I remember every single first visit. The pediatric neurologist. The waiting room at St. Luke’s. The long hallways at the Early Intervention school. The small rooms at ABA therapy. I can tell you that the neurologist’s office was painfully quiet and smelled like antiseptic, and the waiting room at St. Luke’s had amazing acoustics – I could hear everything the providers were telling other parents, which in this context probably makes them terrible acoustics. The long hallways at the Early Intervention school were filled with children and a mixture of laughter and tears, depending on so many things. And the small rooms at ABA therapy were suffocating, too small for a two-year old who spent the entire first month trying to escape them.
I remember these places so well, because every time we stepped foot in one of them for the first time, I remember feeling afraid. These are places where the hurting go: the disabled, the sick, the unexplainable. The struggling children and the angry or denying or devastated parents, we all gather in those places, but not one of us chose to be there. Reluctance makes for an awkward ambience at any gathering, and “waiting room parents” know that feeling well.
I don’t want this life. That’s honestly what I thought for so many months. And I didn’t. I didn’t want to see so much hurting – some of it far, far more than we were experiencing. I didn’t like the mysterious sounds coming from children I didn’t know. I didn’t like seeing the tiny wheelchairs and walkers and weighted vests and helmets, each of them designed to help, but looking so incredibly ominous in such miniature proportions. And when the therapist working with the little boy who shared a therapy room with Cannon would spend five, ten, fifteen minutes patiently trying to get that precious one-year-old to physically pick up a cheerio with his own fingers, it was all I could do not to cry out loud.
From where I was at that point, my heart and mind resisted the thought that this world would become our normal; that we would spend so much time every day in the hallways and the waiting rooms and the small offices, where the kids make strange noises and the visible struggles of everyone around you are so profound. So I resisted; with all my might I resisted. When you’re afraid, fear forces you to resist.
But God. (It always comes back to those two words, doesn’t it?) He is far too kind to leave us where we are. He cares too much about His name and His glory in the world to leave his followers in a perpetual state of resistance. So, He moves us forward, one fear, one embarrassment, one moment of surviving a runaway attempt or a meltdown or a really bad day at a time.
The days go by. Then the months. We showed up again and again and learned when to push and when to rest. And at some point, resistance has given way to embrace. Not always, and not perfectly – I wrote just a few months ago about the days I still wish it was different, and I think I will always have those days. Still, even if it is not perfect, it is certain. It didn’t happen overnight, but I began walking those hallways and meeting the eyes of other parents in the waiting rooms and I didn’t feel the ‘I don’t want this life’ feelings anymore, but something different entirely. I felt certain of God, and certain of His Sovereignty, and certain of His ability to heal or take away, to give progress or allow a back step, but to sustain our days no matter what. It was as if God pried my clenched fists open, whispering, “Katie, you have no idea the profound gifts that await you on this journey,” as He did.
And He was right. He’s always right.
Cannon’s autism is mysterious and difficult in so many ways, and I would be naïve to think that all of our hardest moments are behind is. He still has trouble with brand new things and we still live a lot of days on our toes ready for the worst at any time. To the outside observer, it may be hard to see anything other than a little boy who doesn’t talk much. But just like we are not the parents who walked those once scary hallways two years ago, he is not the little boy who hated them two years ago. He’s incredible: finding his bravery a little more all the time, embracing his siblings, having sleepovers with his sister and laughing in the bathtub with them rather than getting out as soon as they hop in. On a July weekend with friends two years ago he would not go near the water if others were in it, and Alex and I took turns following our little wanderer around because we didn’t know what else to possibly do. This week he swam in the pool for over an hour surrounded by kids, getting out only to grab Alex or me by the hand and bring us toward the pool, signaling that we were to get in the water so he could jump to us.
If you want to know whether or not I believe in miracles, I do.
The summertime always makes me nostalgic about our journey, because it was the summer two years ago that wrecked me. I’ve been up and down, hopeful and completely out of hope. I’ve felt like a million dollars on good days and cried my eyes out on others. I’ve grabbed my husband around the neck and squealed with delight, “can you believe these kids are ours?”, and I’ve fought with him irrationally about how we should handle something the very next day. My emotions could be described in a lot of ways, but reliable is not one of them. There has never been a season of life when I’ve understood my need for a God who doesn’t change like the last two years, when I have done nothing but change – and still do. But one thing I know today that I didn’t know two years ago: you won’t stay where you are. You’ll get stronger, and braver. You’ll have more peace than anxiety. You’ll be able to talk without crying – really, you will. And then you’ll still cry a lot because the reminders that life will not be easy for your little one are everywhere, and it’s perfectly ok to do that. But the fear will abate, and the hard work founded on faith in a big God will take over. And you’ll look at your life that can feel so different from everyone around you, but you’ll get humble and realize we all have the same trajectory: get smaller, let God get bigger.
And then, you'll keep showing up.