The Daily Grind of Life on the Edge of Living

10276558_10152136056348992_1825844190_nTwo years ago, we walked Ted out of UCLA hospital after a surgery to remove brain tissue that was believed to be the cause of his lifetime of seizure activity. Surgery was a traumatic experience for me as his mother. I was terrified. And today, when I look at this photo, I see the smile of happiness, anticipation,  excitement in his eyes. I see the sweet demeanor working so fervently to peek through the temporary flattened affect that frontal lobe surgeries can cause. While those images remind me that he is better than he was two years ago, I am also quite clear that we are far from where I want to be.

“Any idiot can face a crisis. It is this day-to-day living that wears you out.” – Anton Chekhov

I’ve been thinking about this quote recently. It was a guiding mantra for me during his surgery. Oddly enough, I’m encouraged by the simplicity of the complicated things in life. Maybe it’s my dad’s voice in my head? Or my pragmatic, Kansas upbringing. Anton’s succinct reminder is that there’s really no choice but to fight and move forward, despite the seemingly overwhelming circumstances in a crisis.

Well, Ted is having part of his brain removed today. Yup. Nothing to it but to do it!

Having your child hospitalized or undergoing brain surgery or open-heart surgery is just  like that. It’s a crisis. You kiss him on the forehead before he’s wheeled back to face the team of doctors, waiting to make their play at making his life better. A few hours (or several) later, you are summoned to recovery to kiss him again. This time, you kiss him on the bandages that are tightly wrapped to compress the healing wound. And then you wait.

You wait for the next nurse to check another beeping machine. You wait for the team to make their rounds. You wait for the doctor to remind you that you also need to sleep. You wait for him to begin to show those first signs of recovery. Whether you like it or not, the crisis evolves to the next stage of no-longer-a-crisis. Whether you are ready or not, life moves on. You do your best. But the window of crisis is small and thankfully, fleeting.

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Two years ago, after the initial window of post-surgical crisis was closed and curtained, I realized how deeply I wanted Ted to be “better”. It’s taken me these past two years to truly understand what I have been looking for in “better”. As Anton reminds us, this day-to-day living wears you out. Having a child with a chronic illness or lifelong condition is a bit like facing a crisis. A crisis every day, that is. EVERY DAMN DAY.

Every morning when I wake up, I listen for Ted. Despite having his tonsils and adenoids removed many years ago, he still snores softly. For me, it’s a sound that reassures me that he is alive. Ted’s condition increases greatly his chances of dying from SUDEP (Sudden Unexplained Death from Epilepsy). His risk of dying is highest at night. He is at risk of dying every night. So you can imagine that no sound is sweeter to me than the sound of my son’s snoring!

So, what I’m describing here is that I make my way through crisis every morning. By the time I’ve poured my coffee, I’ve already seen what I hope is the worst of my day. Most days I’m okay. Some days, my tears pour as thickly as my coffee. This day-to-day living really does wear me out. And the crisis part of the day-to-day, I suppose, is what allows me to get over it all and move on. At least until the next morning.

But what is it that I want for Ted? I want him to be seizure-free, yes. I want him to continue to grow and develop and improve his cognitive ability that has been barraged by 16 years of epileptic activity. I want him to have meaningful relationships with friends and family. I want him to have work that he is excited and proud to do. Above all, I want him to live. This is the important goal. I want the risk of death to decrease and disappear. I want my son to live.

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Unfortunately, my sister faces a similar journey tonight. Her son was hit by a car today. While it’s a miracle that he is alive, his little body full of fractures, lacerations, bleeding, and acute trauma. He has a long road of recovery before he’s back on the pitcher’s mound. The odds are with him. He has a strong will and an even stronger mother behind him. My sweet sister. I want nothing more than to scoop her up and tell her it will all be okay. But I can’t. I can’t because even I know that this may appear a crisis to others, but to us mothers, this is the crisis of day-to-day living.

Life is so short, considering all that we pack into it. It’s no wonder that we cling to tightly to each day. And we cling even tighter to the illusion of control over the lives that our children live. Yes, it’s biological that we would do everything in our power to ensure their survival. But, there’s only so much we can control. All we can do is show up, do our best, and accept that there are things out of our control, including brain lesions and speeding cars. 11426240_10153079969873992_5468293588372826986_n

Grace? Don’t Make Me Laugh!

Just the other day, I was talking to a friend who is adjusting to life as her husband recuperates from a stroke. Yikes! As you can imagine, she was overwhelmed. She was navigating the ins and outs of supporting her husband’s recovery, relearning how to cook with a new and more restrictive diet, and somewhere amidst it all, her two young girls were looking for their mommy to feed them, hug them, and nourish their souls. But all that my sweet friend wanted to do was curl up and cry. Who can blame her!

I certainly can’t blame her at all!

But here’s the punch line in our brief conversation via text message… Looking for answers, inspiration, or maybe just a fleck of hope, she asked me how I handled my own life with such Grace.

Wait. Grace?

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Ha! I’m still laughing. Grace. Seriously, I’m crying in fits of laughter.

You see, I’ve been working for 15 years on Grace. Maybe it’s been 41 years. Who’s counting, anyway?

When our son was diagnosed with Infantile Spasms at 6 months old, Grace wasn’t even part of my vocabulary. The tears pouring down my face, my eyes poured over medical texts, research, test results, anecdotal stories from other parents, and everything I could find about how to help my son. The tears never dried, they just ran out. The feelings of pain, helplessness, guilt, fear, anger, never gave way to Grace or patience or hope back then. They raged, waxing and waning, as my energy levels would allow. But oh, they raged on.

Years went by. My son experienced reprieves from constant seizures only to have another wave of neurological trauma crash over him and the rest of us. There were good days even happy moments when the days were darkest. Joy was messy. Never clean cut. And never long-lasting.

But eventually, I began to find joy in those good days. His first words, his first arm farts, his absolute love of running, jumping, and pounding anything into whatever he could; it was all a joy to see and to experience firsthand as the mother of the boy they said would never talk, never walk, never attend school, and never find what we know as a normal childhood.

Some days were bad. Very, very bad. His second birthday when he had his first tonic seizure and lost consciousness. The night his friend slept over only to awaken with Ted mid-seizure convulsing having fallen out of bed. The day we met with his teachers only to discover how little they understood about his condition. Everyday I see his eyes heavy with neuro-fatigue, his speech slowed, and his head shifting to the side is a bad day.

Those days bring my blood to boil. Anger, hopelessness, sadness, exhaustion.  Yes, I can say wholeheartedly that Grace was never part of my operating procedure. Not even once.

So, what is it that my sweet friend sees that she thinks is Grace? (Still, I’m laughing at this thought!)

If I really think hard about it…

She sees me laugh. She sees me hug and kiss my kids (and every baby that crosses my path). She sees me putting dinner on the table for my family and then opening my door to many more friends. She sees me making jokes, dancing, and chasing toddlers while making monster noises. She sees me charting course to pursue my own dreams. She sees me hold my husband’s hand, everyday tighter than we used to hold each other because we’ve worked hard to be better to each other. She sees me clean (okay, that’s a lie. She only sees that my house is clean because I’ve hired someone!) She sees me read. She sees me write. She sees me play. She sees me work. She sees me living life.

And she sees me smile. Often the smile is accompanied by a glimmer in my eye. Is it sadness? Sometimes it’s hope. Fatigue is always a good bet. But there are moments of joy.

There are many moments of joy.

So maybe Grace is simply the act of living. The beauty of which is seen only when the act of living is pure, unplanned, honest, and yes… messy.

Yes, I think that’s my Grace. Messy but pure. Unplanned but honest. It’s real. And its value comes from the tarnish not necessarily the polish. Its beauty from the moments of joy that are strung together and broken apart then pieced together over and over and over again.

This is my Grace. And I’m thankful she sees it.