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I stand and stretch my arms over my head. It’s pitch black in the room. I tap the screen on my phone until it illuminates. It’s just after midnight. It’s too early to be awake for the day. I need to go find my comfort blanket and bring her back to bed so maybe we can get a nap before we have to be up again.
I open the door quietly and pad toward the faint light I see coming from the kitchen. That’s where I find her, huddled with a cup of what I hope is tea and not vodka, and her laptop. Hell, I wouldn’t blame her if it were the latter. Maybe she’d be willing to share. I try not to drink alcohol during the season, but the thought is starting to sound more and more tempting.
She doesn’t move as I approach, even though I know she hears me coming. “Can’t sleep, Click?” I ask.
I walk up behind her until her back is flush against my chest. I kiss her neck softly before leaning down and placing my chin on her shoulder so that I can see what she’s looking at on the illuminated screen in front of her. It’s not like I don’t already know. She’s not working at this time of night. She’s researching.
“No, you?” She sighs, leaning into me.
“Thought I might grab a turkey sandwich.” I turn my head and brush my lips against her cheek. I feel her jaw lift into a knowing smile. I’m teasing her. I love that we have a language that only belongs to us.
I love that no matter how hard life gets, we have each other. It feels good to be able to lighten the air around us with a few simple words. It’s all felt so heavy lately. It’s hard to breathe.
“Turkey sandwich my ass.” She lifts her shoulder, but my chin follows. I don’t let her shake me off just yet.
I snake my arms around her waist and pull her into me. “My exact thoughts. You’re so good with the meat.”
She gives up with the laptop, and drops her arms to her side, tossing her head back and falling completely into my embrace. She stares up at the ceiling, and I follow her eyes. “God, I still can’t believe I said that. Nor can I believe you’re still bringing it up all these years later.”
“God doesn’t care about your penchant for quality meat, babe, but I do.” I pinch her hip before continuing. “Some things are just too good to let die.”
The air stills between us as the final word rolls off of my tongue. Neither one of us want to say it, but we’re both thinking the same thing. Death. It’s a word that’s haunted us for years.
Astria isn’t facing death. But her life as she knows it is hanging in the balance of one of the most important decisions we’ve ever had to make. It doesn’t feel like there’s a right answer. Just a different set of consequences for whichever route we decide to take.
“What are we going to do, Damien? Do we let her participate in the trial? It seems risky.” She turns to me, looking for answers that I don’t have.
The specialist that Astria’s pediatrician referred us to is heading up a clinical trial that could change the treatment of specific autoimmune diseases forever. The list was a mile long. Most of the words I’d never seen before. It was like trying to read a foreign language. The trial is still in its early stages. It’s not yet been approved. We don’t know the potential side effects, only a list of risks that are fucking scary.
There are very few patients that fit the criteria for the trial; Astria is one of them.
In short, she’ll need a bone marrow transplant to replace the bone marrow currently attacking her body. It’s a serious procedure. One that all three of us need to agree on before proceeding.
If it works, it’s possible that with medication, Astria will live out her life normally. If she doesn’t do it, the aches and pains she’s currently experiencing will likely worsen. She’ll be faced with debilitating migraines for the rest of her life, and who knows what else. Her symptoms are ever-changing, and we’re just beginning to see the results of what this terrible disease is capable of doing to her body. It’s a silent disease, one that doesn’t present physically, and that makes living with it that much harder. It’s hard to struggle with something day in and day out and yet by all outward appearances seem completely normal.
I don’t want that for her. I don’t want my little girl to suffer in silence.
“Did you talk to her about it, yet?” I ask.
Astria was already in bed when I made it in from practice. I was late getting home because I got a late start. Her appointment was early, and I didn’t want to miss it. I try not to make getting home late a habit when I’m not on the road, and I have a gym here, but I needed the solitude tonight to think and I was already behind when we started.
“Yeah. She’s doing her own research. Says she wants to make an informed decision. She’s even drafting a list of questions to volley back to the specialist.” She chuckles lightly to herself.
“Really? She’s eight.” I ask, a little surprised and a hell of a lot proud of our girl for taking the initiative to research and advocate for her own health at such a young age. Most kids her age wouldn’t even know where to begin.
“Eight and three-quarters.” Gia reminds me, imitating our daughter, and sounding so much like her it hurts. “I hate to admit it, but she kind of reminds me of T when she does that. The planning, and the lists. He always needed to be in charge of his own destiny, you know? Well, his and everyone around him.”
I know it took a lot for her to admit those words, but she’s not wrong. Tyler always needed a plan for everything. It was one of his ways of coping.
“The man with the plan,” I say, and think about the plans he made for us, and how none of those worked out the way he was certain that they would. I’m glad they didn’t.
“That he was. And we broke the rules.” She sighs into me.
My lips lift into a knowing grin, “We did.”
“You ever wonder what would have happened if you hadn’t come to that party that night? If you would have never gotten that text?”
“No. Never.” I say with certainty. I never looked back. Sure, I struggled with understanding my feelings, but my heart always knew. We can’t change the past. We can only learn from it and adapt moving forward. Or, in our case, fall in love.
