There came a point with Kreed where we couldn’t be angry at our life. Kreed’s life was a thousand times harder than we could imagine. Anger wasn’t useful but if we instead focused on what we could teach him to be more successful in his life and love his life, then our life would also improve. We couldn’t change the fact life was hard for him, but we could do everything in our power to make things better. To give him a life he would love. Because we aren’t promised tomorrow. And tomorrow didn’t come one day for him and I’m so thankful we chose life and live over anger and hopelessness.
So he wouldn’t speak out of his mouth, or be independent with daily living skills. But he would tube on a river. He would use a device to tell me the things he loved. He would do a thousand other things, most of which people said he would never do.
Autism didn’t mean the end of hope. It didn’t need to be some profound loss. Profound loss is having them lose their tomorrow’s. It’s a world where we get to take our children and show them how to live. To do the things that make them happy.
We also never felt sorry for ourselves. We could do things Kreed would never be able to do and live an independent life. To speak everything we are thinking out of our mouth and not relying on a machine and having to be taught how to say all the things in our head. How could we feel sorry for ourselves when there is this sweet boy in front of us that needed to be shown the world and how to co-exist within it, with the majority of people never understanding him. We couldn’t change the world for him. And we didn’t want to change who he was. But we could teach him to be happy to exist in this world. And in the end, I think we very much gave him a happy existence.
Did Kreed rage with a rage I’ve still never seen from anyone else on this earth, yes. But those were moments. Moments of immense pain and suffering. And when they were over, our boy was still here wondering what we were doing next. He didn’t wait to see if his rage affected me in some way. His moment was over and he lived through it and was grateful and ready to eat as many French fries as I would let him. He was the true essence of living moment by moment. So we didn’t get caught up in the anger and the hurt at our life or the moments I had to do things no parent should have to do with their kids and the restraints I had to learn to keep him safe. But it was what it was and when it was over, it was back to the living that needed to be done.
And now that our boy ran out of tomorrow’s, I have an endless amount of days to ponder our life and what we did...or didn’t do. But I have far less regrets than most. I regret not dressing him up in a tux and taking him to a fancy meal, just because. I regret not taking him twice a year to my parents for tubing on the river instead of just once. I regret not having the chance to take him white water rafting.
But I don’t regret the life we lived and the things we had to do to get him to a happy state with this world. I never cared about the stares from people when I had to teach him that eating out at a restaurant was a fun thing or shopping at a store meant getting his food or stuff too. Even when he decked me over and over in parking lots and I kept taking him back over and over until the day he was like oh- I don’t need to fight you here- this place is the bomb. And the moment he realized that grocery stores carried avocados that made “guacamole.” He realized this place, this world didn’t need to be an unknown. That it could be okay. And he got a shit ton more if he went to the store with me haha.
The better we made his life, the better our life was. And the more he taught us. About living in the moment. The beauty of nature. The depths of our soul.
And now, now all I have is time. To think. Reflect. Live.
And try to remember that anger shouldn’t have a place at the table today. Our boy did live one hell of a life. And while regret does eat at me for the medical things I know was missed and I didn’t know enough until it was too late, I have to remember these are moments. There are times for these moments but then I need to pick myself up and rejoin the living world. And sometimes I wonder if this is what nature did for our boy. The connection he had to this natural world, straight out of Mary Oliver’s poems, kept him grounded in a way I’ll never understand but I try to.
Grief is not linear. And it’s not a plural experience. It’s singular, meant for each person alone. This is mine. My way through the pain and hell of losing this amazing boy who has the power to change lives and teach us things I still can’t comprehend.
And this is my moment today. Amongst these trees. This sun. These rocks. This bird. This deer.
My work is loving the world.
Here the sunflowers, there the hummingbird -
equal seekers of sweetness.
Here the quickening yeast; there the blue plums.
Here the clam deep in the speckled sand.
Are my boots old? Is my coat torn?
Am I no longer young, and still not half-perfect? Let me
keep my mind on what matters,
which is my work,
which is mostly standing still and learning to be
The phoebe, the delphinium.
The sheep in the pasture, and the pasture.
Which is mostly rejoicing, since all ingredients are here,
which is gratitude, to be given a mind and a heart
and these body-clothes,
a mouth with which to give shouts of joy
to the moth and the wren, to the sleepy dug-up clam,
telling them all, over and over, how it is
that we live forever.
- The Messenger, Mary Oliver