I worry about this every day. How will my special needs son react as his life unfolds and those close to him die?
This lingering anxiety came riveting home to me not too long ago when my brother-in-law, who was one of my son’s favorite uncles, died. They were together a lot. My brother-in-law Andrew was a formative influence on Trot, who is 21 years old.
Even at the hospital, in the immediate aftermath of Andrew’s death, I was thinking about my son.
My son has been challenged by an array of special needs since he was diagnosed at age three. I had taken Trot to the hospital with me and he was there when I learned of Andrew’s death. I had to break the news and could already feel a gulp coming on. What would I say?
My fears were these: Would Trot fully comprehend what had just happened? How would he absorb it, both immediately and over the long haul? What were the right words? Would this experience transform an essentially happy young man, despite his challenges, into someone burdened, anxious and afraid?
He and Andrew clearly shared a bond; I believe it was a bond of shared vulnerability. Each in their own way struggled. Andrew, in his 70s when he died, had struggled with illness for 20 years. Trot knew him no other way; Andrew, I know, had a soft spot in his heart for Trot, who struggles with his own challenges every single day.
And not only were Andrew and Trot close, Andrew lived very close to us. So my wonderful brother-in-law and my wife’s sister were a constant and uplifting part of our lives. Even with his challenges, Andrew provided us with strength when we needed it and there was a closeness between our families.
Andrew would spend a lot of time in bed because of his health struggles. And Trot would lay there next to him, watching TV with one of his favorite uncles — whether Andrew wanted to watch it or not. Trotter would just plop himself on the bed next to Uncle Andrew, ask him to turn on the TV and that was there special time together.
As I headed toward Trot who was stationed in the hospital waiting room, preparing to share the news about Andrew, I thought about another question. A question that hovers over me all of the time: How will my son react as his life unfolds and more of his loved ones, including his parents, pass away?
These were not spur of the moment thoughts. They were reflections of the struggles and anxieties that have lurked within me for years, and now, as I headed towards Trot, I had to come up with the right words at that very moment.
“Trot, I have something to tell you,” I began. “Uncle Andrew’s in heaven.” I took a deep breath, and continued, "He’s now with Jesus. We will miss him.” And then, I added, probably to comfort myself as much as Trot, "But we’ll see him again one day.”
Trot, who usually has a broad smile on his face, had a bewildered look. Then, within a minute or so, he started making a low-key squealing noise and clapping his hands. I was a little startled. My son seemed actually happy upon learning of his uncle’s death. But I instinctively reminded myself that I know my son, and concluded he was happy for a reason.
“That’s great Uncle Andrew is in heaven with Jesus. I’m so happy for him,” said Trot, believing that heaven was a better place for Uncle Andrew and is a better place in general. There are no sick people in heaven; there are no sad children; there are no homeless people wandering the streets; there are no abandoned cats and dogs; none of this exists in Trot’s view of heaven.
The beauty and rewards of having a special needs child often come from the way in which they interpret experiences. They think about things in such simple ways, often capturing a beauty and a poetry that escapes those of us whose minds are constantly cluttered.
I was worried if Trot would even be okay once I told him. In fact, he was more than okay — he has the strength and the religious faith and such a powerful belief in God, that it was Trot who began providing comfort to other members of the family.
As is often the case with a special needs child, they surprise you. And invert the experience in a way that helps you understand them more deeply and life more deeply.
So what now of my thoughts about Trot’s life as it unfolds and he encounters more death?
I can’t predict — I learned that long ago — but I can hope. And in Andrew’s passing I’ve been given some hope — a sense that my son, because of the power of his faith, compassion for others and caring heart, will be able to navigate and bear the burdens of loss that life will throw his way.
What makes me say this? A feeling, and a sense within this young man that there is a strength and optimism that will endure.