My brother died almost 28 years ago on December 16th.
It was 2 weeks after his 3rd birthday.
And it was around this time of year that we found out he was going to die.
It was around this time of year that I looked into the stands at a home swim meet and didn’t see my mom up there.
It was around this time of year that I looked into the stands a little bit later, saw my mom walk in and sit down, and then saw her break down and start bawling after returning from a check up with my brother.
It was around this time of year that we found out all the chemotherapy and all the radiation didn’t work.
The bone marrow transplant didn’t work either.
He had relapsed.
Leukemia had won.
He had lost.
And now, all we could do was wait.
That Halloween when I was sixteen years old, I dressed Christopher up in the same, cute, red devil costume that I had worn at that age and I took him trick-or-treating.
I went to each of my friends’ houses.
He would have a great last Halloween.
Every day he deteriorated a little bit more.
He got weaker.
Every part of him grew paler.
Except for the circles around his eyes. They grew darker.
We had a party for him on December 2nd. He had made it to 3 years old.
He was still able to stand and to walk. You could see he was in pain, that he was failing.
But he was still able to smile.
He had a great last birthday.
And then, he just ran out of gas.
I don’t remember most of the details after that time.
I’m told that as a teenager, your brain can really block a lot of stuff out in an effort to protect itself.
My brain was for sure in survival mode.
But I remember the day he died.
At that point, he couldn’t move. He was just lying in my parents’ bed.
We knew the end was near. We just didn’t know exactly when it would be.
My mom wanted to take a shower that day, and she asked me if I would come hang out with him on the bed.
I lay down next to him and just looked at him.
He couldn’t move any parts of his body.
Except his eyes.
His eyes were still open.
I just rubbed his face.
And the little hair he had on his head.
I did my best to smile.
Don’t let him see you sad.
I didn’t know those would be the last ten minutes I would ever spend with him alive, and I’m so grateful that I had them.
Later that afternoon, my other brother and I were sitting on the floor of my room, watching the word’s smallest television.
We are two years apart. We didn’t talk about what was happening. We just sat numbly staring at that tv.
And then I heard a sound that has become forever ingrained in my head.
No matter how hard I try, no matter what I do, I will never, ever be able to delete that moment from my brain.
It was the sound of my father.
It was the sound of a guttural, agony-filled moan that came from the depths of a man that I had never seen cry.
It was a sound that has become a permanent part of my soundtrack.
If you could sum up pain, sadness, and just complete and total fucking devastation in a sound,
that is what came out of my father.
And at that instant my brother and I just looked at each other.
He’s dead, said my brother.
I don’t remember exactly what happened after that.
I remember little flashes.
I remember holding my dead brother.
I remember closing his eyelids like they do in a movie because his eyes had rolled back in his head.
And then I remember standing in the window of my bedroom, looking out at the driveway, seeing the man from the funeral home walk to that horrible black car with my baby brother in his arms.
And then driving away with him.
With only his blanket and teddy bear to keep him warm.
That was the worst day of my life.
A day that fucked me, and the rest of my family up pretty good.
A day that changed us all forever.
I tried anything and everything to make the pain disappear.
None of those things worked.
It will never go away.
So I try to find the humor in things.
And now I have finally reached a point where I am able to do something to make a difference.
Something to help other families.
Something that can maybe prevent another teenage girl from hearing the most gut wrenching sound of her life.
Something that can maybe prevent another parent from having to make that sound.
Something that can maybe prevent another child from dying.
I can I run.
But I can.
And I can run for a cause.
And for all the other fathers, and mothers, and sisters, and brothers.
Christopher won’t be there with me in body, but he’ll be running with me in spirit.
Whatever race I do.
Wherever I run.
On November 3rd, we will run this marathon together.
We will make a difference together.
If you’d like to support us, you can click here.
Let’s all run this marathon together.
Christopher Nils Johnson
1982 – 1985
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