He was the one having a hard time

Sometimes things hit me and I have to talk about it. There are so many messages out there about being a special needs parent. The message we always hoped to convey...was hope. Kreed was known as pretty severe- his rages documented on video and those weren’t even the worst ones since I could video. We didn’t video them for any reason other than so people wouldn’t feel so alone, to see what we did to help him through it and to show him and talk him through it. Mostly we showed using a communication device and how we helped him through his struggles. But this was a kid who tried to bite his toes off literally. And bash his head in until he could go unconscious. And bite every part of his body he would reach. And many many other things. 

But you know what, I never felt sorry for myself. I felt deep pain for Kreed. For what he was going through. The unimaginable pain he carried inside himself to the point he wanted to seriously harm himself and anyone trying to stop him. That was pain. I did not suffer. I did not have despair for myself. I had it for our boy. Whose life was way harder than I would ever have it. 

Sure, it’s not easy going through this with our kids. I’m not saying it is. But I’m saying I always acknowledged how hard it was for our boy and that he was having a hard time, not giving us a hard time. 

Sure, Carie and I didn’t get much date nights or other things couples get to do- but we made our own nights- Kreed got five guys and we got wherever we brought him with five guys. We went to movies at midnight when he was asleep (and someone with him of course but asleep!). We had many fabulous home made dinners at home and great TV marathons. Kreed learned to be a great spectator at Carie’s races and triathlons. Our boy experienced life WITH us. We didn’t want to do things “despite” our son with disabilities. We wanted to include him and experience everything. 

But most of all- out of everything in this world- we wanted him to be happy. We gladly gave everything we had to our boy to be happy. He was an extraordinary young man who overcame so much that most of us don’t even have a clue what it’s like. Why did he rage? Because he had a painful nerve disorder and often people don’t even want to get out of bed with that disorder but Kreed didn’t care- he hopped out of bed and through stores! Until the pain was too much and he couldn’t tell us so he raged. Imagine being in that kind of pain for even a second? So no, I didn’t feel sorry for myself, I felt unending love and empathy for our boy. I didn’t think about how hard it was for us to deal with HIS neuropathy, I thought about how hard it was for HIM. 

Or when we found out he couldn’t breathe at night and needed a Bipap and every doctor told us it was futile and he would never wear one. I knew in that instant that: 1. They were wrong. 2. I would never sleep through the night again but 3. I didn’t care, if this would help him live a better life. And it did better his life and actually added probably two more years to his life as a result. So I slept with him for three months to get him to wear it. And he did. He defied all the odds and wore his Bipap. It wasn’t easy. I didn’t sleep much. It was exhausting. But I never thought about how much it sucked for me. I thought- holy shit, our boy is going to feel better!

And he did. And I never slept  again through the night until after he took his last breath on this earth. 

Every night I set multiple alarms to wake up and see if he was asleep and if I could put the Bipap on. Sometimes I had to wake up many times because he wasn’t asleep yet. Oh well- as a result our boy got oxygen at night and could breathe. Later we had to wake up every ninety minutes to check his blood sugar because he was dropping into the low 20’s at night. Sometimes I even had to wake him to feed him or give him a peanut butter-honey spoon full. Those were even longer nights. But I still didn’t feel sorry for myself. I felt relief that our boy was still with us and alive. It was his body breaking down- not mine. 

I don’t know what I’m trying to say here. But as I sit here at 10pm at night to the sound of nothing- no monitors, no alarms to set, no Disney movie playing in the next room, no amazing child hugging me good night or having some late night shrieks of joy- I was just thinking back to our life. And no matter how hard it was- and it was sometimes incredibly hard- we didn’t ever feel the despair for ourselves. Or feel a loss of our life. We felt a drive to make our child happy. To figure out what was wrong. And empathy for him and what he went through. He didn’t celebrate autism and had lots of thoughts on it and autism is a reason he’s not here with us today because he couldn’t communicate good enough for doctors to hear him- but autism didn’t ruin our lives or make us suffer. HE suffered. That’s an important distinction. It was his life that was hard. He knew he was limited in some ways and didn’t want to be. He wanted to go to five guys anytime he wanted and drive there and have his own money. He hated that his body didn’t work the way he wanted it to. And that was his right. To hate those things. I hated it for him! But I didn’t hate our life. I didn’t have self pity. I didn’t think about how horrible our life was because of those things. Because it was never about me- I don’t have a disability, I could walk, talk, go to work. Or any restaurant I wanted. I was free. 

Because of the way we viewed our life I feel like we did more and taught him more. Because we just wanted our boy happy doing whatever it was he could. Tubing on a river. Horseback riding. Playing with the dogs. Road trips. Plane rides. Hikes. Go karts. Mini golf. Whatever his heart desired. Except Five Guys at midnight. We had to work through that one. 

Now that our boy is gone. Now that is despair. That is grief. That is suffering. To have your child leave this world behind without you. To know you will never again get to hear their voice, sounds, words- whatever- smell them, hug them, kiss them, experience this world with them. I would give up everything I own including my own life to have this boy back on this earth. Anything and everything. For the most part we celebrated his life while he was here. And now we know what true heart ache is. We know what a last moment is for real because we have no more moments. 

I speak about all these things Kreed did- but it wasn’t easy- he was a hellion. True story. This was a kid that flipped over shit in a grocery store and ran from you while knocking everything down. To biting my finger to the bone in the middle of Whole Foods and having my brother help me basically carry him to the car screaming. To throwing a shoe from his amazingly huge car seat built to keep him in but not built to keep his shoe from flying- and hitting the gear shift to park while driving 60mph. And having to teach him eventually to ride in a normal seat without tying to do every naughty thing in the book. And then flying in an airplane and going through security without doing anything that would get us arrested lol. 

But then we just buckled down to teaching. We took so many practice trips everywhere. So he could learn how to act- he didn’t know- we had to not only teach him but teach him how to handle things even when he didn’t like it. It wasn’t easy but it was worth every second and i wish I was still teaching him. 

Toward the end of his amazing life that boy loved to shop! From hellion to kickass shopper. Especially for avocados and sandals. Not kidding. That kids favorite place to go became food stores! And he was a decent cart driver too. 

I’m still rambling but there is a point here. When we focused on Kreed and had empathy for what he went through and didn’t focus on if it made our life hard or not- our life went a hell of a lot better. It was a different life for sure and a small life- we mainly had each other and that was it- but that was okay- because we were enough for each other. And now that our boy is not here, it makes me at least in some tiny part of my heart, happy that we focused on him and his experience and not ours. It was his life that was hard and difficult and he was having a hard time. And when you think of it that way, it changes things so much. 

And you never know how many moments you will have in this life. Things can change in an instant. Ours did. Celebrate this life that we have. The life of our children even when it’s hard. And I know- we lived through so much hard with our boy. But there was so much good too and that’s what we held on to. Always. And I’ll always be thankful that we never held on to the rages or hard times. When they were over, they were over. He didn’t dwell on them so neither did we. And when he smiled, it lit up the room and everything was okay. Even if it was just for a moment, I’ll take that moment a thousand times over. 

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. 

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