They say NYC is the city that never sleeps. I don’t know that I’ve been making the most of that aspect of the city, but it did make me think of other things.
This city is so big. There are so many people in a relatively small area. Buildings loom over you almost everywhere you go. It struck me as I was walking around, the huge number of lives carrying on right next to me as I walk around the sites. It also struck me that all my life, this city, and the people in it have been here, busy and going about their days. It’s a weird thing to think about, but also so obvious it feels nonsensical to even talk about.
This city, and others around the world, are humming along all the time. It’s both comforting and isolating to think of it. To think that when I was in the ambulance with Eva moving between the two hospitals she spent her first six weeks in, this city and the people in it were rushing about, catching the subway, tipping their waiter, crossing the street with throngs of other people.
It’s a strange feeling to think of that all happening when you are wrapped up in your own life in its simplicity and complexity. I’ve thought of that idea often since Eva was born. I drive past the Wellington hospital where she was diagnosed with CHARGE Syndrome and I cried so many tears and I think about how oblivious the world was to what was happening in our lives, and how oblivious I was to anything going on outside.
Right now in this huge city I know there is a mother with a three month old baby with Downs Syndrome who is too sick to leave the hospital. The baby is waiting for a heart operation and can’t leave the hospital until she has fought off the various viruses you inadvertently pick up in the hospital. The mother has had to go back to work part time, for her sanity and for financial reasons, and her baby has been in the NICU this whole time. I know this is happening to this woman and her child, because I was told by someone who knows here. But there will be others that I don’t know about and will never know about and this city in all it’s crazy frenetic energy, it’s easy to forget about the lives in all those apartment windows.
I also know there’s a family in Brooklyn with a son with Peter’s Anomaly and chromosome 22Q11.2 deletion. I know this family because they wanted to be part of my book project and may still be involved in the podcast project. I am getting to meet this family on Christmas Eve, and that makes me feel so happy, but it also makes me think of all the families struggling with something at this time of year.
When you are in the trenches with special needs diagnosis and the world is crashing around you, it’s hard to feel connected to anyone or anything. In a city like this, where everywhere you turn there is something happening, it’s easy to put your blinkers on and forget that behind every apartment door in this packed city, there is a different story. And some of those stories are sad. Some of those stories might make you want to turn away. But we shouldn’t turn away.
These aren’t mind blowing revelations I’m having. I’m just realising in real time, the vastness of our world, and how in a city like this, isolation and loneliness could be par for the course even without the special needs parenting added to it. I can’t help everyone. I’m not Mother Theresa, and I don’t claim to be. I swear far too much for that. But writing this blog and producing the podcast, does make me feel connected to other parents. So even when I’m not in the city that doesn’t sleep, I know they can hear me if they want to.
At times in my life I have turned off the news when it got too sad, or said, “there’s nothing I can do, so watching is too hard”. Not anymore. I’ve got my eyes open now and I want to see so I can both appreciate what I have, and see where I can help.