My gut told me to call.
My mother had just been hospitalized for the second time in a month. The first time, I hadn’t been called and I was more than a little upset.
This time. I was called.
My mother assured me that it was nothing to be concerned about, though I’ll admit I ended our conversation more than a little concerned as my normally optimistic mother had been unusually vulnerable and honest in describing how her struggles had been impacting her daily life. As the hospital she was in was a decent drive for me, she made great effort to assure me that my planned visit during the upcoming weekend would be perfectly fine.
It didn’t feel fine.
The very next night, a Friday night, I trusted my gut and called her again. We had only a brief conversation about her health, my life, and my planned visit the next day. It was, especially for two people who didn’t routinely have deep conversations, an immensely satisfying few moments.
When I arrived the next morning, everything had changed. Over night, the doctors had become concerned with some abnormal labs and decided to transfer my mother to the Intensive Care Unit for closer monitoring.
They were concerned, but not necessarily critically alarmed.
Then, in the midst of placing a G-tube “it” happened.
For reasons not completely determined, my mother coded.
My father, who has never been even remotely comfortable in hospitals, spent the next several moments at a complete loss as what had been described as a routine procedure had now suddenly become a life-and-death situation. Suddenly, the woman with whom he’d spent 48+ years of his life in marriage was barely hanging on to life despite, only weeks earlier, having still been working in hospitality for that very hospital.
She was only 68-years-old. She was vibrant and active. I mean, sure, she had health issues but nothing that would have ever caused such alarm.
But, there she was.
Having been born with spina bifida, I’ve always been the one who was supposed to die first.
We all knew it. We all planned for it. Heck, there was no long-term planning in my life until I actually did arrive in my 20’s and doctors stopped predicting my demise. If you’d have ever told me that I’d live long enough to even contemplate the mortality of my parents or my brother, I’d have likely laughed in your face.
But, there she was.
I arrived at the hospital that Saturday morning expecting to have a pleasant and uneventful visit with my mother.
Instead, I listened to my father describe the moments after moments after moments that he spent waiting for some word.
They brought her back. He was relieved, though I’m not completely sure he even understood everything that had happened.
She was alive, but she was on a ventilator. She would stay on the vent for several days, days in which my father and I spent more time together than we’d probably spent in the past several years combined. We consoled each other in that sort of guarded, non-communicative way that the Propes men communicate. We clung to hope despite the occasional setback, and while we had concerns about her care in the small county hospital where she was being treated we also rejoiced that she was surrounded by friends and co-workers who really cared about her deeply.
There were so many unanswered questions.
Why did this happen? Would she survive? Would she be who she had been if she did survive? How long had she truly gone without oxygen to the brain? What would be her quality of life?
My father, who had retired only a couple years earlier after spending a lifetime working as a carpenter, functioned amazingly well and displayed more emotions than I’d probably seen from him in my entire life.
She is his entire life.
I mean, c’mon, 48 years? I can’t imagine. I’m excited when I make a relationship last 48 days.
After several days, she came off the vent and was transferred to a progressive care hospital. After about 10 days at that facility, she was transferred to a rehab hospital in hopes that she could build up enough strength to return home.
Then, another setback and another admission to a different hospital. She was in critical care once again and, yes, she was back on the vent.
Now, she is back at the rehab hospital.
We are starting to get answers. We are starting to understand. Even as my parents’ 49th wedding anniversary passed just a little over a week ago, I’m starting to see that everything has changed.
She is still my mother, but her ability to function in that role is disappearing. While our relationship has always been functional yet strained, recent years had brought about new understandings and new attempts at building a bridge over those things that had divided us. She may not have been a “traditional” mother, whatever that means, but as I look at her now I realize that so much of what has defined her has disappeared.
I don’t think it’s coming back.
There are days that she recognizes me perfectly. There are days when she’ll say she recognizes me, but she can’t quite recall the name.
Then, there are days when the severe brain injury that resulted from those moments without oxygen has left her with corrupted memories and thoughts and function. We went through a period of 72 hours where we had the most remarkable, vulnerable and honest conversations.
Then, they were gone.
The challenge now is figuring out if she can heal enough to return home, a stated goal of hers yet a goal complicated by her inability or refusal to eat or build her strength.
Maybe she can. Maybe she can’t. After two solid months in four different hospitals, I am left with this weird and undefinable grief that doesn’t seem to have any tangible markers other than the truth that this person I have known as mother and this person who has functioned as mother, wife, sister, daughter, grandmother, employee, friend and so on has changed.
As an adult with a disability, it scares me more than a little because here was the last person who really understood my disability even if her involvement in my daily life had long ago been set aside.
As her son and as a man whose personality is more than a little like hers, I find myself frequently leaving the hospital angry because these people who now care for her, and I know they’re doing their best, but they don’t “know” her and they don’t seem to really want to know her.
To them, this is her “baseline.” This baseline, though, doesn’t account for years as a wife. This baseline doesn’t account for being a 20-year-old newlywed suddenly forced to deal with a child with a serious disability and a short life expectancy. This baseline doesn’t account for her years working as a top salesperson for a food wholesaler or even for those goofy years when she tried selling used cars. This baseline doesn’t seem to even acknowledge that just three months ago, my mother was working at the front desk of a hospital providing smiles and nurturing for families who were scared and grieving and frustrated just like ours.
This, as much as this is her life experience right now, is not her identity. It doesn’t erase the joys and the sorrows. It doesn’t erase the victories and the failures. It doesn’t. It just can’t.
In our last truly coherent conversation, we both said “I love you” and we both laughed at how she was learning all those lessons first-hand that I’d learned in my years in hospitals. She told me that she’d never said she was proud of me enough and I responded with “and I’ve never said “thank you” for turning me into who I am nearly enough.”
There was a moment of silence. Then, we said “goodbye.”
Then, everything changed.
Who's Yer' Gimp? 