We have concluded our annual vacation to Yellowstone National Park. It rained, a lot, which made for stunning, moody landscapes. It was cold, green, and lovely.
And now I am exhausted. I hardly have enough energy to drag myself around the house daily what with this grief that’s strapped to my back/heart/feet. But Yellowstone is a busy trip, full of hiking and traipsing around the enormous park. So I hiked and walked and drove and experienced, hence, the weariness.
Though Jack hasn’t traveled with us for some time, autism still goes on all our trips. Charlie and Truman are higher functioning and verbal, so it’s not the same level of difficulty. But the rigidity of autism remains, as do the meltdowns over transitions, the need for flexibility, and ongoing sensory challenges. My younger boys are able to do so much more, comparatively, so I haven’t written as much about their idiosyncrasies. Talking about their issues, which are milder but nevertheless real and problematic, feels … I don’t know. Like whining, I guess?
We have adjusted our family life to cope with the sensory and learning needs of our little boys. While it isn’t necessarily easy, it’s part of our routine. We expect it. We plan for it. We address it as needed. I suppose it doesn’t feel as much like a story to tell because it’s our every day and we are used to it.
A woman from Brisbane, Australia messaged me this week. She began reading our story around the time of Jack’s placement in his new home. She mentioned something that I keep pondering, because I don’t have a definitive answer for it, at least not yet.
“As an outsider looking in, who only has the details you’ve chosen to share publicly about your life, I’m most astounded by the way in which you normalised (for want of a better word) behaviours and experiences that are anything but. I’m curious to know if that is a choice you make or if it is an organic part of the process of parenting a child with special needs? Perhaps that’s what acceptance is all about…” –Michelle H.
I really appreciate this thoughtful and honest question from Michelle. I’m still wrestling with it, so how better to find resolution than through writing, bahaha. I’ll figure it out on the page/screen as I go.
My first response when I read Michelle’s message was to ask myself, “Are we really that strange?” which I quickly answered in my mind, in two parts.
1. Of course our experience is way outside of normal. I’ve known this for some time. Placing your thirteen-year-old in a group home permanently, and all the preceding years of trauma leading up to it, are not common milestones. Jack is quintessentially special. We are unique because of him.
2. My ability to write about our life only happened a) when God told me to start writing about it and I decided to listen, and b) I began to work through my shame at our differences and if not accept them, then at least acknowledge and name them.
This is when I began the real work of plumbing the depths of our very different life experiences, first from a humor perspective (look how weird our life is, also here are a few crazy stories to illustrate, wow that’s nuts, *insert self-deprecating vignettes* hahahahaha) and then from a spiritual perspective (wherein I talk about Jesus as the buoy that has kept me afloat in my ocean of suffering).
But if I’m being completely truthful, with myself and with Michelle, I don’t know if this process was a choice, or if it was an evolution of thought leading to acceptance.
When mental and behavioral disabilities dictate the daily reality, they are simply always there. They are the elephant in the room, which I suppose I saw no reason to pretend to ignore. Just because the elephant isn’t in everyone’s room, doesn’t make the elephant plodding through my kitchen any less real.
I write about our elephant.
And why not, honestly? If we all had huge, stinky, wrinkly elephants as house pets, it wouldn’t be unique. Because we have lived with an elephant, so to speak, it’s an unusual story, and some people have been drawn to it.
Another comment which I’ve heard a fair number of times is, “You are brave to write this.”
I don’t know how to take this one.
Does this mean “you are brave because that’s some crazy shiz that regular people don’t talk about” or does it mean, “you are brave because those are hard things to admit out loud” or is more “you are brave because regular people don’t (and maybe shouldn’t) talk about those things?” Or are all of these scenarios variations of the same statement?
It’s a conundrum. The “you are brave to write this” comments are compliments, but they’re also a tad abrasive to me as a writer and a woman who has lived through completely abnormal parenting and family situations. For some (probably unintentional) reason, it makes me feel even more other.
Of course, if it weren’t for our otherness, I probably wouldn’t have anything to say. I don’t write novels. This is creative nonfiction. I write my life’s story which I have always said is stranger than fiction. You honestly can’t make this stuff up, unless you’re God, planning out my life hahaha. He gave me a figurative elephant and spurred me to write about what it’s like living with a pachyderm in your presence.
According to the playwright Lorraine Hansberry, “The thing that makes you exceptional, if you are at all, is inevitably that which must also make you lonely.”
To this, I say, we are all exceptional in different ways, and thus, as my friend Beck puts it, living on opposite sides of the same loneliness coin. Our different forms of pain isolate us, but the fact remains that we all have pain. It is our common denominator as humans.
Jack has taught me many things about living, and perhaps the foremost is this:
We all experience suffering, sadness, disappointment, heartache. The beauty of pain is that it softens us, compelling us to look inside ourselves and ask the big, metaphysical questions as we wonder why and how and also really? why our lives must be as they are.
My suffering has been as a hand drawing back a drape to reveal the Savior right here, next to me, as I dodge the elephant, write about it, and keep wondering why.
Jesus is beside me, and because Jack is my son, I can see this.