One thing that has become abundantly clear, Steve and I are an anomaly in our world.
Most of the parents I speak to live in hiding. They have isolated themselves from all their peers and even family. Some people have told me that they have told their friends they have “moved.” Families just disappear into the night. “The Smiths moved to Boston.”
“No one can understand” is often what I hear my fellow parents say. Or that when they did tell people they cared for a minute and then we’re on to the next thing.
All true. I nod. That is true. This is a long journey and yes people have their own lives.
But I disagree with the bigger picture.
Yes, there will be a bell curves, waves. Interest in your child will wane as issues for others arise, but by no means are they not there for you. It’s all the same. All the wishes they are fighting the same thing in the end.
And I write about it today because yesterday I heard of another person in hiding. These people in hiding now come to Steve and me. They tell us their secrets and this is not the first. There have been many and I sadly know there will be more. They ask us for medical advice, but more than anything our secrecy. We are keeping a lot of secrets.
But all I want to say is…this is not a secret, but its not my place…so I don’t.
This is a disease that is part of every soul on earth. Its in all of our bodies. This is not a YOU fight. This is a WE fight.
I guess we all cope in different ways…who am I to judge?
But I do. Not to judge, but more to help. I hope that’s alright.
I can understand people wanting to be alone with their thoughts. Want to be just focus on what is right in front of them. I get that. No distractions.
But yet I don’t get it, because I know the other side. I know what it can be.
It reminds me of a conversation I had with a friend recently. She was commenting on how in all these craziness, I’ve also found some peace, some life perspective. I’m having my own Eat Pray Love she called it.
But I disagree with that analogy, which by the way was a book that I loved. I know better now. Her message is hers, but I think its short sighted. Finding “yourself” or finding “strength” and “hope” isn’t done in isolation. You don’t run away to Italy and eat pasta. Nor do you sit in silence in India.
Nope. I’ve found a different truth.
Finding yourself is in the mirror image of others and that the strength and hope that you are looking for is right in front of you, it is the power of community. They will be there for you and you will be there for them. Sure some may let you down, but why let a few discount the others? And why deprive them of turning it around?
I also believe that hiding it in some ways is selfish.
I know that I feel fulfilled by helping others. The best part of my life has been in the service of others. There is a high there. This feeling of being closer to something bigger than yourself. I stopped today in busy life to smile at an old man who seem genuinely touched that I noticed him. I reached out to a friend who is having her own battles. I spoke to and about her for my entire 25 minutes alone. Sure you can say that was so selfless of me, but trust me I got more out of it than them. I learned a few things and it felt good. It made my day better. It changed my outlook. I made some impact. It makes you feel powerful.
So let people show up. Just give them the chance. Let them have that high.
This is my advice to all those in hiding.
On that note…
Monday at 1PM I will be going to the river. This time the East River as we will be at the hospital. I go there to say Jacob’s name and to watch the river flow. I sometimes listen to music. I have no agenda. If you want to join me, please do. I cross the bridge to the other side of the FDR on 71st. I often sit on the 2nd bench. It will be obvious once you are there.
If you can’t make 1PM please don’t worry. There is no such thing as time in my world. Your thoughts and prayers are welcomed ANYTIME and the surgery will be all day. People have requested to come pray at the hospital. Of course, anyone is welcomed. 6th floor at 1275 York Avenue. I have no idea what I will be like. I can’t promise a lot of conversation (or any). I may just want to write or read. I have no idea, but I know this.
The day will unfold as it should because I have you.