A Short Walk Home (9 page)

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?

W
HEN
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 little 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.

The thought of ALD did not occur to Jaymee again until age 20, when Jaymee became pregnant with Logan. She became obsessed considering the possibility, so much so that she decided to have an amniocentesis performed as soon as possible. At four months along, she was confirmed to be carrying an ALD-positive fetus. Her son would be predisposed to ALD. Thoughts raced through her mind; by this point, she had already bonded with the life living inside of her. She knew that she would carry him to term, but remained mindful that at a certain point in his life, she would need to become more aware of ALD.

But from the second he was born, Jaymee loved Logan. After a couple of years, his father was out of the picture (as far as them living together as a family goes), forcing her to take responsibility for caring for him. By all accounts, it was difficult; but the life that Jaymee had led up to that point had made her strong. And being mindful of all of the things that she had endured, she made
a conscious choice that she would not discipline Logan the way her father had her. Neither would she ignore him as her mother had done. She would love him, and not worry about the small, trivial things that seem to plague so many people. She was—and is—a good mother; loving, caring, always there for Logan. She was proud of him, and I hope proud of herself. Single parenthood can’t be easy.

Jaymee set out to live as normal a life as possible with Logan, and she did an exceptional job. As Logan grew up, he attended school and played sports, like most other kids his age. The first time I ever saw him, I met a well-adjusted young man. That having been said, when Logan and Jaymee moved to Louisiana, he did tend to give me grief. I guess that, in his mind, I had stolen his mother. He wasn’t getting as much attention as he was used to, and even though I made efforts to reach out to him, there was a distance between us during those first few months. He called me “Dad,” but I often heard reluctance in his voice. It didn’t hurt my feelings; he was, after all, still a child. He was very mature for his age, but deep down he was a 5-year-old boy, and likely confused by all of the change he was experiencing.

Over time, things did improve. I saw in Logan a heightened sensitivity that I could relate to. We both altered certain things in our routines as we adjusted to one another, and I believe that he did finally accept me as a man who loved him. Jaymee struggled through some of this as well, but was pleased when we arrived at a happy medium. After all, Jaymee’s greatest desire was to have a happy family.

Our coming together finally signified Jaymee’s first real steps toward realizing her dreams. By entering my world, she was
introduced to all of the trustworthy, hard-working people I’d grown up around. Jaymee was immediately surrounded by caring mothers and fathers. She began to associate with people—a
lot
of people—who were genuinely concerned for her well-being. Jaymee took to all of this like a duck to water, swimming forward from day one.

While our life together was far from perfect (we endured Hurricane Katrina just 62 days after saying, “I do”) we managed to first survive, and then thrive together. It is amazing what love can do.

We then moved to Tulsa, as Jaymee was a bit intimidated by the thought of another storm. Life in Tulsa wasn’t always easy for me. After all, New Orleans is where I’d become the person I am. The influences there are more powerful than one might imagine; I didn’t just
live
there, my entire identity was wrapped up in that community. And with no offense intended toward Tulsa, the network of support available to us in Louisiana was vast. Little did we know how much we would need it.

“Of course the patient has ALD. Look at the damage in the frontal lobe. This is an easy diagnosis; can’t you see it?” The neurologist at the Children’s Hospital in New Orleans was speaking to Jaymee as though Jaymee
knew
what she was looking at. She had mistaken Jaymee for an attending physician, as opposed to the mother of the patient in question.

Jaymee’s incredulous response sent the doctor into a tailspin. The doctor had had no intention of revealing Logan’s diagnosis in such a callous manner; she simply made a mistake. Of course, this sent Jaymee into her own tailspin of sorts, one that took some time to heal from. It’s not every day that you receive news that your 12-year-old son has a life-threatening illness.

Once we knew that Logan was sick, it was still up to Jaymee to make sure her family carried on. She made me see clearly the need to focus on Logan’s quality of life; made me understand that loving him was all that mattered. And when his behaviors gradually began to change, she was there with words of encouragement, always trying to get him rededicated and interested in life around him again. While this initially frustrated me, I slowly began to see the need for her daily ritual. It was not for him, not really; it was for
her
. She needed to know that she had made these efforts, in order to move forward.