“Could we with ink the ocean fill
And were the skies of parchment made
Were every stalk on earth a quill
And every man a scribe by trade
To write the love of God above
Would drain the ocean dry
Nor could the scroll contain the whole
Though stretched from sky to sky”
~The Love of God (my favorite hymn)
I help Hope into her satin-y red dress, stand her in front of the mirror and fuss with her soft curls, while trying to keep my heart in my chest.
Her father calls “Time to go!” and I rush her downstairs and into her best shoes and coat. I kiss her cheek and she’s dashes for the door.
She’s been practicing “Away in a Manger” for weeks, and tonight is the big night. The school Christmas concert.
And I am missing it.
My thoughtful friend – her daughter also in the concert – had called days before wondering about our plans and how she could help. B’s going to go, and I’ll stay home with Rhema, I tell her. I don’t want him to miss it.
A long night. In a church. Lots of children and adults. All kinds of sights and sounds. The expectation to sit quietly through it all. A bit too much to ask of our Rhema-girl right now.
At least one of us could enjoy it, that was my reasoning. I should have planned ahead and asked for help, got babysitting. But I just didn’t expect to feel the overwhelming longing, sadness and yes, resentment toward the autism, as they hurry out and the basement door slams shut.
I walk up the stairs slowly, aware of the fact that my big girl had been out of my sight too long, but I take my time, my own little rebellion.
I come upon a small flood. The child in a tub full of water silently dumping pails of it onto the floor, as if she’s going under. And I just watch her for a while wondering how many more nights… how many more years like this autism will isolate her and dump on me and make parents choose between their children.
She steps out of the tub at one end, runs to the other end and jumps back in the tub. Then out, then in, then out, then in, sloshing water as she goes.
Any other mother out there staying home tonight because her child has a developmental disability?
Is it just me and my strange girl and our chaos?
Later, after the bath rugs are thrown in the wash and towels are on the floor, I coax her to sit in my lap for a few moments. She puts her face close to mine and breathes heavy. That’s her best, sweetest version of a kiss; her love refreshing me.
“I belong to you,” I say.
(I’m never sure if she’s listening or understanding or even interested, but sometimes she’s the best person to talk to.)
“I heard a song today that made me think of you. It’s based on a Bible verse that says nothing can separate us from God’s great love for us. Not anything in this world! Not the present or the future, not angels or demons, not height nor depth, not the worst sins, not hardship, not pain, not sorrow, not even death can do it. That means so much to me, Rhema, when I think about my life and things I’ve done. That He loves me still, anyway, even though.
I can’t even make sense of that kind of faithful, unending love. But God gave me a taste of it when He gave me to you and Hope.
Because nothing can separate you from my love. Not silence or distance. Not stimming, flopping, bolting. Not poop art. Not floods or any form of destruction. Not aggressions and regressions. Not lost opportunities. Not stares in public. Not a million school consults and IEP meetings and therapy appointments. Not broken dreams, not heartache. Not weakness or failure. Not the present or the future. Not highs or lows. Not trouble now or ever. Nothing can take you from my great love.
I belong to you.”