Jul 3

Jul 3 Dear Chicago,

Miguel and I stood in a bar, in the city where we had met and grown our family, surrounded by some of our dearest friends. It was our going away party in New York City and the night was coming to a close. We thanked everyone for coming out, for years of friendship and reminded them we would only be gone for one year - that was four years ago. How could we have known how this city would steal our hearts? Or how we would find a home here in all the ways that matter? I truly don’t think there was a more-livable or better-suited city for our family, during this time in our lives, than Chicago.

Sunday, September 11th, 2016 we saw the Chicago skyline for the first time as a family. The New York Giants vs the Dallas Cowboys football game was playing on the car radio, Miguel was driving the last leg while I was sandwiched between two car seats in the back of our SUV comforting a teething Adelaide and entertaining a restless Jackson. I remember those early months so clearly. To be fair they were jam-packed with memorable events: Hamilton Chicago opening night, Miguel’s first pitch at a Cubs game, national anthem at a Chicago Bears game, Adelaide’s first birthday shortly preceded by her first ambulance ride…

Our Chicago life was certainly amplified by our extreme experiences - we crammed a lot of living into four years. It is almost surreal that our time here was bookended not just by Hamilton but also our daughter’s life. Except that it was real. So. Very. Real.

I’m not sure I will ever fully grasp how fortunate we were to call Chicago home these past four years. As I began writing this post it started to become a massive thank you letter to individuals and companies who supported us and showed us kindness and love - especially since I never got around to those thank you cards after Adelaide passed. The gratitude list is long, however, unless you are the one being thanked, I get that it is not the most interesting read. Also, the pressure if someone is accidentally, (and publicly) left out - eek! So, I’ll spare us all and put it on myself to get those thank you’s out - privately.

That said, there are a few thank you’s that do need to be public. At the forefront of this gratitude train is the incredible medical care Adelaide received here. As her needs changed, she was cared for at three different local hospitals but we found our true medical home at Rush. It was her team of doctors there that communicated across specialties to give her the best quality of life she could have had. They never gave up, always researching new options, tests and treatments. Hunting down new studies or other doctors that might be able to offer assistance. With their help, we got at least one extra year with our Adelaideybug. Because of COVID, we will not be able to personally thank these doctors, nurses, social workers, technicians and so many others that were once a part of our daily lives. I hope they know what they mean to us.

If that was all we got from Chicago, it would be enough, but that barely scratches the surface. When you have one child that requires so much additional care it takes a village to help care for your other child. I could not have dreamed of a better public school experience than what we received at Pulaski. From the teachers to the families to the administration that embraced our epilepsy advocacy with open arms, Jackson was always looked after and wherever he went compassion and empathy were waiting for him.

Then there is my family at CURE Epilepsy, who I would be lost without. The staff that works tirelessly to fund and produce research, and the families that I’ve met and connected with that will forever be a part of our lives. You all gave me purpose and drive. I don’t know where or who I would be without all of you.

But perhaps most importantly, I want to thank Chicagoans themselves. You came out in throngs when Hamilton arrived, enthusiastically supporting the production. Then, when you started to learn more about our family you dug in. Supporting our many fundraising efforts, sharing our story and reaching out with understanding, compassion and support. The many emails, DM’s, and gifts at the stage door lifted our spirits during the most trying times. Never once, in the last four years, did I ever feel like I was on this journey alone and that is a fairly remarkable statement to make.

Friends who had spent significant time in Chicago told me it was a special city. Those that had moved away missed it desperately. In just a few days our family will follow suit. I’ve been resistant to thinking of our time in Chicago as a chapter of our lives that is coming to a close. In part because I’m in denial and, also, because how do you turn the page on your child? But what I’m trying to learn through my grief is that there is no shame in wanting to keep living after great loss. Adelaide’s memory will be better secured through our efforts at funding research and supporting this community that so fiercely supported us than by me remaining paralyzed in her absence. So, yes, we are moving on to a new chapter of our lives and it is really effing difficult but we will come back and visit this chapter in memories and visit this city, our home, Adelaide’s home, as frequently as we can. We are so grateful to have had this time to share this incredible city with you. From the very bottom of our hearts, thank you…