“Kicked Out of Church” on DesiringGod.org

I was kicked out of church a few years ago.

I didn’t create any art about it when it happened, but I’ve continued to think about it a lot. It changed my life.

There are so many ways we can communicate what is in our hearts and minds: drawing, painting, singing, acting….

In trying to share this story, writing seemed like the best medium. You can read the story at Desiring God.

Thank you for taking the time to stop by and I hope you have a blessed week.









Cockayne Syndrome: A Loving Nature is a Symptom


It was my birthday last month and I received a priceless gift:

All the videos from Knox’s life on DVDs!   No gift could equal this.

In this stage of grief, watching the happy times we had with Knox is a great comfort. I love watching each and every video, no matter how short.  I watch videos of Knox often and late into the night.

Now I can pop in a DVD and gaze at continuous, chronoligical footage of him on the big screen: my little precious boy with his cute glasses, spikey hair, and rare syndrome most people have never heard of.

But there’s something about the syndrome I’d like to share with you. It’s something that I’ve only recently been able to embrace.

A loving nature is a symptom.

Yes, it really is. A loving nature is considered an actual symptom of the disease.

Dr. Neilan of Boston Children’s Hospital acknowledges this in the documentary “Love Has Wings” (at approx. 23:40) saying, ” Children with Cockayne Syndrome have a very friendly personality, which almost seems to be a characteristic of the disorder.”

How did I miss how remarkable that is?

Admittedly, I could not think about much when Knox was with us. I was so angry at what was happening and I could not accept CS as a blessing while Knox was with us. I remember one of his specialists advising me to consider how preferable CS was to others illnesses shortly after diagnosis.  I thought he was a nut!  Preferable? How could CS be preferable to anything? The diagnosis was terminal, with a lifespan of only 5-7 years. I could not comprehend what the doctor was trying to say.

I had always thought of symptoms as purely negative things. A ‘symptom’ was something in the body not working correctly. Truly, CS children do have severe and heartbreaking symptoms and that can’t be denied. But the symptom I remember most when I think about Knox now is not his blindness, deafness, microcephaly, or neurological deterioration, but his loving nature.

I look back and watch the videos of happy days and there it is!  In every frame captured from his life I can see it clearly: that sweetness of CS.

How could I have been so blessed?

I would’ve chosen life and health for him, but I wasn’t given that choice.  And that still bothers me. My mood can turn dark quickly when memories of his suffering re-surface.  Sadness can still stop me in my tracks and some memories can still make me feel like I can’t breathe. It’s awful.

I’m reminded of something the old Protestant preacher, Jonathan Edwards, said:

“The same sun that causes the brightness of the day at noon, causes the shadows at 3 o’clock”.

I still don’t understand why it happened, but if the shadows had to fall, I’m thankful God gave me Knox. He was a gift in the greatest sense of the word, and it’s my prayer that his loving nature continues to shine through in each video, in each memory, and in my heart.




Happy 5th Birthday, Knox


Knox is celebrating his 5th birthday in Heaven today, and we miss him.

We were priveleged to attend the release of 130 newly hatched Kemp’s Ridley sea turtles early yesterday morning.  A crowd gathered along the Padre Island National Seashore and volunteers stood ready to keep the babies safe from seagulls.

More volunteers held up netting for extra protection from birds.  They had hatched just a few hours before sunrise in an incubator at the science center and then they were transported to the nesting ground.  As soon as they were set upon the sand, they began to head for the ocean.


We were told their chances of survival are very slim, so ensuring they make it into the ocean gives them a better chance.  The volunteers stand at the ready until the very last turtle has safely reached the sea. Once they reach the water, they are on their own…
IMG_2421 IMG_2402

As we watched the turtles struggle toward the sea, we were reminded how fragile life is.  They reminded me so much of Knox–small and physically vulnerable, but incredibly strong in spirit.

Here’s  a sandcastle for you, Knox.  We wish you could’ve been here with us, to play in the sand and feel the breeze…

We love you and miss you ~ We wish you a happy birthday and will always celebrate your beautiful life and the priceless time we had with you.

“Short was my life, the longer is my rest,
God takes those soonest whom he loveth best,
Who’s born today, and dies tomorrow,
Loses some hours of joy, but months of sorrow.
Other diseases often come to grieve us,
Death restrikes but once, and that stroke doth relieve us.”





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.


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.


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.


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.


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
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
that for those whose path arcs
from your massive absence,
seems unchanged.
for a sense of relief
at barely
(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!