Today, we met an amazing doctor. His name is Dr Furigay. He heads the pediatric palliative care team at our local hospital and is an experienced neonatologist. Despite James not yet being born, he wanted to meet with us and talk to us about our plan for his birth. He spent an hour and a half with us today, listening to our story, showing us the NICU at Mission (which might have been the hardest place I have ever been), and talking us through different scenarios.
He renewed my hope because of his kindness, his straightforwardness, and his obvious love for babies – all babies – trisomy 18 or otherwise.
A good friend of ours came over yesterday and spent the afternoon with myself and the girls while Jim worked. It was a beautiful afternoon. We spent time outdoors while the girls played. We had a relaxed dinner together on the porch, and then sat on the front lawn and watched the rain roll in. Everyone smiled, everyone was happy. It was an almost normal day.
We talked as well – about work, about other friends, and of course, about the diagnosis of my baby. At one point, my friend told me that I needed to get a massage, possibly a therapist, and to work on my coping mechanisms. I won’t lie. I was annoyed. I didn’t voice it, but it was there. What could she know about coping? She wasn’t facing the death of a much loved child.
Today, when we met with Dr Furigay, he had a long serious talk with us. He encouraged us to do the things we love, to find ways to cope with the stress and uncertainty and fear. Basically, he was saying the things to me that my friend had said the day before. I laughed at the end, and I told him that I must have some good friends and advisors, because he had echoed my friend’s sentiments almost exactly. Even though she didn’t know I was annoyed, I still feel like I owe her any apology.
We also talked about plans – labor, delivery, afterwards. And what he emphasized over and over again is that we cannot – absolutely cannot – know what is going to happen. There are so many scenarios, so many possibilities, that planning for them all is not possible. He encouraged us to not fear the uncertainty but to embrace it so that it doesn’t swallow us. He encouraged us not to live in fear but to be in awe of the miracle that is our son.
He went on to say that doctors and nurses tend to focus on what’s wrong – the disease – and what can be fixed and what can’t. Then he said to remember that so many things are working, are functioning perfectly to bring James this far – to not forget the small miracles because we hope for a huge miracle. I cried as he said these things, because I’ve been struggling to remember this. Even if he is only with us while I carry him or for 1 hour after his birth or 1 month or 1 year, his birth and life is a cause for joy and celebration.
I’ve been struggling so much with the fact that he will likely not breastfeed, as this has been such a huge bonding time for myself and my daughters, and when I expressed this, he said that he understood, but that we would take the hope for that and we would put it towards other things if breastfeeding isn’t to be.
He had such a beautiful way of looking at our son and his condition, such a beautiful way of looking at life, that I felt blessed to just have spent the time talking to him. He opened my eyes to the beauty of my child – come what may.
There is still going to be grieving and fear and tears (lots of tears) and anxiety, but I am going to put everything I have into focusing on the joy of James’ existence, to the joy of meeting him (however that happens), and face what comes bravely and with acceptance that I cannot control it.
Thank you, Dr Furigay.