In college in Pennsylvania I used to wear a Frankie B. winter coat that was waist length, bright orange with stitched hearts and lined with faux fur. It was the coolest. I gave it away after reading that Marie Kondo's minimalist book and instantly regretted it. To pair with my impeccable college fashion sense, my sophomore year college boyfriend drove a red sports car and only wore button down Ralph Lauren shirts. Fashion sense aside, he could also predict the weather. A skill I could have benefited from. With clear skies, I'd merrily trudge across campus to the library. The skies would be clear, the sun shining. Two hours later, I would walk out of the library to a complete downpour with rain slamming horizontally into my face, and I would think, "I hate this." I did not like Pennsylvania weather. When I would complain he would always say, "how did you not know there was going to be a storm? It was so obvious. It was windy."
The lesson: preparation is key, I suppose. But we are not prepared for this. I look back on things that I think did help prepare us for trying to manage this nightmare. The predominant life experience that I try to draw strength from is the memory of my mom and her death.
My mom was the most beautiful, kind, smart and funny person. She was a rock in my life and our whole family centered around her. When our older daughter Emily was born in February 2013 my mom wasn't quite herself. When Emily was a week old I asked my mom to pick up something up that we needed for Emily. She did so but came into our house exhausted, sat on the steps with her legs folded under her and sat quietly for a long time - which was so unlike my mom who would always preface stories, "do you want the short version or the blow by blow," where she could entertain for hours with vivid details and a smile on her face. On this day I thought this was strange, but it didn't register how strange it was. I was too caught up in being a new mom to think about the needs of my mom.
A couple days later my mom said she wasn't feeling well. The next day I got a call from my dad. My mom was in the ICU and had almost died the night before. She stayed in the ICU for many days, but she did get to come home. I went to visit her right away when she was released. That day driving down the street to my parents house I was so nervous. It dawned on me for the first time that my mom almost died. I was looking at the same houses I'd noticed for years, always a constant presence, and suddenly, everything shifted and was changed. Three months later, I drove down this same street again. Except this time, my mom had died. And I thought back to taking the same drive a few months earlier when I had looked at the familiar houses and trees and felt much less safe and much more scared in a world that had previously been riddled with concerns about sleepless nights and the weather in Pennsylvania. And I wanted to go back. To see my mom just one more time, to be in the same room with her, even if it was quietly. For more time.
The morning my mom died my dad called me at 4:00 a.m. and he said, "it's over." I got in the car and drove to my parents knowing that nothing would ever be the same again. It was still dark outside and everything looked different, foreign and sinister. As I approached my parent's house I saw from a distance the ambulance and firetruck that were there, with the lights flashing and sirens off, lighting up the dark sky. They were there because my mom was dead. She wouldn't be sitting in her chair and later in her hospital bed waiting to greet me this time when I walked into the house. I didn't want to go inside but I did. I knew nothing would be the same again and it really hasn't been. It's been a lot harder, sadder, and lonelier in many ways.
But still we have so much that I am grateful for. We have been and are so much more present and thankful for the many blessings that we have. Something I wish I had done more of when my mom was alive. And despite how hard this is, we continue to be grateful as we have many blessings. Yet, I can't help but wonder, will we one day look back at the day that we had two daughters, like I look back at the time when I had my mom. I hope not. There is no way to prepare for the possibility and I just push it out of my mind.
We are leaving for our second treatment tomorrow. I'm traveling with Marian and my wonderful friend Christine, also known as a lifesaver, also known as Matt Allen's wife. Paul and Emily will stay home. Thank heavens for this treatment and that Marian can access it immediately. The pain and torment that we would be in if there was nothing, or if we had to wait months and months would be crushing. We worry what will happen over the next year as the FDA will be reviewing VTS-270 for approval. We worry about how quickly other treatments can come to market as well, when will gene therapy be ready for clinical trials and will it work. Will there ever be a drug that can reverse damage and if so can it get here in time for the kids fighting for their lives right now? We worry about Marian's speech, as what we thought of as a mild delay previously has been assessed at close to a year level. Speech therapy has now been added into our litany of services to help propel her forward. We worried all day today as Marian coughed for minutes after drinking her milk each time today. Something she hasn't done in months. This is a sign of choking. A sign of progression. Or a sign of a bad day, of a cold, a stuffy nose, of something that will be gone tomorrow. We can't know until tomorrow. When we'll look out the window, assess, and try to get prepared to move forward, with our family of four intact. It feels good to be off to treatment tomorrow. We are tired and scared, but extremely grateful, and coming with many extra blankets and zofran in tow in case of the repeat airplane performance. And also thinking of my mom and her beautiful smile, who I know would be reaching out to hold my hand, give it a squeeze and say, "I'm with you all the way."