Since I wrote that last, infamous, Costco/disaster post, several things happened.
It got shared. A lot.
Ksl.com wrote about it.
Lots and lots of people responded, and many of them were absolutely vicious in their condemnation of me. It was a level of vitriol I have never before experienced with anything I’ve written.
I sustained PTSD after reading only a sampling of the cruel comments that strangers wrote about me and Jack. I am not kidding when I say I was traumatized.
I needed resolution. I wanted to let go of the anger I felt toward the haters. The night before Easter, I took Jesus seriously. I visualized myself printing off every last mean-spirited comment, placing the pages in a shoebox that Truman is currently using for his rock collection, and wrapping it tightly with bungee cords. In my mind’s eye, I then solemnly carried that shoebox of hate and set it on the sacrament table in the chapel of my church. I put it on the altar, basically, and I left it there. When I woke up Easter morning, the burden was gone. I felt better.
I had a beautiful Easter Sunday. I felt thankful for the Savior, whose suffering paid for my trauma, Jack’s disabled life, the haters’ bad behavior, and every unfairness and sadness and wrongdoing that ever was or will be.
I thought a lot about the irony of angry, condemning people reading that post, wherein I am vulnerable in my honesty of the nature of parenting a severely disabled child, and where I also talk about this daily work as a sacred gift to Jesus Christ, who sustains me through the horror of it. The irony of the people who angry-commented is this: they couldn’t see any of that. They saw only themselves and an unwillingness to share a public space for a few moments of one day of their whole life with a person with isn’t mentally “perfect.”
I decided I didn’t want to be like them. I wanted to see past the ugly behavior and forgive the imperfect people who lashed out, condemning my family. I wanted to do what Jesus would do, not because I feel love for people who hate me, but because if Jesus loves them, then they must have the capacity for good. The atonement can heal their ignorance, as it can heal Jack’s disabilities and my shortcomings.
Jack had surgery today. This involved setting our alarms for 4:45 AM, but then actually waking up at 3:45 AM, because Jack was having a dance party in his room in the wee hours. Whyyyyy? We checked in at pre-op at 6:00 AM and were home before noon. There were no behavior problems. Jack did scratch one spot on his face when they put the anesthesia mask over his mouth, but that was the only blood. He was a good boy. Miraculously, we were able to arrange for dental work as well as his ear tube/ear cleaning.
While everything with the surgery went smoothly this morning, I am at a level of exhaustion that is stunning, even to a veteran SN mom like me. I am wasted. This is when I weep openly, pray aloud in desperation, and retrench to survival mode. Put one foot in front of the other foot. Take the day one minute at a time. Hold on through this meltdown and that aggressive behavior and all the screaming and the rigid demands. Hang on a little longer. Reduce expectations and forget about the rest of the world. Survive this day with my family, and then get in bed and thank God that He brought us through it.
A few other deeply emotional things happened too, but I am not at the point of publishing them here, particularly after last week. I’m working privately through my grief on a few issues. I feel peace, but also sadness.
You guys, I am tired of being the face of disabilities awareness. I am tired of the impatience, the judgment, the looks, and lack of concern or understanding by some. I am tired of putting myself out there, of stepping into the arena (as Brene Brown describes it), and being a perpetual vivid, visual example of imperfection and struggle.
I am weary of it.
I told Jeff that perhaps the purpose of this blog has run its course. Maybe it’s time for me to fly under the radar and just live, carrying my enormous burden without the magnifying glass of the internet and ill-mannered strangers weighing in on how I should be doing things.
Jeff, who is a deeply private person, said this, “The people who wrote those horrible things know nothing about raising a person like Jack. THEY KNOW NOTHING. Their opinion means nothing in this scenario.”
He also said, “Of course you can’t stop writing. You can definitely tell ksl to take a hike, but your blog is something different. If you do it because you feel called to do it, then carry on and share hope.”
And so, I ate an unhealthy amount of Cadbury mini eggs and I opened my laptop as I climbed into bed after this long, trying day. And I wrote about it.