A Short Walk Home (10 page)

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 Logan 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.

B
EING 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.