There were 5 diapers left in his diaper basket.
There were 28 medicine syringes left in the kitchen drawer.
I have received 122 sympathy cards.
And all the flowers have wilted.
In the morning, I wake up and set things up as if he was still here. I lay his star-covered quilt on the bed, I pick his outfit out for the day, and set his stuffed animals out for him. It feels right to do this.
I talk to Knox aloud. I tell him what we would do if he was here.
“It’s too cold for a stroll, Knoxy, but we could take a drive and get some french fries.”
I was going to donate his toys to the children’s hospital, but I’ve been unable to move them.
Knox loved his books. I read some of them to him so many times I know them by heart:
“My name is Nicholas and I live in a hollow tree…I chase the butterflies and the butterflies chase me….”
I will keep all of his books.
At the store last week, I found myself in the dairy section looking for his favorite yogurt. I felt my chest tighten as I realized I no longer needed to look for it.
It has been one month since I have kissed his little cheeks, but I’ve smelled him. I put the pajamas he passed away in in a Ziploc bag and sealed it tight the morning he died. I can close my eyes, open the bag slightly, and smell him. It’s the closest I can get to having him back.
Yes, it’s gotten harder now than when I last posted. Grief does strange things to your mind. I know I’ve heard him here in the house. I’ve heard him grinding his teeth.
I’m angry today because the flowers have wilted. I want all the flowers to be as fresh as his memory. The flowers should be alive, and so should he.
Knox has been gone for 30 days, but the tears I’ve shed are beyond counting.
In the midst of those tears, I assembled this photo progression to show what Cockayne Syndrome did to my baby. The photos begin at age 4 months and end at 3 years.
This is why I’ll continue to keep Knox’s Etsy shop open, and continue to support Amy and Friends for the rest of my life.
My sweet friend how I understand your pain and emptiness! Love you❤
Stacy
Not a day goes by that I don’t shed a tear with just the thought of his sweet smile. My tears come at random moments and I seem to have trouble realizing the sweetest baby I love is gone, honestly I don’t know if I have really taken this in, and probably never will. Always here for you Scarlet. Your friend forever. -Knox’s Nurse Sabrina
P.S The Peace Lilly started with one flower the day I brought it home, now I count three.
Many many prayers and lots of love for you my friend.
Thank you for sharing your heart with us , Scarlett. When I see his pictures it’s hard to breathe and the tears just don’t stop. I worry about you and then when we talk I know you’re going to be ok somehow. I want to be with you every day and I want to give you space and quiet to deal with your feelings . I love you so very much.
I have a plastic bag with Michaels hat he wore most of his last months to keep him warm. It still smells like him…I use it to fill myself up with a big breath of him. Its my best medicine. Each day is a day closer . XO
Not a day has gone by that I haven’t thought of you and your sweet little Knox. I have only been an occasional visitor the last several years but every so often it would occur to me to go and check out what Knox and Scarlet might be up to. I have always thought you were so brave to put all of it out here for us to see. You have more courage than you know.
He will always be in your heart. Be strong, Sweetie.
As soon as you mentioned flowers, that feeling flooded back. Somehow, something so lovely just becomes more pain heaped on top. But I can never understand your pain. As through a glass darkly, I look at you and I pray. Someday we will see face to face – and it will all make sense. Then.
– I continue to love and pray for each of you.
Love and Hugs to you Scarlett, sending you prayers and strength – always!
It’s so early and raw still, give yourself time.
That book is beautiful, though. A beautiful memory to keep, and I know that the butterflies hold special significance for you.
xoxo
This is so tough honey I am sorry. Tears flow so often as I think of your little Knoxy, I can’t imagine the constant pull of missing him, the constant thoughts that must surround your mind, making mundane daily task harder, things just don’t flow anymore. I wish we could all wave a magic wand and either make everything better for you or be able to bring him back, but we don’t and we can’t as much as everyone who loves you would like to. I hope the love of our family and of your sweet beautiful children and god’s grace, will some day be able to give you some peace of mind and spirit. We all love you wishing we could take your pain away, but it doesn’t happen that way. I just hope over time you will be able to feel happy and tranquil again, knowing how your abundance of care and your loving tender heart that you show and give to all your babies especially to sweet little Knox, can turn a tear into a smile one day. We’ll all wait as long as it takes and be there for you in the mean time to love and lift you up! Love you so much!!
I at random times will smell Amaris in the room and I know she’s with me. It’s hard on our mommas` hearts. We will always have the compulsion to check on our babies.
Her death didn’t stop me from being her mom. I just had to learn how to be her mom with her in heaven. And I’m figuring it out.
You will too.
I know it hurts
Love and prayers
He will always be with you xx love and strength xxxxxx
Thank you for sharing. Not a day goes by when I don’t think of you all. Sending you lots of love xx
Dear Scarlett – grief is just grief … so sad, so difficult to adjust to … so apparently without end … talking to Knox is just the way it is and will be … he will help you work your way through … I love the butterfly book – and yes keep his books … with many thoughts and for all those amazing butterfly kids around … and hugs – Hilary
You’re in my thoughts and prayers every day.
Much love ❤️ and complete understanding.
Grief stinks my sweet friend; they’re always with us.
When I think of where you are now – emotionally, spiritually, physically – it brings me back to those first days and months after my Hannah passed. My heart aches for you and the other parents that have lost their sweet babies lately. One day you will be able to be able to think of him and remember the sweet memories and be happy.
Thinking of you every day, Scarlett. Love you for being you and I´m so thankful to have known this sweet little boy. To read about your life without him is so much more hurtful than I ever thought, but please continue to express these feelings. In one way it is helpful. Thank you for continue supporting AAF and the CS families. You are amazing and wonderful! <3
I can’t begin to conceive the depth of your sorrow. So sorry to hear of your loss.
I am so sorry for your loss, and grief. Know that your CS family, no matter how distant, are always thinking of you and Knox as well as all the other parents and children of our extended family. We may not get to talk but we all share the daily struggle of grief but also the glimpses of pure happiness and love through our children and their memories.
Knox will always be with you Scarlett. Stay strong. Hugs, Sophia
Che tristezza queste parole 🙁
Scarlett, sei una grande mamma!
I think of you all every day and pray that the peace that only God can give is showered on your family.
Love,
Bernadette
My heart aches for you. I know this is a wrenching pain that nothing can take away, you are constantly on my mind and I know so many others are also grieving with you and for you. but please remember, you are braver than you believe. Stronger than you seem and smarter than you think!!! You have many many people who love you dearly and want to be there for in any way we can. We all love you so very much
Everytime I see a butterfly, your sweet little Knox crosses my mind, and that thought automatically brings me to thoughts of you. I wonder how you are doing…. and through your blog I now know. Sweet Scarlett, I hope you can feel my hugs from all these miles away. If it helps you, keep doing hat you are doing in the morning. You don’t have to give away any of his things. Just remember….he loved those toys, but he loved YOU more.
I am thankful you are able to post how you feel. I offer you prayers and healing energy. May your precious memories of Knox keep you strong. I have immense admiration for you dear…
hoy he visto tu blog por primera vez y no he podido dejar de leer esta historia, me he sentido en verdad muy conmovida, siento realmente tu perdida y no puedo imaginar tu dolor, solo querría decirte que creo que eres una gran madre y que el amor que sientes por tu hijo nunca se ira, tu hijo vive mientras esté en tu corazón y eso es lo que da fuerza para seguir amando y viviendo. quizás no sera mañana, pero algún día las flores volverán a ser frescas y el sol volverá a brillar. fuerza
Sweet Scarlett,
My heart aches re-reading this passage and I am counting down the days till my trip across the pond in April, when I can finally hug you on behalf of all your family here in the UK.
Your continued support throughout Knox’s life to Amy and Friends has without a doubt been an enormous help to us, we are so very grateful and lucky to have yours, Knox’s, Brandon’s, Sveva’s, Maddie’s and Jack’s love and support.
Love you friend, you’re a day closer to being with your boy again xxx
I did not know when I followed a pin to your page that I would find a mom shattered by the death of her son. No words can express my sorrow for you and the journey you are now on. Since I have lost my son almost 9 years ago, I keep “stumbling” into connections with moms who have lost their child. May you find a moment of peace within your sorrow.
Thanks you for taking a moment to comment, Debbie. I’m glad you found my site and were able to read about my sweet little Knox. Many blessings to you and your family and a kiss to your angel in heaven. ~Scarlett
As with the comment before this, I didn’t know that I was following a pin to a you, a Mom enduring ultimate loss. Your son, Knox, pulls at my heart too. Looking at your posted photos, it’s clear that he lived enveloped in his family’s love. I hurt for you and with you, as another Mom who has been forced to march on through life without that portion of her heart. Thank you for sharing your voice. It is a gift.
Thank you so much, Susan. I appreciate your kind words. I was just working on a post about Knox being gone 1 year and saw your comment. It truly does not feel like a year has passed since I wrote this post. Many blessings to you and your family, and thank you for taking the time to type my son’s name and honor his memory. ~Scarlett