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.