Precarious Balance

(Thank you for the photo, Elaine)

From an email I wrote to one of Tikva's nurses last Friday, and some added thoughts in the parentheses:

Right now I feel the need to just keep writing. These are such important stories to share, and I know Tikva's story has moved a lot of hearts. Who would've known when Dave and I decided to try and have another child... (A big part of me right now says: I would give it all away - completely erase my blog, surrender all the incredible support and love from our community, to have my Tikva in my arms, healthy and well and home and alive. Just a regular baby without such a huge story. Without such a complex journey or such big work to do.)

This morning on the way to yoga class, I just started bawling. Usually I start crying right as I start approaching UCSF, which I seem to have to pass to get just about everywhere from where we live in the Outer Sunset. But today I started crying much before that and I quickly realized that there was no way I could go to yoga because I knew I wouldn't be able to stop crying if I did. (And I didn't want to cry in that setting where nobody knew me or what I was experiencing.) So I drove past the hospital and stopped at a light and looked to the right, directly at the window on the 15th floor that is the back bay of the west wing. I look at it almost every time I drive by, and keeping myself from looking is really hard. Sometimes I notice that the blinds are all the way down in that window and I think a baby must be in surgery, or having a rough day and needing the extra darkness. Sometimes I dream that I can go there to see Tikva. (I think about how I never got to take her down the elevator the day it was time to bring her home.) Mostly I miss you guys (the nurses and doctors there) - I miss the place where everyone knows what I am going through, and where there is always someone to talk about it with, ask questions, process. I feel so anonymous in the world right now, which makes me feel very alone.

So instead of yoga, I called a friend and she met me at a cafe and for 3 hours we sat and talked about all kinds of things. That helped me not to feel anonymous, and I spent only some of the time crying but not all.

I was noticing about myself today that I am experiencing myself right now as if I were my own guinea pig. What I mean by that is that I continue to learn so much - not only about myself, but about how people experience and work through grief and really difficult things. (I learned a lot last week through the process of calling about support groups and speaking at length to all of their facilitators.) I asked myself today if maybe this is all part of my becoming a nurse, just like it is all part of Dave becoming a rabbi. Maybe one day in the future I will be a nurse who leads support groups for parents with sick children, or parents who have lost children. What an amazing way it would be to honor the gifts from Tikva, and help others. (After all, if there is nothing important I am supposed to do with this experience, it makes me feel even more depressed about the loss of Tikva. It makes it feel senseless, and it makes me ask more "whys" than I have been asking. My desire to help others has been in me since I was a child. It is part of my essence, impossible to ignore, ever.)

All that aside, though - putting aside my ability to observe myself from outside myself and be philosophical about everything - I just miss Tikva. So much. I look at photos of her - all 322 of them that I took in her short life - and I almost can't believe all that just happened. I almost can't believe that she did all she did in just 2 months. I almost can't believe that she is no longer alive. I almost can't believe that she didn't survive. I almost can't believe that she was SO sick. I almost can't believe that I experienced all I experienced with her. I almost can't believe that she never came home, that I had a baby who is no longer alive. That she couldn't breathe. It's like I'm having delayed trauma about all that I couldn't quite feel the whole time she was alive, and even before when I carried her inside me. Because if I had felt it all so deeply then, I would have been a wreck and totally useless to my little baby who needed me to be present and unconditionally loving toward her. Does that make sense? I look at the photos and think, "Oh my God, she had SO MANY tubes and wires attached to her ALL the time." (So many drugs coursing through her body all the time.) Poor sweet thing... what a life. (Is it fair to even experience her as a "poor thing"? I didn't see her that way when she was alive, even while it hurt to see her struggle so much when a baby is usually supposed to just be relaxed and held. Was I in denial then? Or am I now just telling a story about her that isn't true?)

I want her back. I wanted to bring her home and know her for the rest of my life. See if she would continue to look like me as she grew older. (There is the loss of a piece of me, because I always felt Tikva looked and felt - in her nature - more like me than Dahlia does. While I love her infinitely and unconditionally too, Dahlia feels like an entirely separate being to me, and with her I can understand the idea that "our children are not ours." Perhaps that is a healthier way to be a mother. Tikva felt different to me... maybe because she only lived for 2 months and was so sick. Maybe because this symbol of Tikva held by everyone around her made her into something much beyond a little baby. Maybe because she felt so fragile and sweet and I could identify with that struggling and melancholy aspect of her. Maybe because when I had carried her inside me I had wanted to carry her forever to protect her. Maybe because I thought from the first day that she looked like me. Or maybe simply because she was my baby I carried, my baby I pushed out of me, my baby I wanted to hold and nurse long enough that she would eventually be all better. Is that love conditional?)

I think about the day baby Raul died and I was there to witness his family's loss. I think about Dana Estrella on the ECMO. I can still see cute chubby little Nancy being pushed around in the leopard print stroller by Sue, joking about taking her to Subway. Such sweetness amid such intensity. I wonder what anyone would feel like if - just for a day - they would have dropped into my reality in the ICN, which felt so normal so quickly. They would have been in complete shock, and probably really traumatized. But I didn't feel that. Time moved so slowly, I can't even believe that it was only 2 months. In another month she'll have been dead as long as she was alive. I will only be 3 months postpartum on Wednesday. It's all so weird.

I've wondered if Hunter's parents know that Tikva didn't survive. One of the nurses told me at one point that his mom had called to talk about Hunter after the took him home and she had asked about us. The day we'd met with the doctors about what Tikva needed to do before she could come home, we saw them in the hallway when they came for the CDH clinic. Tikva was doing well and I could see her coming home like Hunter did. It's when I think of those moments that it's hardest to believe those dreams didn't happen. What do I do with that past hope if what unfolded was so different in the end?

I think if I write that book, it is going to be a big one, a long one. There are so many stories to tell. I could start from the beginning all over again and write even more. Perhaps I will. I am starting to get glimmers of how I am changed by this experience in a way I haven't been changed by all the other big experiences of my life. It feels big, and it feels important, and there is some big way in which it will help others - which has always been my desire in life. I hate feeling alone, and I hate the thought of others feeling alone through something hard. I thank God that I have the ability to write - I have always felt so "gifted" by that from something so much bigger than me. Do you ever feel, as a nurse, that you are just channeling something bigger in the work you do?

(Tonight I am going to my first support group. After searching for the right group and learning a lot about how grief and loss groups work, I think I found the best group for me. It is for parents who have lost very sick children, and parents who have very sick children who are still alive. Parents who have some understanding of the experience of the ICN, severe or terminal illness, all that is lost along the way, losing a child. The group meets in a doctor's home, rather than in a hospital, something I am thankful for. I hope it is the right place for me right now.)