And I'm falling

© Jessie Kirk Photography 

I thought I was doing so well. I wrote posts about why my son's cerebral palsy is awesome. I celebrated his milestones. I even very nearly forgot to compare him to his twin brother.

Then a week like this one happens, and I realize — once again — that I still haven't really accepted Malachi's disability. I just was operating under the baseless assumption that it will be mild enough to not significantly impact his life.

This week started with their first birthday. A day that, by all rights, should have come much later in the year.

Then on Tuesday, we starved Malachi until we could feed him barium in a scary room with a video x-ray machine. This test told us that his food has to be the consistency of honey before he can swallow it without it leaking into his airway. The feeding specialist tells us this is a condition that will get worse over time, not better, because his neck will elongate and make it harder for him to coordinate those muscles.

It's impossible for me to imagine a 5-year-old being unable to drink juice. Correction: It's impossible for me to imagine a walking, talking, relatively independent 5-year-old who is unable to drink juice.

The next morning, desperate for good news, I did a really stupid thing. I asked our physical therapist whether he thought we could rule out wheelchairs yet. He was very diplomatic, but the short answer was no.

I had thought that Malachi was doing well, all things considered. The therapists always seem surprised at the progress he's making. He is manipulating objects with his hands much better, he is just beginning to prop sit and stand at tables for a few seconds by himself. He curls his body on occasion instead of extending. He is getting his legs higher and higher in the air. All of these things can only improve with time and by next year, certainly he will have mastered them, right?

What the therapist alluded to, in his very kind manner, was that Malachi might not have the stamina to walk for very long. I had been so focused on the mechanics of walking that I hadn't considered at all the idea that it might be simply too much work for him to fight his body all the time.

My rose-colored glasses came off. I saw a boy who often sits like a lump on a log while his brother almost constantly wiggles, squirms, kicks and shouts. I saw a boy who prefers to lay — limp and slack-jawed — in the arms of an adult instead of playing with toys. I saw a boy who continues to simply scream during tummy time even though I know he knows how to roll over.

But I could still hear the stories from other mothers ringing in my ears:
"Our therapist thought he would never walk because his muscles were so tight,"
"Our son is 1 1/2 and doing so well we've cut back on therapy,"
and my own personal favorite: "Now he can run almost as fast as his brother."

Run. Almost as fast. As his brother.

With those assurances to myself, we drove to yet another neurodevelopmental center to get an evaluation for a new therapy. There, the PT room had a couple other groupings of babies, therapists and parents. I actually liked not having a private room like we always do. It was great to see other babies also getting treatment as it made me feel less like I was the only person in the world having to go through this.

But after a while I realized that those babies were what mild CP looked like and that was not what Malachi looked like. This baby leaned a little to the left when he sat by himself on the floor, but he was sitting by himself on the floor. And that baby couldn't quite turn a corner while creeping along a table, but he was creeping along a table. Meanwhile, Malachi drooped in his therapist's arms like a spent wind-up doll.

I drove home depressed and wondering how I had found my way back to shattered expectations. I was doing so well, I thought. I had accepted this, hadn't I?

No. I hadn't. I had only fooled myself into thinking his CP would be quirky, not life-threatening, like the x-ray showed, or significantly impairing, as having a wheelchair would be. Thinking it's not going to be that bad isn't the same thing as moving on from accepting that it's going to be that bad.

Just as if the universe wanted to drive home that point with a battering ram, the next day I unexpectedly found myself in the house of a woman with identical twin boys about the same developmental age as mine. After months of carefully avoiding such encounters, I was faced with watching two adorable boys sitting and rolling and crawling all over each other, just like mine were supposed to have been.

I feel like I keep getting kicked down stairs. I reach a landing, cry about how far I've fallen and how much my bruises hurt, but then I get up again, look around and bravely say: "Well, it's not that dark here, and look! There's so many more stairs down there! At least I didn't fall that far." And just as I bend over to stencil in Home Sweet Home on my lovely not-so-dark stair, someone kicks me again.

And I'm falling.

I think what I'm supposed to do is ignore my need to own that stair, to stencil in Home Sweet Home. But then what? Do I just sit there on my cold, dark, gray stair, alone and empty? Or perhaps I'm supposed to find my way off that staircase, out into the nothingness beyond?

Well, I don't know how to get off and I don't know what's out there if I do. I can't help but feeling there are just more staircases.

But what I can say is that I spend a lot less time crying at each landing before I pick myself up and look around.

That's got to count for something.