It was one year ago today that we learned that our sweet, beautiful, adorable, almost-five-and-a-half-month-old baby boy had something wrong with part of his brain. I had never heard of ‘ataxia’ and I don’t think I even knew that there was a part of the brain called the ‘cerebellum.’ A year ago today my world was turned up side down like nothing I could have ever imagined. It was just Finn and I, and our pediatrician, alone in the exam room on a cold and cloudy March morning. When I heard the words that there was something wrong with Finn’s brain, it was as though the floor under me gave way and the walls around me had crumbled. I immediately felt my stomach twist and turn and my heart thrummed louder and louder until it was almost deafening in my head. Something was wrong with Finn’s brain – my worst fear had just been realized. I thought I would throw up or faint or explode or just disintegrate. Nothing would ever be the same again. I had to call my husband at work and tell him the news. I had to call and tell my mother, who lived thousands of miles away, but I knew she would be here the next day (which she was). I had to call and schedule an MRI at Children’s and deal with saying the words to someone else, to a stranger on the phone. This was really happening . . . I had to think and communicate without sobbing (and without exploding or disintegrating). I had to stay strong and focused, like never before. But as soon as the doctor said those words and as soon as we got the news the following day that Finn had a vascular anomaly in his brain, I could never hold or look at or think of Finn the same way. After that moment, I loved him more, and I loved him less. I loved him with the ferocity of birth and death and life itself, but part of him was broken and part of me was broken too. Neither of us would ever be the same again. Our journey, as two souls intricately locked together, had truly begun.
For the next 24 hours I was unable to eat or sleep for that matter. With some help from our pediatrician and several impassioned calls on my part, we were able to schedule an MRI for 7:30 AM the next morning. In the dark morning hours of that sleepless night, I threw up stomach bile until my throat was raw (and it was actually painful to eat for about a week after). My hands were shaky and I could barely stand I was so dizzy. My friend, who was coming over to watch Finn’s older sister, was late that morning so my husband had to stay at home and wait for her while I drove Finn in by myself. I was alone with Finn when he went under for the first time for the MRI. He struggled against the mask they put on his face and kind of choked and twitched as he was sedated. When they wheeled Finn away to the other room, I sobbed against the chest of the nurse that had put her arms around me. Where was my husband?! Minutes later he arrived. We waited 50 torturous, endless minutes to learn if Finn was going to be okay (there are always risks with anesthesia, especially in a baby) and to learn what has happening with his brain. It was only supposed to take 20 minutes. I prayed like I had never prayed before. I made pleas and deals. I begged and visualized and tried to summon every fiber of my being into manifesting a positive outcome. And somehow I continued to breathe and stand and sit and talk. But that was it. I couldn’t manage anything else. When we learned soon after they brought Finn back to us that he had a vascular lesion in his brain that was most likely causing his difficulty with vision, balance, and coordination, we were optimistic. The neurosurgeon we saw later told us it was a cavernous malformation and that hopefully it would not cause on-going or long term problems for Finn. We didn’t know at that point – of course we didn’t know, and I don’t think I would have been able to handle knowing – that at the end of the summer Finn would have surgery in a state miles away to remove what we later learned was actually and AVM, a vascular anomaly that often presents with a fatal hemorrhage. We were so unlucky, and so very lucky all at the same time.
For now, today, I am grieving and I am celebrating. I am reliving the intense sorrow and fear I felt last year on this day and the intense emotions that have been part of my daily existence over the last 365 days. The emotions that have shaped and carved me into the person I am today – someone so very different from a year ago – have undoubtedly been some of the most powerful of the human experience. The valleys have been dark beyond imagine, but the peaks have shown me joy I didn’t know was possible. So, on this day, I am giving thanks for Finn. For the simple, yet beautiful, fact that he is here with us. But beyond that I am also celebrating his incredible accomplishments and how far he has come. His perseverance and spirit are absolutely amazing! And in the peace and quiet of this moment on this day 365 days after the worst day of my life, I am also giving thanks for and celebrating how far I have come as a person. He is the greatest gift I could have ever received, and I am humbled and awed that I have been chosen to be his mother.
