A Week of Forevers

This week was a mixed bag. Or maybe, a grab bag. I guess I don’t really know what it was but I’m confident the word bag should be included. Maybe.

It was hard and good, happy and hopeless, hopeful and unrelenting, energized and bone-weary.

It simultaneously flew by and seemed like it would never end. In short, it was a normal week. Our new normal, anyway.

On any given day I felt that our life was certain to be filled with nothing but trying to push our sweet boy up hills he might not even care to be at the top of. This thought made me feel exhausted. And scared.

On any given day I felt overwhelmed with worry about how hard it will be to help my little guy master basic things, like using a fork for example. I handed Rae one the other day and she proceeded to effortlessly use it to eat everything off her tray. She had never used one before, but I guess she had been watching us all along and was patiently waiting for her turn to try.

I should have been able to simply clap for her and smile since yet another accomplishment was checked off her “big girl” to-do list.

I did smile, and clap. But, I also felt sad. . . and maybe even a twinge more frightened.

Actually, I felt absolutely knocked down.

I felt afraid and overwhelmed for my Ryan thinking of how impossibly far off a task like that seems for him right now.

Watching the ease at which she mimicked and mastered this new task, I felt the weight of each of the steps involved in something so seemingly simple.

Being comfortable with foods (Ryan only eats four or five), imitating others, seeing the need to take the longer road to get food into your mouth when hands are faster, and sitting near other people who are eating. (the sound or sight of others eating is completely intolerable to him).

I sat in that sort of fear for a few days. I let myself go to the place I try so hard to avoid. I read things that confirmed my fears.

In our community, they aren’t ever hard to find. Mothers who are dealing with the most exhausting and frustrating parts of autism. I thought, yes. This.

This is real, and this is forever.

Once again, I felt unnerved by all the parents only pointing out the happiness and hope, the acceptance and the celebration of differences.

My little boy is struggling. He can’t use his words. None of them. Even though I know he has so many.

Life inflicted its own vow of silence on him before he could even ask any questions.

Can you even begin to imagine?

Then, the sadness reminded me to re-focus our efforts. I made appointments, reached out, and tried to pare down our list of goals to the current essentials.

Hell, I even bought bubbles.

If you hang around our house much you will learn why bubbles are a last resort. Ryan loves them . . . entirely too much.

Once they are in the house, nothing happens other than blowing bubbles.

Seriously, nothing.

We become zombie slaves to bubbles.

Have you ever blown bubbles for four hours straight? We have. We work in shifts.

Also, our little guy doesn’t usually let us sit while we blow them. He wants us to stand. The bubbles fall in the light better that way.

But guess what? Now he has a word again. Bubbles.

We made him work for all those bubbles. He also started saying, “come on” again.  So now we have TWO things. Two that weren’t there before. And that’s just this week.

Here’s the thing about sadness though.

Other than reminding me to re-focus our efforts, the sadness didn’t do any good for anyone. Not for me, not for other people, and certainly not for Ryan.

We have plenty of hard days. Believe me. But, even though they’re real and even though they’re not going away, they’re not even the tiniest bit more real than all the happiness.

They aren’t more real than all the happy squeaks and the dancing hello, the belly laughs at pillow fights, and they sure as hell aren’t more real than big marching shadows in the sun.

Mary Oliver, one of my favorite poets, died this week. Among many other things I love her for, she defined prayer as paying close attention.

Praying

It doesn’t have to be
the blue iris, it could be
weeds in a vacant lot, or a few
small stones; just
pay attention, then patch

a few words together and don’t try
to make them elaborate, this isn’t
a contest but the doorway

into thanks, and a silence in which
another voice may speak.

— Mary Oliver

Which reminded me, paying close attention to all the hard parts isn’t the prayer I want to voice for my little guy. That, without a shred of doubt, isn’t the kind of prayer I want him to see me spending time on. I want to err on the doorway into thanks part.

I want the voice I make room for to be one of joy.

In the autism community, writing about the joys might make me sound pretty trite. Because so much of our lives and the lives of our children is just so damned hard. But,

I’m willing to risk sounding trite.

I won’t spend our time together paying too close attention to the hard parts.

If I hadn’t been ready to pay attention to the joy yesterday, I would have missed seeing the joy on Ryan’s face after he put one tentative little leg over his wooden scooter for the first time.

I’ve shed tears over the lack of use most of his toys have gotten. Lots of them. Some days, I have thought it would best to get rid of them, so they aren’t some sort of painful reminder.

After all, he’ll never use them. . .

Just being honest. Right?

Then, one day.

One day when he was ready, he decided to put his careful little leg over the back of the scooter.

And sit.

And SCOOT, for God’s sake.

We celebrated (but not too loudly, because our guy likes medium celebrations). We took pictures. We were a veritable paparazzi of joy.

And that was just yesterday. Who knows what other things will surely “never” happen that Ryan will suddenly decide to do. Who knows when joy will suddenly burst through the crack in the door.

I’ll try my best to keep watching out for joy. To never decide what’s impossible. To pay close attention to the good parts and keep the doorway open.

After all, this is real. This is forever. And none of us are getting out of here alive.

Written by, Sarah Wenger

I am a teacher at a title I school in Baltimore. I have five children. My almost three year old, Johnny, was diagnosed with autism at 18 months through Kennedy Krieger. I’m a busy mom, teacher, graduate student, runner, and writer. You can follow our journey on our blog, Love Beyond Words and on Facebook at https://www.facebook.com/ourlovebeyondwords/.

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