That's what friends are for?

A wonderful part of this painful journey has been the creation of new friends like Yuka whom I met via Erica speaking to Simon at the UK CHARGE Foundation in the very earliest days when I was unable to digest too much more about CHARGE, lest still, to actively seek out parents in the same position. The irony of this is the experience at the CHARGE conference, in a room of 600 other parents, much like ourselves, who've shared such a catastrophic event. Yuka and her husband Scottie vowed to spend their Wednesday date nights with us in the NICU. It was such a tremendous offer of support from someone I'd only just met. Other friends, like Cassandra and Vivian have been forged by a shared experience of boarding for months in either the neonatal or paediatric intensive care units of Children's. And then there are fellow CHARGE parents, and the CHARGE kids themselves. Friends from ivillage Fertility Issues. Dear friends back home or in Australia who have helped me through the darkest and shared the brightest of days. You've commented on my blog, you phone me, I know you would visit us in hospital if you were closer. My family are my great foundation and I love them so dearly. It's quite unbearably lonely when they leave.

And then there are the nurses, respiratory therapists and Drs who have cared for us almost as much as they care for Reuben. They sit and listen to us and allow us to express how we're feeling. There's empathy, laughing. It's become like a second home. They go over and above.

And yesterday, during one of those chats with the nurses, whilst I sat feeling pretty sad and alone that Anne-Marie and Aurora had left after a mammoth period of support from family, the nurses noted how monumentally absent from the bedside my friends have been and it's a striking recognition that, whilst support floods in from the around the World, my friendships forged here in LA have dissolved to nothingness.

So a part of this painful journey is the realisation that people you previously shared time with are just not there when you need them more than ever. It would have meant the World to offer active help, to offer to sit with me for an hour, to bring over something to eat. It just doesn't seem that much to ask for, a little compassion, empathy and active help. I guess I just can't get my head around that. Most of the friends in LA haven't actually met Reuben.

I was given an opinion quite early one when this issue first started to bother me. When you're dealing with grief, people either don't know what to say, and chose to look the other way, or they acknowledge the issues, but are very glad it's not happening or could possible happen, in their World, particularly when they are pregnant or new mums themselves. Thus the feelings of isolation you get from experiencing a newborn with such medical complexities are only compounded. Everyone wants to visit a newborn, you're bombarded with visitors so much so that you have to limit them. That's what I was lead to believe. Except, that doesn't quite apply if your baby isn't healthy. You don't hear the initial CONGRATULATIONS, you get instead, the SORRY.

Never has the adage A Friend In Need seemed so poignant.

There isn't a need to comment on this post, it's just, for once, a clear expression from me that I have no space in my life for fair weather friends. I can now finally put this matter to rest. It's been a cathartic experience and that is the purpose of the blog after all.