My Perfect Imperfections (21 page)

Our lives change dramatically. Layna has stolen all of our hearts. If she cries, we all try to meet her needs. If she smiles, we all laugh like it’s the most precious display ever. Chance can’t get enough of her. Watching the two of them interact makes me realize that the best is yet to come.

I don’t return to work immediately because I know I have to work hard to get my body and my muscles back to the way they were. I’ve also lost my ability to walk due to being in the hospital for so long, so that means extra hard work in therapy. Besides getting myself better, I take the leave because I want to be with my daughter. I know that every minute with her is priceless.

I notice that Chance also is less obsessed with his research, now avoiding the long hours at work. He’s home more, playing with Layna and helping to take care of her. My parents also officially move in with us, which works out perfectly. Mom helps with Layna and brings her to me whenever I want to hold her or she’s ready for her feeding. In the evenings, Chance likes to hold her against me so he can be part of the breastfeeding experience as well.

Although the doctors have monitored Layna closely and said she’s healthy, I continue to watch the way she moves. It would kill me to find out that she has Cerebral Palsy. I know it’s not genetic, but she is a premature baby and sometimes, that’s a risk. To my relief, Layna continues to meet all of her milestones on time and demonstrates normal muscle control and movement.

Once Layna goes to sleep every night, Chance focuses on my exercise sessions. He pushes me more than ever. “You have to work hard if you want to get back everything you lost, Lily. I’m not going to listen to you saying you’re tired or you want to rest. I know you can do this, and I’ll help you through it. But, you’re not quitting.”

Easy for him to say. I must have not realized the extent of my weakness from my pregnancy. As much as I want to tell him to go to hell, I know he’s right. With him insisting that quitting is not an option, I push myself harder than ever before. I do it for me, for Chance, and for Layna.

When we are in bed one night, Chance starts playing with my hair. “I can tell your muscles are improving, Lily. The tight ones are relaxing more and the weak ones are getting stronger.”

I nod, smiling.

“Lily, thank you. Thank you for bringing Layna into our lives. I was a fool. She is truly a gift. A gift you gave me.”

I snuggle closer to Chance, closing my eyes.

“We haven’t been intimate in a long time. Do you feel like messing around?”

I fling my face up to meet his eyes as they dance mischievously. God, how I miss his teasing. He’s right about the “long time.” Since I’ve been sick most of my pregnancy, neither of us has been in the mood to do anything. But damn, I do miss our “intimate” acts.

I play with his chest and kiss his neck to show him my answer. Instantly, I hear him moan. “I’ve missed you, Lily. I need you so bad. Will you have me?”

When I kiss his lips passionately, there’s no turning back.

Chance, Layna, and I create our own heaven on earth for the next fifteen years with my parents standing right by our side. Just when everything is going perfect, though, life always finds a way to throw a curve ball.

On one Saturday afternoon, as I laugh hysterically watching Chance and Layna playing basketball, Chance falls flat on his face suddenly. I gasp because he continues to lie there without moving.

Layna runs to him, yelling, “Dad! Dad, are you okay?”

I drive my wheelchair to check on him, worried sick at why he’s not moving. When Layna starts to panic, I notice him moving around, trying to get back up. To my relief, I hear his voice.

“It’s okay, Layna. I’m okay. I just tripped, that’s all.”

Chance remains sitting on the ground, so Layna sits next to him. “Since when have you ever just tripped? You’re the one who kicks my butt, even though I’m the one on the high school basketball team,” she teases.

Chance laughs, but I can tell it’s forced. “Guess your dad is getting old.”

Layna laughs with him and tugs his arm to help him stand back on his feet.

When he glances my way, I see the dreaded fear in his eyes.

That week, Chance is officially diagnosed with ALS. The hope that he may not get the disease since he hasn’t been showing any symptoms is suddenly shattered. Chance’s worst fears come true.

Although devastated, Chance tries to remain upbeat. He follows all protocols from the specialists, but avoids talking about his feelings. I don’t know what’s worse. Being born this way so never experience “normal” or experiencing “normal” and have it all taken away. This news is not only tearing him apart, but it’s also killing me. What does this mean? How fast will it progress? How is he going to be able to handle the changes in his life? How is Layna going to deal with the news? What am I going to do without my strong Chance?

The answers come quickly. Unfortunately, once Chance is diagnosed, the disease progresses fast. His muscles fatigue easily, and there are times when he can’t even turn a door knob to open the door. I watch him silently as it takes a toll on him mentally. I try to be there for him and hold him tightly at night, hoping to transfer some of my strength into him.

Chance continues to work as much as he can, but soon he has to decrease his hours. His body simply can’t handle the long hours. Although I’ve been working full time ever since Layna started school, I now decide to decrease my hours as well. I need to be home with him. I can see that depression is hitting him hard. Yet, he refuses to talk about it.

When we’re by our lake one evening, I notice Chance walking very slowly and needing to sit down and rest at every bench. Layna is now sixteen years old and walking ahead with her friend, Ryan. I have a feeling they’re interested in one another, but Chance is not doing well with her possibly having a boyfriend. He won’t allow her to be alone with the boy, even if it’s only an innocent walk. So, here we are, chaperoning them. Unfortunately, Chance is having a hard time keeping up.

“I know you don’t want to hear this, but maybe you need a wheelchair for long distances,” I say with my device.

Chance doesn’t look at me, but continues to watch his daughter as she walks with Ryan. Taking a deep breath, he says, “I can’t have her watch her strong daddy wilt away, Lily. It was the most traumatizing thing I had ever gone through as a child. It killed me to see my tough father like that. I’m still haunted by the visions.”

“Layna is smart and strong. I promise you she’ll be okay. We just have to explain things to her. You see how good she’s been at taking care of me.” I try to ease his mind.

“But she sees me as her super dad, Lily. She sees me as her hero.”

“You’ll always be her hero, Chance. Don’t you know that?”

Chance shakes his head in frustration. “She’s used to me running with her, protecting her, playing sports with her. Come on, Lily. You know what I mean.”

“Look at me, Chance.”

But he continues to stare straight ahead, avoiding me.

I drive my wheelchair so I’m right in front of him, in his field of vision. Now, he’ll be forced to look at me. “Do you see me? Do you really see me, Chance?”

Chance blinks a few times, confused.

“I’ve lived my life in a wheelchair. How do you think I’ve felt my entire life? And you know what has been the worst? That I couldn’t even pick up my own baby when she cried for me. I had to wait for somebody else to bring her to me. Even still, I used to be afraid that I might drop her or hurt her because my arms might move all crazy. But, no matter what, I didn’t let it stop me from living. You’re already signing your death certificate. Stop it! Look at Stephen Hawking. Did he give up? Did I give up?”

“But I’m not you! I’ve always told you that you’re a lot stronger than me. You’ve been able to accomplish whatever you’ve wanted in your life. But me? I’m a coward. If I can’t control a situation, I run and hide. Don’t you know that? I’m not strong like you.” Chance sounds desperate for me to understand.

“Believe it or not, you’re the one who gave me the confidence. You made me believe. It’s not that I’m stronger than you. That’s such bullshit…and a copout. I’ve made a conscious choice. I choose strength, Chance! I choose strength.”

Eventually, Chance does need a wheelchair. Luckily, the house is built so that it can accommodate both of our needs.

When Layna confronts him about all of the changes he’s going through, he says, “I get tired sometimes, honey. I guess I should come clean with you. I have something called ALS, which stands for Amyotrophic Lateral Sclerosis.”

“What? I’ve heard of ALS. What do you mean you have it?” she asks, suddenly worried.

Chance calls me over, and we both talk to Layna, explaining what it means. I’m not sure if she understands all of it, but she’s clearly distressed.

“Is there a cure?”

Chance laughs. “Well, no. Not yet. It’s progressive.”

“Is it kind of like CP like Mom has?”

“Not exactly, honey. Well, some things can be similar. I’ll be going to more therapy sessions like Mom. I may need to talk with a computer. We’ll see. We can’t know for sure.”

“Do I have ALS?” Layna asks, her voice soft.

Chance’s shoulders immediately tighten as tension builds in the room. Unable to answer, he tries to find the right words.

“When you’re an adult, you can get tested for ALS if you want to find out more about it. You’re a healthy young girl, though, so you don’t need to worry about silly things like that,” I explain to Layna since Chance is overcome with emotion.

Suddenly, a look of determination flashes in Layna’s eyes. “I’m going to find a cure for ALS and CP. You wait.”

Without saying another word, she sprints upstairs to her room. Knowing her, she’ll be up all night researching about ALS. I sigh, accepting that she has to do what she needs to in order to understand.

Once we reach our room, Chance finally speaks. “I’m worried about her, Lily. What if she has it? I’ll never be able to forgive myself.”

“Are you listening to yourself? For a physician, you say some really dumb things. You can’t control that. I refuse to live in fear. And, I won’t allow you or Layna to live in fear. Life is too precious and too short.”

“Don’t tell me you’re not scared!” Chance yells.

“Of course, I am. I’m scared every single day. I pray every minute of day and night that she doesn’t carry the mutated gene for it. I even try to bargain with God. That’s all I can do. There are some things I can’t control, and I have to make the most of it. I know that whatever life throws, we’ll have to deal with it. Together and as a family. There is no choice.”

Chance sighs and transfers into the bed while I do the same. “I miss stretching you and massaging you, Lily. I loved touching your body and how it responded to my touch. Now, I’m useless. I can’t do anything I loved.”

I grab his hand and bring it to my breast. I want him right now. Who knows how long we will still be able to make love, but I’ll be damned if I waste any nights without it.

Instantly, Chance responds. “Well, I guess I can still do some things I love,” he whispers.