“I’m Aspen,” she pipes in with a smile, holding her hand out to shake. It’s nice having her here. She does this sort of thing for a living.
“Nice to meet you. Rhett, are you comfortable with us discussing all of this in front of her?”
“Yeah, we’re actually having a baby and I think it would be good for her to learn all about it,” I pause, “just in case.”
The doctor gives a knowing nod. “That’s a great thought. I’m not sure what you know as far as gene passing goes, but BMD is linked to the X chromosome, meaning you can only pass it to a daughter, making her a carrier. Even then, it’s incredibly rare that she would manifest any symptoms. If you have a son, they will not have BMD because you would have given the Y chromosome. The only way this is passed is when a mother carrier passes the mutated X chromosome to a child. It’s a 50/50 shot.”
Aspen lets out a huge breath, as if a wave of tension has finally been cut loose. “I had read that, but it was a little confusing for me. So what does that mean for Rhett?”
“That means his mother is a carrier. Based on the paperwork you filled out, it looks like her dad had a positive diagnosis, yes?”
I nod, words not yet found.
“Do you by chance know how old he was when he started showing symptoms and when it progressed?”
I clear my throat, not wanting to deal with the embarrassment of a crack. “Yeah, he was about sixty when symptoms started showing; it progressed pretty rapidly. My mom became his caretaker a year later, and he was gone six months after that.”
The doctor nods, his face solemn. “I am really sorry your family had to go through that. It’s a brutal disease, and I wish there were better treatments available. But research is changing every day, so I want you to keep that hope.”
He goes on a long discussion about the disease and testing after asking questions about my day-to-day life. If I find myself having a hard time picking up my feet, if I can’t grip things the same. I’ve been so overly aware of my body since this happened with my grandpa. Every muscle cramp caused my brain to go into overdrive, thinking this was it. Symptoms can appear at any time and are different for everyone. If I woke up sore two days ina row, I was sure that was it. It never was. I’ve had no symptoms so far.
“So, we have a couple of options since you are asymptomatic we can do just the CK, which is short for creatine kinase, it’ll tell us if you’re showing any signs of muscle damage that might not be presenting themselves yet, or a DNA test, but since you’re not showing any symptoms, we can tack that on later if you test positive on your CK test.”
“I want to do both today, if possible.” The words fly out of my mouth the second he finishes his spiel.
“Are you sure? The DNA test is quite expensive and we can always do it after the CK results.”
“I need to know.” This constant flow of background thoughts keeps me occupied all day, keeps me from living, and I can’t do this anymore. I feel like I lose a piece of myself every day to the worry and I don’t want that for me.
“Okay, I understand.” He turns to his laptop, types for a few seconds, and then turns back to us. “The nurse will be back in to draw some labs. Before I go, do you two have any questions?”
“You actually answered all of mine, even the ones I was too afraid to google, so thank you.” Aspen smiles and sits a little straighter. Our baby will not have BMD. If it's a girl, she might be a carrier, but she will never have to watch herself slowly disintegrate, and that’s a relief Aspen and I both share.
“How long does it take for labs to be back?” I ask.
“CK should only be a day or two; if the receiving lab is backed up, maybe a week. The DNA test is about a month or so. It has to be sent to a specialty lab. I’ve seen them come in as short as two weeks and I've seen it take two months.” My stomach drops at that, and I feel my muscles tense up. “It’s really important that you know that just because it’s taking longer doesn’t mean you’re testing positive. It just means the lab is busy. I know thisis nerve-wracking. But we will be here to help every step of the way.” He holds out his hand for me to shake.
“How are you feeling?” Aspen asks as soon as the door closes behind the doctor.
“I feel okay. Our baby is safe, and that’s the biggest relief. I’m not sure if I could live with that,” I admit.
Her gaze softens, and damn it if it doesn’t make my heart swell. “It wouldn’t have been your fault either way, Rhett.”
I nod, because she’s wrong. It would still have been my fault for not being more responsible.
The nurse pops in a few minutes later and draws a few vials of blood.
We walk out of the hospital in silence, both lost in our own thoughts. Mine are mostly lost on the girl beside me and what our future is going to look like. The road I want and the road I dread are so close together that I can’t differentiate them anymore. I want to protect her, but this might be the one thing I can’t guard her from.
Chapter 18
Aspen
Ilay in bed staring at my ceiling. I’d rather be sleeping, but instead I can’t stop thinking about Rhett’s appointment. It’s criminal that it takes that damn long for results to come in. If I’m this freaked out about it, I can only imagine what he is going through. My heart breaks for him. We will be on the other side of this soon, though.
As awful as I feel admitting it, that isn’t the only thing keeping me awake. The hankering for ice cream, specifically ice cream with french fries, is flooding my brain, making my mouth water. I could absolutely devour a Wendy’s frosty but it’s 9:30 at night and the nearest one is a thirty-minute drive. I’d have to put clothes on. I could probably get away with skipping the bra, but I’m pretty sure I'd need to put on my pants. Although my sleep shirt hits mid-thigh, I don’t think it would fit the social convention of modesty.
“Ugh.” I aggressively flop to the other side of the bed. No one told me how annoying it would be not to be able to get comfortable with a bump constantly weighing you down. My nausea has gotten significantly better, which I guess is a positive.
