Quality of Life — and Death

Death—it’s a taboo topic in our society. I am now six months on the other side of Death. My beautiful son, Jai Tru, had cerebral palsy, epilepsy, and a traumatic brain injury; he passed away at just shy of five years old. It was his warrior spirit and love that kept him going.

I want you to know that every family is different, and there is no one way of coping that fits all grieving parents who are caring for and have cared for a child with a life-limiting illness. This is our family’s experience.

Quality of Life

Early in Jai’s adoption, my husband and I had to redefine parenthood. We couldn’t protect our son from his physical damage. Our only goal was to give Jai the best quality of life. We knew that the definition of “quality” would be unclear, reliant on his needs and what we were able to provide.

The marvel in this situation was the reality of Jai’s joyful spirit. Although he was in constant pain, he never seemed to go one day without smiling. He loved when I read to him. He loved when his sisters would sing and dance with him. He loved the racket of noise his brothers made. He liked to stay up late and lay on his Daddy’s chest for hours. He filled our home with his contagious laughter. I’ll never know Jai’s thoughts, but our connection was powerful.

When Jai was struggling through one of his multiple hospitalizations, I was often perplexed about how a person could suffer so much, yet always be ready to greet everyone with a light-up-your-world kind of smile and laughter. Oh, how I wish I could bottle and keep that laughter. The only answer I ever had was love.

When Jai was dying, I wanted him to have as much quality of life as possible. I wanted him to be surrounded by love, warmth, and family. I didn’t want him dying in the florescent filled space of a hospital bed. I wanted Jai to be with us in the place he was most at peace. The thought of him dying didn’t terrify me as much as the thought of him not being able to pass peacefully.

Quality of Death

When one of Jai’s doctors handed us a brochure for a pediatric hospice care organization, I was relieved. I honestly didn’t know that Jai would pass so quickly (about seven days later), but hospice was an amazing experience for all of us. The team seemed to intuitively understand the special needs of children. I was amazed at how ready they were and able to give support to address Jai and our family’s needs physically, developmentally, emotionally, psychosocially and spiritually. It was a relief to know that we could reach out–anytime–with questions, fears, and desires and have people with answers that made sense and calmed us.

I was reassured that my instincts were right; I didn’t have to keep pumping formula into his feeding tube when I knew he wasn’t hungry. Dying is a normal process. It was a relief to be able to soothe his ragged breathes with medication and procedures that weren’t trying to prolong his life, but rather give quality to the days and hours he had left.

For our family, hospice offered a new model for how we perceive death. It was a reprieve to not have to struggle with the seemingly relentless drive of medical treatment. It was a relief to focus on the quality of Jai’s existence now and provide freedom from pain and discomfort while making the most of those last moments.

Those last days–we laughed, we cried, we made memories. When Jai passed silently, beautifully from this world, we held him, we cried, we even smiled, and made memories. Hospice had done so much of the preparation that we were able to focus on our family, our love, and things that were important and meaningful to us.

We walked together to the edge of the cliff so many times that when the final hour came, I have to say that we breathed a big sigh of relief. I suppose these are feelings a parent should never have, never acknowledge, and most certainly never put down on paper, but I have learned to embrace parenthood with a truthfulness that appears brutal. I didn’t really want to see my son take his last breath. I didn’t want to know life without him. But it was time.

My children say that witnessing their brother’s death changed their whole idea of death. They no longer look upon death as frightening and unknown. Even now, Jai’s name comes into their conversation and playtime. They happily tell even strangers about their brother.

My youngest daughter won’t allow me to say, “We lost him.” She says, “Jai isn’t lost, he’s always in your heart, and my heart, and the hearts of everyone who remembers him.” His joy infuses our lives, giving us the strength to carry on.

Lisa Blackstone is an adoptive and biological mom of five children (four on this earth and one in heaven) and a contributor to Complex Child Magazine and Upstate Parents. She lives with her husband and children in Upstate South Carolina.