Sunday, August 5, 2018

Impact

When I think of the loss of our boy, I also think about the impact he had. 

On me. 

Us. 

The special needs community. 

The world. 

Sometime in 2011/2012, we decided to pick up the camera and film our life as we found ways to teach Kreed. 

Communication. 

Life skills. 

Play skills. 

About this world. 

We filmed him whether he was happy or angry or sad or hoppy. We didn’t feel a need to sensor our experience as I’m sure many in the world wished we would. Because that was our life, even if he was trying to slam his head into his knee or floor or give me kisses and ask for five guys. I never wanted to diminish our experience by only posting the good. 

At that point in time, there were few videos of people using an AAC device. There were few providers that knew how to teach it, at least for a kid like Kreed. We bought a device off eBay after we found the state supplied one had run its course and I was tired of recording my own voice ha. 

And so it began. We found a speech therapist that finally, finally could guide us and we took off. And Tobii Dynavox finally made a device tailor made for Kreed it seemed and his communication flew. And we filmed everything because Kreed had his communication device in every situation. 

Through our filming, Kreed built up “fans” and people who loved to see what he would say next. Or hope. For the families who had no idea that communication was possible for a child or teen or adult like Kreed. All I ever wanted was for Kreed to live his best life and in doing so maybe we could make an impact on other families with severe autism. 

We never knew this road would lead to his death, and our social media life would turn into grief writing and writing about loss. 

But through it all, after the loss of our whole world, even two years later, I know Kreed made an impact in this world. At least for now, he isn’t forgotten. His lessons live on. He taught us so much- mostly how to truly live this life and take in everything around us and that anything is possible. He taught us to live without limits. And that will forever be the impact he left on this world and us. 




















Secondary Loss

“Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell.”

-Edna St. Vincent Millay

So many people fail to realize all of the loss that goes with losing your child and a special needs child at that. 

There is the loss of your child, your whole world. For us, it’s been a loss of identity as well. We were Kreed’s parents. Period. Raising this beautiful boy with everything we had and more. Our life literally revolved around him and his needs. Until one day there were no more needs to be met. And we were left with ourselves and no one can imagine what that is like after so long of meeting a child’s needs- more so for Carie and the entire 18 years of meeting his needs. 

Support systems. From losing an entire half of a family who didn’t seem to understand what this loss meant and how it devastated us, to the special needs community to the medical community, and even social media family. Everyone was used to our darling boy and following his dimples and amazingness to now following posts like this about grief. And now we stand on the outside of a special needs community that we were once so active in, trading stories or help or support. Now. Now we are on the outside because we are their fear, that one day they too could lose their child. We are the harsh reality of what it can ultimately mean to parent a special needs child. 

I lost the years I thought I had with our boy. What I was going to teach him. Where I was going to take him. Things I dreamed of doing as he got older, and I thought also better. The life I thought he would live also having access to cannabis and feeling so much better. 

So much loss wrapped up in the loss of our boy. For us, it’s been everything. 

Even two years later we still feel those losses. We are still picking up the pieces of our shattered lives the day he left us. 














Regret

Of all the words of mice and men, the saddest are, "It might have been.

Kurt Vonnegut


Regret. 

What do I regret in this grief? Never dressing him up in a tuxedo and going out for a fancy meal. Man I would have first loved to see him look so handsome and second, peoples faces at the restaurant 😂

Not hiking more. 

Not going to his favorite places more. 

Not knowing what was really wrong in 2014 when he started laying on the floor. 

Not understanding megaloblastic anemia and listening to the geneticist that said it was no big deal. 

Listening to all the doctors who told us it was fine when it wasn’t. 

The majority of my regrets come from what we didn’t know but I wish I did. We weren’t doctors but we figured out what was wrong with him often before they did. Except for the final terminal diagnosis that has been coming like a tidal wave and we were completely unaware until it smacked us down. 

We gave our boy the best life we could and showed him the world. But the regret still comes, ebbs and flows with the remains of that tidal wave. 

Yet another thing we live with after loss. And people can say it’s okay, you gave him a great life. I know we did, that is not the cure for regret. Nothing is. Just like with grief, regret is it’s friend that we carry. No matter where we are or what we do or how we feel, regret stays as we live this duality. 

After the loss of a child, we do live in this duality forever. And it’s okay. It’s the coming to peace with it, the accepting that reality and acknowledging its existence that’s hard. After two years I see it, know it and live with it. 

Regret. It is what it is and there are things I wish we had done and wish we had known. But at the end of the day, I always know we did do the best we could. 


















Connection

There is new life in the soil for every man. There is healing in the trees for tired minds and for our overburdened spirits, there is strength in the hills, if only we will lift up our eyes. Remember that nature is your great restorer.

~ Calvin Coolidge

Kreed went to nature often and was connected in ways I had never seen or even experienced. 

We go now to connect again. With ourselves. This world. Everything. 

For two years there was no connection to anything or anyone. But slowly it has come back. And yet, still connected to our boy too. He is the one who showed us this amazing natural world. And who taught us to connect to it. 



















Beginnings

I wish

I wish he was in these photos. 

I wish he was here hopping down this trail. 

I wish he was here to see this hawk. 

Or deer. 

Or rabbit. 

Or mountain. 

Or sunshine. 

I wish he was climbing this mountain with me. 

I wish he was feeling these cool breezes. 

I wish he was finding these creeks with us. 

I wish. 

I wish. 

I wish. 

But this is life now. Taking these hikes and capturing these views, these animals and taking in the scent of nature. Without him. Without my buddy. The center of our world. He was the center of all my photos before. 

This is my grief now. In photography. 

Alone. But not alone. But still in the places he loved where we can feel again. Both great pain and sorrow but a new kind of happiness as well. If you can say happy while you are missing so fiercely. Our life goes on and his does not. We find a new life without him. We know this sorrow will now always exist no matter what we do and are coming to a peace with it. The duality of our existence is this life now and another beginning. Without our boy. This is our grief. This is our daily beginnings. 















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. 


Messenger

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 

astonished. 

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
continually?
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