My son died in bed beside me. I have no words to describe this. He was 3 and a half years old.
Later that morning, his nurse washed and dressed him. After holding him for 9 days while his body shut down, I was unable to perform this final task. Cockayne Syndrome had won.
We wrapped him in a soft quilted blanket my mother made. This blanket that had bundled him in my arms, now bundles him deep in the ground. It’s the baby blue one covering him in this photo.
Recently, someone asked me what the hardest part was. It was this:
Handing my barely dead 3 year old to his 6 year old brother. I told him Knox had died and he asked to hold him. Staring hard into his face, he inspected him closely, desperate to understand what death was. I could read his thoughts, “What has happened here? Where did Knox go?”
Because even newly dead looks so different from alive.
“He went to heaven just a few minutes ago,” I told him. He’s probably still in flight.
When they came to pick Knox up, my son ran into the bathroom and closed the door, locking himself in. I could hear his deep sobs out in the hallway. He didn’t come out for a long time. I stood near the door, waiting for him.
And I waited, listening to the sound of one child crying over the other one dying.
I knocked softly on the door, “I have to take Knox out now. Will you help me?”
He came out wiping his red, swollen eyes on his shirt sleeves. We carried Knox out together. As a few family members stood by, I forced myself to carry out this nightmare in broad daylight: “Take another step…you’re almost to the door, step down, keep walking…there’s the car…cut across the grass…get this done. You’re at the curb, put him in the car, be a strong mother. Wait! Did he move? ……..Can I not wait a little longer and make sure? Who would fault me for wanting to make sure?”
I don’t know how I managed it, honestly. I gently placed my lifeless child in the hearse and stepped back. And as the man closed the door, I felt my mind crumple under the weight of “never again”. Never again Knox, or anything of him in this life. I turned and picked up my son, and we wept together openly.
Did any of the neighbors see this? Are they looking out of their windows? I just put my dead child in a car. I don’t let my children go anywhere with strangers. How is it possible someone I don’t know is driving off with my child and I remain here in the yard? Knox, forgive me for putting you in a strange black car. Forgive me for letting you go away with a strange man.
I will always HATE this memory.
And I carried my big boy back into the house.
It’s been a dim year, without color or detail. Arsenic gray.
I discovered this painting by Hugues Merle. It’s called “The Lunatic“.
I think the woman in the painting is grieving.
Once, on a windy day, the locket that I keep a bit of Knox’s hair in broke open, and the tiny strands flew up into the air like dandelion seeds. I clasped my hand over it in panic and ran inside. I saved as many as I could. LUNATIC. How could I keep something that important in such a place? What was I thinking? Knox, forgive me for letting your hair blow away. I want every piece of you that’s left. If there is a CELL of yours on something, I want it. Forgive me for not shutting the clasp tighter.
I have a folder of digital images labeled “Knox’s Last Days.” I often (much too often) look at the photos in it.
No one can say “You exaggerate CS”. No, I do not exaggerate this syndrome.
Knox could not go on with Cockayne Syndrome.
And even after all this time, I ask the same questions: Was I a good mother? Did I do enough? Did I give Knox a happy life?
I want to hear the answers from Knox himself, but I never will.
My mind orders things around Knox’s life now. It’s as if 2015 is the year 1 (in the year of Our Angel, Knox) I begin my sentences with, “Before Knox was born….”, and “After Knoxy left us…”
Some have tried to comfort me by reminding me of the untold millions of children that have died throughout the ages. This is supposed to help me see the ‘big picture’ so I won’t place so much emphasis on my child. Their intentions are good.
BUT my pain is for the one I touched; for the one I cared for. Among the millions of tiny angels in heaven, it’s his face I will seek out when I get there.
I’ve stopped hearing his voice when I’m in the shower.
I’ve stopped waking up in the middle of the night to feed him.
I’ve stopped replaying the last 2 weeks of his life every night.
I’ve stopped going to grief counseling.
I still lay out his outfits for him, with matching socks.
I still look at photos and videos several hours each week.
I still avoid most social gatherings.
Holidays are sad. I don’t want to celebrate anything. I shy away from places that Knox would be if he were still alive. I rarely go onto my back porch.
“… how am I to sing in this desolate land, where there’s always one too few?”
I’ve recently joined a Bible study. We began in Gensis 1:1. That’s right. Back to the beginning. Whatever faith I thought I had, it didn’t bear the weight of the last 4 years of my life. Things fell apart. So here I am trying to understand why God created animals that kill us and things like that. And why the innocent suffer.
I love you, Knox. I miss you.