by David Cry
“And why exactly are you jealous, Martin?” I asked, playing along.
“David, I have four children—four children whom I love with my whole heart, and who have each brought abundant joy into our lives. But to have the opportunity that you do now—to literally spend each day caring for your baby—well, let’s just say I’m envious. I truly believe that the relationship you’re forging with him will have an effect on him throughout the course of his life, one that simply cannot be measured. So I’m jealous, David; jealous, and very proud of you.” Beautiful words from a wonderful person.
I believe that the words he shared that day are true. Today, I look at Brennan and see a well-rounded, caring, and peaceful boy. He loves his mother and father, and brother, adores his grandmother and uncles, misses his cousins in Hawaii, and makes sure that each and every one of us knows it, each and every day. I see myself in him; after I got sick, I made it a point to let everyone in my life know exactly where they stood with me, at all times. Having come to grips with my mortality at an early age, even before I knew what was wrong with me medically, I was afforded a freedom I had never felt before.
Today, I recognize that Brennan works in a similar way. And what makes that truly beautiful is that Brennan did not have to go through anything trying or tragic to reach that point. It’s just the way he is, and it seems to work very well.
Chapter 6
UNAVOIDABLE
PARENTS WHO HAVE children challenged by terminal illness or disability—from Down’s syndrome to autism—often struggle to find the proper balance for their kids. It can be difficult to find ways for their family life to merge together in a manner that makes it whole, to ensure that the child feels he or she is part of the family. For Jaymee and me, this was a challenge that we were both aware of, but completely willing to face.
Our initial steps included a trip to Logan’s school, on the heels of a phone call I made to Logan’s vice principal, Terrie Mathison. I explained the issues Logan was facing, and did my best to make her understand that we still wanted Logan to have as active a life as possible at school. We acknowledged that there was no hope of achievement, and asked that there be an understanding when it came to disciplining Logan. After all, how exactly does one discipline a child with an organic brain disease? The only answer is love. You love the child, whether they’re ranting and raving or stealing the car parked in the driveway. Ms. Terrie assured me that they were serious in their approach to every child at school; we need not fear—Logan would be in capable hands.
I was impressed from our very first meeting, when we met with Ms. Terrie to discuss Logan and formulate a plan of action. In addition to Ms. Terrie, the meeting was also attended by his school counselor, three representatives of our school’s special education program, three of his teachers, and a counselor specifically assigned to monitor Logan’s progress. In addition to overseeing Logan’s life at school, he would also be updating us regularly as to any changes he observed.
We decided not to place Logan in a special education curriculum. To a large extent, Logan was still aware of his surroundings. He listened and understood what he was told, and could follow through on simple tasks. We took this to mean that isolating him and placing him in a special class would make him too self-aware; we still had not told him about his diagnosis.
Some might say that we did not act in Logan’s best interests by withholding the truth of his diagnosis. I know that there are many children who have gone through challenges like Logan’s; I’ve walked the halls at St. Jude’s Children’s Research Hospital in Memphis, and seen children suffering in ways that should not be allowed. These children are told about their illnesses because there is hope, in terms of their survival. With Logan’s prognosis as grim as it was, telling him would only add to the damage already being done. And I was not the only one who felt that way.
“You can’t do it.” The voice of a friend, and a Harvard educated psychiatrist on top of it, hit me hard.
“I can’t do it? Why?” I had asked him for advice on how to go about telling Logan about his disorder.
“David. What is the end result of Logan’s illness going to be?” There was a long pause. We both knew the answer. “His knowing can only bring about grief for him. It can only make him depressed. The answer is no. You will not tell him.”
My friend was right. There was nothing at all to gain. I had felt this way all along, but both Jaymee and I felt compelled to make as informed a decision as possible, in regards to our son.
Jaymee and I began noticing small shifts in Logan’s behavior. He would ask a question, and five minutes later ask the same thing again. This happened so regularly that it began to be a source of real stress in our lives. He did not mean to do this, and I’m not saying that we were angry. On the contrary, we were saddened by our own helplessness.
Discipline was gone in our home. After the day of his diagnosis, it simply disappeared. How can you even attempt to correct a child who truly knows no better, and who will likely repeat the same behavior in a matter of minutes? It was impossible.
We soon learned, through speaking with physicians far and wide, that Logan was showing signs of early-onset dementia. His cognitive abilities were being affected to the point of disrupting his memory, attention, the language centers of his brain, and his ability to resolve problems. This was the point where, at least in our eyes, Logan became helpless. From then on, Logan required assistance at every turn. He was no longer aware of simple things like the day of the week. It showed both me and Jaymee that he could no longer be unattended for more than a few seconds.
Brennan’s overall response to his brother’s illness was as expected; he only partially suspected anything was wrong. Brennan had just turned 2 when Logan was diagnosed (surprisingly, the “terrible twos” were not terrible at all). He had started to notice the changes in his brother, but he never asked for an explanation. His way of coping with the tension he perceived was by showering Logan with love and attention whenever possible.
This continued until one fateful afternoon in the backyard, when the boys were playing together with a football. Brennan was having a blast, picking up the ball and running with it before diving on the ground, pretending to be tackled. Everything was fine, when suddenly Logan took off at a dead sprint. Logan loved to run with the ball, and he did it all the time when he and I played catch. The only problem was that this time, his little brother was standing just 20 yards ahead of him.
The entire incident seemed to take place in slow motion. Logan’s knee came up and struck Brennan on the side of the head. As the baby fell backward, Logan’s other leg somehow kicked him backward, sending him spinning before landing on the ground, hard. Jaymee panicked and scooped Brennan up, while I went to Logan’s side. He was smiling, just like he had scored the winning touchdown. He had no idea of what had happened, and there was no sense in telling him. Within minutes, Brennan was fine, physically. But from then on, he would not go anywhere near his big brother.
Logan, meanwhile, was becoming more and more oblivious to his little brother. He wasn’t bothered when Brennan took his things, and he didn’t complain when Brennan bothered him. In many ways this was a blessing; it allowed Brennan to see unconditional love and acceptance from his brother.
My life together with Jaymee remained the same, save for one significant change: We no longer argued about the petty things. Previously, there had been a tendency for us to butt heads over the little things in life; I am and have always been a bit anal about certain things. Whereas in Jaymee’s mind, there was always time to deal with things later. In other words, we are complete opposites in regards to time management and scheduling, and likely always will be. But these sorts of issues lost their importance in view of the larger perspective of Logan’s illness. Suddenly I stopped complaining about the coffee creamer being left in the same place on the counter every morning. I stopped griping about shoes scattered here and there, and began putting things away without comment. After all, why str
ess ourselves out more?
But Jaymee herself was starting to go through some changes of her own, some of which worried me. Foremost among these was the belief that today would be “different,” that Logan would suddenly become interested in things that he hadn’t been the day before. Every afternoon when he got home, Jaymee spent a couple of minutes attempting to engage him in different activities, hoping to see a spark. But nothing ever worked.
For many, the day a fatal diagnosis is delivered begins a process that can often be extremely disruptive to life. Referred to as the stages of grief, it is the mind’s reaction to the threatening and largely unknown situation it finds itself in. Not knowing if this or that treatment will work, or if there is another option available, the mind races for a place of protection while it attempts to process things. Denial, anger, bargaining, depression, and acceptance are all aspects of this process; of these, I find denial to be the easiest. People already have a tendency to disregard facts and suspend disbelief as a means of protection. I’ve seen ALD families continue denial years into the grieving process. Parents become so overwhelmed at the loss of one child that they aren’t capable of acknowledging that their other children need preventative work as well. The point is, it can be a sad cycle that feeds off itself, and Jaymee was not exempt. As long as she kept on hoping that Logan would be different from one day to the next, she wasn’t letting herself move on. As much as I hoped to shield Jaymee from the truth—that if Logan did change from one day to the next, it would likely be for the worse—I couldn’t bring myself to do it. I can’t do it in my personal life, and I can’t do it in my professional life. I have been asked by family members of ALD families in denial, begging me to reach out and shake them into reality, but that’s not what I do. I cannot see myself soliciting anyone in that regard.
Understanding where you are emotionally each day benefits you, as well as all other people in your life. But being in touch with who and where we are requires effort. Asking yourself probing questions from time to time can be difficult, even painful; but it cannot be wrong. Being so busy that you can’t see anything other than what’s in front of you doesn’t allow for the time needed to be where we want to be. Investing in yourself is never a mistake.
So, yes: I was concerned to see Jaymee trying to reach out to Logan every day. She meant well, this I knew, but by putting unrealistic expectations on herself and Logan, she was attempting to create hope that did not exist and was setting herself up for disappointment. I understand that she had no choice; she felt she had to do something. To simply stand by and watch as your child loses his or her abilities would be unconscionable. Jaymee was a caring and concerned mother, and it wasn’t in her to be anything less. But in this particular situation, there could be no response from Logan’s side. No response, meaning wasted effort and the destruction of the hope Jaymee had invested. But through it all, there was little I could do or say; how could I tell my wife not to help our child?
Chapter 7
IN JAYMEE’S EYES
WHEN I SAT down to write this book, I had always intended to have a chapter written by my beautiful wife, Jaymee. The hope was that she could write something from her perspective, to give her thoughts on what we went through.
When I broached the subject with her, I tried to do so as sweetly as possible. “Babe, would you consider writing a chapter?”
“Sure,” she said. “Give me a couple of hours and I’ll email you something.” She sounded interested enough, and I was pleased, especially in light of the fact that it took me more than just a couple hours to write chapters.
A few hours later, the promised email arrived. It was just five paragraphs, describing her past and her current feelings about ALD. It was clear that, while she was willing to put her feelings down into words, the idea of working over it and polishing one’s personal thoughts for public consumption wasn’t one that appealed to her.
I can’t say that I blame her. Maternal instinct is far more powerful than any of us will ever imagine. Not many will understand what it means to have your child not recognize you anymore. His vision and hearing start to go and he believes that every person he meets is his mother. I hope that most of those reading this have not experienced tragedy of this magnitude. For those who have, I wish you all of the peace and joy that life can offer going forward. Seek joy; while it never compensates for the pain and loss, it sure as hell beats experiencing the bad stuff.
All the same, I decided to write something about Jaymee, after discussing with her several of the issues that have plagued us throughout this experience. These are issues that, if they could be understood by others, might actually change their point of view about parenting their own kids. Don’t get me wrong; this is not a self-help book. It is a direct extension of my love for my family, nothing more, nothing less. I would not be who I am today if not for them. The secret to life truly is just love—everything else will take care of itself.
Jaymee grew up poor, and grew up tough as a result. Her father and his lifestyle had a profound influence on Jaymee; during their entire life together, he never had a job. Instead, he had decided that being a missionary for the Jehovah’s Witnesses was his best option. It allowed him to interact with people, proselytizing and preaching what he deemed to be the truth. As far as earning money and providing stability went, he simply was not interested in it. Unbeknownst to him or anyone else, his ALD was already affecting his mind, and while there was nothing he could do about it, it still dramatically affected his ability to be a caregiver for Jaymee and her sister. Their lives would have been so much different had a diagnosis only been made.
What’s more, her father’s actions had brought them into a world of fairly conservative religious sentiment. They did not celebrate birthdays or Christmas, and they were forbidden from saying the Pledge of Allegiance. The thinking was that it constituted making an oath to something other than their God, which was forbidden. Jaymee and her sister were often forced to accompany their father whenever he went out, spreading the word. They would knock on doors and give out pamphlets, letting people know about a religion they themselves did not fully understand.
One Saturday, while they were out doing this missionary work, they rang the doorbell of a girl Jaymee knew from school. In that moment, Jaymee became incredibly self-conscious of what her father was doing. For the first time, she realized that her father’s opinion of the truth was not one she shared. She was only 9.
Without her father knowing, Jaymee began leading a double life. From that day forward, she recited the pledge at school. While this was against her father’s beliefs, Jaymee no longer cared. In her mind, she needed to do what she felt was right, no matter how difficult it was. Even at that young age, my wife had come to realize that her moral compass did not point in the same direction as her father’s. While she still respected him greatly, and went to many lengths to spare him her true feelings, she had to live her own life, according to her own values. All the same, she knew that this would have disappointed her dad, which is not something she ever wanted.
As Jaymee got older, her life became even more complicated. When she was 16, she and her father had a falling out and it was decided that Jaymee would go to live with her mother. Unfortunately, her father didn’t take the two minutes needed to call Jaymee’s mother to sound her out; if he had, he’d have known her current state, financially, emotionally, and mentally. According to Jaymee, her mom was a self-serving person who cared little about others, least of all her two daughters. Moving in with her mom meant being introduced to drugs and a ridiculous lifestyle that included food rarely being in the pantry or refrigerator. In lieu of food, Jaymee’s mother often offered her drugs, which still baffles me. It’s as though she were saying, “Here, honey: Ruin your life just as I have mine.”
While a senior in high school, Jaymee started working so as to afford rent. Once out on her own, she continued to attend school and did her best; she had no other choice. She even stepped up and offered shelter to her li
ttle sister, so as to eliminate their mother’s influence in their lives. That had to take guts, not to mention a strength and determination that is frankly foreign to me. Deep down inside, I will always be a suburban kid. The thought of a drug-addicted parent is so alien to my own sheltered, tucked-away experience that I can’t begin to appreciate my wife’s struggle. I never dreamed I would marry a woman who has been through so much; she really is the most amazing human being I’ve ever met.
ALD entered Jaymee’s life when she was only a teenager. She had been forewarned about the illness by her Aunt Pat:
‘Jaymee, your dad has an illness called ALD; it’s the same thing that your uncle and my son had. It’s fatal, genetic, and it runs through our family. And if you have a son, there’s a 50/50 chance that he could have it.’ Her aunt only wanted to protect her; she had helped to look after Jaymee for years and felt a certain responsibility. Jaymee took this in, but offered little in way of a response. She was only 18 years old at the time; none of what she had heard really resonated or made sense.
Jaymee and Pat had an interesting relationship. Pat always made sure that she knew where Jaymee and her sister were, and how they were being kept. Whether it was Hawaii or Northern California, Pat made a point of keeping track of the girls, even sending money to make sure that the girls were well taken care of. At one point, when Jaymee was 16, Pat began to make attempts to adopt Jaymee and her sister. Rather well off, Pat would not only be able to afford them a better life, but could give them the care and attention they were desperately lacking. It wasn’t until Pat’s mother got wind of what she was considering that this plan came to an end.
“If you go through with this, I will never speak to you again!” she told Pat in no uncertain terms. Jaymee’s grandmother was famous for her exaggerations and histrionics, but Pat understood that she was serious. She discontinued her attempts and resigned herself to letting nature take its course. I believe that, in some small way, she regrets never having followed through. My wife’s life would have been entirely different, I’m certain. But then we would probably have never met.
