One Child Crying

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.

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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“.

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.

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I have a folder of digital images labeled “Knox’s Last Days.”  I often (much too often) look at the photos in it.

Effects of CS 1

What would the next photo in line look like?  I imagine it would be unbearable to see.

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.

Sweet Darling

***

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.

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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?”

(N. Wolterstorff)

***

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.

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Happy Birthday Knox ~ 4 Gifts Given and Received

Happy Birthday to my little son in Paradise.  Knox would be 4 years old today.

I think the hardest part is not being able to say “I love you”; not being able to hold him.

He’s been gone 5 and a half months.  I miss him terribly.

Giving gifts of love, in honor of Knox’s birthday, was the only way I could think of to say “I love you”.

First, I went to the store and picked out what I would’ve bought him if he was here.  I associate baby turtles with Knoxy because of a painting I made for him that hung above his crib.

I’m sending these clothes to a precious little boy with severe CS here in the USA,  and another identical set to a little boy with CS in England.  I love you, Knox.

Then I painted a bright turtle for a little girl with CS, also here in America.  I’ll include the process photos and finished piece in the next post. I hope she likes it!

Next, I made a new set of cards and listed them in Knox’s Etsy shop. I’ll continue to make and sell butterfly cards and other original art pieces online to support Amy and Friends CS Support in the UK.  Please visit the shop and pass on the link.  All proceeds are donated. I made a donation last week of $150 from card sales. Thank you to everyone who buys the butterfly cards!

I donated the recent proceeds from Knox’s shop to CS research through Amy and Friend’s “JustGiving” site. If you’d like to make a donation in honor of Knox’s 4th Birthday, please leave a note in the message box so I can thank you.  <3

Finally, I made a donation of books to Dell Children’s Hospital.  Knox loved books!  It’s so nice to have good books to borrow while you’re in the hospital.  I wish I was in the hospital reading a book to Knox now.

I have been given four gifts, as well. I received this gorgeous bracelet from another CS mom right here in Texas.  I absolutely love it!

 

A young artist friend of mine presented me with an amazing graphite drawing of Knox.  I loved it so much I posted it on my FB page. I know how difficult portraits are and how much time it takes to make an accurate likeness.  Thank you so much Miss E. J.! See her wonderful drawing of Knox here.  What a special gift!

Third, a friend sent me a poem he wrote about Knox.  The day it was sent to me, I had been asking the very same question presented in the title:

How Has the World Not Stopped?                                                        (2/11/14)
But I now know
that nothing
escapes a black hole.
That gravity pulls,
slowly at first,
then faster and faster
until the frail shell protecting us
collapses,
and air
no longer
surrounds us
and we are crushed.
Within the heart
of this heaviness
time ceases to exist.
The normal flow of life
is torn on the tiniest snag of circumstance
into spirals of endless repeating memories.
Eventually we’ll be spit out
into an alternate universe,
that expects us to live
as if you no longer exist
and only pities us
when we cling
to the warmth
of your presence.
The strangest part
is
that for those whose path arcs
far
from your massive absence,
life
seems unchanged.
Except,
perhaps,
for a sense of relief
at barely
having
escaped.
(c) 2014  Elwood Fischer

Thank you for this gift, Elwood.  The words are meaningful and I’m blessed.

And the fourth gift was a video.  Knox’s grandmother sent me a video she found on her iPhone of Knox’s first few moments of life. I was struck to the heart with sorrow to see Knox as a newborn again and to hear his cry.  I remember thinking how beautiful he was, and at the same time, there was a feeling of incongruity in the room that I remember, as well.  It didn’t feel like there was anything specifically wrong with Knox in that moment, but something suddenly seemed wrong with life itself.  I still don’t understand it.   The video is hard to watch but it’s a gift I wouldn’t trade.

Happy Birthday my sweet angel ~ I hope you and your Great-Grandmother are enjoying your shared birthday together today and having a wonderful time.

 

Knox,  we love you!

The Dead Dove

When people see this image they respond in different ways. Some have said it’s a photograph full of sadness, that it’s hard to look at.  Some say it’s foreboding, an ill omen of days to come.  Other are more pragmatic: The dove flew into the window and fell down dead. That’s it. It meant nothing.

My response is to turn it into art.  I can’t say that I like the image, but I also can’t deny that it holds immense significance for me.  That’s my baby. The diagnosis of his terminal illness came shortly after this dove flew into my window and died.  It’s a profound moment in time if you think about it and I wonder at myself for having had the wherewithall to get my camera and capture it.

 

I tried scraping the color away with an x-acto knife to add texture.  I liked the effect at first, but by the time I got to Knox’s face, I was crying a lot and I didn’t want to scrape any more.  Any image of him, whether photographed or drawn, is precious to me.

I left it alone.

 

Grieving my baby boy is hard work.  It’s exhausting.   The rough days at the end of his life are still bothering me and I can’t  stop thinking about what I might have done differently.  Sometimes all I want is to do is to go to sleep and not feel the pain for a little while.  But as soon as I open my eyes, there it is again.  The empty crib, the silent room, the ache of another day without hearing his voice.

 

 

3 Months Without Knox


Knox has been gone for 3 months now and there’s one thing I want to do.

I want to tell YOU about him.

And YOU. and YOU.

And everyone else. I want to tell you about my sweet little boy who was just here a few weeks ago.

He was just here!

He was such a little dumpling and looked fairly well until about 2.5 years.  There were times when I would look at him and think, “He looks great, I think he’ll surprise the doctors.  He’ll prove them wrong.”

But they weren’t wrong.  His DNA was a train wreck. The disease aged him slowly inside and out. As I look back through Knox’s photos I can hardly believe the deterioration that took place right in front of me.  I put together a final  photo progression of Knox’s deterioration for doctors to use as a reference, but I can hardly bear to look at it.  The disease is so cruel.

I find myself wanting to talk about Knox all the time. I’ve been sending photos of him to people he never met.  I find ways to mention him and say his name aloud in conversations.

Did you know he had cute, puffy feet like a Hobbit?  Did you know his teeth looked remarkably good for a child with CS?

When they came and took his last piece of equipment, I dropped very low emotionally and found it hard to speak.

Then I took my children to put flowers around his newly set headstone at the cemetery. I encountered a low I didn’t know existed.

It seems like there is too much time now.  But nothing gets done. Everything connects to Knox in some way.

Memories cross with moments unexpectedly.  Batteries are on sale at the corner store.  We bought so many batteries to keep Knox’s toys running. I reach for them….

But I don’t need batteries anymore.

 

You want to know the truth?

If it wasn’t for the natural process of decay I would’ve dug Knox up weeks ago to see his face again. I want to hold him again. Pointy ears and spikey, brittle hair. Sunken eyes and hunched back. Puffy feet and contracted limbs.   He was my baby.  I loved him with the syndrome.  In spite of the syndrome.  Through the syndrome.  And still.

If it weren’t for decay I suspect bereaved mothers would simply keep their dead children near them, wrap them up, prop them up on a pillow and continue to talk to them normally.  A good friend told me that once he was gone, I’d want him back, even in a deteriorated condition. She was right. I miss him so much.

I try to think of ways to describe the feeling to others.  If you are a mother and you’ve ever lost sight of your child in a store, even for just a split second, then you have felt that frightening feeling of panic.  For an instant you don’t know where your child is and you freak out.  You call to them,  run around the end of the aisle, or turn the corner,  and there they are! It’ such a relief!

I feel that panicky feeling all the time. But I know that no matter where I look, I will not find him.  It’s difficult to live with.  I’m not going out much and I don’t want to be around many people.

Why would God allow children to die when he has put such a strong instinct in mothers to look after their children? It feels like being created for sorrow.

The last month has also found me doing battle with the dark specters of regret.

Feebly, I wield the only weapons I have:  non-regrets.  These are the things I did to, and for Knox, that affirm my feelings of being a good mother to him. These are personal, between Knox and I.  No judgement is being made.

1.  I changed his dirty diapers. I told the nurse that if Knox needed to be changed, I wanted to do it.

2.I bathed him.  It made the evenings harder but he was able to take a bath with his brother this way.  We have happy memories of bath time. It became painful to look at him toward the end because he became so thin and frail, but even in the last few weeks he smiled in the bathtub.

3. I put him into the car seat gently. And I took him out like he was made of flower petals.   I softly pulled the straps out from his arms and kept  them loose.  Very loose.

4. I let him eat what he wanted and I never put a feeding tube into his stomach.  Though he ate very little, he enjoyed all the sensations and pleasures of eating naturally up until 2 weeks before he passed away.

5. I talked to him.  Even though he was mostly deaf, I was always talking to him, telling him what he was going to wear, what he was going to do, and which therapist/nurse was coming. I put my mouth close to his ear and talked to him. I’m happy that I did this.

5. I let him die at home.  He was able to pass his final days wrapped in his blanket, held by familiar arms in soft, familiar light. He could smell his brother.  He knew we were all close by.

 

***

Since my last post,  I’ve also had my first dreams of Knox.  They were horrible and disturbing.  I awoke to find my eyes red and puffy because I had been sobbing in my sleep. I don’t understand why I have to endure so much sorrow asleep and awake.

Can I find one thing to be thankful for?  Sure.

“Because the way is short, God, we thank Thee.”  ~E.B.Browning

Yes.  Life is short, thank God.  For all of us.   The way I feel these days, it better be.

***

Here is a letter Knox’s 11 year old sister wrote to him. She tied it onto some flowers to be buried with him.

 

3 months without Knox.

***

“Death diminishes you.

You think: “Now I have

touched the bottom of despair.

I can’t go any farther.”

 

You do go farther.

 

~E.Grollman