It was my birthday last month and I received a priceless gift:
All the videos from Knox’s life on DVDs! No gift could equal this.
The greatest comfort I have in this stage of grief is watching the joys of Knox’s life. I love watching each and every video, no matter how short. I watch videos of Knox a lot. Maybe too much.
Now I can pop in a DVD and gaze at continuous footage of him on the big screen….my little precious boy with his cute glasses and spikey hair.
I know most people have never heard of Cockayne Syndrome, so I’d like to tell you something surprising.
A loving nature is a symptom.
Yes, it really is. The loving nature of CS children is considered an actual symptom of the disease.
Dr. Neilan of Boston Children’s Hospital acknowledges this in the documentary “Love Has Wings” (at approx. 23:40) saying, ” Children with Cockayne Syndrome have a very friendly personality, which almost seems to be a characteristic of the disorder.”
How did I miss how remarkable that is?
Admittedly, I could not think about much when Knox was with us. I was so angry at what was happening and I could not accept CS as a blessing during Knox’s lifetime. I remember one of his specialists advising me to consider how preferable CS was to others illnesses shortly after diagnosis!? I thought he was a nut! Preferable? How could CS be preferable to anything? I could not comprehend that.
I had always thought of symptoms as purely negative things. A symptom meant something is not working correctly. Truly, CS children do have severe and heartbreaking symptoms. That can’t be denied. But the symptom I remember most when I think about Knox now is not his poor eyesight, failing hearing, tight muscles, or neurological deterioration, but his loving nature.
I look back and watch the videos of happy days and there it is! In every frame captured from his life I can see it clearly: that sweetness of CS.
How could I have been so blessed?
I would’ve chosen life and health for him, but I wasn’t given that choice. And that still bothers me. My mood can turn dark quickly when memories of his suffering re-surface. Sadness can still stop me in my tracks and some memories can still make me feel like I can’t breathe. It’s awful.
The Protestant preacher, Jonathan Edwards, said, “The same sun that causes the brightness of the day at noon, causes the shadows at 3 o’clock”.
I still don’t understand why it happened, but if the shadows had to fall, I’m thankful God gave me Knox.