After watching Ronan being hooked up for an EEG last week, I couldn’t help but think of this song. I’ve written about Andra Day’s Rise Up before. Included on a playlist that I shared last April, I’ve added some new thoughts below.
You're broken down and tired
Of living life on a merry-go-round
And you can't find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains
Ronan played this song one evening last year. Cruising the internet on his own, I’m not sure how he found it. Once I heard the song, it stopped me in my tracks. Kneeling down to where he was on the living room rug, I closed my eyes and listened. Tears streamed down my cheeks. Ronan is nonverbal, but my goodness, he can still find ways to express himself.
When the silence isn't quiet
And it feels like it's getting hard to breathe
And I know you feel like dying
But I promise we'll take the world to its feet
Hard to breathe. Some days, when I can’t walk it out, it does feel like it’s getting harder to breathe. But what I have to endure, and can eventually work through, is nothing compared to what Ronan goes through. Take Thursday for instance. It was Holy Thursday, a sacred day for Catholics like me. Instead of it being a quiet, reflective Church day, I spent the day in a hospital with Ronan.
Ronan made it through the lobby holding his Daddy’s hand. He made it into the exam room, too. But the moment he saw the hospital bed, the tangled leads, and the unfamiliar technician assigned to his care, Ronan fought us.
He fought the staff.
He fought being pinned down.
He cried out in fear.
He cried out in pain.
He looked to me for help.
He looked to his Dad for help.
He endured a great amount of agony.
And we were unable to do anything about it.
It wasn’t an easy day at all. As a dear friend pointed out when I shared that Ronan was scheduled for an EEG on that particular day, I agreed with her that there was no coincidence that this test was scheduled on Holy Thursday. Not only is that day part of Holy Week, it’s the day that commemorates Jesus fulfilling His role, a role that included being testing and also being sacrificed. Ronan has sacrificed quite a lot in his short life—his health, his abilities, his future. I’d like to believe that he’s done making sacrifices for the greater good, but the reality he faces tells me that more may come. I don’t think it blasphemy to compare some of the sacrifice that Ronan has undergone to that of our Lord’s. The seizures. The inability to communicate. The incredibly uncomfortable but necessary testing. Some of it truly has been agony. Thankfully, not every moment is. That’s why we continue to hope, to pray, and to do what we can to change things for the better.
Witnessing and later reflecting on how scared and also how brave Ronan was through all that he endured while we were at the hospital was a great reminder—through the frustrations, through the disappointments, and through the falling down moments that exist, somehow, we rise up. As he’s done before, once the procedure was over and as soon as the last electrode was removed, Ronan bounced. And as usual, he bounced back much quicker than I. While we await the results of the EEG, I still have a few things to work out. I won’t let that get in the way of taking care of Ronan though. I can’t. Ronan relies on me for so much, including being positive.
When we got back home Thursday evening, the lingering issues my husband and I have yet to tackle reminded me of something else—sometimes we rise up together. Other times, I am slower to get back on my feet. For those of you who’ve been walking this path as long as I have and who have children like Ronan, you know that we sure do get knocked down quite a bit. From a failed IEP meeting, to being kicked out of a medical practice, to losing friends and being disappointed by family, we continue to rise up. I’m not sure how we find the energy to, but…
We’ll rise up
In spite of the ache
We’ll rise up
And we’ll do it a thousand times again
Even though I am tired. Even though some of those mountains I face are intimidating. Even though I do ache. For Ronan, for my family, for my friends, for you, for this community…a thousand times again, I will always rise up. I promise that I will. And I know that you will, too.
Cathy Jameson is a Contributing Editor for Age of Autism.