What Hospice Did for My Family in the Last Days of My Son’s Life

Death is a taboo topic in our society. I am now six months on the other side of this topic. My beautiful son, Jai Tru, had cerebral palsy, epilepsy and traumatic brain injury; he passed away at just shy of 5 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’s 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.

Early in Jai’s adoption, my husband and I had to redefine parenthood. We couldn’t protect our son from his health issues. 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 sang and danced 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.

During Jai’s multiple hospitalizations, I was often perplexed about how a person could be in so much pain, 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 surrounded by love, warmth and family. I didn’t want him dying in the florescent-filled space of a hospital bed. I wanted Jai with us and 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.

We believe that how many days you live on this Earth isn’t the primary measure of a life, that the quality of days is more important than the quantity. We feel hospice isn’t about end of life or death, but about adding life to days when days cannot be added to life. This is why we chose hospice.

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

For our family, hospice offered a new model for how we perceive death. Hospice doesn’t preclude curative treatment, but it does require different questions to be asked and different priorities to be considered. 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, cried and made memories. When Jai passed silently, beautifully from this world, we held him, we cried, we even smiled and made more 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, 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’ve 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. Our family worked hard to give him the best possible quality of life, and we utilized hospice to give him the best quality of death. Hospice helped us realize what was important in our family and what we believed was important for Jai.

My children say that witnessing their brother’s death during that time changed their whole idea of death. They no longer look upon it as frightening and unknown. Even now, Jai’s name comes into their conversation and play time. 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.

A version of this post originally appeared in Complex Child Magazine.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to community@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio.