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.