“Well,” he whispered.
I shook my head violently. “No. No. No. Please don’t tell me that’s what you have.” I knew a little bit about the disease, mainly from watching The Big Bang Theory. Sheldon was a gigantic fan of Stephen Hawking, who’d lived with ALS for many years, which was very rare. Lou Gehrig had died within two years of diagnosis.
Dad shuddered. “Skye, I’m so sorry. I don’t want to believe it myself.” Tears streamed down his unshaven face.
“Did a doctor diagnose you already?” I knew he’d had his yearly physical last week.
He cried. “I have some very revealing symptoms. Remember a few weeks ago when you asked if I’d been drinking because I was slurring my speech? Well, I’m finding it’s hard to say certain words. And one of the guys asked me the other day if I was drunk when we walked off the golf course.”
In my head, I replayed what he’d just said, trying to detect any sort of stumbling in his speech. “But you’re not slurring now.”
“True, but it comes and goes.”
“Maybe it’s just stress.” He’d been under a ton with his job at the local chemical plant, and Mom’s death hadn’t helped.
He dragged his fingers through his thinning blond hair. “I wish it were.”
“So the doctor knows this for sure?” I refused to believe it.
He wrapped me in his arms. “I want you to know I’m going to do everything I can to make sure you’re taken care of.”
My tear ducts burst open, and I sobbed. “I can’t lose you, Daddy. I can’t.” My stomach hurt. My heart splintered and my world went black.
1 One Year Later
“Dad,” I called as I wound my way into the family room from the kitchen. In the year since finding out he had ALS, or Lou Gehrig’s disease, he had severely declined.
I was blown away by how quickly the disease had taken hold of him. I was blown away by how our life had changed in a blink of an eye. I was blown away by how Dad was on the fast track to another life. And as crazy as it might sound, I often wondered if Mom wanted him to join her in heaven.
I squeezed my eyes shut as I shook off the thoughts of death, of losing another parent, of being alone. I couldn’t sleep at night, I could hardly eat, and if I sat and stared at Dad, I ended up crying like a newborn.
I was only seventeen, and if he died before I became an adult, I would end up with his sister. I’d only met her maybe three times when she visited for a holiday here and there. She and Dad had a strained relationship, a falling out when she was in college over some dude Dad didn’t like. He hadn’t shared the whole story. Over the years, they’d reconciled, but they still didn’t keep in touch on a regular basis.
Despite that, I didn’t want to move to California, and I sure as hell didn’t want to live with my aunt. The last time she’d visited, a year before Mom passed, Aunt Clara was snooty to me. Maybe she’d changed. Maybe she was a nice lady. I’d gotten the feeling she didn’t like kids, and to my knowledge, she didn’t have any.
My mom had been an only child, and her parents had died years before, so that was out.
Even if Dad passed after my eighteenth birthday, I had no idea how I would survive. He’d tried to talk to me about what was to come, but I always ran out of the room in tears. I just couldn’t bring myself to even think about the future without him.
Regardless, watching him decline tore my heart right out of my chest. He’d gone from walking one day to a wheelchair the next and from speaking one day to having no voice the next.
I wished upon a star that I could hear his voice, his laugh, or even a reprimand if the need arose. I missed him calling me “sweet pea” or “sweetheart.” I missed carrying on a conversation with him about anything and everything. He had a computer to relay his thoughts for him, but its robotic voice wasn’t the same.
Dad sat in his wheelchair in front of the TV, wearing a large blue bib over a hospital gown, while Nan, his caregiver of six months, fed him breakfast. Dad had been through three caregivers before finding Nan. I was praying she would work out and stay for the long haul.
She had a great personality, soft and patient. She had a big heart and a caring soul. She reminded me of Mom in some ways.
She and Dad had hit it off from the moment she’d walked through our front door with her easy smile and gentle touch. In a different time, I was certain they could’ve been more than friends. They weren’t that far apart in age. Dad was approaching fifty, and Nan was in her mid-forties.
Above all else, she never complained when Dad was moody or burst into tears, and with ALS, instant emotional changes were the norm, particularly for Bulbar ALS, the rare form that started at the neck and took his voice first.
Tears threatened as I settled behind the leather couch that faced the fireplace, holding in the mountain of emotion that was ready to explode.
Nan pushed her gold-rimmed glasses up on her nose. “Good morning, Skye. Are you ready for your first day of senior year?”
I put on the most genuine smile I could. I didn’t want to show Dad I was unhappy about leaving him all day or how much I hated school in general. High school was a petri dish of drama. The only saving grace for me was hanging with my BFF, Georgia, and our new friend Mia, who’d moved into our sleepy, North Carolina beach town last year.
A laugh broke out in my head. I had to
