The Curtain Closes

I remember sitting next to my mom  in her ICU hospital bed on a Thursday night in late May almost 8 years ago not knowing that would be two nights before she died, something neither of us were expecting.  As we sat in the weird hospital world where time doesn't exist and days and nights are only defined by nursing shift changes, we were trying to figure out what happens next, what care she would need at home as she fully recovered and my cell phone dinged.   A text came through from my dear friend Kelly. A few days earlier her 9 month old daughter, Miss A was diagnosed with epilepsy after having her first seizure (that they knew of) and both I and my Mom had been trying to help her navigate her entry into the very complicated rare disease medical space we too lived within. I know after the ding we both paused hoping all was OK with Miss A and yet as I opened the text I said "OMG.”  It read, "So, looks like Miguel is going to be the next Hamilton in the Chicago production of Hamilton!" I read it to my mom and we were both so ecstatic that in that moment we just. for a second forgot about our own reality.  It was incredible news and I asked a flurry of questions  about what this would mean and when they had to move and on and on. The news brought such joy to us both especially my Mom and we spoke of it often  over the next couple of days that she was still alive.

I am pretty sure if you told me on that Thursday night in late May all that would transpire in almost 8 years since we got that text I would never have believed you.  I never would have thought both my Mom and Miss A would have died, or that Kelly would become one of the bravest and fiercest rare disease advocates I know, that she'd have an incredible blog and also write a best selling book. I also never would have thought  that Miguel would perform as Hamilton over 2,000 times including his final 3 years as Hamilton on Broadway.

But those are the big moments - the ones everyone knows  and sees.  What I truly couldn't anticipate were the hours of texting and talking Kelly and I would exchange each week for all of these years as we helped each other navigate life and grieving and somehow pushing each other through our hardest days of our lives together. These are the texts that we spoke freely and screamed and cried in, where we said the words you can't say to anyone else because we knew we'd never be judged, the texts we shared our successes in and happiness in and the texts we just sent to remind the other was still there. Texts sent at any hour of any day is part of how we both survived.

Flash forward to this summer as we finalized plans to see each other on the weekend and as my text dings I read something like "when we come over we'll tell you more but Miguel is stepping down as A.Ham."  And so they shared their news as our kids laughed happily in the background swimming and we were excited for their next phase.  Now in just a few short days the final performance is almost upon him and yes you better believe we'll be in attendance.

But what I was not expecting was the emotional cascade of feelings I have been met with a few days before his final curtain call.  Suddenly sitting in my living room I am taken back to that night in the ICU when my phone dinged and my Mom and I delighted in the news and I start to cry. As Kelly says in her book (Normal Broken) “grief is weird” and just like that it comes on.

As I have tried to unpack the feelings it really is not about Miguel's ending this incredible run though we are so proud of him, but how interwoven these life changing moments really have become. I realized that  finding out that he would be Hamilton was one of the last times my mom and I would have shared joy. Even when we were living through the unimaginable and scared this news gave us so much hope and delight to know dreams can still be realized and what a gift that was. That even in the darkest times we had something to be happy about and take us out of our own reality even just for an instant as we celebrated this moment.

But it was also a turning point in all of our lives that week in May, when our shared universes collided at the same time to change our lives forever and in ways we could never have predicted and yet here we are 8 years later. We made it - but we did it together. And maybe that is why it all happened in that one week, somehow the universe was forever linking us together and giving us to each other - a gift we didn't know we needed at the time but is part of how we both survived. A gift I will always be grateful for. 

I suppose it makes some sense why as we cheer as Miguel takes his final bow it will feel like this part of this journey we've been on together since that fateful week in May is coming to a close. It was a bumpy ride with our highest highs and lowest lows and the ending  looks different than we ever imagined but we still reached the finish line. We have long learned we can't even pretend to  predict the future or know what curve balls life may throw  at us next but I take great comfort in knowing that even after the curtain closes, no matter what life brings,  our friendship will carry us through - one cell phone ding at a time. Ding!