend to do, if it's at all possible. It's something that could happen if I get all my ducks in a row.

And that's where Soren's language comes in. Perhaps I do wish he hadn't stopped talking, especially on my bad days. But that's a futile exercise. That's the past, it's unclear why it occurred, and no one knows how to bring that language back. But I do hope that Soren expands his communication skills on the iPad. And hoping for that makes me feel optimistic, not sad.

And I think that's why distinguishing wishing and hoping is revealing to me. To wish that Soren would still speak is a selfish one. It's about me, my grief, my ease of moving through life with him, my clinging to the past. But a hope that he progresses in communication is about him. I want him to be able to tell people what he wants, but also what he thinks and how he feels. And this may just be possible, with the right supports (and technology).

I want Soren to be able to tell us when he's mad. I want him to type, to e-mail, if ever so simply. For his sake. This may take ten, twenty years, but I do still think it's possible.

I hope that Soren develops communication that serves his needs (and whims), not just communication that makes the lives of others easier. Soren is a typical seven-year-old in so many ways; I'm pretty sure that being able to say "I'm pissed at you, Mom" would be liberating for him. It would mean he doesn't have to bite his hand bloody when he is frustrated with my demands. Other kids get to say "I hate you, Mom." They are probably punished for saying so, but still, their lips can form those words. I haven't added hate to Soren's iPad vocabulary. Maybe I should. I'm sure I said those words at seven (and got a swift timeout, too).

I dearly hope that some day Soren will form highly inappropriate sentences on his iPad. If--no, when--that happens, don't be surprised that I'm smiling.

Monday, April 6, 2015

Mend my life


This has been a tough week. I got news that a big life change that I was hoping for isn't going to happen. I feel like I'm flailing, trying to get a grip on what my future will look like without this dream. I don't know what to do next or how to fill the hole that the dream had occupied. (Oh my, that sounded particularly melodramatic. It's kind of my theme this week.)

By chance, this poem appeared in some newsfeed or timeline of mine this week. I had read this poem before, but it seems to be especially relevant this week. I can't stop reading it.

The Journey
by Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice—
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world
determined to do
the only thing you could do—
determined to save
the only life you could save.
 

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