Four years later
May 2016… Babies
It was just one week. One regular looking week on the calendar - but it was anything but. Four years ago this week, the trajectory of my life, which I had been meticulously planning and mapping, was blown off course. It wasn’t just a small nudge but three hurricane force blasts. At the time I could feel their sudden impact but there is no way I could have grasped the ripple effects they would have on the rest of my and my family’s life.
The first siege to my carefully laid plans had been building for several weeks starting with Adelaide’s first seizure… well, first seizure that we know of anyway. A few days later she was hooked up for an ambulatory EEG (which basically just means she had an EEG at home). The results from the test were not clear and her neurologist asked us to come into the hospital to repeat the test with video monitoring. The results from that EEG were given to us on Monday: our seven-month-old daughter had epilepsy. Now, Adelaide hadn’t exactly been developing normally up to this point. Our first appointment with her neurologist had been when she was four-months and had been diagnosed with hypotonia (low muscle tone) and eventually global developmental delay. She had been enrolled in early intervention therapy services through the state and we had been checking off a list of diagnostic tests ever since. But the fear of witnessing a seizure, the utter lack of control to stop them and the anxiety of waiting for the next one to happen was entirely new. At the time, of course, I thought we just needed to give her a pill to make the epilepsy go away so that we could get to her other, more pressing, health concerns <insert eyeroll emoji>.
Three days after Adelaide’s epilepsy diagnosis was my last day working for a prominent restaurant group in New York City. After five years I was leaving the department I had helped build and moving on to a new restaurant group for a promotion and a raise. It was bittersweet to leave but the new position was going to be an exciting challenge. While out for a celebratory dinner that evening with my colleagues, I received a call from Miguel. For the last three weeks he had been auditioning for a little play called Hamilton and it was that day he received the call that he would not only be taking over as the Hamilton alternate (going on once a week) on Broadway but he would then go on to lead the first production outside of New York City in Chicago. I mean, by his third of what would be four auditions, we realized this was a possibility, but in this biz you never get your hopes up too high. This particular blast I felt acutely. I vividly remember that Thursday night, a little tipsy, sitting on the commuter train home to New Jersey realizing I would have to tell the new job that I would not be able to start the following week like I had planned because my family was moving to Chicago so that my husband could play the lead in the hottest show in musical theater history. With one call I went from being our family’s primary breadwinner to a stay-at-home mom. But, also, MY HUSBAND WAS GOING TO BE HAMILTON!!!
The third hit that week came on Saturday via text message. One of my dearest friend’s mother had died. Courtney and I had become friends in high school, both gone to colleges in Boston then moved to New York City afterward. I adored her mother, Lori, she was artsy and silly and brilliant and also happened to have several rare diseases that would take her from this world entirely too soon: one being mast cell activation syndrome. Just weeks before, as I was in the early days of navigating the medical world with Adelaide, Lori and I were exchanging emails. It was in those emails that she gave me the best piece of advice that I would ever receive: “have the fight”. It would become one of my guiding principals whenever I made decisions regarding Adelaide’s care and was an inspiration for starting this blog. Courtney lost not just her mother, but someone who understood the intricacies of the rare diseases they shared - neither can be replaced. We would lean on each other heavily in the years to follow as we struggled to grasp our new normals and especially when Adelaide was diagnosed with mast cell activation syndrome herself. Just as we were beginning our medical odyssey, Lori’s had come to an end. It was a very blunt lesson teaching us that science did not have all the answers. Geez, world, way to be subtle with the foreshadowing.
May 2020… Four years later
Three events in one week, four years ago that led me to sitting in front of my laptop writing this blog today. One took my daughter from me, I gave up my career for the next, and lost a bright guiding mentor in the last. But I was also gifted empathy and introduced to a community of some of the most amazing people I will ever meet. Fell in love with a city and made lifelong friendships. I was given the opportunity to find my true passion (which was NOT in hospitality) and the financial security to pursue it. And I was brought closer to a friend and confidant without whom I would not have been my best self to care for Miss A. Who also taught me that I’m not alone in these crazy twists and turns of life emotionally or realistically. Of course, I'd give up all the good to have Lori and Adelaide back. But until cures are found and time travel is an option I’m just going to have to settle for the good that came out of that week four years ago… and maybe hope for less eventful weeks in the future.
