by David Cry
In my mind, things were perfect.
Chapter 3
WISDOM
“DAVID? LIGHT 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.
Chapter 4
WALK AWAY
HAVE 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 Brenn
an. 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.
“Sir, your son was picked up walking down the street that leads to the boat launch and bayou.” The officer delivered these words calmly, as though he said them every day.
“The bayou?” I was floored. “How the heck did he get there?” Logan had been gone for only a short time, but he appeared to have made his way quickly.
“Apparently, he left your neighborhood, crossed the bridge that spans the interstate, and began walking toward the water.” The officer’s expression did not change.
I quickly did my best to explain to the officer the conditions we were now living under. I assured him that we would do our best to make sure that Logan stayed in our field of vision at all times.
When Jaymee got home, she was not surprised.
“He ran away from me at the store yesterday,” she informed me matter-of-factly. “I was going to tell you, but then I realized that this is the beginning of something we are just going to have to deal with.”
And deal with it we did. Or tried to, anyway. But three weeks later, there was a knock on the front door. Jaymee and Brennan? At the library, of course. And Logan? He was supposedly playing with a friend 20 blocks away.
“Mister?” The man, a neighbor from a few streets over, looked to be quite pissed off. “I live down the street; your son just took a Bud Light out of the refrigerator in my garage and started drinking it as he walked down the street.”
Once again, I led the way to the garage, still trying to shield Logan from unnecessary information.
“Sir, my son has a neurodegenerative condition.” The man looked at me like I was speaking French. “My son is dying of a terrible disease. Part of his symptoms include not having the ability to properly make decisions.”
The man’s head dropped. “I’m so sorry. I had no idea. I was just surprised to see a kid his age drinking a Bud Light, much less my Bud Light.” He began shifting his weight from foot to foot awkwardly. “My wife couldn’t believe it either. We were just … surprised.”
I assured him that I would make sure Logan stayed away from his end of the neighborhood, and saw him out. As I closed the door, I reluctantly reflected on the developing situation. Although I hated to admit it, our son was experiencing the beginnings of issues that would continue to grow worse. As a parent, I felt helpless.
That summer felt as though it would never end. The days were long, and Logan grew more and more restless every day. With the start of school coming up fast, Jaymee and I turned our attention to what was next for Logan.
“I don’t care if he does homework. I do not mind if he does not study. I just want to make sure that school provides a viable social experience.” I was speaking to the group of people who would be Logan’s seventh-grade teachers during the upcoming school term. Jaymee and I had decided to meet with them, along with the vice principal of his school, to review what accommodations he might need during the course of the year. “I will not put an ounce of pressure on him,” I continued firmly. “School needs to be focused on his quality of life.”
Jaymee and I shared in the belief that Logan’s academic progress mattered little, in light of what the future held. We felt we needed to focus on his being fulfilled—nothing more, and certainly nothing less.
But as time went on, Logan’s awareness and ability to properly make decisions continued to worsen. He began wandering off even more than before, to the point that if the back door were left unlocked, he would walk out and be three streets over in less than 10 minutes. Life was becoming increasingly chaotic. Jaymee would enter his bedroom in the evening to say goodnight, only to find an empty room. The sight of her, running through the living room and down the hall into the garage with keys in hand to retrieve our son became all too common.
We took a trip to Walt Disney World, just two weeks after Logan’s initial diagnosis. The first night we were there, Logan asked if he could go to the arcade, located no more than 400 feet from the front of our building. Jaymee took him over, gave him the tokens he would need, and firmly explained that we would be back to retrieve him in an hour. But an hour later when I returned to the arcade, Logan was nowhere to be found.
Not wanting to alarm Jaymee, I rode around on my handicap scooter, trying to find him. I looked at the pool. No Logan. I looked in the restaurant. No Logan. I finally called Jaymee, hoping he had made his way back to the room. No Logan. With baby Brennan in tow, Jaymee and I looked everywhere; we looked high, we looked low, but still no Logan. I finally entered the massive main hotel, and as I pulled around the corner I saw my son pacing back and forth. You can imagine the relief we felt at finding him, but there remained a feeling of unease. We had been warned that dementia would be one of the byproducts of his illness, and that pacing would likely be one of the first visual indications of this. The feeling of powerlessness was still there, strong as ever. We returned to the room, having decided not to take our eyes off of him again. The repercussions were too extreme.
One Saturday afternoon, a few weeks after we returned from Disney, Logan and I were outside. Although my mobility is somewhat limited, I still work in my yard almost every day—planting flowers or bulbs, picking weeds and cutting grass. I enjoy being outside; so much so that I have never allowed my limitations to slow me down in this area. If you’re creative enough, you can adapt to anything, provided you’re willing to put in the time and effort.
At some point while we were outside, it began to rain. Picking up some of my tools, I motioned Logan toward the back door and told him to go inside while I finished cleaning up. After returning my tools to the garage, I went inside myself. As I rounded the corner into our breakfast area, Jaymee met me with a question.
“Where is Logan?” she asked, a look of concern on her face.
“I told him to come inside,” I answered, growing anxious myself. “The last I saw him, he was walking toward the back door. Did he not come in?” By now, the rain was coming down hard.
“No, he isn’t here!” Jaymee was upset, and understandably so. I immediately headed back o
utside. As I opened the back door, already calling for Logan, I heard some shuffling. Coming up a path just off the back porch, drenched to the bone and pacing back and forth, was Logan.
Hard though it was to accept it, on some level I understood what I was seeing. Because of the changes his body was undergoing, his brain told him that pacing was soothing. It was also failing to tell him that it was raining, and that it was a bad thing to be out in the rain. He was just content to continue what he was doing.
That day will always stand out in my mind as the moment when I came to grips with the full, overwhelming reality of our situation. As he came back into the house, greeted by his mother, all I could think was that for all our immersion in what our son was dealing with, we didn’t have a clue. Things were going to get worse. This was the guarantee of that rainy day.
And so “worse” became our norm. There was nothing we could do to prevent or ease the routines Logan fell into. Past a certain point, Logan’s habit of walking away became expected, even normal. Jaymee and I tried to develop ways of anticipating his actions, to help ensure that we would catch him when he tried to escape. The most frustrating part of the entire thing was that Logan had no idea what he was doing. He did not intend to leave home; it’s not like he didn’t enjoy being here. It simply was that the part of his brain that controlled his impulses was no longer connected properly. The gloves had to come off, as we tried to keep Logan out of harm’s way without resorting to simply locking him in his room. We were no longer hoping for “the best” to occur; that notion was quickly abandoned. Even though we felt like shrinking away from our task, we had little choice; we had to protect our son as best we could.
And yes, though it pains me to admit it, there were days when I felt like a bad parent. I was supposed to know what was coming; hadn’t I consulted with doctors worldwide, didn’t I provide advice for this exact circumstance to other parents? And still, we were woefully unprepared for what we experienced.
