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.



  1. Bernadette Mitchell


    I pray that Jesus comforts you in only the way that he can do. I pray that he gives you peace that goes beyond all understanding. I pray that you find him in your heart and know that he is God.

    • Scarlett
      Your story will go on. He will always be a part of you, your family, your life. My daughter would be 22. Time becomes a constant state of grieving, but it evolves. I could say so much to you, but your path will be similar yet your own. I cried today for you and for myself. We will hold our babies in Heaven. I’m counting on it.

  2. Stephanie

    You have the courage to write such beautiful and meaningful words about your son. I barely have the courage to write anything to you. I just don’t know the words to say to you in your grief. I pray you will find the comfort and answers you seek. God bless you as you begin year 2.

  3. You sound so right. Nothing is normal, nothing is right, and yet you are spot on. I’m so blessed to have mustered up the courage to be part of Knox’s last days. I wish I could be more THERE for your family, and yet I sense that even if I was, this is something you can only go through alone. God is still with you, even if you will only see him in your journals some years from now. Thank you for sharing this, too, Scarlett – It helps us all.

  4. Floy Height

    OMG, is there anything harder than losing the ones we love? I am so sad for you, sad for me, sad for everyone missing a part of their life. We go on but it is never the same. You have had more than your share, sweet girl. Love you.

  5. Tara Gibbs

    My heart shattered reading this. I hope to never personally have to go through this, and my heart broke for you. All I can say is that “loss of a child” does not even begin to encompass the brevity of it all. You are by far the strongest person I know. And I love you, and I miss your Knoxy too.

  6. What a beautiful piece of writing, I hope you find many reminders of your beautiful boy everywhere you go, and that everything you still do for him, the caring never ends, thanks for sharing.

  7. At 75, it is still the way it was at 36. Love never fails. It knows no end. We are still alive because God has carried us through this. His love never fails. It knows no end. We love you, Scarlett! Life is still there. Your precious girls and their precious brother will always love Knox as they move on through their lives. Give them our love!

  8. Dear Scarlett – how extremely poignant – I am absolutely certain would be saying you’ve been and were a wonderful Mummy to me – having met you and your daughters I am sure this is true. Your son in your tale here tells me the same story … you and your husband have wonderful children – sadly one you have lost, but your incredible three are still with you.

    I’ll never forget Madelaine’s video “Love has Wings” … so evocative of Knox’ life and the understanding of Cockayne Syndrome – such a terrible disease to have had .. and for you as a family to have experienced.

    Hope and positive thoughts will come … Knox I’m sure would want to help others … and want you and the family to have happy times … take care and with lots of thoughts … with big hugs from England – Hilary

  9. Kayle Martinov

    i am sitting here crying from reading your blog. So sad. I too have lost a child and can honestly feel your pain. I pray for peace for both of us.

  10. Bree Falk

    I don’t have tge words but wanted say my heart greives for you. No mother should have to go through this 🙁 Thank you for being so open.

  11. Dear Knox’s mommy,
    Of course you were a wonderful mother to Knox and I know he felt loved and secure each and everyday. Everything you feel is normal and you will forever be changed. I lost my twin boys and I knew they were suffering even though they were inside me and against every thought inside me I asked GOD to take them if they were going to continue to suffer, I try to believe as a mother this was the only thing that I could actually do for them. GOD took my sons but gives me strength but I still struggle everyday. I understand I guess is what I want to say and to let you know that your story is not over, you have much more to do, and take small steps until they can get bigger and small breaths until they get deeper. It helps me to find ways to honor my children by helping others. If you need to talk feel free to message or email me.
    Love and Strength
    Presten and Kaden’s Mom

  12. Laurie Hoffman

    There are no words that can give you comfort. My heart bleeds for you and your family. I have found just talking to people who care and listen about our beautiful children, just ask questions and remember our babies. If you need to talk please let me know. It does help .
    God bless you and yours.

  13. Colleen Allison

    Hey, I very accidentally found this piece of writing about the death of Knox. Yet, i know God showed it to me for a purpose. I understand. I have had my share of a mother’s pain. As you study Genesis, you will see part of the curse was that the would be “pain in childbearing”. I believe this to be the pain mothers would thereafter have because sin: sickness, genetic problems, accidents, death would now be part of any child’s future. For our family it has been a stillborn twin, a child born with Down syndrome and Autism and three of my children becoming Type 1 insulin dependent . I have faith in Jesus. And He has pulled me out of very dark places when I felt the grief was too much to bear. I cried today as I read the story of Knox death. He is in Heaven. Someday he will tell you what a GREAT mom you were and will always be. The Bible says “Tears last a night time but joy comes in the morning.”. You will pull through. You will be HAPPY again. Whenever it says, “Blessed are those who fear the Lord”, Blessed means Happy in Hebrew.
    That is a promise that gave me hope I would actually feel happy again. And I do–despite all that this life has thrown at my kids–and me–God has enabled me to get through it. God bless you!!!! Thank you for allowing us to mourn with you over precious Knox! What a sweet little buddy. I know you all miss him. Lots of love–praying for joy for you and your family! Colleen

    • He was SO sweet, Colleen! I wish you could’ve met him, so darling and always smiling. It sounds like you have had your share of heart-ache, as well, much more than most. Thank you for these encouraging thoughts, I appreciate them and will re-read them many times, as I often re-read all the comments left for me about Knox. Blessings to you and your family! Scarlett

  14. Sorry as someone new to your amazing site I could only read the first part of this before I was overwhelmed with tears. Even as a Mother I will never be able to fully feel the ultimate pain that you have and are going through.

    As somone who has lost 2 close family members to horrible conditions (Huntingtons and Dementia) the one things I learned is that our loved ones at their sickest teach us some of the most valuable life lessons even in times of hardship and grief.

    One day you will be able to sit in those places with the best memories and at first you may shed a tear they soon will turn to sweet reminders of hom and they will comfort you like a warm blanket of memories and love.

    • Beautiful words, Suzanne. Thank you so much and I agree, Knox taught me lessons no one else could’ve ever taught me. You’re good to remind me of that. <3 Blessings to you and yours! Scarlett

  15. I am so so sorry for your loss Scarlett. I hope so much that some way, some day you will find peace. I too accidentally found your blog as I love art. I love your art and I know you create your art with love. Please remember, all there is is love. Your son is now surrounded by it and you will once again, someday, be joined in love.

    • Thanks so much, Trish. How sweet of you to stop by and take the time to leave these kinds words, thank you so much and thank you especially for the reminder that I’ll see my Knox again someday. Blessings to you and your family! ~Scarlett

  16. Dear Sweet Scarlett,

    I came to your site via pinterest. What a blessing it was to read and feel your words of deep love for your little one. I am so sorry for your loss Scarlett. I pray that you, your son and your family are continually surrounded by as much love as you gave to Knox.
    Much love and comfort in the days to come.

  17. What a beautiful gift you have for words, Scarlett. I’m so very sorry for the loss of your precious little Knox. The pain of losing a child stays with your forever, but changes over time….different for all Mothers, I suppose, but in many ways very much the same. My little Decan died when he was 9 years old back in 1988, yet he is with me always….every day, sometimes in a small way and some days in a much larger part of my day. Be kind to yourself and allow those of us to care to send you and your entire family prayers and warm feelings for years of good memories of Knox. We are a family of kindred souls mourning our sons and looking forward to the day when we see them once more.

  18. Heleen du Plooy

    I am unable to help you or comfort you.
    I do not know you.
    I do know that I am so incredibly proud of you.
    Of the way you were there for your Son Knox.
    He is just in the next realm.
    I also know that he may have been spared more than you and I will ever know.
    You and your family are in my prayers.
    I also know that God is Good, eventually.
    Your lives will never, ever be the same.
    But you know that already.
    Take care and God Bless you xxxx

  19. I happened on your site via Pinterest, but was very moved by this post. Thank you for sharing. In sharing you are allowing us all to help shoulder your grief with you. God bless Knox.

  20. I have tears streaming down my face. I cannot imagine the level of grief that you must be feeling. I am, so far, blessed to have seen both of my children grow up, and grateful to you for putting your feelings into words. May we never take a day for granted.

  21. Geno Hildebrandt

    Dear Scarlett,

    This is the most beautiful, poignant, sad, healing piece of writing I have ever seen. I am grateful to see your heart. I wish to be a better friend. Thanks for opening up your experience to us. I know you will hold Knox in heaven, even if you can no longer hold him here on earth. May your grieving faith hold you now and into the future. And may the One who knew many sorrows and was well acquainted with grief be close by weeping with you, sitting quietly with you, sorrowing with you. I wish I had as well. Peace.

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