by David Cry
One of the other members of my board, Alicia D’Angelo Smith, was also in attendance at the event with her husband, Tim, and their kids, Emily and Christian. I had first been introduced to Alicia when she called me up one afternoon, about two years after I started the foundation. She was seeking advice about her brother-in-law Jeff, who had been diagnosed with my condition, AMN. Alicia and I clicked immediately. A Fordham Law graduate, she came across as extremely gifted intellectually, and was passionate about gaining as much information as possible, so as to aid her brother-in-law as best she could. Over time, we developed a genuine friendship that continues today. My friendship with Alicia grew into an abiding respect that will be forever maintained.
I learned that we had eerily similar upbringings, and that we both shared the desire to see something done for AMN as well as ALD. The trouble has always been that, in dealing with a fatal genetic disorder like ALD, the non-fatal form of the condition is often overlooked, as it seems less significant in comparison. It was Alicia who helped me to see my role in the foundation more clearly. Always there with words of wisdom and advice, she has helped me to grow as a person. My experience with Alicia has taught me that we can never know the true intent of the people we deal with, unless we allow them in. Being from the southern United States, hospitality is a social norm, and my actions echo the way I was raised. This alone has given me a better opportunity to connect with others more readily. Overall, my friendship with Alicia represents some of the best critical thinking I have ever done. I saw an intelligent woman with a need, a woman who was not satisfied to simply sit back and observe. The relationship that has developed since is simply a reflection of these truths.
We are all essentially connected. I don’t mean to make that sound like a cosmic statement; rather, I believe that we all maintain connections. This has never been more evident to me than through my work with the Foundation, where I routinely find friends of friends in even the most far-away places. By making connections, the process of helping others becomes simpler. I believe that when we recognize this, we make life easier for people. My belief is that God wants the best for each of us. Some are asked to traverse roads that are narrower than others. Often, people deal with situations and circumstances that others cannot conceive of. But as long as we remain mindful that we will all be forced to deal with grief someday, that if we live long enough, we will lose someone we love, we can recognize the similarities between our individual experiences. Only when we recognize this and acknowledge it can we truly be free. Facing reality is not a bad thing. It’s something that we will all eventually do, whether we want to or not.
Chapter 11
CONFUSION
LOGAN’S CONDITION CONTINUED to worsen, while Jaymee, Brennan, and I did our best to keep everything together. That is, until one morning in late March 2012, when Logan was taken to the hospital by Jaymee for persistent irregularity. It had been 10 days since he last used the bathroom, and I wanted to see about providing a solution to make him void properly.
I will remember that morning for the rest of my life. Logan was dressed and ready to leave, standing just off to one side of the kitchen. I stood up from my scooter, put my arms around him, and gave him a deep hug. He put his forehead on mine and we kissed. I said, “I love you, buddy.” His response was quick: “I love you too, Dad.”
That was the last time Logan and I shared a meaningful communication.
Once in the hospital, Logan’s initial situation was easily remedied. Everything was going fine, until I received a call from Jaymee.
“David? The doctor just told me that he believes putting in a feeding tube is a good idea.” Jaymee was speaking like a nurse.
“I know that you have some reservations about feeding tubes,” I began, not sure of how to react. “Shouldn’t we have a discussion about this?” Jaymee had already told me that she never wanted a situation like this to happen to Logan. Her determination that Logan would never have a feeding tube was one of the first things she said after he was diagnosed.
“We need to understand something,” I continued. “This is very much a situational decision. If Logan can see, hear, and speak, but cannot swallow effectively enough for his food to go down, then we cannot deny him a feeding tube.” Jaymee agreed with me immediately.
A bit later that day, Jaymee called to tell me that the tube had been successfully inserted. Apparently, there had been a misunderstanding between Jaymee and the doctor, such that he took Jaymee’s noncommittal answer for the okay. To be completely honest, the remainder of my day was shot. Feelings of uncertainty plagued me. Should Logan have a feeding tube or not? Although the answer should have seemed obvious, when dealing with something as chronic as what Logan had, the answer was not always an easy one.
On top of that, decisiveness is something that left our family on July 17, 2010, the day Logan was diagnosed. I had always been someone who made choices with ease, but now there was always something extra to consider, too many variables to count. But Jaymee and I had already decided that, should the need arise, and Logan could still see, speak, and hear, then there would be no discussion—we would put a feeding tube in and not look back. But the day it was installed, his vision was almost gone. He could hear, but only after you repeated yourself loudly a couple of times. Logan could speak, but his speech patterns were becoming increasingly truncated, and lacked any real consistency. All of these were effects of the organic brain disease that had robbed our child of so much. And it was still expanding. Being unsure of what to do as the coming events unfolded was normal. A friend and fellow ALD dad had warned me about this several months before. He and his wife had chosen not to go the feeding tube, life support route. By the time his son had needed a feeding tube, he was all but gone mentally. The choice for them was simple and clear. Not so for us, though we both knew that there was no way we could watch our child starve to death. God bless anyone who has had to.
When Logan returned from his stay in the hospital, one thing was clear: he was different. Decisively different. His smile was still there, but there was nothing behind it, nothing to motivate it. As soon as I saw him, I approached with love and embraced him, but he gave no response. My hug was tight, while his was nonexistent. It was upsetting, all the more so for how confusing it was.
By this time, we had made the decision to employ nursing aids for Logan, who were in our home providing necessary care for the better part of 12 hours a day. While this did provide time for Jaymee, Brennan, or me to steal away for an hour or two, for the most part we made sure we were there, in case anything bad happened. But the fact remained that, since Logan was no longer fit to return to school, there was a real need for full-time aid for him. Jaymee and I lamented this, as school had been a place of peace and interest for him.
We’d already gone through a number of nursing aids by this point. His very first aid, a kind mother of three, truly loved Logan, and made it a point to make him feel special every day. In fact, she cared about him so much that after six months of caring for him every afternoon, she decided to quit the agency that she worked for. She had realized that our acceptance of her and her role in our son’s care was too much to handle emotionally. She left before things got worse for him. My belief is that she didn’t think she could deal with his passing, and stopped working with him to avoid that pain.
The aid working with us when Logan returned from the hospital that day was a nice young woman. She had already put her existing career plans and aspirations on hold, desiring to be here for Logan until the end. The only problem was, as she grew more comfortable with us as a family and her place within it, it began to affect her work ethic. She began arriving later and later each day, presenting a significant problem for us. Logan was at this time in the advanced stages of a drug regimen involving Prednisone, a heavy-duty immunosuppressant. The advanced doses Logan had been taking had increased his weight to 160 pounds. In other words, it was a lot for Jaymee to handle all by herself. And since I could no longer maintain my b
alance reliably, I was useless when it came to helping her to manage him. This was where the aids came in; they were trained to deal with patients four times their size. They knew what to do, and how to do it. To make a long story short, Logan’s aid arriving later and later meant that the burden of dealing with Logan’s increased physical attributes fell squarely on us. Needless to say, after a few weeks I had enough. I reached out to the agency responsible for placing Logan’s aid, and informed them that we would be needing a new aid. We needed someone new, different, and capable.
The following day, her replacement arrived right on time: a nice young man, who worked well with us. A junior college baseball player, he was a nice local kid who got along well with everyone, and who did his job well. Beyond simply caring for Logan, he would also take him for rides, and play the music he knew Logan enjoyed. It wasn’t a perfect solution; being male and physically fit, he was one of a small number of aids employed for jobs requiring real strength. As a result, there would occasionally be conflicts in which he was unavailable, and we would land with someone new. Over time, a variety of people came and went. We tried our best to take everything in stride; after all, it was all we could do.
One night, Jaymee decided that I needed to become Logan’s legal father. She was insistent, and completely certain that I deserved the title, in addition to its duties. Never having been one for titles, I would have been fine with things remaining the way they’d always been; had it not been for Logan’s condition, they may well have. But Jaymee felt strongly about this; perhaps due to her own dealings with her mom and dad, she felt sure that this was right. In the end, I didn’t argue; I simply gave Jaymee what she wanted. I contacted an attorney friend of ours who dealt with adoptions. Jaymee and I sat down with her one afternoon, and once all the right things had been put in place, I became Logan’s legally regarded father—just like that.
Well, perhaps there was a bit more to it. After going through all of the requisite legal hoops, Jaymee, Brennan, and I arrived in court on our appointed date, after stopping by the office of a close friend of ours, a judge. The entire process took two minutes; there are some advantages to being a visible part of the community. The judge overseeing Logan’s adoption, Dawn Ammaker, knew my mother, so we were able to chat a bit about mutual friends and the community in general. I recall that Brennan was excited to see so many police officers in one place. Befriending one, he ended up with his very own junior deputy badge, and sat on the judge’s lap to ring the bell that chimed each time an adoption was official. The only thing that cast a shadow over the proceedings was that Logan did not accompany us to the courthouse. He had reached the point where even taking him out into public carried certain risks and consequences. To tell the truth, Logan never understood that I had become his dad. But still, when I held him in those days before his faculties left him, he would still whisper, “I love you, Dad, I love you, Dad.” As long as he knew that I loved him, nothing else mattered.
Family. To me, there is nothing more important than family. Which isn’t to say that family is without its stresses; love and closeness with anyone entails trouble, strife, and disagreements. But what makes it all interesting are the ways that it has made me stronger, at every turn. I am better able to manage the challenges I have faced. I consider myself blessed to be Logan’s dad, legal or otherwise.
I have friends who have stepchildren of their own; from what I’ve seen, it can be a challenging and overwhelming situation. Kids are different from adults, and not just in temperament and action. The manner in which they process information, and the way they view the world, is not nearly as cut and dried as the adult viewpoint. But despite the challenges involved, each of my friends in a step situation is a good parent. Regardless of the obstacles present with the child, the biological parent, or the family, they all strive to do what is best for their family. And I was the same; I’d always thought of Logan as mine, and while the legal reality is now something I cherish, it was never something I felt had to happen. If you have a heart, the capacity to love, and the will to care, then no matter how challenging things may seem, your relationship with your child will always pay dividends in the end. You will eventually reap the rewards of your actions. As I’ve said, Logan and I struggled in the initial stages of our relationship. But since that time, and in remarkably short order, we had evolved to a place of mutual respect and love.
As spring turned to summer, Logan’s condition continued to show signs of worsening. We accepted this, knowing full well that this was inevitable. But by the end of that summer, my mother took Jaymee and me aside to tell us that we needed a break. ‘A break,’ I thought. ‘What is that, again?’
Mom had already spoken with a friend in town who owned a condominium in Destin, Florida, a place I’d often visited as a child. The beaches were beautiful, offering white sand and clean water. She suggested that we make plans to be away for a couple of nights, while she and my brother looked after Logan.
This was twice as kind on my mother’s part; it had already been a bit of a stressful year for my mother. My father, George, had been in and out of the hospital throughout the summer. He had a heart valve infection, and things were looking far from ideal. All the same, Mom’s offer was appreciated, and we decided to take her up on her suggestion. Not only us, but Brennan needed to get away too.
And the two nights away after more than two years of strife was a welcome change, though I thought of little else than Logan. I did not even visit the actual beach, handicap scooters not being the best fit for sandy beaches. Instead, I watched from a nearby pier that led down to the sand, taking pictures and enjoying what I saw. Brennan, now 3, had learned how to fly a kite, and was already quite good at it (though it took lots of concentration on his part).
Everything had gone fine; that is, until the morning we were set to return. My cell phone rang at 7:45 that morning, with my mother on the other end, sounding stressed.
“David? What time is the nursing aid supposed to be here?”
“7:30 A.M.” We had made plans for only one aid to be in our home while we were away—the young man we’d grown so attached to. After all, in addition to being capable, he was also studious and punctual. It would seem that this was one of his unavailable days, and that the agency had needed to send a temporary replacement.
“Well, whoever is supposed to be here is not here. Logan is awake and we are having a hard time handling things.” The level of stress in her voice was reaching off the charts. I told her I would make a call and be right back in touch. Needless to say, I was not happy at all.
I called the nursing aid provider and lit into them immediately. In an attempt to pacify me, they told me that they would be firing the woman involved. “Don’t do it until after her work day is over, please,” I specified. I needed to make sure that my mom and brother weren’t stuck with Logan alone all day. But as we drove home that day, I came to the difficult realization that nothing is ever perfect. No surprise, really; dealing with negative was becoming commonplace.
We pulled into the driveway at 5:15 P.M. The nursing aid’s car was nowhere to be found. Upon entering the house, we were greeted by my mother, who had a definite look of displeasure on her face.
“She left at 5:00 P.M.,” she told us. “She said that Logan was asleep. Of course, when I went into his room a minute later, he was wide awake.” Somehow, I was no longer surprised.
Mom went on to describe their day. The aid had arrived, late, and gave Logan a quick shower. After getting him dressed, she put him on the couch, sat down next to him, and proceeded to take out her cell phone and spend the next 45 minutes yelling at the person on the other end. My mother was mortified. After lunch, the same routine, save that the afternoon call was even worse than the first. I was disgusted; my mother did not need to be exposed to this, and neither did Logan. The following morning, I called up the aid company and almost fired them entirely. Jaymee and I had been discussing something for some time, and based on Logan’s worsening symptoms, we
felt it was nearly time to take action.
Jaymee and I sat down with the managers of a neurological respite care facility, located just a few minutes away from our home. If Logan were moved there, we would be assured of his receiving consistent, competent care. We made sure to talk to the nurses there, as well as touring the facility, before we went home to think things over and talk.
Logan moved into the care facility toward the end of November 2012. This was the single most difficult decision of our life. It took months of discussion and discernment before Jaymee and I felt we were ready. Our family understood our actions. Jaymee made a point of going to see him every day, without fail, while I was there at least four times a week. By this point, Logan could no longer see, speak, or hear. He was nearing a persistent vegetative state, a change that signified that the end was near. As much as we wanted to be there for him 24/7, we also had another child to think about.
One of the negative aspects of having an intelligent small child is that he understands things that he perhaps should not. Between having an older brother with ALD, and a father who runs a foundation for boys with ALD, Brennan knew a lot. On his first day of psychotherapy, his therapist reported that Brennan explained ALD better than I did. Needless to say, one of my greatest fears all along was exposing Brennan to the end-of-life issues involving Logan. I felt like we needed to protect him from a great deal of this, and make sure that what he did learn, he fully understood. He was already going to be adversely affected by the experience; watching his brother actually die was too much. Meanwhile, my father had been diagnosed with multiple myeloma, a virulent cancer that he could not receive treatment for. His heart valve infection had yet to be completely neutralized, and any care he could potentially receive for his cancer would conflict with his existing treatment.