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.










  1. Oh, Scarlett. I hear your heart.

  2. My heart is hurting for you – for all of you. Knox only ever knew love in his life – love from a Mommy who gave everything she could to fill as much into a little life. Knox knew more love than most people could ever even imagine.

    Knox is all around you Scarlett…..I know you will feel him……he was and will always be your little soul mate.

    I love you sis and I love your wonderful children. So so much love……can you feel it………

  3. Floy Height

    I weep with you, I feel your loss, I long for you to be able to feel those little arms around your neck just one more time, I wi sh your dreams of him to be of him running and laughing with Tera and Jack who had to wait for his death to be with him, I know you will never forget him, I know his pain is over.

  4. Susan in TX

    I’m so sorry that you are struggling right now. I’ll be praying for rest for you as you continue to grieve.

  5. Scarlett,
    We love you friend. My heart breaks for your families hurt. Knox was a sweetie and now that sweetness is with Jesus the one that understands grief and hurt. He understands love too. He loves Knox so much. God understands how you feel for he watched his son sufer in death too. Knox taught so many people about sweet innocent love. Through your words, art, and pictures he is still teaching. Through his sister’s movie he is reaching more people then most ever would. Through his siblings, you, Brandon, family and friends, he lives forever. Keep telling everyone about your sweet baby and hold close your family!

  6. Oh my sweet friend how I wish I could tell you it gets better but I will not lie! Life just seems to pull me along as I go through the motions of life! We will always sorrow for our children and for the first time in my life, I truly long for heaven so I can be reunited once again with my sweet Grace. You keep yourself busy but your child stays in your mind constantly! It’s good to talk about him….it’s what we do so no one forgets our child. I’m glad you are focusing on the positives because the love you gave Knox was all you could give! There are no answers to all of our why questions. Just know you are not alone in your struggles. All of your CS family is at different parts of the journey but we are all on the same road. Love you my friend! Take one day at a time❤

  7. Scarlett….thank you sharing your heart stories, you are writing the words so many of us feel too xo keep speaking of Knox, I love to say Kirby & Chad’s names too….I don’t want anyone to forget them. Love you xo

  8. Scarlett, sei nel mio cuore

  9. Bev langby

    Dear Scarlet I read your blog but rarely comment….I’m so happy that you are writing about your little Angel ,I’m crying as I read your words….you were given him because he was passing through and he needed to be held and loved by someone special with a full heart….you all made his stay here special one I believe he also remembers and treasures …he’s waiting for the day that you will again take him in your arms and whisper in his ear ..I’m also sure your grief will turn into a productive journey when the time is right…
    Sending lots of love and hugs…..

  10. Thank you for sharing your beautiful photos and memories of Knox.

  11. Julie Seager

    Scarlett, I don’t know you personally, only as an artist I have admired. I have never been blessed with children but, have to say, you amaze me. This is the most beautiful post/story/whatever I have ever read. Bless you sweet woman for being a loving mom. I admire you and respect the struggles you have experienced. You are AMAZING! Please know, I send you strength, love and hope for your children and family. You may not feel like it now, but you are blessed. xoxo Julie~

  12. Karen Pilcher - Texas

    You are not without Knox. He is with you, in you. He is the center of your heart.
    He was ans still is blessed with your love. His bug sister is correct. He is happy, running, jumping and all the things he could not do here but can do in God’s playground. He is forever young now and forever loved. As are you my friend.

  13. My dearest Scarlett – I have had you on my mind and heart constantly. I know this has been horrible. I have no words. Just a huge hug for you whenever I get to see you. You have a lot of people that love you, and I’m so glad you’re talking to them about Knox. I’ll talk with you about Knox anytime you want.
    I miss his jovial little smile as he went by in his stroller with you. You were the absolute BEST mother he could ever ask for. He is so lucky to have you as his mommy, and to have all the love of his family. What a loved little man.
    Please know we are here for you and your family. <3

  14. I follow your blog…I have been to afraid of what to say…my heart is with you..God Bless your sweet Knox…God Bless you…Please hang in there.. talk all you want about him…

  15. Hi Scarlett – I can feel your love for your baby .. and having met you both and the girls … you are an incredible loving family … you will always have Knox with you … yet an ease will come in its own time. The most important thing is that you did your absolute best for him … and each of the family has given of their own selves too …

    My thoughts are always with you … and will be in the coming months … i’ts been an honour to be here and share your blog place, and to have met you … big hugs – Hilary

  16. Thank you for sharing your thoughts, feelings and memories. xxx

  17. I haven’t been where you’ve been but I feel the depth of your despair belies the depth of your love. I wish you peace and strength on your journey.

  18. holly osborn

    My heart breaks for you dear scarlet, parents simply are not made to bury there children. I can think of nothing more heart wrenching than this. Please know I am always here for you, and often thinking of you also. I love you Holly

  19. Scarlett, you have such a gift with words.
    Real feelings, unmatchable pain.
    I hope you are feeling the love and care expressed by everyone who reads your blog. Your words pierce our hearts and we hurt for you and with you.
    Knox was a one-of-a-kind kid who left a lasting impression on everyone he met and I’m assuming people who did not meet him. I know the day you will be reunited with him cannot come soon enough so I am praying for God’s comfort in the meantime .
    Love to you all

  20. Dear Scarlett, I do not know you and have just this evening happened upon your blog for the first time. As I read your post about the passing of your beautiful son, my heart broke. I have never experienced such loss, but I do know the love a mother has for her child. Please know that Knox’s legacy has spread far and has made a profound impact. Thank you for sharing this. Sending you love and light.

  21. Alejandra

    Scarlett, my friend…
    My heart brakes for you, thank you for sharing your feelings and journey. I want you to know that Knox is often talked about at our house 🙂 Alessandra often talks about her sister’s friend, Knox. You are an awesome mother and Knox was so blessed to have you, he was so loved and happy 🙂
    We love you all!

  22. sissy williams

    Dearest Scarlett…I am so sorry for your loss…As a Mama and a Meme I honestly don’t know how you do it. I know you have no choice but to endure this pain.. I never met you or Knox but I can feel the love you gave him and that you still have and will always have for him. My parents lost a child, my brother Bimbo at the age of 8 in an accident.I don’t know how they survived it but they did. I always admired their strength and love to get thru such a difficult time. I wish I would have told them that…but my Mama couldn’t talk about him 40 years later without tearing up, so I didn’t tell her how I admired her and Daddy for the strength they had to go on for me (age 4 and my brother age 2) it had to be so difficult for them…but they made it though, with love and prayers and the birth of another baby boy , Trent, a few years later…I know one child can’t replace another but it brought them joy again..I will pray peace and joy will come for you again someday…I know Knox is feeling this already…Wish great admiration and prayers for you and your family….Sissy

  23. I have never known your pain and sorrow however I feel a closeness to you because I have followed your journey. Thank you for sharing your honesty and truth. May you find peace in your memories of your beautiful boy. Blessings Dear…

  24. I just found your blog today.
    Art can heal, and no words can help
    but thank you for sharing your sweet baby, he is in my heart as are you and your family!

    sending you a big hug!

  25. Thinking of you with so much love.

  26. Scarlett, I am so sorry your little boy isn’t here anymore. Please know just because you cant see, smell or hear him….doesn’t mean hes not there right by your side. You have some beautiful memories of him to treasure for the rest of your life. Thank-you for sharing your story about the very beautiful Knox. I feel privileged to have seen his gorgeous little face and read your story about him. I write this with tears running down my cheek…you have truly touched my heart as a mother of two myself. I wish you much peace. Karen.x

  27. This is the most gut wrenching post I’ve ever read. I’ve followed you for a few years now and this post..this one… is the hardest for me personally, to read. And I’ve read it a dozen times. I am so sorry for your loss… because it is the most horrifically profound loss faced by mothers – and so against nature that for a few short minutes when I visit here, I can almost see and feel the blackness of your world without your son just by reading your words. Or, sense a millimeter of that utter despair. I empathize, but I will never really know what you go through. I have no right to say anything. I will simply close my mouth and bow my head and know that you are hurting the worst kind of hurt there is and there isn’t anything anyone can do for you, to help you. My eyes burn and pools of water form under my eyelids until the saltiness stings and finally come crashing around my cheeks and down my neck. I am a mom. I am so sorry for the emptiness you feel. Thank you for sharing your Knox with us. I will never forget him.

  28. Dear Scarlett..i know the feeling..i just knew it..i was once thinked the same way too..when my 1st daughter passed away, i wish i could keep her body with me..forever with me..but when my 2nd daughter passed away, i realized that no matter how much we try to hold them,they deserved to be free,to rest in peace after so much pain n sorrow..until now,my chest still feel the pain,aches n tears still in my eyes.just be strong as strong as u could be..take care darling..just live with the good memories..

  29. N not to forget, u r such a great artist!

  30. First of all, I would like to express my sincere condolences to you and your family. I can’t even imagine the pain of losing a child. I’m not a mother, but I was born with birth defect called Spina Bifida. It has been a painful road, but I guess we all have to keep going. Thank you for sharing your story.


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