by David Cry
But losing a sibling changes a child; there’s no doubt about that. Brennan will always view the world differently as a result of his experience. While he will hopefully not grow into a pessimist, he will always be more aware, more cognizant of reality. I trust that he will become as kind and courteous an adult as he is a child. Often when he speaks about things like college or careers, he talks as though they’ll happen next week. As a parent to both Logan and Brennan I feel I have learned more from them than they ever will from me. I feel enriched as a parent. Even through the bad times, love has prevailed.
The reality, at least for me, is that it doesn’t matter one bit how intelligent Brennan is, or how well he can apply that to his emotions. That’s not the way things work. My primary hope and prayer for Brennan as it relates to all of this is for him to be allowed the time to let his heart heal. To remember the good he found in his brother. To know that he is now in Heaven, watching over him every day. I do believe in angels, and I believe that they bring things to God’s attention; that some of what occurs in life is a result of other spiritual bodies intervening on our behalf. I maintain that what I believe constitutes a firm faith. We will see Brennan through—and so will God.
The hardest part of this entire experience has been monitoring our little one to ensure that he remains content and carefree, as much as possible. There are times when I worry Brennan keeps things too close to the chest, saying things in order to spare me and Jaymee further anxiety. He seems confident that, as long as he appears to keep things together, everything will be all right; he doesn’t feel the need to own up to his own fears or misgivings. As an adult, I know better; the things that are seared into our brains don’t go away; and someday, Brennan will have to deal with these thoughts, these feelings. And while he knows that he has our love and caring without restriction, when the day comes and the hurt comes out, I sincerely hope that he’s safe in our loving arms.
I can already tell that Brennan will be someone in life; I have a very clear sense of this. It’s the reason why I do my best each day to ensure that he stays gentle with those who need it, befriending everyone without excluding anyone. I want to help ensure that his life is a reflection of what is in his heart—goodness and warmth. Brennan Cry can and will make the world a better place. With the love of two parents who care for him so, the world is wide open for him.
Brennan Cry may be the most loved child alive. I honestly believe that the tragedy we went through pushed us to love him more. I want him to grow up understanding how powerful an emotion love can be; as a father, I see this as one of my most significant responsibilities.
None of us are perfect parents, definitely not me or Jaymee. But with the child’s best interest in mind, none of us need to be. We take what we have been given in life, and attempt to chart a path through the bad things in life, aiming for the good. That’s part of going through something this difficult; you realize that good things still happen. You hear or see things that make you smile, make you laugh; this is normal. It’s life. I just want to take it all, good and bad, and carve out a good life. And I hope that this is a lesson that Brennan takes with him, out into his own life.
Chapter 9
SUPPORT
MY MOTHER AND father are amazing people. They provided a great deal of support just after Logan was diagnosed. They really stepped it up; they’ve always seen him as their own grandchild, and so anything we needed was made available. Dad grew up poor in central Texas, while my mother was the daughter of an alcoholic in Washington, D.C. Both were born into difficult circumstances, but both used their problems in order to better visualize the lives they wished to lead. During college, my mother got married to (and pregnant by) a nuclear physicist, one who decided that walking out was a good idea one day. I didn’t fully understand that my “brother” was only my half-brother until I was 13; my dad adopted him just after he married my mother. His natural father didn’t reach out to make contact with him until the year after my brother graduated from Louisiana State University. I remember that, when my mom told me my brother was coming back to see his “father,” I didn’t understand what she was talking about. He was my brother; half or full didn’t occur to me.
My brothers were all very supportive during Logan’s struggle. My older brother actually quit his job during the summer of 2011 so that he and Logan could hang out together every day. At this point, Logan had begun to develop some problems, but nothing too insurmountable. Still, it was good that he had my brother to entertain him, to take him places and share experiences. Jaymee enjoyed seeing this, and it gave me enough of a break to get a few things accomplished each day.
As things continued to move forward with Logan, each of us found comfort as best we could, in the places we felt most comfortable. For Brennan, who loves school, dropping him off every day was easy. Brennan loves to interact with other people, and loves to learn; we were just glad that he was safe, and not at home considering the worst. Jaymee and I spent more quality time together than we ever had, trying new restaurants, visiting galleries and museums, as we tried to create memories without the shadow of loss hanging over our heads. Of course, no matter what we did, that shadow remained; still, we did it. We had to. Being mired in desperation with nothing else to hold onto was simply not an option.
When it came to those people who truly stepped up and supported us in our time of need, let’s just say that both Jaymee and I learned a great deal about who our friends were. For me, it was easy; I circled the wagons, pulling four of my closest friends closer. These were men with whom I could share everything Logan-related, whenever I needed someone to talk to. All of them (in their own way) checked up on us regularly. One such buddy reached out to us twice a week, every week, for the seven months prior to Logan’s passing away. Every week I would answer the phone to hear the same questions. It became habitual; receiving support from old friends, which was never expected, but truly appreciated.
Jaymee, on the other hand, struggled a bit in the area of support. She had her closest friend to rely on, and she became much closer with my mother, but her primary source of support was me. At times, this was a heavy load to bear. Whenever I tried to offer her comfort, I was all too aware of Jaymee’s past experiences with ALD. Having cared for her father until the end of his life, and watching other family members succumb to the same illness, it made whatever I said to her seem so small by comparison. As hard as I tried, I could never truly comprehend the loss she had experienced. But still I tried each and every day to make her feel special. Sometimes it worked; other days, not so much. But in the end, it fostered in us a closeness I had never imagined sharing with anyone. She is my girl, and always will be.
And now, having now gone through it myself, I can relate to the magnitude of her pain, as well as the frequency with which it occurred. Twelve days after Logan died, my father passed away, after just over a year’s battle with a terrible form of cancer, multiple myeloma. Dad’s loss, coming right on the heels of losing Logan, was made even more devastating. It was a trying time. The oddest thing is, although I miss my dad every day, and wish he could be here to be a grandfather to Brennan, his loss was one of the more adult experiences of my life. While I did cry when I learned he was gone, I spent more time with a smile on my face than with tears in my eyes. I was remembering what it meant to be his son; remembering the joy I was allowed. I recalled the rites of passage I had experienced through his wisdom and guidance. It tempered my grief to the extent that I can only smile when I think of my father now.
Memories are there for a reason. I believe that God gave us memories so that we can always cherish the good in our lives, while giving us a reference point for the bad.
For all the other people in our lives who were denied access into the “inner sanctum” during this experience, I hope that each of you knows I appreciate you, and all the care you showed us. When you deal with anything as traumatic as caring for a sick child, things change internally that most people cannot understand. I spent a lo
ng time beating myself up after Logan got sick. To my mind, how could the head of an organization like mine not be able to help his son? I couldn’t make sense of it; I couldn’t process it. I struggled; I wept; I wept some more.
I hope that anyone reading this knows to make themselves readily available to anyone going through what Jaymee, Brennan, and I did. I would hope that, at least for a moment, each of you would willingly put your own needs aside to ensure that your friend or family member has everything they need. And beyond that, if anyone you attempt to help rebuffs you, please do not take it personally. Unless you have been through a near identical situation, you will likely not be able to completely comprehend what that person is experiencing. As Jaymee has asked me to do a hundred times or more, try putting yourself in the other person’s shoes, if only for a moment. In doing so, you may come to understand why it’s so difficult for them to accept assistance.
And even then, it’s unlikely that you can ever truly understand another’s pain. “I understand exactly what you are dealing with;” we heard that more than once. But even if you have lost your own child, you still don’t fully understand what the other person has gone through. We are all different; our motivations, feelings, and ability to process grief are ours alone. There really are no exceptions.
Instead, just offer your full support, and go from there. True and meaningful love is always returned; just don’t be surprised if it doesn’t happen immediately. Consider this, before moving on: Imagine that it were your own child who became ill. You begin to observe stark changes in their temperament, personality, physical ability, and capacity to communicate. What’s more, you know that tomorrow is only going to be worse. You understand that there will be an end, but that when that time comes, this child—this direct extension of you—will no longer exist. They will be gone forever. If you can readily conceive of this, then know that that pit of despair, the lowest point of a person’s life, is where Jaymee and I resided. Understanding others is an imperative in the development of relationships. Jaymee’s directive of “Put yourself in my shoes” was hard for me to understand at first. Today, I understand it better than I could have ever dreamed.
Chapter 10
SERVANT
FOR NEARLY 15 years, I have served families far and wide. I have taken calls seven days a week, 365 days a year. I recall that during a family vacation in 2007 Jaymee begged me not to forward my calls to my cell phone. She knew that if I did, I would spend half of each day immersed in the problems of others. Looking back now; I appreciate the fact that she asked, even more so because I acquiesced. She wanted me to be free, a desire I appreciate even more now.
The morning after Logan was diagnosed I received a call from the mother of a boy who had been diagnosed with ALD within hours of Logan. While most people would have begged off and forwarded her elsewhere, I took the call. I had to; in many ways, I felt that catharsis needed to begin as soon as possible. And what better way than by dealing with problems not my own? I knew that I was just delaying the inevitable, but when it comes to grief, there is no magic formula.
All of the mothers and fathers I have dealt with over the years have earned my undying respect, starting from the very first family I dealt with back in 2000, a mere two weeks after I started. They had a son who needed a bone marrow transplant, but their insurance would not allow it. Working through our existing contacts, I took on this challenge and reached out, eventually persuading a sitting United States senator to intervene on their behalf. Although his efforts ultimately proved futile, and the boy’s procedure was rejected, it still demonstrated to me the importance of the role I’d taken up. It was a real eye-opener.
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. Leav
ing 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.
