PREFACE What Should I Expect? It was the middle of July 19th, 2021, to be specific. It was hot and crowded in Destin, Florida. I had a meeting to go to this particular day. I wasn’t expecting anything out of the box, but little did I know that what I was going to hear this day would change, in a positive way, my frame of mind and thought processes forever. The speaker was a former Israeli sniper who retired and entered the business world. He had been very successful in building huge sales teams and pushing them to their limits. The topic he would share this day was on NLP (Neuro Linguistic Programming). This was not a foreign topic to me as I had read a couple of Tony Robbins books and that is the premise of much of his material. But what this speaker said was so profound to me that since this day my way of thinking has been forever changed. What he said this day that I am going to share may sound simple, yet if you let it sink in and embrace it, I fully believe you will understand why it has had such a profound effect on me. 20 | SCOTT E. HUFFAKER “Beliefs Are Feelings. I Mean Beliefs Are Just Feelings!” What did he mean? As soon as he said it, my mind began to spin. I knew he was right on point. You might be asking, why would this be so moving for me (the author) or you the reader? Let me share. As people, as humans, our beliefs and what we embrace originate from many places. What we are taught, typically comes from people we believe, like (or love) and trust (parents, grandparents, etc.). Our beliefs come from our education system. Our beliefs come from our experiences. This or that happens so this must be the way things are. For many, beliefs come from media and officials. We embrace things and believe things that we feel comfortable with or are easy for us to embrace. We believe things that come from our friends or the community, organization or church we are involved in. We believe things that may come from “religious” authorities. Our beliefs (feelings in their infancy) can originate from many different sources and avenues. And these beliefs were mentally and emotionally birthed as feelings. You still may be asking what does this have to do with grief? Hang with me a few more moments and I will shed light on the path you are following me down. In one of his books, Tony Robbins likened beliefs and convictions to a tabletop with legs. A belief is merely the top of the table. But as one gathers more evidence and or affirmations concerning that belief the legs start to attach to the table and create a conviction. And here is where we have to be irrefutably honest with ourselves... LOST ARROWS | 21 With whatever we believe (matured feelings and possibly a conviction) did we personally do the necessary due diligence to verify whatever we believe, is the ultimate irrefutable truth? So how does this all connect? This book is going to share and explore grief from a very diverse perspective, as if we were in a spaceship looking down on earth. There are many things that have helped me, and I believe will help you cope and learn to cope better. And frankly it may require a more open mind than you have had up to this point. This book is not intended to be a “faith” based book and there will be times when different religious sources and materials will be quoted and used. As a caveat, I personally profess my beliefs as a Christian, and I know not everyone does, so I come humbly and respectfully with a desire and heart to help anyone and everyone who wants to migrate to a higher level—no matter one’s beliefs. This perspective, that I will share, has helped me become a more merciful, loving, caring and non-judgmental individual. All these improved attributes have helped in my healing and coping process. Now that this discussion is out of the way, here is what you can expect. For many reasons, I believe everyone needs to share their story about themselves and their child or children they have lost. So in the first chapter I will share Dylan’s story, our story. Next, we will explore how different cultures, peoples, populations and religions approach grief. Some of this material will be historical in basis. 22 | SCOTT E. HUFFAKER Then the subsequent chapters will be specific things we can embrace and do to migrate to a better place of coping. Then finally as the saying goes if you fail to plan, you plan to fail. So the finale will be an outline and plan to help us reach a higher plane of coping. Thank you for choosing to join me in this path thus far and I look forward to sharing more toward our mutual healing, coping and helping throughout the rest of the book. 23
CHAPTER 1 Robert Dylan Huffaker—Is This What It Feels Like To Have A Firstborn Son? An ancient story goes like this: A slave travels with his master to Baghdad. Early one morning, while milling through the marketplace, the slave sees Death in human form. Death gives him a threatening look. The slave recoils in terror, convinced that Death intends to take him that day. The slave runs to his master and says, “Help me. I have seen Death, and his threatening look tells me he intends to take my life this very day. I must escape him. Please, master, let me leave now and flee on camel so that by tonight I can reach Samara, where Death cannot find me.” His master agrees, and the terrified servant rides like the wind for the fifteen-hour journey to Samara. A few hours later, the master sees Death among the throngs in Baghdad. He boldly approaches Death and asks him, “Why did you give my servant a threatening look?” “That was not a threatening look,” Death replies. “That was a look of surprise. You see, I was amazed to see your servant today in Baghdad, 24 | SCOTT E. HUFFAKER for I have an appointment with him tonight in Samara.” - Money, Possessions & Eternity, Tyndale Press 2011 No one can escape death... When a child is born, typically we are not focused on the fact that one day they will die. We are enthusiastic and enthralled with all that they are (and will be) and all the joy that will come. I couldn’t say that with Dylan. Although excited about my firstborn son, I was overwhelmed with fear about his future demise. Within a few days of his birth, I knew deep down that his life would not be normal. I always believed that he wouldn’t live past the age of 12 or so. Let me rewind to the past for a moment. As far back as I can remember, I always wanted children. I always loved playing with the kids and babies at church and everywhere I went. When I was 12 my nephew Michael was born and within a few days later my niece Amy was born. I was happier than a pig in the mud. Those are some of my best memories— being around them, babysitting them. My brother Stanley (Michael’s dad) and his wife Patricia came over for lunch after church almost every Sunday. After Michael was born, later Melissa, those Sundays were truly the high points in my week. We didn’t see my oldest brother Steve or Amy very often, as they lived in south Alabama and we lived near the Tennessee line in northwest Alabama, yet I was always anxious to get to see them and play and love on them. LOST ARROWS | 25 Fast forward to 1983... When I married Donna, my oldest children’s mom, she already had a daughter. Lena was a very sweet, quiet child and never truly a bit of trouble. But even to a 19-year-old who loved children, at that time in my life it wasn’t the same as having a child who was your own flesh and blood. To say that our relationship (Donna and me) was anything less than a constant storm would be an understatement. Unfortunately, there are few times that I can recall that I had any peace about our relationship. Yet still we plunged through it. We got married in January of 1983, divorced in August of 1985 and then got back together in March or April of 1986. On March 1, 1987, our first child Kymber was born. Oh, such a happy day for me! But similar to Dylan she had some heart issues as well. When she was about six months old, she was diagnosed with SIDS (Sudden Infant Death Syndrome) and we had to put her on a heart monitor for 18 months. As her heart rate got low in the night, the monitor would alert us and we would have to wake her to get her heart back to normal status. To say the least this was exhausting, not only from lack of sleep, but from again facing the fear of death of a child I loved so dearly, my firstborn. Prior to Kymber’s birth, my good friends Barry and Melinda Grimes lost their 2-year-old son. This only escalated my deepest fears. In my mind, the stage was set... On March 6th, 1989, our beloved Dylan was born. Due to the health problems that Kymber had experienced, we had gone 26 | SCOTT E. HUFFAKER to USA Children’s & Women’s Hospital in Mobile to deliver. Prior to his birth, his health issues had not been identified. So shortly after his birth and the nurses flurrying around, we were taken aback in complete surprise. They called in a specialist, a pediatric cardiologist, Dr. David Mayer, and this is what he shared. Dylan’s heart was upside down and on the wrong side. He had tricuspid atresia, which is where there are three chambers in the heart versus the normal four. He had pulmonary stenosis, which was partial blockage of his artery to the lungs, and he also had a hole in the top of his heart. I was in a daze, and I was facing my greatest fears. The potential of losing a child. The hospital visits, the heart caths (cardiac catheterizations), the tests went on endlessly. After a bit of time, I truly can’t remember how long it was until we received a prognosis. They had consulted with the doctors at the University of Alabama at Birmingham (UAB Hospital), specifically Dr. James K. Kirklin and Dr. Albert D. Pacifico and the best they felt they could offer was a procedure when Dylan turned three, known as a Fontan procedure. They would go in and rework the heart makeup as best as possible and that would give him a few years. They believed that he could live a guarded life with meds and care for a few years. Per Dr. Kirklin, Dylan was not a candidate for a heart transplant. Donna and I were emotional wrecks. I had not been close to my family since Donna and I had gotten married and had not really darkened the door of a church more than a handful of times since I moved to South Alabama in 1982. I had gone a LOST ARROWS | 27 few times to Fairhope Church of Christ but I wasn’t engaged. That was about to change. Lena, Kymber and I started attending regularly and the church and the people there were very comforting, loving and prayerful for Dylan, our family and his situation. Dylan was constantly being prayed for. This being part of a church, a community, was key to maintaining our path and sanity. We had a support system in place. Fast forward to 1992... These three years went by rather quickly. Dylan was loved and cared for by his sisters and in the meantime, Dylan had a new baby brother, Christian Tyler. He was born On November 15, 1990. Thankfully Tyler wasn’t born with any health issues. We had found a couple that kept children, Bill and Patsy Schuler and Donna had started a cleaning business, so the children began staying with them during the day as Lena went to school and we worked. I had been working at GMAC and had progressed rather well, but they wanted me to move from Mobile to be promoted and I didn’t believe I could do that given Dylan’s condition. His doctors were familiar with his situation and we had believed in their abilities—that they were his best medical solution providers. So I had to make a job change, and that was scary due to the insurance scenario and knowing what we were facing in just a few months. I started working at Grady Buick/BMW as a Finance Manager. Don, Gary and Kelly Grady were very gracious 28 | SCOTT E. HUFFAKER and understanding of our situation and supported us 100%. This was in March of 1992. We were surrounded with overwhelming support from friends, family, church friends. My former bandmates helped with entertainment for a benefit: Terry Goins, Jack Smith, Bill Menas and Barry Grimes. Barry had lost a child (Stephen) in previous years to a quick onset of spinal meningitis. In retrospect not sure how he was able to play that with us. Also, a good friend from church, Phillip Brown, who helped in raising several thousand dollars to assist with the anticipated expenses. We were surrounded with love and care. In April of 1992, Dylan went to UAB to have the Fontan procedure. This went fairly well initially. Dr. Pacifico performed the surgery and the results achieved were as well as could be expected. They felt that Dylan should have some good years in front of him. However, suddenly, things took a turn for the worse. Water began filling up in his pericardial sac (the membrane around the heart). They rushed him into surgery again and removed the sac from around the heart. For several days things were touch and go and they we were not sure if he was going to make it. I’ll never forget during this time the band I was playing with (Michael Garrahy and Celebration, https://www.mfgent.biz/ music-and-band-photos) as a part time gig. We had just played an event at the Officers Club at Naval Air Station Pensacola. I was driving back home knowing Dylan wasn’t faring well and as I passed the rest area at the Florida/Alabama line I prayed with great sorrow. I prayed, “God please don’t take my son, take me if someone must die but please don’t take him”. For the first time ever, I realized I loved someone more than myself. LOST ARROWS | 29 As miraculously as miracles come on this earth, the next morning Dylan began to improve and within about a month he was back home and we were together as a family again. Dylan was thriving and doing well. So many prayers were prayed and answered on his behalf. In my mind Dylan was the closest I had experienced to a miracle in this life. When Dylan was five, the Make-A-Wish Foundation, as they do with many, granted Dylan’s wish for us to go to Disney World. We had a great time and he got to see his hero, Mickey Mouse. It was a wonderful time and we created memories we will all cherish. Things rocked along for several years. Dylan and his siblings did the normal things—went to school and had a rather normal life. In the fall of 1999, Donna filed for divorce. I could write an entire book on all that transpired over the years after this, but I am going to keep it simple and focus on the segment that Dylan played throughout this time. I will say there were many things that happened that seemed horrible at the time, that I learned from them, and that I see (in retrospect) that their happening was a benefit to me down the road. The divorce process lasted a little over a year and during this time we each had the children for a week at a time. This same process was settled on and continued after the divorce. It was specifically on September 11, 2000, that Tammy (now my wife) and I first connected online. Within a couple of weeks we decided to have lunch and went to Mikee’s Seafood in Gulf Shores. She wasn’t sure about going to lunch with an older man; she was 22 and I was 38. But Kay Norton, an old friend, worked at Myer Real Estate with Tammy and 30 | SCOTT E. HUFFAKER she assured her I was an okay guy. My divorce was final in October of 2000, but although we talked frequently, Tammy and I didn’t start dating until January of 2001. Tammy had had her own cross to bear as her father was killed in a tragic accident, right after her high school graduation. She had encountered this dreaded event of death. As with most of us it was extremely hard for her to deal with it. More on this in a moment... Tammy and I married on October 23, 2001. She wasn’t sure how well she was going to deal with three half-grown children and the whole blended family scenario. But September 11th had just happened, and I think much of the world had the mindset that life is short and we must capitalize on “the moments.” Within weeks we were back in court (Donna’s favorite pastime). This was the beginning of many battles that continued until her death. Fast forward to 2003... Due to the nature of the accident of Tammy’s father’s death, she, her mom and her sister received an insurance settlement. Tammy decided she wanted a big house, so her mom gave her a couple of acres next to where she lived and we began the planning stages of building a new home. She wanted the kids to have their own rooms. So the plans ended up being for a three-story seven-bedroom home. Looking at it from the road many people thought it was a bank building, due to the LOST ARROWS | 31 height and design. In retrospect, although I’m thankful, too many times the wish to dial back time and use better wisdom and go smaller has been felt and expressed. This new house angered Donna to new heights and she was done having shared custody of the children. To say I was an emotional basket case would be a grave understatement. Facing the thought of having my children ripped away from me, especially for no good reason other than more money was hard to take at the time. I will reiterate here that the lessons and experiences I encountered through the next years, although painful and taxing, only prepared me for the now. Over the next years I got thrown in jail countless times over false allegations and “contempt”—again, all with money being at the root of the actions. It was never about the true best interest of the children. I didn’t see Dylan from that July 2004 until he graduated from high school in 2009. And that was only briefly—for maybe an hour. In April of 2010 Dylan was admitted into the hospital at UAB. This was a short time after his 21st birthday. The Fontan procedure had lasted as long as it was going to. Dylan was going downhill fast. On August 14th I got a call while I was at a customer’s house and I don’t even remember now who called. But I was told that Dylan had had a successful heart transplant. I was beside myself in emotions. You may remember from an earlier chapter that Dr. Kirklin, who performed the Fontan procedure when Dylan was 32 | SCOTT E. HUFFAKER three, had told us that Dylan was not a candidate for a heart transplant. How ironic is it that the doctor who performed Dylan’s heart transplant was Dr. Kirklin’s son! He was the first in the world to do a heart transplant on anyone with the many abnormalities Dylan had. Once again, this showed me and the world the closest thing I believe I will ever witness as a miracle in this life. Donna made many attempts always to have me falsely thrown in jail. She was regularly trying to get me to come see Dylan. I had cut off all contact with her due to her continued escapades. About a month after the transplant I was able to go see him. This time was no different, but I knew what to do. I took about ten people with me and when once again she tried to cause a scene in the ICU and have me thrown in jail. I humbly bowed out. I only got to see Dylan momentarily—not even talk—as he was unconscious. Dylan continued to improve and in December of 2010 Dylan and his mom moved back to Bay Minette to live with Donna’s father. It wasn’t long until Donna and I were in court again. Yet, after all these years I had learned how to maneuver and manage this game. We went to court one more time in 2014. After that I began representing myself. That experience was very LOST ARROWS | 33 enlightening and eye opening about the inner workings of the family court system. It wasn’t a win but it was a “keep things at bay” strategy. Frankly that was the best I could hope for and I was thankful for the reprieve, even though it infuriated many (and I mean many) people. Still no seeing Dylan through 2016. Tyler was doing well and he was living in California. Tammy and I had been blessed in 2005 and 2007 via in vitro with two wonderful children, Joseph and Lucy. I had many things to be thankful for. But as any parent would and will, I still missed my oldest son and missed being a part of his (what I knew deep down) shortened life. In November, 2016, things had changed in the political arena and I highly suspected my “keep at bay” move might soon fall apart. I had taken Joseph to see Casting Crowns, a Christian rock band, perform. I personally hadn’t listened to them much but Joseph had and he wanted to go see them. I was very moved. What was the most moving was when Mark Hall (a youth pastor and the band’s lead vocalist) told the story of how he came to write the song “Just Be Held.” I could 100% relate. I knew that was all I could do—let God hold me in his arms. Admittedly I was at one of my lowest points during this time. On the afternoon of December 18, 2016, Tyler called me. I was completely not expecting what he was about to share. Their mom, Donna, had passed away that morning. Things were about to change! 34 | SCOTT E. HUFFAKER Personally, I felt relieved and blessed from my lone perspective. Hopefully now all the warring and court appearances were over. Yet because I love my children, if I had held the power to bring her back I would have. It was unbearable to see my children suffer over the loss of their mom. After a few days, with comforting as best I could from a distance, they buried their mom. Lena and I continued to talk on occasion over the years, but she had become disenchanted with me over some things that transpired on her wedding day (December 18, 2019). But there was an event that happened while she was a teenager where I was supportive and her mom wasn’t and she had greatly appreciated my response at that time. Thankfully I had done something right with her and for her. For this reason and with her being the great young woman she had become, she spearheaded an effort to reunite me with Dylan. Dylan had been led to believe that I didn’t care for him, that I didn’t love him and that I didn’t want anything to do with him. It was a glorious, joyful and wonderful day when Lena and her family brought Dylan to me and we all had breakfast together. My heart was so happy! It took a few days but even through his grief Dylan began to relearn that I was the loving father he had grown up with as a child. Over the next few years we became closer than we ever had been. We loved each other and I was so thankful. We did things together—go to his doctor visits in Birmingham, spend Christmas with Mom, Dad, and my family, see movies, and do all the other things that Dylan liked to do. These cherished memories will stay with me forever. LOST ARROWS | 35 At the beginning of 2021, Dylan began having some respiratory problems. They got worse. He had gone to his local doctor but didn’t seem to get better. So we scheduled him a visit with his doctors at UAB. Tyler actually flew back to meet us and go to Birmingham. That was somewhat of a fun trip, just me and my older sons. Something that we had not gotten to do in a long time—just us being together. But Dylan was insistent that he was dying, and yet all the results from his heart and lung tests were good. He had a little congestion, so they gave him some antibiotics to help clear it up. This was in February and for a bit he seemed to improve. Yet in June we were back there again— same good results as far as his heart but some congestion that they continued to treat with antibiotics. In the middle of July, he had become worse again and he checked himself into the hospital in Fairhope, Alabama. With all the Covid goings on, I couldn’t visit him in the hospital. We talked daily and the doctors had gone into his lungs and scraped the congestion. He was doing better. He stayed in the hospital until the 31st, when he was discharged. I continued to talk to him via phone and he was doing well. The night of August the 4th was the last time I got to speak to him. I called to check on him and he was still feeling good. We spoke for a moment and talked about getting together soon to go do something. We told each other we loved each other and we hung up. 36 | SCOTT E. HUFFAKER Lena spoke to him the next night. He had just gone to sit in his living room and said that he was getting stuffy, but said that he was feeling good. He went to bed and never awoke. His death is still somewhat of a mystery, yet I chose not to dig into what the cause was as I knew that wasn’t going to bring him back and felt it would only create more pain and not comfort. I wanted to create a memorial for Dylan, so I called Connie, his nurse at UAB and asked her did she have any thoughts of worthy causes that needed donations. She shared with me about an organization called Red Mountain Grace in Birmingham. They assist with families that have to come to UAB or other hospitals in the area for an extended stay. We fully understood this dilemma. So I felt this would be a worthy cause to assist with and direct gifts to (and monies otherwise spent for flowers). Thus far, as of the writing of this book, a little over $7,500 has been raised. My plan is to direct 40–50 % of the net proceeds of the sale of this book and journal toward that cause. The remaining monies will be used to market the book and to establish physical and virtual groups for those within the lost children community. Thank you for continuing with me down this journey. Next, we will explore how others outside our “circle of beliefs” deal with grief and mourning. See you in the next chapter!