Paper Cranes (38 page)

5 Years Later

A
t precisely 5:05 a.m. on January 20
th
, exactly 3 years to the day since I was diagnosed with ALS, Melissa Jean came kicking and screaming into the world. Her pink toes wiggled wildly, while her big brown eyes were transfixed on her daddy. She was demanding, headstrong and daring, just like her father and little brother. Once we decided on a name, Jackson settled on Lissa as her personal nickname for our sweet miracle angel.

There was no question as to what the baby’s name would be if she were a girl. Melissa had unknowingly brought Lee and I together, plus she was Jackson’s mother. Regardless of how Lee and she had left one another, we grew to acknowledge and talk more about her, especially for Jackson’s sake. He deserved to know more about his mother, much more than just the stories from his Nana and Pop.

The more we talked about her, and with Jackson’s grandparents, the stronger the bond became between Lee and them. Lee couldn’t make up for his past behavior concerning their daughter, but he damn sure wasn’t going to let that deter him from being the best father he could be.

We had zero intentions of having a baby, but I suppose things just happen. I wasn’t worried once I saw the little pink positive, because I knew I had a man and adoptive son who loved me very much. When once I was terrified to bring a child into this world alone, I now had the best backup in the world. That couldn’t be denied.

Doctors cautioned me on the pregnancy saying, “You may never live long enough to have her,” but I proved them wrong. I was really good at that. If Lee taught me anything, it was to never give up and certainly never to give up hope. Even when things got bad, and they got bad, to always remove that dark, little ALS bubble from my happy place and press forward.

Lee clutched our little Lissa in one arm while holding Jackson’s now growing fingers. Clutched between Jack’s digits was a beautiful bouquet of calla lilies. Approaching the gravestone, Jackson bent down to wipe away the faded petals, replacing them with the new flowers.

“Do you want to talk to her,” Lee asked Jackson quietly.

“No, I just want to make a crane,” his tiny voice said.

Watching Jackson take a seat by the gravestone, he pulled out a sheet of paper from his backpack and began to create. Jackson poured his heart and soul into each crease and fold, meticulously sticking out his tongue, and squinting his eyes to get the perfect lines.

“That’s it buddy. Looking good,” Lee encouraged as he watched his son create the bird. Lee was amazed when Jackson had asked to learn how to make the cranes one day. He sat on the nursery floor, staring at the ceiling filled with cranes. The baby mobile was a compilation of the very best of moments between Lee and I.

As the days passed, which then turned into months and years, we never took a single day for granted. We lived everyday as if it were our last and had years of memories fulfilling our bucket list wishes, not to mention countless cranes.

Lee had always told me, “Happiness cures what medicine cannot.” He was right; happiness did fill the awful cracks and crevasse of this heinous disease. You didn’t need to have this disease to know this was how everyone should distinguish life. To want to make yourself and others the best versions of themselves. To love with your whole heart, no matter what.

Five years after I was diagnosed, it all came to an end. My heart was finally at peace.

“Do you think she would like my crane, Daddy?” Jackson’s sweet voice sang.

“I think she would be very proud of you buddy. I think Lissa would love for you to make her one too.”

Lissa’s tiny toddler fingers reached for the paper creation. Lee placed her on the damp grass, letting her play with the dried petals. She pulled handfuls of grass from the ground, clutching the green blades.

“You know, buddy. It’s okay to cry sometimes. She knows how much you miss her.”

“I know, Dad. I just…I just miss her, that’s all.”

“We all do, bud. We all do,” Lee said, wiping a tear from his eye.

Turns out Lee learned how to make cranes from Melissa herself. When her health began to fade, and her mobility deteriorated, Lee could not bear to see her struggle trying to make them. The cranes were his tipping point, but they also helped him heal. Once he realized the cranes symbolized strength and healing, he wanted to share them with the world, especially me.

“Where do you think she is right now?” Jackson asked as he continued to fold and press.

“Well, I suppose in heaven, bud. She’s probably watching us right now, listening to our every word.”

Screaming into the sky, “Can you not watch me when I pee? OH, and when I poop?”

Falling over into a fit of laughter, Lee and Jackson giggled at the absurdity of their jokes.

“Hey, what’s all that giggling for?”

“KAT!” Jackson wailed as he stood, racing into my arms.

“Hey, buddy. I missed you today,” I kneeled to scrunch his nose. Placing a tiny kiss on his muzzle, “I love your laugh, sunshine.”

“I love you…”

“It’s okay, bud. You wanna ask her?”

Walking hand and hand over to Lee, I gave him a deep kiss. I had never been so happy to see my husband and family. Lee picked up our sweet little Lissa, placing her on my hip as I got my arm situated. Her tiny brown curls brushed my flush lips, as Lee curled into my hip to assist me on holding our daughter.

“You can ask her, J. It’s okay, I’m here, sweetheart,” I encouraged the young boy.

With weary eyes, Jackson looked up at my supportive features.

“Mommy, it’s Jackson. Dad said you’re always around, so I’m sure you can hear me right now. I wanted to ask you a question, mom. I know you can’t answer, but I hope you’re okay with what I’m about to ask. So, I have a really great step mom. Her name is Kat, but I’m pretty sure you know that since Dad said you even know when I’m pooping,” he tried to discretely cover his mouth lowering his voice.

“…well, I really like her mommy. She’s really great and she really loves Dad and me a lot. She even lets me stay up past my bedtime when Dad is out of town, but don’t tell him that.”

Lee and I exchanged mock shock glances as we admired the little man before us.

“I guess what I’m trying to ask…” he started as he shuffled his feet, clearly nervous. “…I wanna know if I can call her mom. She’ll never be my first mommy, but I’d really like her to be my second mommy.”

Tears streamed down my face, even though I knew this was coming. Jackson had kicked around the term for a while before I sat him down one day.

“J, I’m not going to ask you call me mom. I will never do that to you. You can call me anything you want, bud. If you want to talk to your mom first, I’m okay with that.”

“Really? He looked at me puzzled.”

“Yeah. We can all go to her gravestone and you can ask permission if that would make you feel better. Until then, call me whatever you want.”

Jackson and I had the conversation right after Lissa was born. We never spoke of it until just recently.

“I’m ready to go talk to mom,” he said out of the blue nearly two years later.

I gave my boys the morning to visit while I finished up my three-month check-up. I’m sure you’re wondering how or why I’m here right now. Well, that’s the funny thing about anomalies; they’re everywhere, but never when and where you need them. Almost.

Two years after being diagnosed, Dr. Atlee, pulled Lee and I into his office. I was terrified he had seen something in my charts to cause concern.

“Kat, Lee, so good to see you both,” he stated cheerfully.

Why the hell was he so cheerful?

“I brought you both here for a reason today. Have either of you ever heard of Monomelic Amyotrophy?”

“Yeah Doc, cause that’s a term that’s always thrown around,” I giggled nervously.

“I’m being serious, Kat,” he scolded.

“Sorry, I get really nervous in these situations. The last time someone asked me if I knew what yadda-yadda-yadda meant, I was diagnosed with ALS.”

“Understandable,” he stated as Lee clutched my hand.

“So what does this mono-whatever mean?”

“Monomelic Amyotrophy is an extremely rare case of ALS. So rare, that it usually only affects males, 15-25 years-old, who live in India and Japan.”

“Hate to break it to you Doc, but I don’t fall into any of those categories,” I chuckled.

“Correct, however I didn’t want to mention this until now, but I’ve been considering this as a possible scenario ever since you reached your one-year mark. Nothing had either moved or progressed to any other limbs which got me to thinking – what if?”

“You said it’s a rare case of ALS, so how is this any different,” Lee coaxed.

“Monomelic Amyotrophy or MMA is more or less muscular atrophy unlike motor neuron disease which is neurological. Since there are no definitive tests to prove anyone has ALS, it’s extremely hard to diagnose.”

“What are you saying, Doc?” I suddenly felt my heart burst out of my chest at each word and phrase coming from his mouth.

“I’m not one hundred percent positive, and we’ll have to keep monitoring this, but it’s a good chance you have MMA.”

“What does that mean?” Lee pleaded with tears in his eyes.

“MMA only affects one limb, and never spreads. It stabilizes at a plateau after two or even five years. At that point, it neither improves nor worsens.”

“What about life expectancy?” I barely coughed out.

“This will not affect life expectancy at all. You would grow old, just like anyone else.”

Clutching my chest, I felt like I was having an anxiety attack, “I never thought I would love to hear that phrase so much in my life.”

I wanted to grow old. I wanted to have kids. I wanted to get married. I wanted Lee and Jackson in my life until Jackson had kids, and his kids have kids and so on.

“And you’re pretty sure she has this?” Lee begged.

“I’m fairly positive, but we will have to monitor it closely. Just in case, I want to keep you on the riluzole and want to see you back in three months.”

Standing from my chair, I gave Dr. Atlee the biggest hug and kiss on the cheek. I squeezed so hard I thought I might crack his back.

“Dr. Atlee, can you give us a minute?” Lee requested.

As soon as his shadow faded, I ran and jumped into Lee’s arms. The tears fell freely, as the emotions poured from my soul. I was going to live. I was going to LIVE!

Pulling away slightly, Lee and I stared at each other’s tear stained faces. Gasping for air, we cried and laughed until we were exhausted.

“Dove, words can’t describe what I’m feeling right now. In all the research I did, this never once came up on my radar. It’s a sign. A fucking sign we were made for one another.”

“I feel so bad,” I smiled as I continued to cry.

“Oh, cher, why?” he wiped my tears, holding my face between his palms.

“Shit, now I have to go apologize to that stupid fortune teller,” we laughed and cried together.

“Kathryn Eileen Dove, I’m officially inviting you to grow old with me. Will you accept my proposal?” Lee asked as he concocted a makeshift ring out of a paper clip from my file.”And just remember, the last time I asked, you promised to say yes!”

“I would love nothing more than to grow old with you,” I kissed him mercilessly.

It’s been five years since this whole story started, and being diagnosis with amyotrophic lateral sclerosis. My disease has officially been downgraded to a new form of ALS: Monomelic Amyotrophy.

Even though I finally see hope at the end of the tunnel, I also see a future with the people I love the most in my life. That’s not to say I don’t still have daily struggles, but the struggles are so minor in comparison to what could have been.

Handing over our daughter to Lee, I rubbed my swollen belly, glowing at how far we had come in five years. Jackson was now ten, Lissa was a terrible two and I was five months along. Even though my arm was virtually useless now, I couldn’t help but count my blessings.

Taking Jackson’s hand, we walked side by side to the car. Lee glanced over at me, placing an arm around my waist. As we approached our car, Lee pulled me in for the perfect kiss. People always ask us why we look like honeymooners all the time, but the answer always rendered me speechless. Why shouldn’t we always act like honeymooners?

We had built our relationship on a foundation of friendship, love and sacrifice. He never once left my side, even when I begged him. Over time, that friendship turned into admiration which then turned into love. We had a love so powerful that it could withstand any obstacle or challenge. That is something to strive for. Something to look forward to, and something to wake up every morning for. There was no way I was leaving them now. Not now, not ever.

“What should we name the baby,” I asked Jackson.

Placing his tiny hand on my belly, “I think Jackson is a great name.”

“We can’t name him Jackson, silly,” I chuckled.