A Short Walk Home (5 page)

“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 outside. 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.

In retrospect, perhaps nothing could have prepared us. In so many ways, what we dealt with in Logan’s illness was simply life itself. None of us knows what will happen tomorrow; will we still be here? Will something terrible occur? The whole point is to live
today
. Love as hard as you can. Keep those who mean the most to you closest to you. Don’t allow petty bickering to overshadow what should be a good life experience. In the end, it’s just not worth it.

Still, there were times when it was hard to remember that.

“H
ONEY
, I
WANT
to have a baby.” Jaymee, never one to beat around the bush, was as direct that night as I’d ever heard her. We’d been married for a while at this point, but still—no flowers, no candy; just a simple, straightforward statement that reflected exactly what was on her mind? So much for romance.

“A baby? Honey, you know we shouldn’t. With my genetics, and your family history, chances are high that …” I trailed off halfheartedly; I was really not in the mood to tackle this topic.

“What’s wrong?” she chided me playfully. “I know you, David Cry. You want a child of your own. You know, someone to pass that ego of yours along to.” She laughed and kissed me. Apparently it was up to me to be the serious one in the conversation.

“Baby, I really don’t want to go into this right now. You can’t begin to imagine how complicated it would be.” Even conception would be complex and fraught with possible obstacles; with Jaymee being a carrier of ALD and myself having an active form of the disease, the chances of our child
not
being exposed to this condition were slim. Having lived with the disease for many years, I refused to pass that burden on to a child; it was out of the question for me. I had seen far too many families endure the
worst, struggling with a loved one’s illness. Why put ourselves through that? Why put our child through that?

“David, I need to let you in on something. I
have
been listening.” A wry smile appeared on her beautiful face. She was up to something.

Specifically, she had been listening to me advise families exposed to ALD in regards to PGD, an innovative procedure, capable of preventing ALD in the next generation. Pre-implantation genetic diagnosis (PGD), a bona fide medical miracle, is a technique whereby a fertilized ovum’s entire genetic makeup is inspected prior to being placed in the uterus. This innovative process had been in use for a few years by that point, primarily by the physician who developed it, Dr. Marcus Hughes. At the time, Dr. Hughes worked at a medical center in Detroit, by way of Johns Hopkins. Dr. Hughes and his staff provide what I believe to be an invaluable service for any couple who knows, like we did, that a genetic abnormality runs in their family. By allowing the families to make informed decisions regarding their and their offspring’s future, it ensures that future generations are spared a fate similar to those who have perished before them. It was clear that Jaymee was already invested in the idea.

All she had to do was convince me.

“Honey, PGD is not cheap.” I decided to open with the financial approach, as my frugal nature was always close to the surface. “The last family I referred to Dr. Hughes spent just over $30,000, and did
not
conceive a child. That’s all risk, no benefit.”

I should have known Jaymee would be prepared. She came back at me without hesitation, saying, “Honey, I know how much it costs. I’ve done my homework. And we
can
afford it. Provided we make certain … sacrifices. For example, don’t count on getting a new car until around 2015.” She wasn’t flinching.

She was speaking to me as though I were an employee. And when Jaymee took that tone with me, what else could I say but, “Yes, boss.”

We headed for the in-vitro specialist’s office with optimism. Our doctor was a nice woman, very bright, and while she had never performed a PGD before, this caused no fear in either me or Jaymee. We had already sent the necessary bloodwork, including mine, Jaymee’s, Logan’s and my mother’s, up to geneticists in Baltimore. The doctors there were already hard at work creating a DNA model of our immediate family to help with the PGD process. The physician we saw went over the process of in-vitro fertilization with us. She described in full detail the type of injections Jaymee would be required to take, and the duration of those medications. More pertinent to me, I learned that by default I would be the person giving my wife these shots (injected into the stomach) throughout the process. I felt happier than I expected at all this; we were doing what we could, taking the best steps forward possible. But at the same time, I remained mindful of a decision I had made a long time ago, specifically regarding children.

Just after I learned that my legs would no longer work, I decided that having children was not something that was reasonable for me. As long as I ran the risk of passing my disease along, I couldn’t justify it.