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.