One year ago, we spent that March 19th in shock and in tears, stunned and lost. I can picture every part of that small office and the way I kept gripping and releasing the arm rest of the faux leather couch. I can still see the doctor looking at us, eyes full of understanding, clipboard and notes in his lap. I still remember the calm and kindness in his voice, an even tone but direct and honest and spoken through a chorus of moanful sounds from the J-Man, though I remember few words other than ‘autism’.
My fingers still know how the fabric over Mary’s knee felt as I awkwardly patted her in an uncertain attempt to comfort both her and myself. She was bouncing him up and down trying to calm his overloaded, tired body as he whined, mentally and emotionally exhausted from the evaluation. I remember how I put my flat, left palm across his back – in those days big enough for me to span his entire back – pushing and rubbing in some gesture that lacked any clear purpose other than parental instinct.
I recall thinking, how many times has this doctor had to sit across from parents and tell them this same news? I don’t remember the exact first words out of my mouth after hearing the diagnosis, but I know the meaning behind my question – What do we do now? I wrote down everything he said as if my pen could save us, like maybe I could draw some road to a future we could no longer see.
I remember the plainness of the 70s-era office building and the trees hesitantly coming into bloom outside under a cloudy sky. I can re-feel the sting in my hand from banging my palm on the gear shifter in the car. I can see as much of the way home as the parking lot, but nothing about the drive itself. That road had disappeared too.
I wandered around for a while in our backyard, lost and angry and feeling sorry for myself, probably justifying my self-indulgence by saying over and over how unfair this was to him. I let dread and fear and despair and hopelessness crash through me like terrible waves. I could feel my arms flailing without purpose at everything and nothing, like a man desperately trying not to drown. I remember saying to myself that I was going to kick autism’s ass, not having any idea what that really meant; it was just the first thing that popped into my head.
Then at some point as the clouds yielded a little that afternoon, I could feel something -somewhere right under my sternum – harden like a fist. It didn’t feel like anger or hurt or some odd form of grace. I suppose it was pure, primal resolve. I remember the thought coming to me, He’s the same today as he was yesterday. He is our beloved son and we will do what it takes, even though I had no idea at all what that would mean either.
But on that day, that was enough for me. I went and held him and rocked him and kept saying, everything’s going to be OK, over and over again. It was a mantra at least as much for my benefit as for his, and I still say it often when it’s hard to find any other direction than down.
Things have changed a lot over this past year. My perspective has evolved and grown and in many ways been transformed. But I think I figured out what the point is of observing what I’ll call ‘Diagnosis Day’. We need to remember how we felt. All that hurt and sorrow and anger reminds us of where we started from and how far we’ve come. It helps us to see the same feelings in the eyes of other parents and know how to reach out and comfort them. This is what helps form the foundation of our compassion.
And then there’s remembering that on the morning after the diagnosis, the sun still came up and a new day began, as it has every day since. And he really was just as wonderful and beautiful and perfect as he was the day before, if not even more so, just as continues to be every day. And the resolve at my core grows anew each day as grace slowly and continually seeps into each crack inside me, bringing with it the love and joy to fill and heal the places that were once raw with hurt and anger and grief.
This morning, I was frustrated and exhausted and stressed and frankly scared about all the challenges and changes that are to come. I’m slowly learning to be OK with this since it’s just part of who we are sometimes, but there are days like today where that’s not easy.
But as I look across the room at Mary smiling and rubbing her hand across her tummy over the new wonder growing inside her, and watching our son laugh and smile and spin and say with pride and conviction one of his newly-discovered words, they help me remember that everything really is going to be OK and that I truly am the luckiest man in the world.
by Tim on January 6, 2009
[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]
The 439 Stages of Grief
Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.
Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.
They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.
They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.
We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.
Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.
But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.
This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.
And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.
Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.
And this is the way it begins for all of us, with one, single, determined step.
[click to continue…]
by Mary on March 21, 2008
While I’m trying not to act like the above title (10 points if you know where it’s from. 20 if you sing it!), it’s a little glum around the ol’ Flashlight house these days. We’re still trying to work our way through the stages of grief everyone talks about – and I’m stuck in the anger/despair part.
Really, why does this have to be so hard? I, like all parents, want my child to have an easier life than I have had. I want him to have the good things from my life: to grow up loving to learn, go to college because it’s just what we do, find a wonderful partner like I have, and have beautiful children that I can spoil someday. It reminds me of that line from Steel Magnolias where Julia Roberts’s character says, “I want to sit on the front porch, covered in grandchildren, and say ‘No,’ and ‘Stop that.’” I want him to skip the bad things…
Instead, his life will be immeasurably harder than mine. He will have to work harder at EVERYTHING than I had to. Everything (ok, except peeing while standing up, which I still can’t do unless in the shower… it’s OK, I’m the one who cleans the bathroom).
This changes our lives for the long term. It changes our plans for ourselves (second baby? Moving to the mountains someday?) and our plans for him (doctor? Lawyer? POTUS!?).
Interestingly enough, it doesn’t change our lives for the short term. J-man will still have the same therapies he had before, since he was already in developmental, occupational, and speech therapies. He will still attend the special preschool. He will still pull us to the back door to go out and swing every day. He will still continue to delight us with his smiles and giggles and sense of mischief. He will still be the wonderful boy we know. He will not know the difference that 3 letters can make.
We will though.
