The moment when multiple doctors, nurses, specialists, and social workers all descended upon his room to give us the results of his MRI, explaining that they were shocked that it had come back showing complete devastation of his brain, the likes of which they’d never seen before, I very quickly realized that we were now among those other people. When I was grasping for straws and asked if they were absolutely sure since the cranial ultrasound that had been done on his tiny little head just two weeks prior had shown healthy normal activity and they answered yes, I began to feel the weight of those other people I’d so carefully avoided. But, it wasn’t until I left the room so I could go outside and catch my breath that I finally understood. As I stood outside with the reality of their words crashing down around me I knew. There is no such thing as other people. There are only people.
Eyes Wide Open, Parts 2 & 3
You can read Part 1 here.
Part of living with your eyes tightly shut is that it makes it easier to convince yourself that bad things can only happen to other people. I told myself that since I followed the rules, always did the things I was supposed to do, things like that won’t affect us. Believe it or not, but I’m a pretty smart girl, so I always knew that this reality I’d created for myself wasn’t reality at all, but I chose to keep the charade going because it made me feel safe in a world full of uncertainty. It helped me to feel in control. It wasn’t until my eyes were wide open that I realized exactly how wrong I was.
We were feeling optimistic and hopeful because Samuel had survived the exploratory surgery he had to undergo in order to find out where his bacterial infection was coming from. We felt like we were finally, for the first time in weeks, on the right track. He was still incredibly sick from the infection, but his numbers were beginning to come up, and even in his int-abated state he was able to scrunch up his forehead each time I rubbed it, letting me know that he knew I was there. I would sit and talk to him for hours and he would move his head back and forth as he followed the sound of my voice pacing around the room. When I would run out of things to talk about I would read to him from the IKEA catalog that I still had in my purse from the day I went into preterm labor. Reading to him, even if it was from a furniture catalog where most of the words were foreign to me and difficult to pronounce, made me feel like I was participating in his care. It helped me to not feel in-the-way, because when you’re in a tiny room with well over 20 different doctors and nurses coming and going, all trying to make your child better, you feel in-the-way.
Samuel and I kept this routine up for weeks. We’d switch it up and read from a magazine Scott had picked up for me in the gift shop or the prayer book I bought before his surgery. Reading to him helped me to feel optimistic. Feeling optimistic helped me to keep my wits about me when they would come in and tell us the results of test after test. It helped me stay focused on him when at times it felt like all he was to some staff members was a chart and a rare condition. It kept me by his side which is how I noticed the first twitch of his hand. And then his foot. And how he stopped scrunching his forehead when I rubbed it. And how he stopped following my voice.
I knew in my gut that something wasn’t right, but I ignored it. Just like I had chosen to live with blinders on, I chose to ignore that voice that God gives us to use as our guide. I told myself that because he’d beaten the odds so many times over the past four and half weeks that he could easily do it again.
To be continued…
I hope you’ll join me over at Life Rearranged for Part 3.
You can read Part 4 here.