A Short Walk Home (4 page)

Later that evening, we made our way downtown to Restaurant August, where John greeted us at the door (with a quick sign to me everything was set). After we were seated, he hand-delivered personalized menus; John would be preparing each course himself and would bring them to our table personally. Everything was fantastic, with each course better than the last. The food was almost good enough to take my mind off of what was still to come.

When it was time for the final course (Jaymee’s birthday cake) I took a deep breath and tried to mentally prepare myself. Then, out of the corner of my eye, I saw John’s pastry chef Kelly Fields coming around the corner carrying a truly beautiful cake. It was surrounded with flowers and garland. On the very top, crowing the piece, was my family’s third-generation antique engagement ring. Kelly placed the cake on the table; I plucked the ring from the top, and went down on both knees—balance not being my strong suit, one knee would never work.

“Jaymee, I have waited my entire life for one person. And that person is you. Although we’ve technically only just met, I know that I want to spend every day of the rest of my life showing you just how amazing you are and just how much I love you. Will you marry me?” As I finished, I slipped the ring on her finger.
Tears welled up in her eyes. She looked at me, held me close and offered one word.

“Yes.”

John clapped and cheered, while everyone in the restaurant rose to their feet and applauded our engagement. It was an incredible night.

The following day, we attended a fundraising event for The ALD Foundation that somehow transformed into an engagement party. The next morning, as she left to return to Akron, I could not help but picture what the future held. I could not wait for Jaymee and Logan to arrive in Louisiana so that our lives together could truly begin. I was about to go from a single, 37-year-old man to a husband and father, all at once.

In my mind, things were perfect.

“D
AVID
? L
IGHT A
cigar and pour yourself a glass of scotch.” The strong voice of John Hirschbeck, major league umpire and my good friend, filled my ears.

“Why, John?” I asked, surprised.

“Because
I’m
out in the barn sipping scotch and smoking a cigar, and you need to be doing the same. To get in the right frame of mind.” Words from a man halfway across the nation, in Ohio (though if he had been in New Orleans, it wouldn’t have changed anything between us). Needless to say, I complied.

“David, we need to talk about Logan.” John’s voice sounded sure and steady; he was certain about what he wanted to share with me.

“When Little John was diagnosed and began to get sick, everything stopped for us.” Little John referred to John’s son, who had passed away at a young age 20 years prior, after struggling with ALD. “We tried this and that, everything we could; and no matter what we did, it made no difference.”

Sitting on the back porch, a glass of scotch in one hand and a cigar in the other, and separated by nothing more than distance, John and I soon became immersed in discussing the terrors of ALD.

“You are never going to be the same.” His tone was flat, and
his words contained no judgment. I was unclear as to whether this was good or bad.

“Do you mean I’ll forever be a cynic?”

“Not so much a cynic.” He paused. “You’ll never look at your other child the same. You will cherish the simple, insignificant things far more than the big things. Big things that may or may not occur.” The weight of John’s own experience was evident with every word.

For his sake and mine, I tried to keep my voice similarly controlled. “John, I really appreciate what you’re saying. Right now I’m just torn. Here I am—the head of an organization that helps families around the globe to fight against this disease, and I couldn’t even help my own
son
.” I said I
tried
to keep control; I didn’t say I succeeded.

John’s rebuke was kind, but immediate. “Stop. Stop right now and understand something important: from this day forward, there is no right or wrong. There is no, ‘We should have seen this, we could have done that.’ You can’t
do
that to yourself, David. If you do, you’ll live the rest of your life with unforgivable grief and regret.”

My talk with John hammered home the fact that there was no turning back. We had committed ourselves to a course of action; now we had to suck it up and see where it would take us. Although Jaymee and I were both fully aware of the eventual outcome, we intended to use the time remaining to do our best to care for Logan. John had made me understand the need to focus our energies on going forward, not waste time looking back.

“Eighty-two percent.” This was how Jaymee greeted me when I picked up the phone.

“Eighty-two percent of husbands and wives that lose children do not stay together.”

This surprised me, but not for the reasons you might expect. Jaymee and I were in love; the upheaval of a move, the record-breaking devastation of Hurricane Katrina, and numerous other distractions had done nothing to lessen our feelings. Her citation seemed to indicate a doubt that made no sense to me.

I tried to play it off. “Honey, I just picked out new wood floors, new carpet, new tiles, and I spent countless hours spreading Venetian plaster all over the paneling in the family room. If you have any thoughts about me going somewhere, think again.” I was half joking, half serious, but Jaymee got the message. “What we have to do is simple, baby,” I went on. “We have to be a team.”

That being said, I still did my own research the next day about couples losing children and splitting up. The 82 percent figure Jaymee had been upset by was actually the figure given for biological parents; when a stepparent was involved, the number shrank to just 18 percent. We would be fine—mathematically, at least. I was sure of it, especially if we took John’s advice.

I would like to say that every person who reached out to us offered words that were soothing and helpful. Not so much, no; in a situation like ours, you soon lose your patience for cliché and false sentiment.

“Oh David, there is a reason for everything.” A reason for everything? The words of a fool. “Well David, I do believe in miracles …” Good for you.

Twelve years earlier, about a year after my own diagnosis with AMN (a form of ALD) my friend Martin’s father called one
Saturday morning. I had known Mr. Malcolm most of my life. He always treated me like one of his own.

“David? The boys and I are going out to play golf this afternoon and wanted to know if you would join us?” I had been an assistant at a country club during college, and since that time had rarely missed a chance to play.

“Mr. Malcolm, I wish I could, but my legs are bothering me quite a bit,” I said, as solemnly as possible. “Thank you for inviting me, but it’s not going to work today.”

“That’s terrible. I’m sorry that you aren’t doing well. I hope that they can figure this all out soon.” His sincerity touched me.

“Well, you know, there’s a reason for everything.” I said it offhand, just something I’d heard people say. Little did I know that such a simple statement would elicit a firestorm.

“A reason for what? If there is a reason for all this, then tell me—what the hell is the reason?!” Mr. Malcolm’s voice began to rise.

“Well, I have always considered that destiny and fate play a big role in all of our—” I managed before he cut me off.

“David, you’re talking about your own well-being here. You didn’t lose a ball game or fail an exam, son. Your legs don’t
work
. Trying to dismiss that with a cliché is shallow.”

“I guess I didn’t consider it that way,” I said, still trying to find some way of defusing the situation. “I’ve got people asking me a million questions a day; I suppose that my glossing over it lets me minimize what I have to explain.”

“David, if anyone asks you what’s wrong, tell them to mind their own damn business.
You
don’t even know what’s wrong yet; so how in the hell can you tell anyone anything? Don’t worry about all the bullshit, son. You just have to take care of yourself.”

Mr. Malcolm’s final words rang with a certainty that I could
not ignore. He was right; I needed to take stock and persevere. And his wisdom was as true then as it is now, with Logan. If people didn’t understand, or didn’t know what to say, then let them keep their comments to themselves.

H
AVE YOU EVER
felt powerless as a parent? All it takes is for your child to dart away from you at the grocery store, and within a few seconds your power over life is quickly eroded. Jaymee and I were challenged in this way, save that we had even fewer ways of preventing it. Our vulnerability was constant, and we found ourselves feeling exposed for days on end. No matter how much effort we put toward resolving what became a series of everyday nightmares, our lives became a constant test of our wills and patience. The things that we experienced remain with us, though hopefully some will diminish with enough time.

By this time, Jaymee and I were paying so much attention to Logan and to his potential symptoms that our awareness was in overdrive. And Logan did begin to change, though not as significantly or as quickly as we had believed he would. Logan still went to camp daily; it was summer, and he needed something to do. I made sure to check with his camp counselors each day to confirm that they were not seeing anything too unusual on their end. We knew that his behavior would slowly start to change; specifically, his inhibitions and his ability to distinguish right from wrong would be affected. He would become less social and more
withdrawn. But the counselors denied seeing anything like that; to them, Logan was just a normal kid.

All of that was before Logan started wandering.

One evening found us looking everywhere for Logan. He wasn’t in his room, the backyard, or the kitchen. I moved through the house, calling for him all the while, since Jaymee was out on a walk with Brennan. Finally, I went outside on my handicap scooter, and just as I turned out of the garage onto the driveway, I heard his voice.

“Dad? I’m scared.” Logan was speaking in as timid a voice as I had ever heard from him.

“Logan? Where are you?” The looming darkness and my overall state of anxious uncertainty was doing little to ease my worsening state of panic.

“Up here.” I could hear him; his voice was coming from behind me, high enough as to be up in a tree.

The only problem was, there
was
no such tree in our yard.

When I turned and looked up, I saw him. He was on the roof of our neighbor’s house. The
roof
. My mind came to a full stop after that.

“Freeze!” I yelled as loudly as I could. “Don’t move, Logan. We’ll get you down!” He seemed frightened by my sudden shout, but he stood still.

Thankfully, Jaymee and Brennan were just getting back from their walk. She quickly assessed things while I took Brennan inside, and she spent the next 25 minutes attempting to convince Logan that stepping onto a ladder backward was the easiest way for him to get down. We finally managed to get him down, but it didn’t change the fact that we would need to keep an even closer eye on our son.

A few days later, after Jaymee left with Brennan for the library,
I was in my office catching up on a few things. As she left, she reminded me that Logan was playing with the kids next door. I’ll admit it: I should have gone outside to check on him. But I didn’t. I’d known the neighbor well enough that I believed my kid was in good hands.

He wasn’t. Twenty-five minutes after Jaymee left, Logan walked in the house with a deputy sheriff following him. Stunned, I jumped up and immediately made my way over, leading the officer into the garage, and away from Logan. At this point, we still had not told Logan that he had ALD; in our estimation, all that telling him would do is make him more aware, and thus more frightened. I felt I needed to shield him from the discussion I was about to have with the law enforcement official.