A Short Walk Home (8 page)

“Oh? What do we have to talk about?” I responded. I was content; as far as I was concerned, everything was going perfectly. There was no real need for a conversation, was there?

“We need to decide which daycare center Brennan is going to go to.” She seemed ready to roll up her sleeves and make a choice, right then and there.

“Well Jaymee, I’ve been giving that some thought.” The look on her face immediately shifted to one of surprise. “I’ve been thinking that Brennan should stay with me, and
not
go to daycare.” I kept my voice firm.

“What about your work? Won’t that make it difficult for you to accomplish what you need to get done?”

“Honey, how many fathers get the chance to really raise their children? The way I see it, despite women being the traditional primary in raising children, I don’t think that a touch of unconventionality will do any harm.” At the look on her face, I softened my tone somewhat. “I love Brennan in a way that I just cannot describe. Although I have been saying things my whole life, for the first time, I am without words. I
want
to do this. I want our son to know just how much his father loves him.”

I could tell that she thought I was crazy, but I soldiered on. “Lots of kids go to daycare, and I have no problem with it. For many of the parents who work two jobs like us, daycare is a necessity. But I also realize that by placing our son’s upbringing in the hands of another person, one
not
in his immediate family, we are potentially creating more work for ourselves further down the line.” I was on a roll now. There was no stopping me.

“And just what type of work are you referring to, oh great one?” Jaymee asked playfully. I knew she was teasing me, but I wasn’t about to let that distract me.

“Well, if he is essentially being raised by another person, it would seem likely that
their
values are sure to be imparted. Correct?” It was a serious question.

“I suppose that’s true,” Jaymee admitted, becoming a bit more serious herself.

“What if those values aren’t consistent with ours? Do we re-teach him what we want him to know? Or do we just content ourselves with what some stranger is imparting?”

And that was all it took. In less than two minutes, Jaymee had completely come around to my way of thinking. Now, I have no particular issue with daycare programs, early pre-schools or similar set-ups. In today’s world, having help in raising a child is essential; not every kid has a grandmother willing or able to take care of their new grandchild. The way I see it, whatever you have to do, do it. I made the choice that I did strictly because I could. I wanted Brennan at home, with me. And looking back now, it was the best possible decision—for him
and
for me.

Five months after my life as a stay-at-home dad had begun, the phone rang, with Marty on the other end.

“I wanted to call to let you know: I am
jealous!
” This coming from a man who lived the life of a successful attorney; he was jealous of me? In all the years I’d known him, Martin had never once let on that he was jealous of anyone, let alone me.

“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.

P
ARENTS 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 stress 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.