I was hovering emotionally above rock bottom and getting through each day on the fumes of strength that felt long depleted. It was during this time my friend Wes stopped by.
During our conversation, he told me about a conference for parents of kids with disabilities. He and his wife planned to attend, and he suggested I sign up.
Wes and I became friends through the martial arts, and I always enjoyed his visits. I don’t know if he has always been compassionate, but he has struck me that way from the first day I met him.
He understood some of what I was going through. Wes and his lovely wife, Connie, have three children, two of whom live with ASD — Autism Spectrum Disorder — currently affecting one out of every sixty-eight children in the United States.
I appreciated Wes checking in on us. His concern was obvious and genuine. He took the time to ask how Josh was doing, which I was grateful for, but he also asked how I was coping.
He acknowledged the difficulty parenting a child with profound challenges due to his brain injury. At this point, I wasn’t doing so well on the inside.
While our children’s challenges differed, we shared an undesired bond of heartbreak. When your child deals with extra struggles that transcend the everyday challenges all children face growing up, it’s an entirely different dynamic.
The Parents Encouraging Parents conference Wes mentioned is put on annually by the Nebraska Department of Education, Special Education Division. Wes and Connie had known about it for years but had yet to attend.
I told Wes I would be interested in getting some information, and they forwarded me a brochure.
I glanced at the list of topics covered at the conference, and there was one that nearly jumped off the page at me. The lettering seemed bigger and bolder for some reason, and my eyes were immediately drawn to it.
The title of that session was Good Grief.
It struck me as a slightly odd title. Maybe a tip of the hat to the Charlie Brown cartoons. I was wondering if it was speaking to what I was feeling. I knew that I could feel myself fading mentally, physically, and emotionally.
The only name I could put to that feeling was Grief. And Grief seemed to be draining the life from my soul.
At the time, I wasn’t aware of how important it was to take good care of myself. I couldn’t see how vital it was. I was blinded by my desire for my son to be healed.
Maybe a different word would be better, but I wanted him whole again.
Not that I couldn’t love him the way he was. I did.
I loved him every bit as much as I had the first time I held him, but I was obsessed with Josh recovering as much as he could, and that came from a place of fear as much as desire.
My heart was holding out hope that he would have a complete recovery. That one day, he would play high school football, go on to college and get a degree, and grow up and be a good man, husband, and father.
The only thing that kept me putting one foot in front of the other was that I believed Josh needed me to be there. It was his only chance to get better.
Life on Earth is incredible and, at times, awe-inspiring. The beauty of seeing something as commonplace as a sunset can be burned indelibly into our minds and last a lifetime.
But so can the scars that come from being a target at the hands of cruel and mean-spirited people.
I didn’t want Josh to deal with the ugliness that many disabled have to endure simply because they were born a certain way or suffered an injury in unfortunate circumstances.
I believed this conference showed up on my radar for a reason; I had to finally admit that I had become dangerously depleted of energy.
And with that knowledge, the fear that I couldn’t do what was needed to help Josh get better haunted me constantly.
All my energy was going out, and I couldn’t recoup enough stamina to get the needle above empty. Every day I went to bed drained, and I woke up drained.
A quiet darkness had settled around me.
And beyond making sure Josh had everything he needed, I needed more energy to care about much of anything else. I needed help. And I hoped this conference would be the answer.
By the time I got the brochure, I only had a day or two before the cutoff date to get registered. I was concerned, so I called the number listed instead of filling in the form and risking being late. I was desperately hoping somebody would pick up the phone and I would be able to attend.
As I mentioned earlier, it felt like the energy was leaking from my soul. I felt incredibly anxious about getting to this conference.
After several rings on the other end of the phone, I was bumped into voicemail, and I left a message with all my pertinent information.
The pain you feel as a parent when your child is hurt to the degree Josh was, can be overwhelming. One day he was running around, laughing, playing, jumping on the bed, and pretending he was a ninja — an average three-year-old boy.
The next day he was fighting for his life, unable to breathe on his own.
Months and years later (seventeen and a half years, to be exact), he is still fighting to be capable of doing things he had mastered when he was three. The gaps of what was lost have never been filled.
I often felt like I was hosting an emotional roller coaster inside of me. If you spoke to those around me at the time, they might have told you the roller coaster wasn’t contained inside me.
Like the thrill rides in the great amusement parks in America, my emotions were often unpredictable. The abrupt changes often scared me of what was happening inside me.
The weight of the Grief would often pin me back in my seat to the point that I couldn’t lift myself from the chair.
Other times it felt like the Grief was accelerating me down a giant slope straight toward the ground, only to be thrown into a curve where, at the last second, there is a direction change, but the intensity of the energy you feel doesn’t change.
It points you in another direction, feeling sick and wishing you could get off the ride, but you can’t.
I received a return phone call a day later and was informed I would be added to the list. With that little bit of information, I immediately experienced a sense of relief knowing I would be able to attend.
And along with the relief came hope. I hope to find answers to how I was supposed to manage the Grief I was feeling.
When the weekend finally arrived, I made the two-and-a-half-hour drive to the event site, and after checking in, the conference kicked off with a great dinner, an outline for the weekend, an introduction of the speakers, and going over the ground rules.
We were then informed that the numbers on our name tags represented the small discussion group we would be assigned to.
Surprise, surprise, surprise!
We were dismissed to our respective meeting places for our first Small Discussion Group.
I was shocked and feeling newly overwhelmed.
While filled with emotions, I wasn’t sure I wanted to air them out in public. I didn’t know these people, and besides, they had their challenges to deal with.
The first discussion group was a mixture of silence and one or another of us opening up a bit about why we were there. I told them I was a single dad of a boy with a Traumatic Brain Injury and was looking for a way to deal with the Grief. Maybe not profound, but it was the truth.
The next day started with breakfast, followed by a session on IEPs — Individual Education Programs — and how to use them best to get positive results for your Special Needs Child at school.
It was a long session that seemed much shorter because the two ladies from the Nebraska Department of Education had a finely tuned presentation with well-placed humor to keep it loose.
We broke for lunch, and then it was off for the session I had come for, Good Grief.
This session was two and a half hours long, and the emotional toll it took on me left me feeling like I had spent hours in a boxing ring.
The stories told by the three couples were heartbreaking. They were extraordinary expressions of their own experiences with Grief and other emotions that come with the sense of loss for that hoped-for child.
Their stories began before the diagnosis and crept forward to their current life. One spanned decades, as their child was now approaching thirty.
Frequently, the speakers — other parents whose children were living with disabilities — were overwhelmed with their emotions. As they told their stories and the photos were displayed on the screen behind them, their pain was brought back into the present.
They would have to stop speaking briefly as they attempted to regain their composure and control their tears from flowing fully.
Throughout the session, you could hear soft crying and the sniffling that comes with it, as many parents in the audience could feel the pain of those speaking.
It was a pain many of us knew too well.
I watched as many participants reached for the tissue boxes placed at each table before the session started. The conference organizers had been down this road before and knew what would happen while we listened.
It was a profoundly moving experience for me. I was there for the specific purpose of discovering a way to deal with my pain. I learned in that session that it would likely never go away completely.
The grief cycle laid out by Elizabeth Kubler Ross in her book Death and Dying looks like this: Denial, Anger, Bargaining, Depression, and Acceptance.
It is a valuable tool and helps many people try to make sense of what is happening inside them. Unfortunately, not everyone who experiences Grief ultimately achieves acceptance. Matters of the heart frequently deviate from the ideal and chart their course.
I understood through the conference that I relived the loss with each new milestone that Josh didn’t meet. I would be reminded of the accident while watching him struggle to eat an ice cream cone, catch a ball, or work so hard at remembering that c-a-t spells cat.
The solution, if you can call it that, was a slightly different model than Ms. Ross put forth. It consisted of Denial, Anxiety, Fear, Guilt, Depression, and Anger. All of which I experienced regularly. All of which can be experienced in rapid succession, in any order you can dream up, and often simultaneously.
Each day brought into my current reality the ongoing loss and the corresponding emotions that went with it. I wasn’t crazy, and I wasn’t falling apart, no matter how much it felt like I was.
Beautifully, I came to understand that I was normal. My feelings of sadness, loss, frustration, and disappointment were all normal. They were what I was feeling, which was as normal as life. The ache in my chest and the emptiness I felt inside didn’t encompass who I was or who I had become.
Those parents who shared their stories gave me a gift that weekend.
It wasn’t the gift of a child who would one day be able to do all that he or I might wish for him.
It wasn’t the gift of a miraculous healing that would allow my son to learn to read and do math.
No, the gift they gave me was the willingness to relive their pain so I could come to terms with mine.
That gift gave me hope and encouragement. It gave me the energy and the will to press on and push forward with a renewed purpose and a better understanding of myself and the road ahead.
This post was previously published on medium.com.
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