A Short Walk Home (12 page)

My policy when working with these families has been simple and straightforward since day one:
deliver
. No matter the time of day or the circumstances at the time, I know that when the phone rings with a parent on the other end with a newly diagnosed child, it’s up to me to deliver. I don’t do what I do for praise or pats on the back; neither do I do it for the way it makes me feel. I do this because it’s what I feel I am called to do. I believe in my heart that we all have a purpose in life. I recognize that I have a lot of wonderful, valuable connections; not only that, I understand how to make things happen. If I chose to, I could ignore my capabilities and resign myself to a boring existence of simply working for a living. Instead, I have chosen to embrace my gifts and do my best every day to assist those who need me.

That being said, my approach to my work prior to having a child with ALD is starkly different from the way I run things now. Today, I have firsthand experience with the thought processes of a person going through this trial. I recognize the fear that motivates them, and I can now advise them as to the road ahead from a place of wisdom and experience. I can predict the arguments they’ll have with their spouse; I can tell them exactly whom and whom not to trust; and finally, I can (and do) provide them with the open line and genuine care that they need, every day. At times, Jaymee worries that I become too involved in my cases. But can we ever care too much? While I know that we can go over the top sometimes, smothering those we wish to care
for, this is not what I do. What I do is let the parents of these children know that someone else is listening; often, that’s all that really matters.

One of the things I am most proud of is that I never tell parents exactly what to do. I am always there with an ear, and will happily point Mom and Dad this or that way. But I never under any circumstance directly determine their course of action. If I did, and the outcome of my advice was bad, that guilt would be on my conscience. I help families understand that they must be prepared to make critical choices quickly, and that these choices will determine certain outcomes.

Dealing with those facing life-threatening illness can be trying at times. Having done this for years, I try to just listen at the start; only once I have a firm grasp on the situation do I help to steer parents in the right direction. Sometimes, this can be simple: a short discussion, followed by a referral to the best doctor for the case. Other times, it can be long, difficult and drawn out. I once received a call regarding an adult case of ALD, similar to what Jaymee’s father had had. He had just been released from prison, and despite his illness affecting his mental state and behavior, the man had been kept in the prison’s general population. Situations such as these, where the patient’s life was difficult even before the diagnoses, are considerably more complex.

The person who contacted me was the man’s nurse; a very nice young lady working at the care facility the man was staying at for an infection he developed while in prison. At first, she was a bit timid when speaking to me. But in time, especially after I established my significant working knowledge of the nuances of ALD, she became more relaxed. She would call once a
week, asking questions like, “Will this grow worse?” and, “Are you sure there is nothing we can do medically?” Of course, there was nothing to be done; for adults with ALD, traditional bone marrow transplant does not work at all. If the illness presents as an adult, it is a hopeless situation.

Over time, I helped this young woman to see that investing too much time, energy, or care would be detrimental to her. The overall impression I received from her was that she had become too personally invested. After the man was released and went home to live with his mother, I would still get an occasional call. She could not turn off that mechanism in her brain that allowed her to put distance between herself and her cases, until the day arrived that she knew she could do no more. I still remember her final phone call, when she called to tell me that she had finally arrived at a place of acceptance; acceptance and, I hope, peace.

The day we moved into our new home in Tulsa, after we left New Orleans for fear of future storms, I received a call from a man whose son had been diagnosed with ALD the day before. He was speaking at a rapid clip, and I was having trouble understanding him. It wasn’t until the boy’s mother (the man’s estranged wife) took the phone that I was able to get the facts of the case. She was very direct, and she wanted answers. Leaving Jaymee to unload the boxes (she understood) I started explaining the situation to this woman, answering her questions.

“What’s going to happen to my son?” That was the first question she asked. Her son, whose name was A.J., had already been determined to be ineligible for transplant. Now, his mother needed to know what would happen next. For the next 40 minutes, I went through the painstaking process of describing for her, in great detail, the myriad circumstances and emotions she was
about to experience. I explained to her the losses her child was soon to endure. I was, as I always am, highly transparent; I held nothing back.

Roughly eight months after I spoke with this mother, whose name was Jamie, I received a phone call from a woman who identified herself as Beverly, the executive administrator of board services for the Harvard Alumni Association. When I answered initially, I thought she must have had the wrong number. But the woman explained that she was Jamie’s aunt, and that she and a group of Harvard employees had decided to come together and raise money for her and her son. The problem, as she explained it, was that Jamie had refused the offer of support, insisting instead that this group help
me
. I was astounded. This was a gesture entirely foreign to me; a person was willing to sacrifice her needs for mine? I have never felt as humbled as I did that day.

A part of the plan was to hold a fundraiser in the Athletic Hall of History on campus. Jaymee, Logan, and I would fly up, while my mother and father joined us from New Orleans. A party would be held, and there would be money raised to benefit my foundation.

The afternoon we arrived in Boston, I recall feeling extremely awkward. I felt that there was no way I could fully express my thanks to these people, especially Jamie, who were putting themselves out for me. After checking into our hotel in Cambridge, we all made our way down to a restaurant to meet Jamie and her family. Without a word, I went to Jamie and hugged her tightly. As we embraced, she said, “Everything you said would happen did. Thank you for making sure that I knew.” I could not utter a word. Our entire time there, all I could do was be thankful. In time, Bev and Barbara, the two women behind the Harvard group, became members of my board of directors, while A.J.’s
Wish became a sub-group of the Foundation. To this day, I am proud to call each person associated with the effort a friend.

One of the other members of my board, Alicia D’Angelo Smith, was also in attendance at the event with her husband, Tim, and their kids, Emily and Christian. I had first been introduced to Alicia when she called me up one afternoon, about two years after I started the foundation. She was seeking advice about her brother-in-law Jeff, who had been diagnosed with my condition, AMN. Alicia and I clicked immediately. A Fordham Law graduate, she came across as extremely gifted intellectually, and was passionate about gaining as much information as possible, so as to aid her brother-in-law as best she could. Over time, we developed a genuine friendship that continues today. My friendship with Alicia grew into an abiding respect that will be forever maintained.

I learned that we had eerily similar upbringings, and that we both shared the desire to see something done for AMN as well as ALD. The trouble has always been that, in dealing with a fatal genetic disorder like ALD, the non-fatal form of the condition is often overlooked, as it seems less significant in comparison. It was Alicia who helped me to see my role in the foundation more clearly. Always there with words of wisdom and advice, she has helped me to grow as a person. My experience with Alicia has taught me that we can never know the true intent of the people we deal with, unless we allow them in. Being from the southern United States, hospitality is a social norm, and my actions echo the way I was raised. This alone has given me a better opportunity to connect with others more readily. Overall, my friendship with Alicia represents some of the best critical thinking I have ever done. I saw an intelligent woman with a need, a woman who was not satisfied to simply sit back and observe. The relationship that has developed since is simply a reflection of these truths.

We are all essentially connected. I don’t mean to make that sound like a cosmic statement; rather, I believe that we all maintain connections. This has never been more evident to me than through my work with the Foundation, where I routinely find friends of friends in even the most far-away places. By making connections, the process of helping others becomes simpler. I believe that when we recognize this, we make life easier for people. My belief is that God wants the best for each of us. Some are asked to traverse roads that are narrower than others. Often, people deal with situations and circumstances that others cannot conceive of. But as long as we remain mindful that we will all be forced to deal with grief someday, that if we live long enough, we will lose someone we love, we can recognize the similarities between our individual experiences. Only when we recognize this and acknowledge it can we truly be free. Facing reality is not a bad thing. It’s something that we will all eventually do, whether we want to or not.

L
OGAN
’
S CONDITION CONTINUED
to worsen, while Jaymee, Brennan, and I did our best to keep everything together. That is, until one morning in late March 2012, when Logan was taken to the hospital by Jaymee for persistent irregularity. It had been 10 days since he last used the bathroom, and I wanted to see about providing a solution to make him void properly.

I will remember that morning for the rest of my life. Logan was dressed and ready to leave, standing just off to one side of the kitchen. I stood up from my scooter, put my arms around him, and gave him a deep hug. He put his forehead on mine and we kissed. I said, “I love you, buddy.” His response was quick: “I love you too, Dad.”

That was the last time Logan and I shared a meaningful communication.

Once in the hospital, Logan’s initial situation was easily remedied. Everything was going fine, until I received a call from Jaymee.

“David? The doctor just told me that he believes putting in a feeding tube is a good idea.” Jaymee was speaking like a nurse.

“I know that you have some reservations about feeding tubes,” I began, not sure of how to react. “Shouldn’t we have a discussion
about this?” Jaymee had already told me that she never wanted a situation like this to happen to Logan. Her determination that Logan would
never
have a feeding tube was one of the first things she said after he was diagnosed.

“We need to understand something,” I continued. “This is very much a situational decision. If Logan can see, hear, and speak, but cannot swallow effectively enough for his food to go down, then we cannot deny him a feeding tube.” Jaymee agreed with me immediately.

A bit later that day, Jaymee called to tell me that the tube had been successfully inserted. Apparently, there had been a misunderstanding between Jaymee and the doctor, such that he took Jaymee’s noncommittal answer for the okay. To be completely honest, the remainder of my day was shot. Feelings of uncertainty plagued me. Should Logan have a feeding tube or not? Although the answer should have seemed obvious, when dealing with something as chronic as what Logan had, the answer was not always an easy one.

On top of that, decisiveness is something that left our family on July 17, 2010, the day Logan was diagnosed. I had always been someone who made choices with ease, but now there was always something extra to consider, too many variables to count. But Jaymee and I had already decided that, should the need arise, and Logan could still see, speak, and hear, then there would be no discussion—we would put a feeding tube in and not look back. But the day it was installed, his vision was almost gone. He could hear, but only after you repeated yourself loudly a couple of times. Logan could speak, but his speech patterns were becoming increasingly truncated, and lacked any real consistency. All of these were effects of the organic brain disease that had robbed our child of so much. And it was still expanding. Being unsure of
what to do as the coming events unfolded was normal. A friend and fellow ALD dad had warned me about this several months before. He and his wife had chosen not to go the feeding tube, life support route. By the time his son had needed a feeding tube, he was all but gone mentally. The choice for them was simple and clear. Not so for us, though we both knew that there was no way we could watch our child starve to death. God bless anyone who has had to.