#16: Broken

I broke a glass yesterday, and I shattered right along with it.

It was a glass we got on a family vacation to San Diego a few summers ago. It was the best trip we’ve ever taken, before ALS, when life was so much lighter.

My son saw me crouched down on the floor by the dishwasher, tears pouring from my eyes, sobbing so hard I shook. He put his hand on my back.

“Mom? Oh no, your favorite glass. I’m so sorry Mommy. Don’t worry, we will go back to San Diego soon, and you can get another one.”

I hugged him hard.

He’s right that the four of us might go back to San Diego, when the world is safe again, but that family, the one who went on that trip just a few short summers ago, doesn’t exist anymore.

We are different now. I am different now. Chris is different now. Just like the glass, we are a bit broken. My sadness is always under the surface, ready to split into a huge, gaping wound over something as small as a cracked glass.

Cohen resumed getting dressed for hockey practice, and I heard him say to Chris, “I guess Mommy really loved that glass.” Chris looked at me with worried eyes and said to him, “Oh bud, I don’t think it’s about the glass. Mom has had a hard day.”

Life is heavy now. Chris’ swallowing is getting harder every day, and I cannot help him. I am constantly aware that the moments I hold closest to my heart are slipping through my fingers, and I cannot hold on to them.

Last week I was putting away dishes when I turned around and saw the kids at the island, eating supper and reading books, and Chris sitting in a chair on his computer. I stood there completely frozen, just watching them. The sheer ordinariness of the moment took my breath away.

It was so small, so simple, and even as I stood there watching I felt like it was fading away, becoming a memory, another moment to catalog.

My stomach clenched and my eyes burned and my throat tightened. My anguish, as is often the case, went undetected from the outside.

Inside, I screamed.

God, I just want to keep this life. Just this simple little life I have. That’s it. These three, this warm house, this place where my kids don’t know the losses that could still be coming their way. This constantly evaporating space where ALS doesn’t dominate their thoughts the way it does mine.

This space where their dad is not dying.

We all want to protect our kids. We buckle them into their car seats and walk them to school and hold their hands. And now I can see this semi truck barreling right toward them, and I cannot move them. I cannot save them from this. I cannot keep them safe from a loss that I cannot fathom having to endure myself.

When I was young I loved the well-worn quote from Thoreau — “If one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with a success unexpected in common hours.”

Then, it was about all the things I wanted while growing up in a town of 900 people, about the joy I would experience on my way to my dreams.

Now, all I want are the common hours. They are my dream.

I want kids who smile in the safety of knowing their parents are ok, ones who don’t even have to consider anything else, ones who don’t look at me with fear-filled eyes every time their dad coughs, ones who don’t call me from their bedroom, crying because they had a dream that daddy choked and died. I want family movies and lazy Sunday mornings with pancakes and arguing over weekend chores and driving to hockey and a lifetime of nights where I grab a blanket and sling my legs over the top of Chris’ or fall asleep on the couch with my head in his lap. I want conversations with him. I want to hear his laugh and listen to his stories.

I want only the simple parts of this life I have built with these people I love, and when you feel so scared of losing those the challenge is to stay present enough to enjoy them while they are still happening.

At times I feel like I am two people, the one standing at school pickup talking to the other moms like it’s just a regular day, and this other person who sort of floats above the scene, curiously watching how strange the dichotomy of her life is now.

She will walk to school pickup, texting with doctors about feeding tubes and wondering how much longer before her husband cannot eat or drink or talk at all, and then she’ll slide her phone in her pocket, take a deep breath, force a smile and mention the beautiful weather we’re having.

She will stand in the corner of her kitchen and watch her beautiful family existing in front of her, and then she will quietly slip away to the bathroom, where her body will heave with silent sobs before she splashes some water on her face, opens the door and cheerily asks who wants some dessert.

She will sit outside on a beautiful sunny afternoon with some of her favourite people. On both sides of her, her friends will talk and laugh, and for a time she will be there, one person instead of two, solidly in the present, with a late autumn sun on her face and people she loves surrounding her. She will be aware that the weather, the day, the people are a gift.

She will share stories and talk about Halloween the night before and look at photos of her friends’ kids, all dressed up. And then her phone will buzz. A text from her husband will say, “I hate eating.”

And suddenly her friends will be sitting all around her but she will be gone, split in two again. She’ll send her husband a reassuring message, put her phone down and look up. Her friends will be doing exactly what she wants them to do, exactly what she’s asked them to do — being normal.

She will watch them, listen to them. She loves them, and she is so grateful for them. But she is different from them.

She can’t stay in the normal. She can’t put her life away. She will leave this lunch and go home and try to find a way to make eating a bit easier for her husband. She will message with other ALS patients about things that have worked for them. She will email doctors to say it is time to schedule a procedure for feeding tube placement.

But for now she will take a deep breath and rejoin the present. She will smile at her friends, and listen to their joys and their heartaches, and when she goes home she will hug her babies and kiss her husband and play catch with them outside in the fading daylight.

Now ALS runs in the background of every thought and every experience. There are no breaks from it. Those three letters color everything. In every sad moment, they are there, taking from her family with no mercy. And in every happy moment the disease hovers, threatening to steal this one next.

She is tired of shouldering this load. She wants to shake it off, throw it aside and step back into her old life.

She misses the lightness of before. She knows that, for her, life will be heavy. It will be hard. She will break a glass that symbolizes her old life, and something in her will break, too. She will stand at the kitchen sink, cleaning plates while tears fall into the dishwater, and she will go upstairs to help a little girl wash her hair.

But on her way there, as the heaviness clamps down around her heart, she will lift her face to the evening sky just in time to see it set ablaze with the most beautiful sunset.

She will take a photo and send it to her husband. He will write back, “Wow. What a beautiful world,” and she will be amazed at him all over again.

She will tell herself that if he can still see the beauty in this world on a day when he couldn’t swallow his breakfast, when she watched his head drop into his hands under the sadness of all that he’s lost and is losing still, then she can see it, too.

She still feels the weight on her shoulders, but now she remembers the sunset. She remembers his words.

What a beautiful world.

She presses on.