Authors: Kevin Alan Milne
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In remembrance of Zoe.
Half a heartâ¦full of love.
For where your treasure is,
there will your heart be also.
N
INE LOUSY MINUTES
. That's how long it takes the doctor to deliver the bad news. You'd think something like this would be an all-day affair, with lots of pomp and circumstance and maybe a condolence or two for what lies ahead. Nope, he's all business.
Oh well. It's not like I wasn't expecting it, and I certainly know what all the ramifications will be, because this is the exact outcome I was hoping to avoid.
Now it's unavoidable.
After the doctor briefs us on a few details, my mom rushes out of the room sobbing. When she returns half an hour later, she hands me a brand-new diary.
A diary?
I thought maybe some chocolate or a new outfit to cheer me up. But no, a diary and a pen. She says no matter what happensâgood or badâshe wants me to remember the next few months. “Make it your memoir,” she says. “Document the beauty of each new day. Paint a picture with your words.”
Uhâ¦OK.
My younger sister, Bree, is the artist in the family, but given the circumstances, I see why my mom would want me to put my thoughts and feelings on paper.
For posterityâ¦should I have any.
There's a nurse in the room with us when Mom gives it to me, and she agrees that patients in my situation sometimes find it helpful to write down what they've been throughâor what they're still going throughâbecause it can help them come to grips with the possible outcomes. She says psychologists call it “expressive therapy.”
Perfectâ¦now I'm my own therapist.
Just to make sure I'm doing it right, I ask the nurse if I should just start writing from today forward, or if I should look back at the past. In order to really sort everything out in my head, she suggests I start at the very beginningâthe point that started everything.
That's easyâ¦it started with the butterflies.
Actually, the butterflies had come and gone before that, but they were just sort of there, if you know what I mean. Not really doing anything. Then, when I was fifteen, they began to change, like a metamorphosis, getting bigger and more noticeable. I didn't mind the butterflies, though. They motivated me. Forced me to focus. Fired me up to achieve more.
Every time I stepped up on the starting blocks above the pool, I felt their flutters in my stomach. Sometimes they even ventured up into my chest and down into my arms.
My coach told me to ignore the nervousness, but I embraced itâowned it, loved itâbecause I always swam faster when I was swimming scared.
The year before, as a freshman, I knew I was the fastest girl on the team, but I capped my effort at maybe seventy-five percent, thinking the “cool crowd” would like me more if they weren't always losing to me. That was probably me shying away from the butterflies, rather than leveraging them to my advantage.
Anyway, my freshman strategy was an epic failure, so my sophomore year I took a different approach: Win every time, and don't look back! It didn't earn me any more friends than intentionally losing did, but at least they respected me.
I think.
The day that changed everything was our district meet. I was slated for six events and had already won the first five, earning three personal records and one new Oregon state record.
The butterflies were on fire!
As I stepped up on the blocks for my final event, the girl next to me was shaking out her arms and legs, loosening up. It was Bianca, the only other girl from my school who qualified for the four-hundred-meter Freestyle final. “Good luck, Ann,” she said, which caught me off guard.
I happen to know for a fact that Bianca hated my guts. She was a senior, who didn't take well to losing to underclassmen like me. She wouldn't have even known my name if it wasn't always ahead of hers on the leaderboard. “Thanks. You too.”
She laughed and said she was kidding. Then she whispered so only I could hear, “I hope you drown.”
The butterflies in my stomach were flying faster now. I focused on them instead of on the mean girl to my left. In a few minutes she could hate me all she wanted, but I'd be the one laughing all the way to the state finals. I shook my arms out, pressed my goggles over my eyes, and took a deep breath.
Right then the loudspeaker guy said, “Swimmers, take your mark.”
Swim cap in place? Check. Muscles tensed? Check. Butterflies swarming? Check. All systems were go.
The buzzer rangâ¦and I was off!
In the water, everything felt perfect. This is where I belongedâstaring at the bottom of a pool, beyond the criticism of others who don't “get” me. When I popped up from my initial dive, I was already in the lead. After a few strong strokes my lead had grown. The competition was fast, but I was faster. As I came out of the second turn, I got a good look at the rest of the packâI was nearly a full body length ahead of the next swimmer. I knew right then I could slow down and cruise to an easy victory, but that's not me. I'm a competitor. I'd held back in years past, but not anymore. I pushed harder, churning through the water as fast as I couldâa win is good, but a new record is even better. At two hundred meters it was becoming a landslide.
If I listened carefully between breaths, I could hear the clapping and cheering. I had no friends in the crowdâunless you count my family, which I didn'tâbut I pretended that everyone in the aquatic center was screaming for me.
The butterflies in my stomach had gone largely unnoticed for the past hundred meters, but as I was closing in on the three-hundred-meter mark, they really began to buzz with excitement. They even fluttered up into my chest. Then out of the blue, for the first time ever, one of my friendly butterflies bit me! And it hurt!
That exact moment in time was the very beginning of my nightmareâthe singular point that changed everything.
After the butterfly bit my chest, the world was chaos.
My arms slowed down. I was floundering and flailing. Sinking, not swimming.
I sucked water hard, gasping for breath, but the pain was too intense for anything but panic.
The bottom of the pool was clearer than ever, and growing closer.
The deep end that day was deeper than it ever was before.
And darker.
Oh crap, I thought in the final, fuzzy seconds before the darkness engulfed me. Bianca's wish came true! I'm drowning!
Please, God
, I prayed,
don't let her winâ¦
Fly home, little butterfly, fly.
F
OUR HUNDRED
seventy days ago, right before my eyes, my oldest daughter died. Clinically, anyway. When they pulled her body from the pool, it was limp, like one of the rag dolls she kept on her bed when she was still a little girl. According to the giant timer on the swim-center wall, it took rescuers eighty-nine seconds of CPR to bring her back to life.
Those were the longest eighty-nine seconds in the history of the universe; with each tick of the clock I felt like I'd aged another year. The four-hundred seventy days since, by comparison, have been fractions of an eyeblink. I honestly don't even know why I started keeping track of the lapsed time. Maybe it's because I didn't want to forget the number of extra days we've been graced by her presence.
Or maybe because I've been holding my breath since then, nervously counting the days until the next unforeseen hammer falls.
I remember wanting to cover my son's eyes when the medics began pounding on Ann's chest, but my greater impulse was to rush to her side. I was helpless, though. Impotent. Unable to do anything but watch and cry as they worked on her. Then she sputtered, coughed, and took a ragged breath.
Within minutes I was riding with her in an ambulance, holding her hand and praying to God that whatever was wrong with her wouldn't be serious.
When we finally got word from the doctors, my prayer went unanswered. Not only was it serious, it couldn't have been much worse.
“Congenital cardiomyopathy,” a cardiologist explained. “It's a defect she's had her whole life. It's likely that the strain of swimming caused her to have a brief seizure, and then she went into cardiac arrest. She's lucky to be alive.”
“What are her chances for a full recovery?” I asked.
“Fair.”
Fair?
I hate that word, because nothing ever is. Fair, I mean.
As my granddad used to say, “Life is many wondrous thingsâ¦but fair isn't one of them.” The fact that my fifteen-year-old was in the hospital at all was just the latest evidence supporting this truth. Life is too unpredictable to be fair. It takes from some while giving to others, without rhyme or reason or warning. So don't tell me that my daughter's chances are “fair,” because then I'll know for sure they're not.
As if to prove my granddad right, Ann has spent the last four hundred seventy days in and out of the hospital for ongoing procedures, specialized therapies, diagnostic exams, and countless routine checkups. Yet all of the medicines, tissue ablations, and open-heart surgeries have proven fruitless, which is, in this father's opinion, far beyond unfair.
Life is many wondrous thingsâ¦but fair isn't one of them
. My granddad may have said it, but Ann knows the truth of it better than anyone.
 Â
It is nine thirty at night and I'm sitting in the car in the driveway, trying to pull my thoughts together. I know Emily is probably worried by now, but I can't help that. On a normal weekday I would've been home three hours ago, but Emily called before I left work and said I should join her at the hospital for some “new news.” New news tends to be bad news, and this was no exception.
Emily and I left the hospital at the same time, almost ninety minutes ago, saying we'd have a chat with Bree and Cade as soon as we got home.
She went straight home.
I took a detour.
I didn't mean to, but as I turned onto Sunset Street and saw the steamy glass windows of the Sherwood YMCA, I had to go peek. I haven't been to a swim center in four hundred seventy days, but this seemed as good a time as any to return. I didn't go inside, though. Looking through the glass was more than enough. The swim team was there, tearing back and forth through their lanes like torpedoes. Ann should have been there too, leading them, but instead she's back at the hospital coping with the worst news imaginable.
My phone buzzed in my pocket while I was standing there. It was Emily, probably wondering what was taking me so long. I didn't answer.
I watched the swimmers until their practice ended, then I slowly paced back to the car. As I drove aimlessly around town for another thirty minutes, my thoughts were sunk with the weight of it all. Ann's sickness, I mean. It's not her fault, of course, but the effects of her health have been staggering. Financially, the burden has been huge, but I don't even care about thatâthere's no amount of debt I wouldn't go into to keep my child alive. The heavier strain has been on Emily and me, which is why I was reluctant to head straight home.
It's like there's this giant chasm between us that neither is willing to traverse. With each new day the gulf grows wider. We talk about bridging the gap, we pretend to do things that should close the distance, and yet each time we're given more bad news about Ann, we seem to end up farther apart.
I look at my watch. It's nine forty. Emily just peeked out through the front window. She knows I'm here, so there's no sense in delaying any longer. Besides, the kids deserve to know what's going on before they go to bed.
“Have a seat, guys,” I say soberly while hanging my coat in the closet.
“Ann didn't come home with you either?” asks Bree. “I thought maybe she was coming in your car.”
Emily sniffles and wipes her nose. “Not tonight, Breezy.”
I lock eyes with Emily. “Did you tell them anything yet?”
She shakes her head.
“What's wrong with her now?” Cade is eleven and is just wrapping up fifth grade. He tends to say what he thinks, so I'm seldom surprised by his bluntness.
“Have a seat,” I say again.
Bree is the first to plop down on the couch. She's only a little more than three years younger than Ann, but
sooo
different. Where Ann has always been fairly mature, Bree sometimes teeters on the childish side. Ann is average height for her age, but Bree has always been several inches taller than her peers. Ann likes long hair, Bree prefers short. Ann is quiet, and Breeâ¦isn't. Ann likes to think things through before proceeding, whereas Bree is perfectly fine leaping on a whim and accepting the consequences.
Cade doesn't prefer one sister over the other, but he definitely knows whom he can count on for whatâAnn for assistance, Bree for trouble. Ann's just always had those mother-hen, protective instincts, not that Cade necessarily always wants her help. I recall once when he was in kindergarten, when Emily and I were away, he jumped from our second-story window with a Hefty garbage bag as a parachute. Who came running out the back door of the house at just the right moment to break his fall? Ann. And who stepped in to save him in first grade when he picked a fight with a fourth-grade bully named Rick “The Brick”? Ann. And later that year, when Cade thought it would be fun to play Dodge-Car on the busy road near our house, who was there to drag him by the collar to safety, narrowly missing the delivery truck that nearly ran both of them over? Who else but Ann?
It's always Ann to the rescue, just as it's almost always Bree who comes up with those harebrained ideas that get Cade into trouble.
“Dell, you OK?”
Emily's comment alerts me to the fact that I'm staring blankly at Bree and Cade without saying a word. I nod, take a deep breath, and then carefully explain how the doctors are seeing increased fibrosis in both of Ann's ventricles, while the functionality of her myocardium has continued to deteriorate to the point where cardiac death is becoming a constant threat. “They're keeping her overnight to run some more tests,” I finish solemnly, “mostly because the irregular rhythm is back.”
“Which means what, exactly?” asks Bree. “In simple wordsâ¦so Dimwit can understand.”
“Yeah,” remarks Cade, pointing back at her, “so me and Dimwit can understand.”
Emily shakes her head and sighs, then cuts to the chase as tears fill her eyes, causing them to look glassy. “It means her heart isn't healingâ¦nor is it likely to. She needs a transplant. The sooner the better.”
We've had enough family talks for the kids to know what a transplant means, and it isn't good. “Only as a last resort,” we've told them from time to time when the subject came up. “The risks are high, and the outcome not always optimal.”
As a wave of dread washes over me, I lean forward in my seat. “I want you guys to know, above all else, that things are going to be OK. In the long run, this will be the best thing for Ann, so we should be happy. And they do transplants like this all the time, so no worries there.”
Easy words to sayâ¦I just hope they're true.
“But what it means is that we're going to need something from you guys for the next several months. Two things, actually.” I pause to make sure they are listening. “
Peace
â¦and
quiet
. School gets out in a few weeks, and we can't have you running around like mad March Hares all the time. It's going to be more important than ever that Ann have a stress-free environment until she can have the surgery. Her heart literally might not be able to handle having to deal with some of yourâ¦well, your occasional shenanigans.”
I hate to admit it, but I'm hardly one to talk about having peace and quiet at home. Or shenanigans, for that matter. Before Ann's medical problems, I like to think that I was a pretty decent husband and fatherâcalm, caring, fun to be around, that sort of thing. But nearly eighteen months of dealing with the uncertainty of the situation has taken its toll. Sometimes I blow up at the kids for the littlest things, such as accidentally spilling water on the floor or forgetting to flush the toilet. Once or twice I've heard Emily trying to cover for me, telling them I'm just overly stressed from work, but we both know that's not the only thing eating at me. This chasm between Emily and me, it just has me constantly on edge. Her too. Sometimes I feel like so much of our focus is on Ann that there's not much left for each other. Emotionally, we're tapped out. We're both still going through the motions of being parents, but somehow we've forgotten to be a couple. The result has been an increasingly dysfunctional relationship, including more and more frequent outburstsâsnapping, fighting, arguing, complainingâfrom one or the other of us.
“OK,” Cade says resolutely. “We'll take it easy. For Ann.”
Emily nods her head in appreciation. “She just needs to relax and be happyââchill,' as you kids sayâand bide her time until the right heart comes along. Then, hopefully, things will get better.” She glances at me briefly, then quickly looks away.
Does she mean “better for Ann”? Or “better for us”?
“When will she get it?” asks Bree.
I have to shrug. “Tough to predict. She's on a list, so she has to wait her turn. Could be a month before they find an adequate donor, could be much longer. But the doctors are really hoping it happens by the end of the summer. If she avoids strenuous activity for the next few months, she should be fine. But the longer it takes to find a donor, the greater risk ofâ¦well, let's just pray they find a donor.”
“So that's what we have to look forward to this summer?” Bree whines. “Sitting around here doing nothing, all because Ann can't do anything?” Bree's not a bad kid, but she's at that stage in life where she knows the world turns, she just hasn't figured out that it doesn't revolve around her.
“Well, not quite,” I tell her. “An opportunity has presented itself, and we'd like to know what you think. As you know, your great-grandmother's health has taken a turn for the worse. Now that she's in the nursing home full-time, she really needs someone to look after things at her beach house, and we've been asked if we'd like to stay there for the summer. We talked it over with Ann tonight, and she would love a change of scenery. It's kind of a win-winâthe ocean would obviously be very relaxing for Ann, Mom would get to be near her grandmother all summer long, plus you guys would have the beach, so you wouldn't have to be cooped up all day. What do you think?”
For Cade, it's a no-brainer. “Awesome!”
Bree's reaction, while less than enthusiastic, is no less predictable. “Uhâ¦b-t-dubs, I have friends to think about. You're taking me away from them all summer?”
B-t-dubs
. That's Bree's long way of saying “b-t-w,” which is a short way of saying “by the way.” Apparently it's an eighth-grade thing. I tried telling her once that saying “by the way” would be a whole lot easier for people to understand, but she just rolled her eyes.
“Breezy, it's for Ann,” Emily replies.
“It's always for Ann,” she groans.
“Your friends will still be here when you get back, Bree,” I interject. “And who knows, maybe they can visit over the summer. It's not that far. I'll be coming back and forth anywayâmaybe I can bring a couple of them for a weekend.”
“What do you mean you're coming back and forth?” asks Cade. “You're not staying there with us?”
My eyes are drawn briefly toward Emily, but she looks away again. “Actually,” I reply pensively, “that's the other thing we wanted to talk to you about. I know it's not ideal, but I won't be able to be there the whole time with you guys. I'll go for a day or so at the start, to get you settled in, but then I've got to come back to Portland. I've got a lot going on at work right now, but I'll come visit as often as I can on the weekends.”
I hate lying to the kids. The truth is, Emily and I agreed we needed some space. Wellâ¦I agreed. Emily is mostly just going along.
I look her way again. She wipes at something in her eye, then forces a weary smile and bravely tells the kids, “We'll make do when he's not around. The important thing is that Ann gets away for a little bit. She's always loved the ocean.”
“You guys aren't likeâ¦separating or anythingâ¦are you? Because that would be totes
lame.”