Wednesday, July 11, 2018

Grief is Not Linear

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

Monday, July 2, 2018

Ramble Home

“Pay attention. Be astonished. And tell about it. We’re soaked in distractions. The world didn’t have to be beautiful. We can and should think about that beauty and be grateful.” - Mary Oliver

The world was just too busy. Is too busy. Sometimes you need to take a step back and come back to the natural world. I went off line. Kreed’s Page went off line. I know many noticed, but for a moment in time, we needed to step back to ourselves without feeling the weight of the world. Of grief. Of memories. Of here and there and being pulled everywhere. 

I needed to notice more. Feel more. See more. Be more. Connect again. 

If Kreed taught us anything, it was to love this world that we live in and do more than just breathe a little. But take in the scent of the pine and aspen, sunflowers and daisy’s. Stand in awe at the majestic mountains before us and feel at peace with ourselves. 

It’s amazing what you notice when you listen without all the noise of the world. Kreed was connected to this world in a way most of us could only dream of. He was able to just be himself without the noise of the world. Without the weight of the world. With all the joy he could muster. I lived that life with him when he was here and what a world we created and enjoyed. The adventures we went on. The things we dreamed up to do. He taught me to dream and to be wild and free. He taught all of us. 

And I want to continue to honor his memory. His legacy. He will not be forgotten. His journey will not have been in vain. But it always means I need to remember to be connected, to filter out the noise of this world, to remember what’s important. 

“When I walk out into the world, I take no thoughts with me.  That’s not easy, but you can learn to do it.  An empty mind is hungry, so you can look at everything longer, and closer.  Don’t hum!  When you listen with empty ears, you hear more.  And this is the core of the secret:  Attention is the beginning of devotion.”

- Attention, Mary Oliver

My attention was pushed and pulled and spun around until I didn’t know which way was up. But this time away, I gave my attention to the things that needed attention. I gave myself to this world, listening in a way I had not listened before. 

And now here we are, rambling back home. This page is a home in a way. Kreed’s memory still rings strong and true here. You all watched him grow up into such an amazing young man and then watched him fight for the life he so loved. Now we talk about his life and our grief and the ways in which we grieve. The story of our grief is not a story I ever wanted to tell, but it is our life and our life with Kreed now. It is the truth, as it always has been about him.  

So here we are returning, listening in a different way, grieving still but continuing onward. And remembering our boy and honoring his life. 

Have You Ever Tried to Enter the Long Black Branches?

by Mary Oliver

Have you ever tried to enter the long black branches of other lives --
tried to imagine what the crisp fringes, full of honey, hanging
from the branches of the young locust trees, in early morning, feel like?

Do you think this world was only an entertainment for you?

Never to enter the sea and notice how the water divides
with perfect courtesy, to let you in!
Never to lie down on the grass, as though you were the grass!
Never to leap to the air as you open your wings over the dark acorn of your heart!

No wonder we hear, in your mournful voice, the complaint
that something is missing from your life!

Who can open the door who does not reach for the latch?
Who can travel the miles who does not put one foot
in front of the other, all attentive to what presents itself
Who will behold the inner chamber who has not observed
with admiration, even with rapture, the outer stone?

Well, there is time left --
fields everywhere invite you into them.

And who will care, who will chide you if you wander away
from wherever you are, to look for your soul?

Quickly, then, get up, put on your coat, leave your desk!

To put one's foot into the door of the grass, which is
the mystery, which is death as well as life, and
not be afraid!

To set one's foot in the door of death, and be overcome
with amazement!

To sit down in front of the weeds, and imagine
god the ten-fingered, sailing out of his house of straw,
nodding this way and that way, to the flowers of the
present hour,
to the song falling out of the mockingbird's pink mouth,
to the tippets of the honeysuckle, that have opened

in the night

To sit down, like a weed among weeds, and rustle in the wind!

Listen, are you breathing just a little, and calling it a life?

While the soul, after all, is only a window,

and the opening of the window no more difficult
than the wakening from a little sleep.

Only last week I went out among the thorns and said
to the wild roses:
deny me not,
     but suffer my devotion.
Then, all afternoon, I sat among them. Maybe

I even heard a curl or two of music, damp and rouge red,
hurrying from their stubby buds, from their delicate watery bodies.

For how long will you continue to listen to those dark shouters,
caution and prudence?
Fall in! Fall in!

A woman standing in the weeds.
A small boat flounders in the deep waves, and what's coming next
is coming with its own heave and grace.

Meanwhile, once in a while, I have chanced, among the quick things,
upon the immutable.
What more could one ask?

And I would touch the faces of the daises,
and I would bow down
to think about it.

That was then, which hasn't ended yet.

Now the sun begins to swing down. Under the peach-light,
I cross the fields and the dunes, I follow the ocean's edge.

I climb, I backtrack.
I float.
I ramble my way home.

- Mary Oliver

Wednesday, June 27, 2018

Love what you love

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body 
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting –
over and over announcing your place
in the family of things.
- Wild Geese, Mary Oliver

I think about this poem a lot. And Kreed. And the love he had for this world. The way in which he lived in this world. And I think of other kids with autism, other disabilities and the way they clash with what this world wants them to be. All we ever wanted for Kreed was to be happy. To enjoy his life. His existence. To live in this world in a way that worked for him. And for the world. I never saw the two as mutually exclusive. If he wanted to hop through a store, he hopped through a store because who was I to dictate how he wanted to walk through a store. Or in his case hop. And express his joy. 
Now, running away and knocking over everything in his path, that wasn’t happy, joyful or conducive to this life. So we showed him another way. Where he could both be himself and be in this world. And I would never have changed that for one single second. 
And I think about being “good” and what does that even mean? Kreed was good. In so many ways most people are not. He was kind in ways people could not imagine. He lived in ways most people could never even dream of. And he raged in ways most people will never even comprehend. It was a clash of a boy knowing his body wasn’t working right and desperately just wanting to be happy and to feel the good in this world again. 
He just wanted to live in this world and experience everything good this world had to offer. To experience the opening of a flower, the feel of leaves as they rush by your hand. And a taste too. To sit and feel the wind as it gently whips around your body. To feel the sunlight kiss the skin. If this world would stop for a second and see these things, I think we would all be in a better place. To just be. Even for a moment. Without the rush of the world, deadlines and people wanting things from you. To just be. Amongst the stars. The moon. The deer. The rabbit. The dandelions. The sun flowers. The pine. The aspen. With the whispers of the river. The roar of the waterfall. To just be. To just love. To exist. To live. 
This was our boy. And the way in which he existed. And the lessons he always taught me. And the way I want to continue to honor our boy through everything I do. And to write about his life and what it meant. And our grief and how we experience it. And love and how we feel it. 

Monday, June 18, 2018

Grief Changes Everything

For years, every morning, I drank
from Blackwater Pond.
It was flavored with oak leaves and also, no doubt,
the feet of ducks.
And always it assuaged me
from the dry bowl of the very far past.
What I want to say is
that the past is the past,
and the present is what your life is,
and you are capable
of choosing what that will be,
darling citizen.
So come to the pond,
or the river of your imagination,
or the harbor of your longing,
and put your lips to the world.
And live
your life.
  • Mary Oliver, Mornings at Blackwater

Live your life. Seems like such a simple notion. Until death knocks at your door and then blows you down so far you don’t know which way is up. And you feel like you can’t breathe, gasping for air. Gasping for an air you know your child will never breathe again. 

Time moves on, slowly, and suddenly you find yourself into a third year without your sweet boy. Have we lived these three years? Have we only just survived? Are we broken? Are we together in this? Are we hearts of stone? Where is our heart? 

Grief makes you wonder so many things. It makes you question everything. Your existence. A higher power. Your life. Your love. Your everything. And when you lose someone like Kreed who loved everything and wanted this life, your left broken in ways that can never be understood. And you question life in ways no one would think to. 

“That the past is the past,
and the present is what your life is,
and you are capable
of choosing what that will be...”
Our present exists while at the same time knowing our boys does not. He now only exists in the past. He exists only in memory. We don’t have one more day, one more second, one more moment. We used them all up until they are gone. We had to say goodbye knowing it was the last goodbye we would ever give him. And we spend our life with regrets for things we will never get to say or do. And no one can understand those regrets like we do or could possibly understand why we have regrets. When you give someone a final goodbye there are still a thousand things you wished. Wished to say. Wished to do. Wished to be. Wished. 

The finality if death can kill you if you let it. That’s the reality of grief. The guilt. The regret. It can eat you up and spit you out and then do it all over again. Time does not matter. The death seems like yesterday. It never doesn’t feel like yesterday. Time does nothing for this pain. 

But live our life. That is what we must do. We have to take it moment by excruciating moment. And somehow, someway come to an agreement with yourself that you will live with the duality. Of such pain and loss, but still life. 

Death forces you to examine your life. Who you were, who you are, who you will become. None of those are the same person. But you need to come to an acceptance of all three. And can you love again? Can you breathe again? Can you feel again? Each breath is painful, each one exists without our boy. But we breathe anyway. 

And ultimately it’s up to us. To decide to breathe and keep on breathing and live and keep on living. To love and keep on loving. And be present and more than just a memory, no matter how painful. 

Grief. Changes everything. Everything you thought you were and everything you thought you would be. And those that grief live a life others cannot possibly understand. And we live with a pain that will never be shown, yet permeates our entire being in everything we do. 
But we do it. We are here. We are broken in ways that can’t be mended. 
But we are here. 

Saturday, May 19, 2018

Rave on

From the complications of loving you
I think there is no end or return.
No answer, no coming out of it.
Which is the only way to love, isn’t it?
This isn’t a play ground, this is
earth, our heaven, for a while.
Therefore I have given precedence
to all my sudden, sullen, dark moods
that hold you in the center of my world.
And I say to my body: grow thinner still.
And I say to my fingers, type me a pretty song.
And I say to my heart: rave on.
– Mary Oliver, Thirst

That was the only way to love Kreed. Fully. With no end or return. And it was our heaven while he was here. We gave our everything for his life, so that he could experience a life, a good life, not just any ole life but one he felt with all his heart. We said to his heart to rave on despite having autism and less communication and a difficult medical journey and he took that and ran with it and loved his life and asked to experience everything. 
As a result we sit here in this grief, missing our boy and the emptiness left behind. How do you keep going on when everything you knew, and everything you gave and everything you had is just gone. In an instant. And no one can understand why we say live for a moment, live for today because you don’t know what the next moment will bring- because it’s so inconceivable that a life can be lost. Until you’re the one holding onto a human life as their heart beats their last beat. And you know in that instant that all you have is moments. 
I will never regret the moments we had with Kreed and all that we gave to him to have the life he had. It wasn’t easy ever, but it was worth it. And the love was worth it even though now we lay in such ruin because we loved and lost. You will never ever regret loving someone too much and giving all of yourself. At the end of this life you’ll never say, “well damn, I just loved people and this life too much.” 
The consequence of great love is great grief. I have come to accept this, although all of my being rails against it. Accepting loss and that we will live the remainder of our days without him is unacceptable at its core. But the reality is that acceptance. 
And so we miss him. With every fiber of our being. Sometimes I walk past his photo and want to break down and cry because the ache becomes all too much in that moment. And that is our reality that I have come to accept. 

This is our grief life now. And this is our hearts continuing to try and rave on in true Kreed style.

Loving the World

I have not written a lot in the last year. Sometimes words are painful. Or rather putting down what I think and feel onto paper made it too real. But I realized this is necessary. Otherwise they stay inside my mind and eventually I suffocate from the weight of them all. But when I write them down, it frees them and my weight is lifted. So today starts anew and hoping I can continue to put my thoughts down. And as always, along with Mary Oliver who has given words to Kreed’s life and our grief. 

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 the 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
This was Kreed. His work was loving the world. As a young boy he yearned to explore and be free in this world and as he learned how to be in this world, he loved it more and more with each new experience. Kreed didn’t want much- at home he wanted as little clothes as was acceptable, his favorite foods and love. In the community he just wanted to shop for good smelling stuff, freedom to hop through stores, find books or movies, sample as many everything free French fries as possible and experience as many things as possible. He just wanted to be. He just wanted to experience everything. And to love. Love us. Love his life. Love his adventure. Love nature. Loving just being in this world. 
Which is what makes his death so damn hard. He LOVED, truly loved. And if you were around him you couldn’t help but love too. His death has left a gaping hole. The first year it was a deep dark pit that we all fell in. This year we are at least standing in it and looking over the sides and learning how to love on our own. Learning from him still. But it’s hard. And still feels so empty without him. 
I miss seeing the way he saw the world. I miss the dimpled smiles for the simple things in life that no one else would notice. And the world keeps piling things up in this world as we deal with so many stressors. Even if we had these stressors before, when he was here, we were surrounded by his light and joy and that made all the difference. 
So we are learning the work of loving this world. I don’t know that we will ever be as successful as Kreed was in this, but for him, we will always try. 


Monday, January 8, 2018

Among the Trees

When I am among the trees, 
especially the willows and the honey locust,
equally the beech, the oaks and the pines,
they give off such hints of gladness.
I would almost say that they save me, and daily.

I am so distant from the hope of myself,
in which I have goodness, and discernment,
and never hurry through the world
but walk slowly, and bow often.

Around me the trees stir in their leaves
and call out, “Stay awhile.”
The light flows from their branches.

And they call again, “It’s simple,” they say,
“and you too have come
into the world to do this, to go easy, to be filled
with light, and to shine.”
- Mary Oliver, When I Am Among the Trees

It has been so long since I have been among the trees. Who knows why? Depression? Lack of energy. Lack of will. Not wanting to face myself or the world. 

These holidays have been killers and my memories have been coming and hitting me left and right without end. Even in my dreams. So I have been silent, lost in the pain of all of it. 

You never come to terms with the loss. Of that boy. That joy. That happiness. My buddy. This pain will always exist, that I know. That I have realized and begun to accept. But that doesn’t make it easier. It doesn’t make it any easier to wake up each day and once again realize he’s not here and we must go through another day without his presence. 

I still haven’t figured out how to have any kind of happiness, except that with Carie, without our boy. Everything is hard. Everything is different. I often feel lost. 

What is my place in this world now? I don’t know. But I always feel a calling that it should be more. I should be more. I need to do more. I need to make his life count. I need to make our life count. 

But this world. It’s go go go. We never get time to breathe. We never get time to find ourselves. This was one of Kreed’s greatest gifts to me- realizing that life was meant to be slowed down, and to walk among these trees and truly take them in. The smell. The wind gently rolling across our shoulders. The rustle of the leaves and animals. The air we breathe. All of it. He was able to do that and it renewed him often. These trees were his favorite place to be (besides Five Guys of course). And I loved how we stayed in those moments without a single other care in this world. 

Since he’s been gone the world has not stopped. It has kept on spinning, tumbling and turning me every which way until some days I can no longer find which way is up. 

And I yearn for him. To hear him. To play with him. Hike with him. Be with him. And no one- and I mean no one- except those who have lost their sweet child- know this kind of unending pain that we will never again have time with our child. And the excruciating pain it is to wake up each and every single day without them. 

But these trees. When I finally come again, peace comes even if for a moment. My tears fall- or really I sob. Because it hurts so damn much. And these trees are where it’s safe to feel. And I search for him and for meaning. 

I search for those moments I used to love with him. And allow the pain to come and consume and just be. No matter how much we try to stuff it down and pretend it’s not there, it is. It always is. We just choose to decide when to let it come or other times it choose when it needs to come. 

So I come to these trees to allow it to come. Acknowledge it. And grieve. And grieve. And grieve. And try to remember to continue to do this. To remember him, honor him and grieve him.