Living to the Max How one dad tries to deal with the loss of his son

In the natural course of life, parents are not meant to bury their children. They are also not meant to watch them suffer as they are taken by the awful curse that is cancer.

Max Dwares passed away at the age of 20 from complications related to a bone marrow transplant that he had on July 27, 2001 to cure him of chronic myelogenous leukemia. 

Kevin Dwares, Max's dad, had the special gift of being in the delivery room when his first son, Max Gold, took his first breath on November 4, 1983 and was with him in the hospital room when he took his last on February 18, 2004.

Max attended Stadium Elementary School, Bain Middle School and Cranston West, where he graduated from the Robotics program in 2001. He participated in the gifted program in elementary school, science fairs and played baseball and basketball through CLCF and in high school was involved with Vocational Industrial Clubs of America.

It has taken Kevin 12 years after Max passed to get up the strength and emotional fortitude to tell Max's story of strength, humanity, faith and determination.

Max's initial diagnosis was March 8, 2001, with what appeared to be a simple flu or maybe mono symptoms. Little did the Dwares family know what was waiting for them.

While battling leukemia in 2001, Max began writing a book, but he eventually became too ill to finish it. After he passed away, Kevin wanted to complete the book, but it was too painful. 

"The book was in the initial stages by Max but stopped as he grew sicker, leading to his death. Max asked me to continue his book shortly before he passed away as a tribute to everyone left behind but, more importantly as a reminder that while disease can be brutal and take lives, a positive attitude and faith can take you forward," said Kevin.

Max began to keep journals (13 in total) when he was sick and continued until he passed away. He had written an outline with a friend and asked Kevin to get involved and to give input. The friend wanted to have the book written as sort of a coffee table book with a lot of pictures of Max in the hospital with some brief captions. 

Kevin began to write the manuscript with Max's input, but Max passed away before he could finish the manuscript. He never looked at Max's journals until this year. Even though the majority of the writing could be considered Kevin's, the story is about Max and his thoughts and wishes.

"One day, my granddaughter, Maya [who is named after Max] was visiting and saw me looking through some papers and folders. She asked what he was doing, and I told her I was trying to write this book. Little Maya said, ‘Pappa, I know Max died and lives in the sky. Finish the book,’” Kevin said.

That was all the motivation Kevin needed to finish telling Max's story.

Max and Maya share a passion in that both have a true love of animals.  They also both love people and show genuine concern for others.

The book tells not only of Max's journey but of a family and the community they built to provide comfort, strength and support.

Kevin spoke candidly about the adjustments he and his family made after Max's passing.

"Before Max got diagnosed with leukemia we were the typical middle class family with both parents working, two children and dogs and cats. We went about our business like everyone else, paying our bills, taking care of the kids, going on small vacations and doing the "normal" things like baseball, soccer, music lessons and the routine medical appointments. Then it "hit the fan.” The word cancer strikes fear in everyone who hears it. But usually it is someone else. This time it was Max, a loving son and family member. Today, 12 years after his death, we appreciate life more then ever and try not to get upset about the small things. However, the “new normal” means that there is tremendous loss in our hearts not only for the loss of Max but for the loss of possibilities. Max will never be married and therefore he would never have the opportunity to have children [our grandchildren]. So many things are lost when the death of a child occurs, so when I say the new normal I actually mean we get up, do our thing but are always cognizant of something missing. We strive for normalcy but settle for a new normal," he said.

While grief and death affect all people differently, Kevin has never felt the need to seek counseling until recently.

"I never went for counseling even after my father's death but recently have had a few sessions with a professional mainly due to the stress associated with writing this book. I think for myself that I don't need counseling as I find ways to vent out the stress and anger in missing Max. I exercise and do other things. Also writing the book was cathartic for me," he said.

Barbara (Max's mom) has gone for counseling almost weekly for the last 12 years and continues to do so. She also read only a few pages of the book and told Kevin that she can't and won't continue to read it as she perceives it as being too stressful.

Kevin finds himself "talking" to Max quite frequently. 

"Shortly after Max passed away I swear I saw him in the house walking downstairs. After Max died I painted the basement floor and put on a pair of Max's old shoes and left footprints going into the room but not leaving the room. Max loved to go into his basement hideout. I have sensed on other occasions that I think I see a shadow in the hallway going into the room. Sometimes I am happy about that but also realize the mind can make one think about things that may not be real. I also talk to Max sometimes late at night. I shut my eyes and ask Max to come to me in my thoughts. Sometimes when I shut my eyes I see a bright white light only in my right eye. Perhaps that is Max saying hi," he said.

Another way the family keeps close to Max is to spend time at his gravesite. 

"Barbara visits the grave as often as she can. I think that she finds it peaceful but also very sad. I, on the other hand, have only visited my father's grave a handful of times even though he died nearly 50 years ago. I have visited Max's grave a few times and usually only when Barbara has asked me to accompany her. My belief is that when someone dies their memories remain in the mind and soul, and I feel that Max is with me so I find no useful purpose in visiting his grave. However, the funny thing is I have Max's headstone picture in my cell phone and you will see the inscription on it: ‘A Coke and a smile.’”

Max's eulogy in the book explains why Kevin had this engraved on his headstone. When he gets upset, he looks at the inscription and smile. Kevin now sees life and sadness in very different terms.

"I would have to say that I now think of life differently than before. I try [although it's not easy] to let the small things that could be aggravating to slip away and only concentrate on the most important issues. To be quite honest, I am somewhat desensitized to death. My dad died on February 19, 1968 at the age of 39 from a car accident, which resulted in a brain hemorrhage. (Max's funeral was Feb. 19, 2004). My dad’s brother, my uncle, committed suicide the day my dad's shiva ended. A week later my great-grandmother died. Thirty years after my uncle committed suicide my uncle's son, my first cousin, killed himself. While I can cry at the loss of a life, I think that emotionally I lost the true sense of crying at the loss of a loved one (except for Max and my dad).”

Even though it has been 12 years since Max passed, the acceptance is a slow process for any parent.

"What advice could I give to a parent that loses a child? It is the worst imaginable thing that can happen to a parent and a family. I would say that you should always tell your children [and spouse] that you love them daily. I would also encourage parents to tell their kids that they don't need to get straight A's in school or they should become a doctor or lawyer. Tell your kids to be happy and healthy and live life to the fullest extent possible. And be a mensch [yiddish word for a person who does good deeds] and make the world a better place for all of us. The only comfort I can offer is that death is a natural happening. No one but G-D knows the time it will end. Life after death is never normal again. It is now a new normal. The loss of Max can be summarized by saying that the loss of a child is the loss of possibilities. However, life is truly for the living and take a deep breath and one step at a time. Surround yourself with loved ones and friends who maintain a positive attitude," he said.

Kevin learned more about himself as a man, father and a Jew during the time he spent writing the book.

"As a man, dad and Jew, I, of course, am all three. As a dad, no one, whether dad or mom, wants to see a child struggle between life and eventual death. But at the same time I learned that I needed to still work and support my family financially but also to be strong during the process. I still have a wife and younger son that count on me for moral support, so I learned to be strong and, unfortunately for me, I also learned to stuff my emotions inside so I could concentrate on others. Men aren't supposed to cry, according to society. We are meant to be strong and resourceful. But crying as a man isn't something that I am ashamed of. It just took me 12 years to finish the journey and also let my emotions out. So the book was actually cathartic for me. As a Jew, I always believed that family and G-D were to be believed in during good and bad times. I always have had a strong spiritual belief in G-D so that relationship with him/her made the journey somewhat more understanding although not totally accepting. I have asked G-D why he took Max and I guess I understand that there is no actual answer but to only believe that G-D has a better purpose for Max somewhere else.” 

“To summarize, we are all created in the image of G-D and aren't perfect. We live, we love and we die. Some young and some old. I try to be a good husband, father, father-in-law, grandfather and friend and human being. No more and no less," Kevin said.

All proceeds go to the benefit of the Hasbro Tomorrow Fund and the National Foundation for Transplants. Max's story is available at Amazon.com or Barnesandnoble.com.