Yesterday, Charlie ran into my room for the tenth time of the morning, causing mayhem by knocking my jewelry off of the dresser and playing with the buttons on the window air conditioner. As I pulled him (all 60+ lbs of him) up onto the bed, I tried to distract him with the television. I entered “12” into the remote. “12” is my go-to-channel for every TV-related emergency: it is public television. Curious George was on. And while it did capture Charlie’s attention only for a minute, I found myself smiling at the animation and silly plot.
You see, I missed all of the simple pleasures of childhood when my daughter was little. I was always working, cleaning (“multitasking”) or caring for Charlie, who had hundreds of seizures daily through Ryan’s second, third, and fourth years of life. TV was a tool, and yes, I admit, a babysitter. I never just sat down and watched an episode with my kids.
When you have a child like Charlie, whose personality is frozen at age two, you have a lot more opportunities to take it all in. You are forced to go slower, to stop comparing, to take each day as it comes.
This life is not sad. His existence is not sad. HE is not sad. Quite the contrary. I feel sorry for people who do not get to experience the life-transforming joy that comes with having a child like Charlie.
This is more than a good thing. This is a miracle.
Infantile spasms robbed me of all joy as I knew it for many, many years. But what was sent in its place is a joy the depths of which only a mother of a child like Charlie can possibly understand. This is my reward.
This is my evidence of God.
He is my joy, my redemption, the source of a million chances to do something right with my life.
This is the joy I feel every morning at 4 AM when I change his soaking wet diaper, pajamas, and sheets, and he whines until I give him a toy. I find myself smiling and love-talking to him while I do this. I suffer this gladly, no matter how late I was up the night before or how many meetings I have the day ahead.
This is the joy I feel while staying up all night with him in the uncomfortable hospital bed, then entertaining him all day in that small room as he runs around, tethered to the wall, watching for seizures on the video EEG.
This is the joy I feel when I switch gears, reintegrate into a business meeting or school function for my daughter, perform exceptionally well, and mention none of the special challenges that I had that day, or that I face later that night.
This is the joy I feel when I am contacted by a parent of a child newly diagnosed with this horrendous condition, and somehow I know just what to say to them to make them feel like they can handle it, at least for one more day.
Joy has become my superpower.
This joy is walking me toward a profound peace. I’m not quite there yet, but I am close.
This is the peace I feel when I bring him to the children’s hospital and hear that there is little more to be done on their end to raise his level of function.
Please note the joy on my face before expressing your condolences to me, either in words or facial expressions, when you see me caring for Charlie out in the community. You will notice, I may seem tired, and perhaps a bit stressed, but never, ever unhappy. It is impossible to know Charlie and be unhappy. I am becoming the woman, and mother, I always wanted to be before I had Charlie. I am doing GREAT in every area that matters.
I am Charlie’s mother. I am SO lucky.