Jason's Connection is excited to announce our joining of Tom Klinedinst, father to Tyler. This blog series is about his journey with his son, Tyler, and is intended to provide a voice to caregivers, especially those with special needs children. To read more from Tom, visit his blog "My Walk With Tyler."
My wife Robin, and I, were young when we got married. We were barely any older when we found out we were pregnant with Tyler. Like most parent’s, we imagined all of the cool things: walks in the park, learning to hit a baseball, riding a bike, and just having fun. In one sobering moment, the entire world screeched to a halt. All of those dreams had suddenly turned to dust.
After hearing the doctor use words like “will not survive”, and “vegetative”, I had no idea what to think. It’s a feeling that nobody in the world should have to feel. It was like my stomach had turned upside down, and my head felt dizzy. Suddenly everything in the world was different than it had been before. I wished it was a mistake, or a bad dream, or that there would be some miracle that would reverse the course we suddenly found ourselves on. We knew our world had changed forever, we just had no idea to what degree.
Our local doctors sent us to the University of Maryland so that Tyler could receive emergency surgery right after being born. We held our breath with every appointment leading up to our trip, hoping to find that he was still alive and hadn’t gotten any worse. At the same time, there was an apprehension of what would happen if he did make it to birth. Would he be unable to function? Would he suffer with physical ailments and deformities? The anxiety was overwhelming.
We arrived at U of M without a clue of what was to come. I was happy to be in the comfort of doctors who had lots of acronyms on their white coats. We would simply leave everything in their expert hands and hope for the best possible outcome. I may have walked in thinking that way, but I walked out with a completely different mindset.
We were under the impression that Robin would undergo a C-section right after we arrived. After all, the sooner Tyler was brought into the world, the sooner he could have surgery to relieve the pressure around his brain. The doctor who was assigned to her there had a different idea. Robin was to be induced so Tyler could come naturally. It didn’t feel like the right course of action to me, but I didn’t object. I was just 21 years old and I didn’t know as much as these other people. After trying to induce her for 2 days, she was exhausted, and Tyler was still in as much peril. I felt helpless.
Suddenly, something within me clicked. It was up to me to understand everything happening to my wife and son. It was up to me to make sure their best interest was cared for. There were lots of people called MD and PHD in the room, but it was time for DAD to make his voice known to the team too. I finally cornered the doctor (literally) and said we needed a new plan, and that plan needed to be getting my wife comfortable, and my son born. He huffed and he puffed and he made me agree that I was acting against his orders. But he complied.
I learned a lifetime of lessons in those moments that would shape the last 25 years. Mainly, it’s up to me to be involved in all team decisions, and to represent Tyler’s viewpoint. And that a degree in DAD is just as important as PhD. Unless both sides are working together, something won’t happen as it should.
Seven days later we left with our baby boy. And even though I walked in as a naïve 21-year-old, I walked out as a husband, father, and advocate. Tyler’s walk through life had begun, as did my own personal journey.
My Walk With Tyler is about my journey with my son, Tyler, and is intended to provide a voice to caregivers, especially those with disabled children. To be fair, I am not a therapist, or an expert on special needs, nor would I intend to pretend to be. My goal is to share all of the triumphs and heartbreaks that we have been through, especially during this transition into Tyler’s residential placement. Because there is no “manual” for caregivers to follow, we must help each other find the way. My hope is that through my advice, stories, and experiences that the reader can find nuggets to add to their own journey. To read more from Tom click here!