“I would like that,” Mia says softly.
Chapter 5
Mia
Liam hands me a glass of wine as we make our way to the back porch. I am in absolute awe of this place. It’s so peaceful, quiet, and serene. I could easily see this becoming a happy place. We go over to the porch swing and sit down.
“Tell me about your kids, Garrett and Arianna,” Liam says and he looks interested.
How do I tell this smoking hot guy about my two kids? If I tell him, he’s most likely going to go running for the hills. On the other hand, it would probably be better to just let him run now before either one of us gets attached. I take a long pull of my wine.
“Are you okay?” Liam asks, his eyes full of concern.
“Yeah, I was just thinking about your statement of getting the kids together.”
“I didn’t mean to be so forward earlier. I apologize if it came across like that.”
“No, it isn’t that. My kids can be a handful,” I try to explain.
Liam laughs. “I have twin boys. Trust me. I know how kids can be a handful.”
“My son has oppositional defiant disorder, and my daughter has a rare genetic disease called globoid cell leukodystrophy along with complications from a stem cell transplant and epilepsy. There are a lot of medical issues I deal with, so we tend to stay to ourselves.”
“I have heard of epilepsy and I have heard of stem cell transplants, although I must admit I have never met anyone who has experienced it personally. I have never heard of globoid cell leukodystrophy. What exactly is that?”
“I’m impressed you pronounced it correctly right off the bat, not too many people can. Basically, it boils down to your body not producing a certain enzyme to fight off toxins that damages the myelin, which is the protective covering over your nerves leaving the nerves exposed and they can’t communicate accurately from the brain to the rest of the body. The signals get lost and basically means their trapped inside their own bodies unable to move.”
“Obviously, you can live with it right?”
“For a little while.”
“What do you mean? She had a transplant, so she’s perfectly fine right?”
I let out a small laugh. “Perfectly fine? Unless it’s caught through newborn screening, which there are not enough states that test for it yet, the damage has already started. In most cases, by the time the doctors think to check for leukodystrophies, it’s too late for treatment. We were fortunate to catch Arianna’s when we did. The fact that it was a later onset made her eligible for a stem cell transplant.”
“How does the transplant affect the disease?” Liam asks.
“The transplant can slow down or stop the progression of the disease and they can regain abilities with extensive therapy. More often than not, the stem cell transplant just gives the warrior a better quality of life, not a longer one.” Looking at Liam, I can tell he wants to ask the question, everybody does when I tell them this. “You can ask, but I don’t have the answer.”
“What do you think I’m going to ask?”
“You want to ask her prognosis. Which category does she fall into?”
“That thought has definitely crossed my mind.”
“In truth, we don’t know. If I’m being honest, I don’t want to know,” I tell him, feeling my eyes well up with tears. This conversation always hurts the most. Thinking about the what-ifs, the what could be, the what next. The thought of losing one of my children scares me to death.
“Without this treatment, you’re saying that Arianna would be gone?”
“Most don’t live to see their second birthday, although there are a few who do.”
“Wow, Mia. I have no words. As a parent, I can’t imagine being told that your child might die.”
I let out a forced chuckle. “The first doctor we had did tell me to take her home, keep her comfortable, and watch her rapidly deteriorate until she passed.”
“Are you serious? I would have told them to go fuck themselves.” The shock is noticeable on his face.
“That’s what I said. I told Dr. Quack to go fuck herself.”
“You obviously got a second opinion.”
“We did. Krabbe Disease is really scary without hope.”
“Krabbe Disease?”
“It’s another name for it. Personally, I think that all leukodystrophies should be dubbed satanic diseases.”
“You found hope?” Liam questions.
“Yes, we found hope, hours away from home, but we found it. She went through chemo to suppress the immune system so her body wouldn’t reject the stem cells. She’s been one hundred percent donor cells since day one of engraftment. We were told that she could regain most of the abilities back that she’s lost.”
“You don’t sound too sure of yourself that’s what happened though.”
“Old videos and photos don’t lie, I guess,” I say somberly.
“What do you mean?”
“I still keep old photos and videos. The before Krabbe, if you will. It hurts to look at the photos, thinking about all the plans, dreams, and goals I had for her.” I find my eyes welling up, feeling the need to suppress my feelings.
Liam takes my hands and says, “It’s okay, Mia.” The way he says this makes me feel so safe and able to let go. I don’t normally talk about any of this. It hurts.
“I’m sorry. It just hurts.”
“I think as parents we all have dreams, goals, and plans for our kids. As they get older and develop personalities of their own, we have to let them dream their own dreams.”
“True, I will never be able to watch her run a track meet, play basketball, or volleyball.”
“Why not? They have rolling leagues,” Liam tells me with a smile.
“She’ll never be able to have kids of her own.”
“I bet she’d be the coolest aunt on the planet though,” Liam offers.
I look at him and he looks like he wants to say something else but wants to tread lightly. Or maybe he isn’t sure how to say it. “Just say it, Liam. At this point, nothing that you can say about this is anything I haven't already heard before.”
“Instead of looking at all the things she can’t do, why not look at all the stuff she can do?”
“Most of the time, I do. Believe me when I say it’s what gets me through some days. Sometimes you can’t help it, you know? I stand in my kitchen at the sink looking out the window while I’m washing dishes and I see the neighbor kids that are all around Arianna’s age. They’re outside running around in fairy costumes with wings, ‘flying’ in their front yard. I have seen them in their dance costumes practicing a dance routine or doing cartwheels. There are days that it pisses me off to no end that my little girl isn’t able to do those things. She gets excluded because she’s different and she’s not like other little girls. I know that I am blessed, and I know that what makes Ari different also makes her beautiful and unique. I am very well aware that this whole thing could have turned out so much differently and that she’s one of a kind. There’s not a single day that goes by that I’m not extremely proud of her and thankful that she is the happy-go-lucky little girl that she is. I am human though and it hurts.” I feel tears falling down my cheeks. Liam’s thumb brushes them away. Our eyes meet. “I’m so sorry, I just laid that all out there like that.”