by David Cry
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.
It was around this time that I fell in love with my wife all over again. We did not have a traditional courtship; there were no dates, and no time to ponder the “what-ifs” about one another. We knew one another, certainly; we’d spent enough time corresponding beforehand. What we did not understand were each other’s habits and mannerisms; we instead compensated with a clear understanding of who the other person was. Falling in love with her all over again was not a result of “getting to know her better;” it was seeing this raw emotion. Understanding that she had a capacity for love unlike any other person I knew. This truly was love in its purest form.
She showed me things that made me grow as a person. She showed me things that broke my heart. No matter what she tried for Logan, nothing ever worked. And yet she still demonstrated patience and understanding. Her heart stayed open to anything that might make his life better. Knowing that she would give to Brennan from that same delicate heart made me joyous.
For some time, this was the way our life was. We spoke every night about Logan. We shared our fears, our concerns, our small victories and utter disappointments. We grew closer and closer. There were still turbulent times, as I engaged in my own form of denial, trying to intellectualize the entire situation. I used reasoning to hide from the truth, a tried and true defense mechanism that allowed me to separate myself from everything. I tried to deal with Logan as a medical issue, using ideation, or created new ideas drawn from my scientific knowledge to justify my actions. But it didn’t work, any more than Jaymee’s efforts did.
Jaymee recognized what I was doing, and after some time she came to me and told me that I needed help. As soon as I heard her say it, I knew that it was true. I went to therapy; I called up a doctor I had seen after my initial diagnosis and made an appointment. I showed up, settled in, and as soon as she asked me what was wrong, I started crying. For 45 minutes, I did not say a word; all I did was cry. She simply sat there and let me have it out; what else could she do? With maybe five minutes left in the session, I explained my reasons for being there.
She smiled. “The next time you feel like you need to let it out, just call me. I am here, David.” And that was it. I felt better and refreshed, but in light of my emotional episode I became convinced that Jaymee needed to cry, as well.
“I can’t.” Her answer was short and direct. I had just asked when the last time was that she’d had a good cry.
“You can’t? Why not?” I was curious; everyone can cry, after all. The better question was, why wasn’t she?
“If I start, I might not stop. I have to be here for you, Logan, and Brennan. If I allow it, I’m afraid that there will be nothing left of me.” I understood her logic, but it didn’t stop me from becoming more concerned.
“Babe, I can go into my office any night you wish, and you can be alone to cry for as long as you want,” I offered. She replied by explaining that it’s better for people cry together, if at all. I finally gave up on the idea of imposing coping methods on her. Jaymee was coping; it was just different from what I was doing.
Watching as your child becomes severely ill is never an easy thing to endure. Jaymee managed it by committing to drawing us all closer, and relying on an inner strength that amazes me still.
The day that Log
an was diagnosed, Jaymee and I discussed everything from divorce to raising Brennan as an only child. Looking back now, I’m grateful for how special the person I chose to spend the rest of my life with truly is. In so many ways, Jaymee made this entire ordeal a little easier. She’s not the type of girl who gets giddy and fusses over things. She is highly straightforward and serious. And when she starts to work, get out of her way; she demands complete control and will stop at nothing to maximize her success. In those early days, when the both of us were more emotional than ever before, it was never overblown. While there was stress, it was never to the point of breaking either of us down. We were then and are now connected through mutually beneficial understandings. My weaknesses are compensated by her strengths. Her inabilities are accounted for by my capabilities. Although at times unconventional, I still believe that we are where we are because of love, trust, respect, and a lot of hard work. My marriage constitutes the hardest work either of us has ever done, and yet we manage to do it every day. It’s a challenge to find balance and maintain control, but while it’s never exactly “easy,” it is also never a burden. When we work, we reap rewards. For me, the love of my wife and the value she adds to my life is enough benefit to make me look forward to working more tomorrow.
Chapter 8
BRENNY
BEING A FATHER has been without a doubt the most significant aspect of my life. Falling in love with Jaymee and working to build a life with her was the result of a conscious decision. I saw what was best for me and I made the choice to love her. But being a dad to Logan and Brennan required no such choice; it was automatic. The day I married Jaymee, it felt as though I was entering into a lifelong partnership with Logan, as well as with her. And from the moment Brennan was born, my heart was filled with a type of love that was previously foreign to me. This is, in my opinion, love in its purest form, and it feels as though it will sustain me for the rest of my life and beyond.
When I got sick just as my life was beginning, it did not allow me to think much about being a father. The unconventional steps we took to conceive, while it didn’t “take away from the magic,” it did put everything into a different perspective. And from the moment Brennan was born, my life changed. All the things I thought I knew about life were rendered moot. All of the hopes I ever had for myself disappeared in an instant. Living, breathing flesh and blood relied on me. It was the greatest gift I have ever received.
This is how I truly feel: Brennan Cry is our miracle. Not only was he conceived in a manner that allowed us to avoid ALD altogether, he has also served as the perfect distraction throughout Logan’s battle with ALD. When he was a baby, I would spend each day playing with him, always making sure to educate and expose him to positive things. We were constantly making the effort to engage him: soothing sighs, tons of hugs and kisses, and all the “I love you’s” he could ever need. The one thing we never did was baby talk to him. Early on, I had told Jaymee I believed baby talk to be a mistake. And now, according to the former head of curriculum at our school system, at ages 3, 4 and 5 Brennan consistently maintained the highest verbal IQ that she has ever experienced in her 40 years of teaching. Speaking to our son, age 6 at time of writing, is often like conversing with an adult. At the end of kindergarten, his teacher sent home a list of 50 sight words that he would need to know by the start of first grade. By the time school ended, he could read all 50 in about a minute. More than that, his reasoning skills are extremely nuanced for his young age; Brennan can conceive of and comprehend things most kids his age cannot.
So, needless to say, there was no hiding what was going on with Logan from his little brother. But attempting to explain to a 2-year-old boy that his sibling, a person whom he had loved unconditionally, right from the start, would no longer be alive, seemed impossible. There was no one point where we sat him down and discussed the situation; most of his understanding was gradual, and occurred in response to questions he asked.
“Dad, what’s wrong with Lolo?” The question came in the middle of the summer of 2010, just a week after Logan had been diagnosed.
“Well sweetie,” I answered cautiously, “Your brother is having some problems. And I hate to say this, but they will get worse.” I didn’t see any point in hiding things from Brennan. “If you are ever frightened by anything you see or hear, please just let Mom and Dad know, and we will do our best to help you.”
Brennan knew that his brother was sick. Even his instinct told him so. We hadn’t said a word to him prior to his asking, and although he lacked the words to describe it, he knew that Logan’s prognosis was not good. But this recognition led to a closeness with Logan that we will forever be grateful for.
As parents, you always hope to see the developmental milestones fall into place. The first step, the first word; those incremental movements forward. With Logan, we had to watch this occur in reverse. It was difficult, especially for Brenny.
But over time, we watched Brennan transform into the big brother, taking Logan’s place. He became highly protective of Logan as nature and nurture took control. It was an amazing process to behold. I will never forget the mornings when Brennan, sensitive and sweet, would climb into bed with his brother, wrap his arms around him and whisper, “Everything will be alright, Logan.”
That’s not to say that this was an easy process. Very shortly after Logan was diagnosed, Brennan started receiving therapy, part of our desire to take as proactive an approach as possible. Brennan would see his therapist once a week (at least for the first several months) and we would often take detours on car rides so that we could discuss whatever Brennan wanted to talk about. Often, he held things very close inside, not wanting to discuss them with us. At other times, he would reveal his concerns to me and Jaymee, letting us know what needed to be worked on.
Brennan also struggled with Logan as things progressed. Brennan has always been something of a perfectionist, and he had to come to terms with the gap between the way he wanted his brother to be, and the way that he actually was.
Brennan actually started “missing” Logan about two and a half years before Logan passed away. Brennan did not really understand the core concepts involved in Logan’s illness; he didn’t understand how it could alter Logan’s perceptions and reactions. The one instance that sticks out in my mind is Christmas 2010, five months after Logan was diagnosed. For Brennan, this was one of the best mornings of his life; for Logan, it was just any other day. Logan wasn’t excited by the presents under the tree, and was disinterested in almost everything about the holiday. Meanwhile, Brennan had woken up at 5:45, tearing through the living room, ready to go. The contrasts between the two that day rattled me. I had already noticed changes in Logan, stark changes; but this put it into painfully sharp perspective. It made me miss him. When I saw Brennan attempt to engage with Logan that Christmas morning, and get little response, it made it all the more sad.
Several months before things became truly serious for Logan, we began discussing Heaven with Brennan. My faith tells me that boys and girls—innocent children—are never denied entry into the Kingdom of Heaven. I have known since the beginning that this would be Logan’s ultimate destination. I didn’t discuss this much with Jaymee; who wants to talk about their loved ones, much less their children, dying? But Brennan was on point with the Heaven talk quickly, and he already had a clear concept of Paradise in mind. He discussed the idea of his brother being at peace, and of Logan being surrounded by people who loved him. Brennan was steadfast in his belief that this is what would be for Logan after he passed.
As things developed, we began doing things with Brennan alone, to make sure that he understood that his place in our family was just as important as Logan’s. I have seen families who place so much importance and energy on their dying child that they missed out on a great deal with their other children. We were careful to guard against this; whether it was a trip to the zoo, or one of John Besh’s restaurants, we did our very best to make Brennan feel loved and appreciated.
/> As he got older, Brennan also became wiser. Eventually we began having frank discussions about death, going over issues that he easily reconciled. At times, I attempted to change the subject; I am a firm believer that if you are 4, you should do the things a 4-year-old does. The best I know, that doesn’t include discussing brain damage or a body breaking down. But we saw ourselves as having little choice; as long as Brennan possessed the capacity to understand things fully, Jaymee and I felt that transparency was the best policy. And over time, it has paid off; today, Brennan is much more open about what’s bothering him. He does have something of a protective mindset, and feels that it is his job to take care of me and Jaymee, but over time, with age and experience, even this will find its place.
At times, the emotional toll of losing a sibling still plays a role in Brennan’s life. One night, just a few days before the start of first grade, I went into his bedroom to listen in as Jaymee read to him, something we’ve done every day of his life. But as soon as he and I made eye contact, his eyes welled up with tears and he said, “I miss my brother.” Before I knew it, all three of us were in tears. We held one another, and eventually began discussing what it felt like, knowing the things we do now. Over time, perhaps, Brennan’s memories of Logan will not be as close to the forefront of his mind as they are today. But he has been affected by his brother’s death; that cannot be denied. He brought Logan’s picture to his first show and tell of first grade. He continues to love him, and hopefully always will.
