The sky was remarkable as I was pulling on my shoes to rush out the door to Children’s Hospital. Dusk was quickly approaching so I knew what I was seeing would be extremely brief, but at least it distracted me from thinking about Ben’s buddy, Justin, lying in PICU fighting for his life. I peered through my tiny window that faces the toll-road, in total awe. If my apartment sat just a few feet higher, I’d see the traffic passing by instead of the multi-colored wall of dirt that was literally glowing gold thanks to the setting sun. I’ve never seen dirt look so pretty – unless you count the neighbors of my childhood getting gussied up for a late-summer festival. Just kidding. Kinda.
I’d been experiencing the sleep of the dead when my phone started blowing up. “Have you heard?” “Did you see the update?” “Are you going to the hospital?” It didn’t take me long to assume that they were speaking of Ben’s good buddy, Justin. And then as I started to research to be sure, my fears were confirmed. Justin had been moved to PICU with the inability to fight off pneumonia. Since my children were with their father for the weekend, going to the hospital to offer my support in whatever way I could seemed to be the most logical answer.
I picked up my friend and headed over. We nervously chatted about anything, trying to keep it together, since we were headed to the hospital to be a support – not a weepy mess. “Did you see the sky?” she asked. I was glad to learn that it wasn’t just my mind playing tricks on me. We talked about that for a while instead of the night that laid before us.
Most of you know what happened while we were at the hospital last week. Justin’s doctors kept fighting despite his heart’s two attempts to stop. It is often not the cancer itself that kills the fighters, it is some stupid side effect from treatment. Accomplices. Vultures. So cancer can keep its own rap sheet alarmingly limited with charges, while nonsense like pneumonia moves in to do the dirty work. And, with as long as cancer has been bullying Justin, he was right where these scavengers wanted him. He was so very tired. But the rest of us weren’t ready to let him go, including his doctors. They fought all night.
I left at 2 am. I didn’t get to see Justin because the visitation list was very limited. Besides, I knew what he looked like and that’s how he’ll always be in my mind. But what bothered me was not being able to see Lori. I haven’t done the ICU thing very often with my son, but when I did, I know how wonderful a loving hand on my shoulder felt. The times that my son was passed out from pain or ridiculous amounts of medication or the after-effects of surgery, it was nice to know that someone was trying to take away a bit of my pain, because it was so overwhelming to see my son in such a state. I couldn’t imagine what Lori’s heart was experiencing because, thankfully, our journey with Neuroblastoma hadn’t taken us down this particular road. But I ached with not being able to simply put my hand on her shoulder.
At one point, I moved into an empty waiting room while most supporters had stationed themselves right outside the PICU door, waiting for any scrap of information that would come their way. Once alone, I sat on the familiar plastic couch, staring at the floor, trying to wrap my head around what was happening. Even my trusty defense mechanisms didn’t know what to do. Then I looked up to see one of the hospital wagons filled with Justin’s belongings. Two of the ladies who had been waiting went up to the oncology floor to clear out Justin’s room since he’d been moved to PICU. Lori didn’t have time for that. She was in fighting for her son. So, it warmed my heart that a) someone else did that for her, and b) to see things that Justin had collected over this most recent hospital stay. But the thing that touched me the most was seeing his super cool green jacket hanging on the IV pole of the wagon. I’d seen him in this jacket a number of times. It was too big. It dwarfed his 10-year-old frame. And I’d mentioned that it was a super cool green jacket directly to him. He didn’t care about my opinion… and I was simply trying to make conversation. But the important part of our visit was that I was letting Ben and Justin communicate in their favorite way – through video games. And as I watched two boys try to avoid the very real hell that laid before them, my best attempt at communication was to mention how cool his jacket was. So, to see this jacket without Justin in it was what broke me. At that point in the evening, even the doctors were saying that the odds of Justin making it through the night were not strong.
He wasn’t going to get to grow into that jacket.
That’s what solidified the situation in my mind. And it was at that point, all alone in a waiting room with Justin’s green jacket, that I finally felt the numbness that had overtaken my system.
Now, eight days later, we all know that Justin has hung on for another week. He’s had some progress, which was eradicated by some major steps back. And the rumor continues to be that Justin will most likely not survive this. Logically, I know this, but my heart hasn’t accepted it fully.
And, like so many other times, I’ve learned that life is so precious and have been reminded – harshly – that finding the joy is so very important. Despite real life getting in the way, I’m finding ways to celebrate the little things. Hug my children a little longer. Smell the snow-laden air a little bit deeper. Allow myself to cry over the severe losses. And not take anymore shit, which will undoubtedly change next week. I always take other people’s shit. It’s kinda my thing.
Don’t miss the moments that today has afforded you, dear friends. You might not get the opportunity to grow into it. Wear it anyway. Wear it proudly, despite the imperfect fit. Enjoy it. Embrace it.
This moment is so very precious, even if it sucks.
You have an amazing talent for writing. You should write a book for the parents of cancer kids, because you have a way with expressing the feelings that so many people have but can’t put into words. You have such a gift and I hope you share it with the world!
Sarah I could have written this except from the edge of my bed awaiting any new update feeling helpless being 4 hours to the west of you all. And Justin’s green jacket on Dec 27th as I waited for Lori and Justin to come through the lobby of children’s and give him his Xmas present I got a look at him in the wheelchair in his too big jacket that seemed to cover his face as he sat! I am so very thankful for that day!
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