by David Cry
All the same, we tried to keep up some degree of normalcy. We had decided to take Brennan to his first LSU football game, which, thanks to a friend of a friend, we had good tickets for. Brennan was already anxious and ready; I was excited myself. It wasn’t going to be a nationally televised game, as the broadcast tended to draw too many people to the campus. Plus, LSU was playing a lesser opponent that day, making it easier for us to get around with a little one. We left Saturday morning and made a day of it. We stopped at a famous Baton Rouge local restaurant for lunch, and with clear skies above and all we needed in tow, we enjoyed the experience.
The morning after the football game, I entered my office after finishing my morning coffee, and logged on to my computer. Waiting for me there was a message from an ALD mom, responding to a message I’d placed on a social networking site regarding Logan’s condition. It read:
“David, you should check your son out of the nursing home he is in and send him to live with me until he dies.”
I was flattened. I picked up the phone and reached out to a contact, who said that she was vaguely familiar with the woman. She had been told by all of the top doctors that her son was not ideal for transplant due to the severe risk of detrimental effects. Despite this, she was determined to make it happen. Now, in the families that I’ve advised, transplants are usually pursued with one of two mindsets. Some families transplant their boys for the sake of their sons, to try to give them a better life. Others do so for themselves, with no consideration for their children at all. If a physician, specifically an expert in the realm of ALD, indicates that a procedure is potentially life-threatening and unlikely to help, and you do so anyway, it rarely says good things about your intention, or your state of mind. Already stressed as I was, the woman on the other end of that message was on the verge of my wrath. It was only by Jaymee’s intercession that she was spared. She walked into my office, immediately taking in the expression on my face. She moved closer, read the post, and began rubbing my back.
“Find a peaceful place,” she whispered. She knew exactly what to say, and how to say it. Jaymee made me see that all my dark thoughts about tearing into this woman simply weren’t needed. I simply cut ties with the woman, chalking it up to just being a bad experience. I just couldn’t understand her mindset. I suppose that we all possess coping skills, but mine are a bit different; I do my best to live in a place of reality every day.
I hear people complain about all varieties of things, but for the most part, they’ve always struck me as insignificant, short-sighted concerns. After going through everything I have—losing my legs to the extent that it changed my whole life; sacrificing things most people never consider losing; watching helplessly as the boy I called son passed away before my eyes—all of these things have tempered my existence.
With Logan in a care facility, things changed around the house almost immediately. Most obvious was the fact that no one was showing up at our home every morning to provide care. It was strange, initially; waking up early to let someone in had become my “normal.” There was no longer any time limit for how long we could be gone, or a predetermined time that we needed to be home by.
Of course, there were bittersweet feelings as well. Both Jaymee and I had wanted to take care of Logan at home every day. We had simply never expected that Logan’s condition would become as challenging as it did. Nonetheless, our hearts broke for him.
Seeing Logan was bittersweet as a result. While I wanted to see him, it was becoming increasingly difficult. Brennan, who went with us in the beginning, started to lose interest in being there within five minutes. All of it made the situation tougher to manage.
At times, I would take Brennan into the music room and play the piano they had there. Although this kept him occupied, it was more so to allow Jaymee some one-on-one time with Logan, which she seemed to need. It was difficult, watching her with Logan. Most days, she would crawl into bed with him, wrap her arms around him, place her head on his shoulder, and just hold him. There were rarely tears, at least that I saw. But there was always the desperate reality that Logan wasn’t coming back.
For me, this period was all the more challenging because of my father’s deteriorating condition. My dad was actually placed in a facility next door to Logan’s. In short, he was not well. It became our routine to go see Logan, and then go next door to see my dad. His doctor was the wife of a close friend, who kept me regularly updated on his condition. It was her opinion that he was quite sick, and that his chances for recovery were slim. All the same, I maintained the hope that things would take a turn for the better.
When I was a kid, I remember worrying about my father. Work was such a priority for him, and yet was so stressful that I often worried about his overall health. At the time, my primary prayer was that my father would live long enough to meet my children. Thankfully, my fears never came to pass, and my father certainly had the chance to meet his grandchildren. By the point that my dad became extremely ill, I felt my prayer had been answered. I thanked God for this.
My father was always an important center in my life. Although he loved me, and showed it, he was always quick to poke and prod me. I knew that he was proud of what I had accomplished, but in his mind, I would always be “that pesky kid.” Interestingly enough, I can already tell that my relationship with Brennan will rival the one I had with my dad. My dad always saw potential in me, but I never allowed it to come out. Because of that, he stayed on me, pushing me to make sure I rose to the level I needed to.
I am content with the parent I have become. I owe my dad a great deal for that. Although I would never spank my son, I make sure that there are boundaries in place. I will not spend time making excuses for Brennan when he is older; nor do I feel that I’ll have to. There is nothing wrong with the way I was raised. Although the times are now different, some things remain relevant.
One afternoon, when Jaymee and I went by to see my dad, we found that my brother was already there. He looked concerned, and as I approached my father only to see him shrink away, I understood why. My father had no idea who I was. Disheartened, I managed to hold things together in front of my brother, but I felt horrible all through. This was a critical symptom; the cancer was obviously advancing.
My oldest brother, Jim, flew in from Honolulu the following day. Mom had contacted him to let him know that the doctor wanted to hold a family meeting about Dad. It was the first time I had seen Jim in five years, and while I was happy to see him, it didn’t change the grim nature of our meeting.
We sat down with Dr. Mahoney, my father’s primary physician, and she shared her thoughts. My father was on a train to nowhere; he was not responding well to the prescribed medications, and she did not know how much time he had remaining. I had spoken with another doctor in Minnesota regarding my dad’s condition, and I shared his insights. At any moment, this form of cancer could speed up its progress dramatically. I questioned Dr. Mahoney regarding the obvious dementia I had seen the previous day, and she explained that it was the result of a new treatment she was trying, which might show results.
When Jim and I went to visit him, he did seem to be feeling better. As soon as Jim entered the room, though it had been close to a year since he and Dad had seen each other, Dad immediately began asking about Alex, Jim’s second child, and Annika, his daughter. I couldn’t help but smile; he was back! I moved further into the room, and Dad made a disparaging remark about me. He really was back!
This was a confusing time for me. Logan’s worsening condition taken with my father’s fatal diagnosis led me to question a great deal. Why were we going through as much as we were? Was there any hope for relief? Hirschbeck’s words, “There is no right or wrong,” pulled me through. I knew in my heart that I had to be ready for anything. During this time, Jaymee and I moved closer together than I ever imagined we could. We really had no other choice.
Chapter 12
NEVER SAY GOODBYE
THROUGH IT ALL, the thing I did not do a great
deal of was talking to other people about what we as a family were dealing with. This was a departure for me; I normally discuss almost everything with lots of people, and that’s no overstatement. I’ve got a big mouth and I really like to speak. But this unusual silence was not all that surprising to me. As I mentioned previously, I knew whom I could turn to and whom I couldn’t. It was a personal choice based on what was best for us, as we lived through our private nightmare.
As Logan’s problems increased, so did the communications from two people in particular. John would text or email me almost every day, especially toward the end, while Marty called at least three times a week. And yet, there wasn’t anything different being said from day to day, week to week.
One morning, Jaymee walked in the house, minutes after leaving for work. “I’m losing my job,” she announced. Silence. I didn’t know what to say. Jaymee had been working from home for nearly three years, telecommuting as her company in Tulsa did not wish to lose her. They had even given her an exclusive contract allowing the set-up to exist, ensuring that she continued to provide the same level of input. In light of Logan’s concerns, this had been a godsend; she was here every day in case something went awry.
“The new manager says that the ‘symmetry of the company’ is ‘adversely affected by remote employees.’ What does that even mean?” It was clear that she was frustrated. We decided that we would discuss all of this later, and she went back to work. And after thinking it over, I knew exactly how to present it.
“This is a gift, baby.” Jaymee looked at me, confused.
“A gift?” she repeated.
“You’re receiving severance, aren’t you? So relax. Go spend as much time with Logan as you can, as soon as you’re done working.” I smiled at her reassuringly. “This isn’t your fault. You know it’s not. It’s a gift from God. He’s telling you that you need to be with Lo.” She smiled back. The following week, Jaymee finished her last day, and the following morning, she dropped Brennan off at school, and went to see Logan. I did not see her again until after she’d picked Brennan back up from school, later that day.
One afternoon, Jaymee walked in, clearly mad. “The doctor called me,” she said, clearly frustrated. “He told me that our request to stop Logan’s nutrition was nothing short of euthanasia.” She and I had been discussing the idea of holding back some of the nutrition the medical facility placed in his feeding tube each day.
At a certain point, I had started going with Jaymee on specific days to see Logan. I already knew based on Logan’s symptoms that things were not going well. Seeing him only cemented this fact in my mind. I knew that the end was likely approaching. He was already on the verge of a persistent vegetative state. Logan was nearing the point of no return, and nothing we could do was going to make him better. Jaymee and I viewed reducing Logan’s nutrition in the same manner one would view shutting off a life support machine. Apparently, the doctor at the facility thought otherwise.
The word euthanasia immediately caught my attention. By definition, euthanasia is a medical term, not typically used for what we had planned. The doctor’s assertion amounted to an accusation, one that was harmful toward Jaymee. I just couldn’t understand how the doctor felt he could berate others to make them change their minds. It was bewildering.
I asked for the doctor’s number. Jaymee, knowing that I was about to go into CEO mode, decided to stay and listen in.
“Hello, doctor? This is David Cry.” I decided to be direct with the man. He had just insulted my wife; what’s more, he did not act this way at all.
“Hello, Mr. Cry. How can I help you?”
I lit into him. “Sir, I have a few things I need to say. First of all, whatever choice Jaymee and I make regarding Logan is just that: our choice. You indicated to my wife that she would be committing euthanasia in regards to Logan. Sir, Jaymee is neither a doctor nor a nurse; her actions could not possibly constitute euthanasia.” “God says that …” he started to say, before I cut him off.
“Sir. No matter what God says, this is our choice, our own free will. Are you telling me that if we choose to eliminate feedings, your institution will not support our decision?”
“No, sir, we will not,” he answered. “Ecclesiastes says, ‘There is a reason for everything.’ It was known long ago what each person’s fate would be. There is no use in arguing with God about your destiny.”
“Exactly; I’m pleased that you brought that up,” I came back at him. “You are arguing about a destiny that isn’t even yours. With all due respect to religious fervor, you said yourself that you should not, in any way, assert yourself to the extent that you go against our son’s destiny. Don’t you see the hypocrisy in what you just said?” I was ready to take him down.
“Mr. Cry, this is what I think.” Not much of a defense.
“I believe you owe my wife an apology.” I wanted what I wanted, and I had no intention of hanging up until I got it.
“I’m sorry sir, but I’m not going to do that.”
“Doctor, Logan has been with you for nearly six months. In that span of time, how often have you seen him in capacity as his doctor?” I wanted to get to the heart of everything.
“Let’s see … four times,” he said, after a moment’s hesitation.
“And how long did you spend with him each time you saw him?”
“Fifteen minutes.” His response spoke volumes.
“So: You have spent a grand total of one hour with my son, who has been with you 24 hours a day, seven days a week, for six months. And yet you feel this entitles you to willingly pass judgment on my wife? You should be ashamed, sir.” All of this was making me question our decision to place Logan there in the first place.
Religion. That was what it came down to. The doctor’s religious views prevented him from being emotionally available to the parents of a terminally ill child. While I respect anyone’s beliefs, I am also mindful that you can go too far when it comes to projecting your values on others. You can do irreparable harm in asserting yourself in this way. Our discussion did not improve from there. When I mentioned that Logan was nearing a persistent vegetative state, the doctor informed me that he does not openly recognize that term as legitimate. All I can say is that I felt sorry for his patients. I half-believed the man thought that God Himself was going to come down and heal Logan, and we would be a normal, happy family again. I suppose I do believe that miracles are possible; all the same, I’m not arrogant enough to put that at anyone’s feet.
What’s more, the question of “healing” is not nearly as simple as all that. Technically, I have been healed as a result of my illness. The only thing is, the healing didn’t happen to my legs. The healing that I experienced was spiritual, as it made me the man I am today, and placed me on the path I still walk.
This is something I’ve never understood: why would God heal one person, but allow another to continue on a painful path? The God I believe in is universal; He is not going to sit in Heaven, playing favorites.
Logan had reached the point medically where his body was already beginning to reject the nutrition provided to him. As I understand this, this is a very painful process. And the one thing Jaymee and I had agreed on from day one was that we would do our best to eliminate Logan’s pain, at all costs. No matter what that meant, we were committed to doing it.
What I did not know at the time was that, just after Jaymee had hung up on Logan’s “doctor,” she’d received a call from my mother. She was currently with my dad at the nursing home across town. Jaymee related to Mom what had been said, starting a chain of events that would resolve our problem, even as I took Logan’s caretaker to task for his negligence.
While my mother spoke with Jaymee, a nurse working at my father’s care facility was in the room. She couldn’t help but to overhear their exchange. When Mom and Jaymee were finished speaking, the nurse excused herself. A few minutes later she came back and told my mother that, after hearing Logan’s situation, she had spoken with the ad
ministrator of the care facility. The decision had already been made: Logan was to be allowed to become a resident there.
Jaymee was floored. They had never taken a pediatrics patient before; Logan was their first. All the same, they did have the ability to care for him, and what’s more, would comply with our wishes. The following day, Logan was loaded up and brought to the new care facility. A part of Jaymee was torn, as the day-to-day staff at Logan’s facility had grown to love our little boy; you could see that in the tender way they cared for him. And while that was nice for us, and provided the level of confidence we needed, we had no choice. The well-being of our son, and doing what was best for him, mattered most.
Logan got settled into his new place easily. The nursing staff was very direct and straightforward about all that they would offer. We felt good about the change; it was clear that they really did care. My father was there as well, at the opposite end of the hall. Dad was sent home soon after, but for that short period, we had the best of both worlds—the chance to see and be with Logan and my dad at the same time.
Just after Logan arrived at his new facility, I had a chance to speak with the doctor we’d chosen to be his attending physician. Mike was the partner of the man who’d been my physician since I was 9. My mother sat near him at church every Sunday. I knew him, I trusted him, and I admired his abilities as a physician. He let us know that he would be there to help us get through the worst of it. I had no doubt that this was true.
