My Perfect Imperfections (22 page)

After Layna turns eighteen, she announces that she’d like to get the genetic testing to see if she has that same mutated gene for ALS that runs in the family. Chance is horrified, thinking it’ll change the way she lives. Layna is stubborn, though, and insists that whether he agrees or not, she’ll be going through with it. She’s kind of like me that way. She’d rather live with the knowledge than live in ignorance.

Nothing can describe the feeling when the results come back negative.

Layna does not have that dreaded mutated gene that runs in Chance’s family. I want to scream with joy at the top of my lungs. My baby doesn’t have that gene that has haunted us all these years!

It feels like the heavy burden that we’ve been carrying all this time has suddenly been lifted. Chance literally grabs his daughter into his embrace and starts crying. Layna has never witnessed her father sobbing like this, but as she hugs him back, she cries with him. I now see the turmoil he’s been going through all these years.

Besides my mom weeping, even my father is softly crying to himself in the corner.

After this news, Chance becomes a new person. Suddenly, his optimism returns. His belief in hope and faith rejuvenates. He tells me, “Lily, I’m in a real good place. All I ever wanted was for Layna to not have that terrible gene. Don’t you see? Nothing matters but the fact that Layna will be fine. My prayers have been answered.”

Although Chance learns to make the most out of his situation—even when he becomes mostly dependent on his wheelchair—his wish of not suffering at the end nor having his family suffer while taking care of him comes true.

Chance Brendan Ryker dies of an aneurysm at the age of fifty-seven, a year after we find out that Layna does not have the mutated gene causing ALS. One morning, he simply doesn’t open his eyes. I turn toward him in bed to wake him up for work. To my horror, even as I shake him, he doesn’t budge.

When my parents hear my agonizing screams, they sprint up to our room to investigate.

According to the autopsy, a ruptured aneurysm in his brain killed him. To my relief, the doctors assure me that he didn’t suffer. It all happened while he was sleeping peacefully.

A part of me is grateful that God has granted him this final wish, but the other part of me dies with him. My Chance is gone. How can I possibly exist without him?

It takes all of my strength and willpower not to completely fall apart in front of Layna when she rushes home from college. She needs to draw strength from me. Her dad has been everything to her and daddy’s little girl is devastated.

While we’re preparing for the services, my dad hands us two envelopes. “Chance gave me these sealed envelopes about three years ago. He said to give them to you if anything should happen to him. One is for you, Lily, and the other is for Layna.”

Layna snatches the envelope with her name from her grandpa and runs upstairs to the privacy of her own room. I, on the other hand, stare at my envelope. Not wanting to open it until I’m ready, I take it to my room and place it on my table. I haven’t even accepted that Chance is gone, let alone read his message to me.

I contemplate going to Layna’s room to check on her, but I know she needs to be alone. She needs to go through all of the emotions to heal from this tragic loss. I just have to be there for her.

Chance is buried near my sister, Layna. He has always indicated that his place is with my family. He used to joke, “Besides, I know you’d never leave your sister. You’d want to be right next to her. And, why would I want to be anywhere else but next to you?”

I feel numb during the funeral and the memorial service. People hug us and pay their respects. Many are there from his work, but I’m on autopilot and simply go through the motions. I don’t even register who comes and goes or who says what. I just need all this over so I can grieve losing the love of my life on my own.

At the memorial, I don’t dare say anything. It takes all the strength I possess to keep my head upright and sit tall in my wheelchair. My father and mother both give speeches about Chance. My dad says he was the son he never had. I purposefully try not to listen too closely for fear that I’ll completely fall apart. Even people from his profession and some colleagues from his medical school say kind words about Chance. When I think it’s all over, suddenly, Layna stands up and walks to the podium.

“Thank you all for coming. I see how loved and respected my father truly was. Even people who haven’t seen him in years are here, which truly means a lot. All of you may know that my dad was a brilliant man. I mean, he had a crazy amount of knowledge in that brain of his.” There are a few chuckles. “But did you know that he was one of the kindest men I’ve ever known? He was my hero. Not only because of his brilliance, but because he would give his last shirt to anybody who needed it. From a very young age, my dad took care of his father. He became one of his primary caretakers while he attended school. When my grandfather lost his battle against ALS, my grandmother soon died a year later, leaving my father all alone in this world.”

Layna stops, trying to compose herself. “When he left, he came to Michigan, where he met my mother. And, it was love at first sight. No matter how much my mom resisted or tried to push him away, he persisted. He never gave up on them and eventually convinced her to marry him.” Layna turns to look at me. By now, my tears are rolling down my face, remembering when we first met and how he kept showing up everywhere, no matter how rude I was to him.

“He loved you so much, Mom.” Layna’s voice cracks. “He told me. He said he hoped that one day I find somebody to love like he loved you. He said that kind of love is once in a lifetime and many never find it. And, he’s so lucky that he found you.” Layna quickly wipes the tears away from her face. “I’d like to read the letter he left me. This is how amazing my father was. I, for one, am very lucky that this hero has been in my life.” Layna unfolds a piece of paper. Clearing her throat, she continues.

Dear Layna,

I am so sorry that I have to leave you so soon. But, I guess it’s time for me to go. Don’t you worry, my precious daughter. I will be standing by your side every step of the way, through all of the ups and downs, through the happy and sad times. When you have obstacles in your path, just think of your strong daddy, and I’ll be by your side to help you get around them or clear them out of the way.

Layna, thank you for being in my life. I can’t begin to tell you how much you mean to me. I cherish every memory we’ve shared together.

Now that I’m gone, it’s more important than ever that you and your mom look out for each other. Your mom acts very strong in front of others. But, I know her. She’ll lock herself in her room and fall apart alone. You have each other now, and you have to lean on one another. I want my two favorite girls to be happy and have a wonderful life. I’ve been lucky because I’ve had the best life I can ever hope for.

I’ve said this a million times, and I’ll say it again. I’m so proud of you. I can’t believe all that you’ve accomplished. Remember to follow all your dreams. Life is too short, baby. I want you to do all that your heart desires. My wish for you is that you find eternal happiness like I found in your mom.

Remember, if you ever need me, all you have to do is think of me. Even if you can’t see me, trust that I’m there, guiding you and lighting the way.

Be happy, my sweet baby girl.

Love you more than life itself,

Your daddy

Layna is crying so hard by now that I don’t know if the sound of the sobbing is from me or from her. I can barely catch my breath as I fall apart in front of everyone, even though I had promised that I wouldn’t. My dad walks up to Layna and brings her down. She drops to her knees in front of me and while we hold each other, we share the pain of losing the one man who has meant the world to us. With our bodies shaking from the sobs, we hold one another tightly, knowing that Chance would want us to pick up the pieces and move forward.

And although losing him is killing us right now, we know that we will eventually heal. We’ll heal together, with Chance guiding us each step of the way.

A full week later, I’m brave enough to read my own letter from Chance.

Hey you,

If you’re reading this, then let me start by saying I’m sorry. I don’t want to leave you, but I guess somebody with higher powers is saying, “Too bad.” I’m going to miss you so much. You’re my soul mate, Lily, and I will find you. One day, I’ll find you again.

Lily, you have completed me. Completed my life. I’ve thanked God every day for leading me to you. You’ve given me so much…taught me so much. Your love, your strength, your passion, your courage, your determination. And, you’ve given me Layna.

You need to know that I’ve got important flash drives in our safe. One has all of the information about our assets and all of our accounts. Even though I’m cutting out early on you, I’m at least reassured by the fact that financially, you both will be well taken care of for a long time.

The other flash drive has access to all of the research I’ve done. If Layna still decides to take that path in her career, please give it to her. She’s a brilliant girl. If anybody can finish what I started, it would be her.

Lily, I don’t want you to cry anymore. Remember, you “choose strength.” This is the time I need you to find that strength inside you and be a mother and father for Layna. I know you’re more than capable of that. She’s going to need you, especially right now.

I want you to be happy. Always keep that beautiful smile on your face.

I love you so much. I’ll always be with you, Lily. Always.

Until we meet again…

Yours eternally,

Chance

I wipe my tears with my unsteady hand. Sometimes true strength arises from our weakest point. Taking a deep breath, I choose strength once again.

I know I’m dying. Nobody knows my body better than me. Not my family, not any of the doctors. After catching a viral infection that eventually attacks my lungs, I end up with pneumonia. The doctors have tried everything. I’ve been in the ICU for over two weeks, connected to all sorts of tubes and the ventilator since I can’t breathe on my own.

Although I can’t open my eyes, I know what’s happening. My parents, who are now in their seventies, have not left my side. Kathy, along with my other friends, colleagues, personal helpers, and past therapists continue to visit. Layna has taken a leave from her medical school and has flown home. Just like her daddy, she has been attending Johns Hopkins School of Medicine. She has vowed to follow her father’s steps and is focusing her career in neurology. She’s been studying all of the research he left for her, committed to continue working on his findings.

Even as I lie there dying, a sense of pride fulfills me. My little girl, who is now twenty-three, has grown up to be a strong, confident woman who can accomplish anything her heart desires.

I can hear the beeping of the machines around me. I can hear the soft sobbing of my mom from the corner of the room. I can feel the occasional kisses on my forehead from my dad. Most of all, I can feel Layna holding my hand.

It’s not like I haven’t tried, but my body just isn’t strong enough to fight any longer. My family has always known my wishes. I don’t want to be hooked to any artificial means to stay alive. I’m well aware that they have discussed this and need to make some tough decisions. I only hope they remember all of my wishes.

“Mom, I love you.” I hear Layna whispering in my ear. “Thank you for always being my rock and inspiring me to be my best. Be at peace, Mom. Don’t worry about me. I’ll be okay.”

I smile to myself, knowing she’s going to be fine. My parents are still around, and she has a strong support group with her friends and colleagues. Kathy also has been like a second mom to Layna. Besides, she has her dad’s brains, charm, and looks. And, she has my courage. I’m not at all worried about her.

I try to squeeze her hand to let her know that I hear her. I have no idea if I’m successful, but I feel her squeeze my hand tighter.

I don’t fear death, for I have lived. I’ve lived a blissful life for fifty-six years. It hasn’t been easy. No, it hasn’t been easy.

But, I learned. Even with tears in my eyes, I managed to smile. Instead of worrying about my disabilities, I learned to live through my abilities. Instead of never trusting, I learned to bring down my walls for love. Instead of feeling like I wasn’t perfect, I learned that I was better because I was unique. I was me.

I finally understand the purpose of my existence. It’s not to be the next president or to change the world. I’ve lived a long, fulfilling life with people I’ve loved and who have loved me back. When there has been darkness, I’ve searched until I found a glimmer of light. I may not have changed the world, but I changed my world.

That night, I have a wonderful dream. I’m sitting in the middle of nowhere in my wheelchair. As I look around, I notice that I’m in my wheelchair in a meadow, surrounded by beautiful wildflowers. I can feel the soft breeze flowing through my hair, and I breathe in deeply the fresh, country scent.

There’s a song playing far away in the distance. I strain my ear to hear the music. It’s
Perfect
by Pink. I squint my eyes to see where the song is coming from. There’s a girl dancing—a lovely girl with long, curly, blonde hair. She’s dancing and singing the song at the top of her lungs. And, there’s a dog next to her. He’s barking and running around her.

“Come on, Lily. Come dance with me,” she yells.

“Layna?” I whisper. I can hear my voice, speaking clearly.

A figure is walking toward me. It’s a tall man with a strong build and a confident stride. I close my eyes. What’s happening?

“Hey, beautiful.”

I open my eyes to see Chance’s beautiful face next to mine. He looks like he did when I first met him. Just like back then, he looks young and healthy, and his eyes have that familiar twinkle. He’s kneeling in front of me.

Shocked, I reach forward with shaky hands to feel his face. This time, I don’t have to concentrate so hard to control my arm. I can actually touch him softly and tenderly.

He closes his eyes as I continue to explore him, trying to make some sort of sense.

“Chance? Is it really you? I thought I’d never see you again.” How am I talking so clearly? And, my gorgeous husband is here, in front of me. Overwhelmed with emotion, my eyes fill with unshed tears.

“You can’t get rid of me that easily. Besides, I promised you I’d find you again.” Chance smiles and lovingly kisses my lips. “I’ve missed you,” he whispers. Taking my hand, he says, “Come on, somebody’s been waiting a long time to see you again.”

I try to drive my wheelchair, but it doesn’t move.

“You won’t need that here, Lily.” He pulls me up to stand with a gentle tug of my hand. I glance down, and I’m standing on my feet without anybody holding me up. Astonished, I look at Chance questioningly. Chance winks at me and encourages me to take a step.

As if it’s the most natural thing in the world, I step with my right foot and then the left.

Suddenly, the dog is right next to me, jumping up and down, wagging his tail. I scream in delight, “Duke!” He tackles me down and licks my face all over. “Duke, it’s really you!” I laugh because I can’t believe this amazing dream.

Pulling myself up, I glance ahead. Layna is laughing and still singing our song. “Well, come here, sis! We have so much to talk about.”

Moving one foot after another, I break out in a full sprint toward her with Chance and Duke running by my side.