You Can't Do It Alone

PREFACE

The Last Breath—How to Tell Your Child His Daddy Died Last Night

BY THE TIME THE MORTUARY CAME TO PICK UP MY husband Sean’s body, and after we finally went over all the paperwork, it was almost dawn. Thankfully, our just-turned-five-years-old son Gus was asleep the entire time. I was so worried that he would wake up and wander into the living room and wonder why everyone was there so early… and then cry and watch strangers bring his daddy’s body out of the guest room where he’d slept the last seven weeks of his life and into a waiting black van outside.

God must have answered my prayers, because the house quieted down after most of the family left. I snuck back to our bedroom and crawled into bed next to Gus. I held him tight as I waited for the sun to come up, expecting him to stir any moment. Surprisingly, he slept until well past seven—completely out of the ordinary for him. It was as if Sean kept him dreaming until I found the right words to say. I even fell asleep for a few minutes, hoping as I dozed to get another glimpse of Sean in my dreams. Finally, Gus awoke and immediately sat straight up, like every other morning, ready to jump out of bed and into the day.

I gently pulled him back down and greeted him with my morning kisses. I whispered that I wanted to tell him some news about what happened last night.

He sat still, realizing that my voice and tone sounded serious.

Very softly and slowly, I began, “Remember when we were in Betsy’s [our family therapist’s] office a couple of weeks ago and we talked about what it meant when someone died?”

He nodded yes.

“Well, that’s what happened to Daddy last night.”

Gus stayed quiet and lay very still. I went on to say that it was so wonderful that he was able to say how much he loved Daddy last night before going to bed, because he heard him say it before his heart stopped beating in the middle of the night. That’s why everyone had been coming over to tell Daddy how much they loved him this past week, I explained. “They wanted to make sure that they did what you did, too, before the cancer got worse and made his heart finally stop.” I tried to keep my tone as clear and steady as I could, trying not to sound scared, remembering what Betsy had said about children always taking cues from us, especially in times of confusion or sadness. I’m sure that my voice sounded sad, but I also wanted to make sure that Gus knew he didn’t have anything to worry about… that I wasn’t going anywhere, that I didn’t have cancer, and that he was going to be okay as long as I was going to be okay.

I think Gus was in disbelief, because he turned to me and said, “No, you’re joking, right?”

I shook my head no and said that it was true, that Daddy was not here anymore. He burst into tears and cried and cried. We both cried for several minutes as I tried to comfort him, telling him that we have to be brave as we move forward and that we will be sad because we won’t see Daddy physically anymore, but that we should feel better later knowing that Daddy is not in pain anymore from the cancer.

Gus said, “I hate cancer.”

I said, “Me too, Gus. Me too.” I told him again that even though Daddy wasn’t physically here with us anymore, he promised that his spirit would stay here with us and would always be near. And that if we were feeling sad and missed him a lot, we could just talk to him and we should always remember that he will hear what we say. And if we listened closely and looked really, really hard, we might even hear him or see a message from him from time to time.

Gus then asked me where Daddy was at that moment. I reminded him again of the talk we had in Betsy’s office about what happens when people die. How the funeral home would come after a while to take away the body. I told him that it happened exactly that way. “They came very early this morning when it was still very dark, picked up his body, and drove back to their office so they could get him ready for the funeral at the end of the week.”

“NO!” he shouted. “I wanted to see him! Why didn’t you wake me up?” he asked with more tears flowing. I said that I was sorry for not waking him, but at the time I had decided to let him have his rest, especially since he had said good-bye and good night to Daddy the night before. He wasn’t happy with me and ran out of the room to see for himself. He ran to the guest room where Sean had been staying and stood just inside the doorway, staring at the empty hospital-type bed with the side railings that protected him from falling. I went in, too, and put my arms around him.

He walked in farther and stood in the middle of the room for several minutes, just looking around. He stared at the empty bed and the folded blankets and stacked pillows. Then he turned and looked at me. “So Daddy is really dead?” I nodded yes.

He jumped up on the bed and laid his head down on the unmade mattress and started to cry. I curled up next to him and hugged him. I told him again how much Daddy loved him and that Daddy was going to be with him forever. Even though we couldn’t see him anymore, his spirit was going to be in our hearts forever. I was trying to make Gus feel better, but I was also trying to make myself feel better too.

We sat up on the bed, and I walked him through what happened again. It was the most difficult thing I’ve ever had to do. I held him as I described the two funeral home attendants who arrived shortly after I called them. They were dressed in their dark suits and were professional and very kind. They asked me a few questions and asked a few of the nurse. After I read over some of the paperwork they gave me and signed a few documents, I watched them as they very gently placed Daddy’s body on a little rolling bed. I told Gus how they wrapped him up nicely and securely, then wheeled him out to the waiting van outside. I explained again, simply, how the cancer had finally made Daddy’s heart stop beating, which caused him to stop breathing. And how at that point it wasn’t really Daddy anymore, that Daddy’s spirit had left his body and was now all around us and would forever be with us. And that we must always, always remember that.

I made sure to keep the tone of my voice as reassuring and as comforting as I could. I heard Betsy’s voice in my head: “Remember, Gus will take his cues from you. If you sound terrified or unsure of your and his future, he’ll feel that. So if you sound like everything’s going to be okay, he’ll be less apt to be scared and instead know that he’ll be okay too.” So I made sure not to sound scared. The one thing Sean and I always wanted from the beginning was for Gus to never feel afraid or insecure about his future. I asked Sean to help me do that and prayed for strength that morning. I know he heard me, because somehow, some way, I think I found the right words.

We stayed in the room for another several minutes. I told him one of my favorite “Daddy memories” and asked him to tell me one of his. We shared a laugh as he told the story of his silly Daddy running around the couch, chasing after him, playing Catch-You, the game he named himself.

After a few minutes, I said, “How about some Special K?”

Gus said, “Yeah, I want some of Daddy’s favorite cereal.”

My parents, aunt, and brother were home with us, so they took turns playing with Gus the rest of that day and the rest of the week. I’m not sure how I could have gotten through that day without them.

Those days leading up to the funeral were heavy for me and our family, but we also tried to keep it light for Gus. With their help, I tried to create some moments of happiness for Gus during the somber and emotional days leading up to the funeral. We all worked hard to make him laugh a little every day, just as Sean would have wanted him to. As we planned for the funeral, Gus matured a lot.

There was a question from a couple of family members about whether he was too young to attend the funeral, but I had no doubt about him attending. I reminded them that I, too, had gone to my own (birth) father’s funeral at almost the same age as Gus, and I knew that I would have been angry if anyone had kept me from it. We had been honest with Gus through the previous eighteen months and I wasn’t about to change that now. He walked alongside me and his uncles as we pushed Sean’s casket in church to the altar. He sat up front with me and cried through the services right along with us, but he also laughed too. He sat and listened throughout the almost two-hour service to all the wonderful stories told by his uncles. I made sure to record the event so that Gus could look back on it when he was older and ready to revisit that part of his life. I supposed I might be ready to watch it with him then, if he wanted me to.

I hope that you will never have to have a conversation like I had with our five-year-old boy that morning. You may be reading this book because either you or someone you know and love has just been diagnosed with glioblastoma or some other debilitating or terminal disease. Perhaps you’ve just lost a loved one.

If you suddenly find yourself in the role of caregiver, especially to someone with a disease like Sean’s and with his circumstances, the statistics are pretty clear, and they rarely lie. The chances of beating such an illness are very slim. Your story will almost certainly not have a fairy-tale ending. But I learned something through the grace of God and the love of family and friends. As the caregiver, even though the outcome may be out of your control, you are the one who decides how this story gets written, and you can, and must, create little miracles along the way.

But please remember never to give up hope. Hope that you will be part of that ten to twenty percent who can survive and thrive. We maintained a sense of hope right up to the end, and I think because of that we were able to live our best lives possible. Maybe even better than if we had eighteen more years together instead of eighteen months.

I am also here to tell you that you are not alone, no matter what, even if you don’t have a circle of family or friends available to you. We can all find our “village” in this world in which we are globally connected through technology. We can find support groups online if we don’t have them in our local community. You would be surprised how your children’s school community is willing to rally around you. If you don’t have your people, you can find them today. And you must, because you need them. You can even find a therapist or counselor online.

The importance of grief counseling for me and my family inspired me to invite therapist Lauren Schneider to contribute her expertise to this book in the Grief Therapist’s Notebook section at the end of each chapter. I am grateful that she generously agreed to do so, and I know that her insights will be helpful to you. But like most such advice, her suggestions and the suggestions I share in regard to what my family experienced are our own and may not be right for you. So please remember that as you walk on your similar but also different journey, you must consult with your own village of experts, including doctors and therapists, to make sure you and your family get the best course of action possible for you.

Four years after Sean’s passing, I am here to tell you something that may sound unimaginable to you right now. Just like I thought it was impossible to find joy in the days when Sean was in the midst of cancer and treatments, I did not imagine that I would one day see this difficult road lead to a beautiful destination. As I write this, my son and I have just returned from a two-week vacation, and for the first time since Sean’s death I had fun like I did when he was alive. Gus and I and my parents took a cruise down the Rhine River, and I felt something I didn’t expect to ever feel again. It took a moment to recognize what it was. I was happy. It was a different kind of happiness, but it was real. Every night in our cabin I thought about what a gift the trip was for all of us, in the same way Sean and I would talk every night before going to sleep, taking stock of the good things that had happened that day. The trip was an amazing experience that I will never forget because it returned me to the joy that I thought had left me forever. It unlocked a door that I hope will keep opening wider each day.

As I reflect on this continuing journey, one thing is perfectly clear. I couldn’t do it alone even if I wanted to, because Sean is always with me. Your beloved will always be with you too.