It’s been a little over a year since I found out that my baby boy is rapidly aging.
This disease called Cockayne Syndrome is the worst thing I’ve ever seen.
A fellow CS mother posted the question on FB recently, “Why would such a thing exist?”
And I echo her: WHY???
A counselor has encouraged me to journal my feelings to help sort through some of the tougher emotions, but I’ve never liked journaling.
I can draw my feelings but finding words is difficult.
It seems like my heart is just as heavy now as it was when Knox was diagnosed.
Perhaps a friend of mine was right when she said we grieve ahead when we’re faced with this type of tragedy.
It’s a helpless and frustrating feeling.
I must watch Knox suffer just as the other children with CS suffer.
I’ve seen a death come unexpectedly.
My father died tragically at age 34.
And I’ve seen a death come slowly.
My mother died after a particularly cruel battle with cancer at age 50.
But I’ve never seen a death coming so early.
If Knox follows the path of other children with CS2, he’ll go to heaven around 4-7 yrs.
He’ll be buried beside his grandmother in a plot that was originally purchased for me.
The only words that come to me are these:
***I Love You, Knox***
Knox will be turning 2 years old in just a few days so I’ll be posting some special birthday photos of him.
I’ll also be posting some gorgeous glass mosaic butterflies soon that a talented artist friend of mine donated to Knox’s Etsy shop.
And those are happier thoughts to end on.