BY PAULA SKELLEY

My daughter, Lydia, had been diagnosed with Rhabdomyosarcoma when she was seven and a half years old. In spite of proton therapy and protocol after protocol of various chemotherapies, the inoperable tumor behind her jaw kept growing.

The last thing I wanted to do was speak of death and dying to Lydia. I wanted to maintain a positive attitude and keep hope alive. I wanted to keep Lydia alive.

Lydia had battled cancer for almost a year and a half when she broached the subject of death. She was curious. “Mom, if I die now, do you think God would let me see myself as a teenager?”

At that moment I realized Lydia’s need to speak of death had to supersede my fear of her dying.

“I think so.” I answered. “If He could create the world, letting you see yourself as a teenager would be easy.”

Lydia’s courageous inquiry opened the door for a serious conversation. I took the opportunity to ask more questions.

“So, if you die, what do you think you would want?” I ventured. “Would you want to be buried…cremated…?”

Lydia laughed at the idea of cremation and her ashes being kept in an urn. “Oh gross! You wouldn’t want a dead person in your house!” she exclaimed. Her sense of humor lightened the mood. “I’d want to be buried…”

Lydia’s one question began an honest and ongoing dialogue about death. This was greatly encouraged as a healthy way to deal with our circumstances by Lydia’s medical team which included a social worker and palliative care team member.

Lydia and I benefitted from straightforward discussions. We comforted one another while mourning our impending loss. Months after our first conversation, Lydia asked, “Mom, will you be ok if I die?”

“Remember how it was when Grandma died last spring?” I asked. My mother died a year into Lydia’s two year cancer battle.

“Yes,” she responded.

“I was very sad. Sometimes I still am sad and cry. I miss her every day, and yet I am able to carry on.” Lydia contemplated this as we recalled our own grieving process through my mother’s death.

“If you die, I’ll be heartbroken.” I continued. “But, I know you will in heaven with God and Grandma. I will cry sometimes, just like I do when I miss Grandma.”

“I don’t want you to be sad,” she said.

“I will have good days too. Just like you and I have good days in spite of Grandma’s death,” I assured her.

As our conversations continued, Lydia and I talked of hopes, dreams and the afterlife. Before bedtime, we sometimes read the Bible together and found comfort in Corinthians 13:13 “these three remain: faith, hope and love…” We had faith our love would remain, and we hoped for a future together in heaven.

As time passed, Lydia’s tumor grew in spite of all medical efforts. Finally, we ended cancer treatment and treated only for comfort. Lydia’s Palliative care team carefully regulated her medication to keep her as pain-free and as alert as possible. They were our liaison with hospice care that did not specialize in Pediatrics.

In late April, 2013, after a five day hospital stay, we knew the end was near. Lydia adamantly wanted to go home. Following much consideration and discussion with Lydia’s medical team, we brought her home via ambulance.

Two days before Lydia’s last breath, she looked at me and said in a matter-of –fact tone, “Mom, I’m dying.” Our previous conversations had paved the way for her to readily admit it.

In this, our last in-depth discussion, we spoke of Lydia’s brave fight to live by following dauntless protocols of chemotherapy, and by submitting to proton and radiation therapy. Throughout it all we had prayed for a miracle.

“If God wants you now, there is nothing more we can do. We have tried everything,” I said.

I held her small hands in mine and continued, “Time will go quickly for you in heaven, and before you know it, I’ll be with you.”

Looking at Lydia, I saw her nine and a half years flash before me: so much strength, love, courage, intelligence, wit, beauty and humor. “I’m so proud of you and I will love you forever,” I said and apologized for mistakes I had made as her mother.

She squeezed my hand and said, “I love you Mom. You’re the best mom ever.” I hugged her and she whispered in my ear, “I’ll never forget you.” We held each other.

Watching Lydia’s body deteriorate was torment. However, having Lydia at home was a blessing. It was where she wanted to be. A hospice nurse stopped by once a day and would be there at a moment’s notice if needed.

The night before Lydia died, her breathing was shallow. She struggled to get comfortable. I laid down beside her, held her hand, and we both finally managed to fall asleep around 5 a.m.

Three hours later I awoke, but Lydia slept on, breathing ever so slowly. At 10 a.m. she took her last breath. A moment later, a slight smile formed upon her lips, like a gift of assurance she was happy to leave the pain behind and enter heaven.

Our discussions of death were an amazing help in the end. I was not faced with daunting decisions in the depths of my despair after Lydia died. I did not have to question what my daughter wanted.

She had told me. Lydia did not want to be cremated. She wanted to be buried in a white coffin, with her teddy bear, Milkyway, in the cemetery next to her elementary school. This child who was unable to choose what happened to her body in life because of cancer, was empowered to choose what happened to her body after death.

The conversations we had were painful. Not having those conversations would have proved more painful. Nothing was left unsaid. We were able to comfort one another as death approached. Letting Lydia speak freely of dying and answering her questions brought us both peace, and eventually, acceptance.