“If you focus on what you left behind, you’ll never be able to see what lies ahead.” – Remi Gaillard
My life changed drastically just a little over two short years ago. The things that happen to “other people” were suddenly happening to us.
My son was diagnosed with a chronic illness.
In a matter of mere months, my seemingly healthy 21-year-old son was suddenly being transported by ambulance to the nearest university hospital and undergoing lifesaving surgery that would leave him without his entire large intestine.
No, not his spleen. Not his appendix. Not his tonsils, for goodness’ sake. Nothing that the body can easily live without. No. It was his ENTIRE large intestine.
And let me tell you, life changes drastically when you lose something like that.
So many hospitalizations were to follow. No sooner had he recovered from one surgery, we were back having another. And then, once the surgeries were over, came the adjustment. Trying to live life in this new state. Many hospitalizations would come from that too. There was even one time that his weight plummeted to 110 pounds (he started this process close to 190) and we truly almost lost him. Had it not been for the intervention of a PICC feeding line, we would have. A year to the day before, my son had been out playing basketball with his buddies, and there I was now looking down at his shriveled tiny body in a large hospital bed being kept alive by a string of milk-like substance being pumped directly into his heart.
I was scared. I didn’t want to lose my son. I kept it together at the time, of course. I kept putting one foot in front of the other and doing everything that needed to be done to keep my son with me. That’s all that mattered.
Soon after, we would come to understand that the lifesaving surgery was not the cure we hoped it to be. What had been diagnosed as ulcerative colitis, a disease that would end with the removal of the colon, was later deemed to be a severe case of Crohn’s Disease. A disease that would affect the entirety of his digestive tract. A disease that had no cure.
My son would have a lifelong fight ahead of him. On top of everything he had already been through.
At some point, I stopped being scared. That fear started to morph into something else.
Anger.
Oh yes. I was MAD. And once that anger set in, there was no letting it go. It was behind everything I did. Every word that came from my mouth had an underlying tone of anger. There was the question everyone asks when something like this happens – when you have to watch the person you love more than anything going through so much pain and loss. The question we all ask when we don’t understand.
WHY?
I’m not sure that question will ever be answered really. None of us have the capacity to understand why things happen the way they do.
But I do remember vividly the moment my anger started to ease.
One of the things I did to try to maintain some semblance of sanity through all of my son’s hospitalizations was to read. I’ve always been the type to grab a book when my own life gets too heavy so I that I could quietly fade away into someone else’s. Feeling a fictional character’s pain and loss was easier than feeling my own. Once the last page was turned, it was over. There was an ending. As the book finished, so did their troubles.
And then it was back to my own.
For many nights as I sat by his bedside, I’d have a book in my lap. What little sleep I did get was fitful – interrupted by the nurses coming in to check on him, or just by my own scattered brain. So, I’d fill the hours with books.
And I’ll never forget when I read the line that somehow changed me. The line that has still stuck with me to this day and comes back into my mind as often as I need it to.
The book was The Storyteller by Jodi Picoult. In one part, a woman is remembering back to when she walked in on her grandmother as she was coming out of a bath. She had just survived breast cancer and had recently undergone a mastectomy. The woman remembers her childhood self seeing that for the first time and recounts it as follows:
“‘…It’s missing,’ I said.
My grandmother smiled… ‘Yes,’ she said. ‘But see how much of me is left?’”
I remember reading that like it was yesterday. Before I even had time to fully process what I was feeling, I had to lay the book down and wipe my tears away. That sentence felt like a punch. A good punch, but a punch nonetheless. Here I was, mad at the world because so much of my son was missing. So much of his life was not going to be the same. So many of his plans were derailed and all because of what was took from him. What was ‘missing.’
And yet.
See how much of me is left?
In that very hospital where I sat, all around me at any given moment there were mothers and fathers saying final goodbyes to their children. To their loved ones. To the ones that lost everything, not just a piece of them.
See how much of me is left?
I still had my child. He still had his life. He was here. Right here in front of me.
See how much of me is left?
So very much was left. He has years ahead of him. He’ll have treatments to undergo, sure. But he’ll be here to undergo them. Life will go on. He’s HERE.
My baby is HERE.
See how much of me is left?
This has become a mantra for me in many ways. I’ve applied it to more situations even than the one with my son. Any time I lose something, I do my best to remember what’s left. To not focus on what’s gone, but to focus on what remains.
This simple little sentence in a novel somehow redirected my thoughts.
Of course, I’m human. Sometimes I fail and lose a little time focusing on what we don’t have anymore. But I always climb back out of it. And I do so with those words on my mind. I look at my son and see a warrior. A strong fighter who has battled in his own war for almost three years now and is still so full of life. So full of hope and a future. I look at my baby and I hear those words coming from him over and over and over again.
See how much of me is left?
Yes. I do, son. And there are no words for how grateful I am for that. Go out there and show the world why you’re still here. And know that your mother will be smiling in the background, filled with so much pride and gratitude for how much of you is left.
So, yeah. I truly believed that it was just people who know me that read this. Not random strangers. So there’s this: the blog. I guess that makes me known, whatever that means. But I also guess that running my mouth has gotten me a bit known here in this town too. Like the time I, a progressive (unless you ask the people who are pissed at me right now), spoke about transgender rights at a local Republican party meeting. Or the time I joined a local protest at the courthouse when the county spent a bajillion dollars (ok, $2500) on putting big gold letters up that say “In God We Trust.” No, I’m not an atheist. But I’m aware that there are many that live in this county and we shouldn’t waste their hard-earned taxpayer money on something so blatantly unnecessary when we’re one of the poorest counties in the state. And then that protest led to me starting a group called Agreeable Disagreers which worked to raise that $2500 back and spread it back into the community where it was most needed. No, it didn’t take those letters down – what’s done is done – but some of us – Christians, Atheists and everything in between – felt a little better about doing what was right.
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MissyRambles 