While trying to decide where to start with this series, I found myself going back to my thoughts and feelings when I first received Giovanni’s diagnoses. I was thinking that since this was presumably when everything started, that it would be an appropriate place to begin. As I started thinking more about this, I realized that it didn’t start at this point. It started much sooner. It began the day he was born.
From the first day of his life, my husband and I knew something wasn’t right. We watched our newborn son struggle to eat, struggle to gain weight, turn blue from aspirating, have tremors so violent that he couldn’t sleep. It was awful.
During his first year of life we lived in constant turmoil. We felt that our concerns were either downplayed or simply dismissed. I often think back to this time wanting to be angry, but I know that things were handled the way they were because no one knew any better. What we were experiencing with Giovanni was a group of complex issues where it was difficult to tie one to another. It is difficult to find the common denominator when you don’t even know that you have one to look for.
All throughout this period we are struggling with feelings of helplessness, anger, frustration, and fear. I spent most of my awake time crying as I felt so isolated. I was supposed to be enjoying this time, savoring each moment with my infant, as this time goes by so fast. Instead I spent this time worrying about why he couldn’t eat; why he was having violent tremors; why he had limited use of his left side; why he choked every time I fed him. I lived each day fearing that something horrible was happening to my precious son. I feared losing him.
Two weeks before his 1st birthday is when we finally found the common denominator. The MRI revealed that he had two rare neurological conditions, Periventricular Heterotopia and Porencephaly. We finally had some answers yet I didn’t feel relieved in anyway. We were now entering into uncharted waters. Before his diagnoses we were lingering close to shore, while there were no other boats in the immediate vicinity, we could see some off in the distance. While we were isolated, we knew that we weren’t alone. We were now in the middle of the ocean with giant waves crashing down on our boat. There was no one else in sight, no one to come to our rescue. No one could help us. It was completely up to us to navigate the waters and keep our boat afloat.
It wasn’t just the fact that we just received two rare diagnoses or the fact that there wasn’t much information out there on them. It was the fact that our worst fears were confirmed. Our son had something very real, something that was going to affect him for the rest of his life. We had transitioned from living in fear of the unknown, to fearing the known. There were so many unanswered questions; Was he going to ever walk? Would he be able to talk? Would he suffer? Would we lose him?
It is so hard for me to put into words all of the feelings I experienced over the first several months after receiving his diagnoses. I felt betrayed. This wasn’t the way it was supposed to be. I always imagined watching my child go off to school, getting a college education, getting married, having children of his own. I would daydream of my life 30 or so years from now and what it would be like. I imagined myself visiting my son and his wife, playing out in the backyard with my grandchildren. I imagined all of the Holidays together where we would sit around the dinner table talking about everyday life, enjoying the company of one another. In a matter of a 15 minute phone call with the neurologist I learned that I had to revise all of the hopes and dreams I had for Giovanni. How would things look now? Would he even be able to go to school? Would he ever become a productive member of society? Would he even still be here?
It is at this particular point that these feelings of betrayal started becoming masked by denial. Denial has been a huge part of this and is worthy of its own post so I am going to stop here.
What I want to leave everyone thinking about here is the concept of empathy. Learning about any difficulty or problem in your child’s development comes as a tremendous blow. I can tell you that the days, weeks, and even months following his MRI were a complete blur. I was going through life oblivious to my surroundings. While I may have seemed like I was handling thing well, I was not. My entire world, in a matter of a short time, came crashing down. I am sure during this time, without even realizing it, I offended someone or even outright hurt someone. None of this was intentional. My only thoughts during this time were around making sure my son was ok, and trying to understand how this could be happening. Next time a stranger bumps into you, never realizing they did so, or someone looks at you with a blank stare when you go out of your way to acknowledge their presence, just try to imagine what just happened in that person’s life. Are they truly a rude human being, or did their world just come crashing down on them.