3. Mason
Mason
Age-Thirteen
Two years ago, Saturday mornings were filled with Cartoon Network, the smell of breakfast cooking, and my mom’s terrible singing in the kitchen. Now all I hear when I wake up are machines and silence throughout the house.
At least when I hear the machines, I know she’s still alive. She’s here for another day. As unfair as that may actually be to her.
I’m selfish in wanting her here, even when she’s suffering through each day now.
I’ve learned how to do a lot for her, though. I can do almost everything she needs. The new nurses who come around are always impressed with me.
I know how to give her the medication she needs, I know how to keep her comfortable, and I know how to feed her so that her hands and arms don’t cramp up from the effort.
I know I’m only thirteen, but I feel a lot older with a checklist of responsibilities I have every day.
Dad always hounds me about still putting school and sports first, but how can I when my life is getting closer and closer to changing for the worse?
He might not care, but I’ll never stop putting her first. She’s always taken care of me. The only one who has. So I can do the same for her now. It might sound lame, but I don’t care. My mom is my best friend. Always has been. Why wouldn’t I want to take care of her?
I walk over to the doorway of her bedroom—the one my dad doesn’t even sleep in—and just look at her. It feels like she gets smaller every single day, like this stupid disease is sucking the life out of her right in front of me.
You’ve taken enough, ALS. Leave her alone now. Let her have some peace at the end.
When I walk inside the room, she smiles at me. It’s barely a smile; her muscles are too weak, but I see it. Her eyes still smile for her; they always do when she sees me.
“Hey…baby,” she whispers. It’s as loud as she can be anymore.
“Hey,” I tell her, pulling a chair closer to her bed. “Do you want me to open the windows up?”
She nods weakly.
I stand up and slowly pull the curtains back so they don’t blind her with the brightness, then unlock the windows and lift them to let the warm Florida morning air in.
It can get stagnant in this room pretty quickly, so I always try to let in fresh air when the weather is nice and keep her plants watered in the room in case it could help her somehow.
The last nurse who came in hasn’t left in two days, and my dad is home early from his trip. That’s how I know it’s getting bad.
He walks into the room right as the nurse steps out to make a call. It’s just the three of us now, and I don’t like the way it feels. It feels like the end of a day, even though the day has just started.
Mom’s breath hitches, and I can hear how hard it is for her to get air in on her own.
I scoot my chair closer and grab her hand.
It’s cooler than normal and really light.
My dad moves closer, and for a second, I think he might touch her, but he doesn’t.
His eyes are shiny, though, and he blinks it back quickly.
“Mase,” she struggles to get out.
I bite the inside of my lip, trying not to cry. “It’s okay, Mom. You don’t have to talk, just…rest, okay?”
She lightly squeezes my hand and tries to smile.
I hate this. I hate what this disease has swept in and taken from her, from us. I barely recognize her anymore. She’s a completely different person than she was two years ago.
They told us that after ALS is diagnosed, patients usually have two to five years left. Why couldn’t she get five? Why couldn’t she get four? Dammit…why couldn’t she just have gotten more?
I know this is it. We all know this is it. It won’t be long. Everything inside her is shutting down. If it’s not today, then it will be in the next couple of days.
I can’t do this. I can’t stand watching it happen. I can’t wrap my head around any of it.
Why my mom?
I still haven’t accepted it. Even after all this time, after years of watching her get worse.
The worst part is knowing she understands it all. She’s fully in there. Her brain works perfectly. It’s her body that’s failing her.
I know she knows how much this is affecting me. I can see it in her eyes. It’s like she’s pleading with me to be okay, even when that’s impossible. Because she’s not okay. So how can I be?
She raises a shaky hand to my face, and I take it, holding it there so she doesn’t have to use any more strength.
“I…love you.”
“Shhh, Mom. This isn’t goodbye yet.”
I know it’s selfish, but I just need a little more time. Then maybe I can accept all of this.
I don’t think I’m going to get that, though. Not with how weak she’s getting. Not with how fast the end is coming.
We stay in the room all day with her, and eventually, I get up on the bed and wrap myself around her, needing to be closer to her. I don’t even move when the nurse comes in for vitals and meds, or when my dad tells me to get up and stop acting like this.
“You can’t hold her here.”
But I can try. I can try, can’t I?
The sun is going down, and I’ve barely eaten today.
I can’t pull myself away from this room.
I’ve found every reason to stay near her.
I’ve been cleaning, feeding her, making her comfortable, trying to make her smile, reading her favorite book to her, anything to keep her here for a little while longer.
Something in me knows this is the end, even if I won’t let myself think about it for too long or say it out loud.
I kneel down beside the bed and point out of the window at the sunset. It’s beautiful, probably the most beautiful sunset I’ve ever seen come through these windows. The whole sky is pink, glowing brighter than normal, turning everything into a glow of soft pink and orange shades.
She turns her head slowly and smiles. I see a tear slip from her eye, and I quickly wipe it. Her breathing is so slow, even with the oxygen up as high as it can go.
“It looks like you out there,” I tell her.
My dad is behind us, pacing the room. His normal, annoyed expression is a little softened today.
She taps my hand lightly, and I look down at her as she mouths I love you to me.
I shake my head. “I love you too, Mom…but it’s not time yet. Just a little longer, okay?”
“That’s not how this works, son,” Dad says, stopping at the end of the bed.
I feel my face getting tight, but I don’t look up at him.
I hate that he can’t just let me feel things.
He wants to box everything up, like that makes you more of a man or something.
I think it makes him pathetic. And I don’t want to be pathetic like him, never showing people that I care or have feelings.
“Proud…of you,” she breathes out.
The sound of her struggling breaks my heart. It feels like she’s using her last breaths on me, and I hate that thought, hate that she knows, hate that I can’t do anything to stop it.
What am I supposed to do without my mom? Without the one person in the world who truly sees me. Who never told me to change. Who always made me feel like I was enough…just as I was.
I can’t stop the tears anymore, and I don’t care if my dad tells me to stop or ‘suck it up.’ I just want to cry right now.
I see a tear hit my mom’s arm, and I wipe it off her.
She squeezes my hand, and I squeeze back a little harder.
I look back over my shoulder and see my dad facing away from the bed with his arms crossed.
I can’t see his face, so I don’t know if he’s hiding his emotions or if he just doesn’t have any.
Why couldn’t it have been him?
You might think that’s wrong to think…but I don’t. He’s always been heartless to me, and now I’m going to be stuck with him instead of her.
I can’t hold it in anymore as I start begging. “Please don’t go.”
Her eyes find mine—they’re heavy, like her holding on is exhausting. Her hand trembles in mine, and I put both of my hands on top to steady hers, trying to give her any comfort I can.
What if she’s scared and she just can’t say it? I don’t want her to be scared.
Her eyes flutter, and I know she’s fighting to stay here…for me.
The nurse said the end will happen pretty fast. Her body just…won’t be able to keep going anymore.
I wish she didn’t have to know this was it. I wish she could go more peacefully. I don’t want to think about whether it hurts for her or not.
I smooth the blanket on top of her and start talking about things at school, trying to do anything to hopefully keep her calm. I know she can still hear me, so I want to try.
I hear the floor squeak and turn to see my dad moving closer.
“We should give her some space,” he tells me.
“She’s fine,” I snap.
“She’s not fine, Mason.”
I hear the words crack, and it’s the most emotion I’ve ever heard from him.
I don’t care what he does. I’m not leaving her. I’m not letting her die without knowing I was right here with her.
The sky outside turns an even brighter shade of pink, like God is rolling out the carpet for her, and I just stare at it.
The nurse starts checking her vitals and monitors, giving my dad a small nod. I feel it in my stomach—like that falling feeling. It’s awful and makes me feel sick, not ready for what’s about to happen.
I quickly climb back into bed with her, careful not to mess with any of the tubes or wires. I tuck myself into her like I’m still a little kid, and I couldn’t care less about being embarrassed or anything my dad might say. I need her.
She looks at me slightly, and there’s this shine in her eyes before it fades, and her eyes start to slowly close.
For a second, I think she’s still breathing, so I count—one, two, three…but her chest doesn’t move again.
My voice cracks. “Mom?” I move her a little, and her body just gives. “Mom, please…”
My dad steps closer, but he doesn’t say anything. His hand hovers over her foot before dropping back to his side. He clenches his jaw, and then he just turns away.
I bury my head into her chest and let the tears run down my cheeks onto her. I want her to take me with her wherever she’s going.
It all hits me at once that it’s over. She’s gone, actually gone. It hurts so badly that I can’t breathe, I can’t move, I can’t think outside of this moment. I don’t want to live in a world where I don’t have my mom.
My whole body physically hurts, and I want to scream.
I think up until this very moment, a part of me still hoped for a miracle. If anyone deserved one, it was her. But that didn’t happen. I just watched the only person who truly ever loved me take her last breath.
Nothing feels right in this moment, and I don’t think it ever will again.
The nurse places a hand on my shoulder, and I just shake my head.
I’m not leaving her.
I stay lying on her until I feel her skin go cold against mine.
I look up as the last of the sun is going down outside.
The room faces the backyard, where several big bushes sit right under the window.
I see something fluttering on top of one, and then it lands right onto the window screen—a beautiful reddish colored butterfly.
It just rests there, wings slowly opening and closing.
The tears don’t stop. They pour as I try to steady my breath.
“Goodbye, Mom…” I whisper, wiping at my face. “I love you.”