Dancing with Death

Tonight I had a discussion about love and fear. It was illuminating because fear as it turns out is multifaceted and not just something to be reckoned with or avoided at all costs. As it turns out fear is something I have had a great deal of experience with over the last 4 years. Fear is something that can go hand in hand with love.

When Ellie was born I learned to dance with Death. When I was pregnant with Ellie I knew within the first month of the pregnancy that she, was a she. I knew her name was Ellie and that she would need braces on her legs. I knew this because I was dead tired the whole first trimester (while my body was busily doubling my blood volume) and one day after work I was lying down to take a nap and as I was falling asleep, I put my hand over my belly and asked, "Who are you?" And in a flash I saw this girl in a plaid blue and green skirt, white shirt and blue sweater with braces on her legs and she looked a lot like Dave and she told me her name was Ellie. So that was that. From that point on I would say, "Ok Ellie, we are going to take walk now, or go to work." I had this running conversation with her.

Then at 27 weeks and 5 days gestation she was born in a torrent of blood and chaos and zero oxygen. It was as if my normally developing baby and what my doctor just 4 days before had called a "boringly healthy pregnancy" had been in a train wreck. Her APGARS were 0,5, 6. On day 2 of life she had a brain bleed in her ventricles classified as a grade 3. The doctors told us she would not make it through the next hour, then the night, then the day, then the week, then the month. They told us she would be a vegetable if she lived at all.

So instead of having a third trimester that would lead to birth and breastfeeding and carrying her around and eventually seeing her run and play I got to dance with Death. I would sit by her incubator and talk to her silently, because even the softest noises would make the oxygen saturation in her blood plummet. Any NICU mom's out there know what monitors I am talking about. But I would sit there and carry on my silent conversation with her. Death would be sitting right next to me. I don't know what it was saying to her. I would say to her - if you want to stay - it's going to be a rough road - but I would be so, so happy and we will figure it all out together and be with you 100 gazillion percent. But if you are not supposed to stay, I will love you always, but don't let a mother's wish keep you. I am not sure what Death thought of that either.

The NICU stay lasted 133 days and two weeks after our release we had more visits by Death when the neurosurgeon at Cedars Sinai in LA did not check to see if the shunt he had placed to control her acquired hydrocephalus was working. From this she sustained more brain damage and his attempt to fix it raises eyebrows to this day by the excellent neuro team at Boston Children's. So there were a few more brain surgeries where Ellie would be under the knife and I would be dancing with Death. Dave and I would wait in the stark, fluorescent lit waiting areas and we would both close our eyes and try to imagine being in the room with her and imploring all the angels and inner guides in the universe in any shape or form to assist and keep her with us. I would feel Death's hand on my shoulder. Death's hand felt pretty cold and pretty familiar at this point. It did not shake off easily so I just accepted Its presence.

Acquired hydrocephalus is a nasty thing. For the first 2 years of her life we were in the hospital on a weekly basis because the symptoms of pressure on the brain are distinct and she had them a lot.

So when I hear people talking about fear and love I know they are forever intertwined. I have not, as a new mother, been able to separate them. They do a dance and I am taken along. But having become so intimate with fear and the possibility of death has made me learn to love more. To love from the present moment to the very deep depths of my soul. That is how I love Ellie every day. Completely here and now and deep, deep, deep. I know some parents in the same situation keep their distance, try not to get attached, buy into what the doctors say, and rarely come to the NICU. And fair play to them. There are a lot of people like this out there in not so severe situations deciding to hold back on loving someone because of fear of some sort of death - la petit morte. But I chose to dive right in, though it wasn't really a choice for me or Dave. People say we are amazing parents and it's amazing what we have all been through and how well Ellie has done. But in truth, we could not have done otherwise because we dove head long into the deep well of love for her that was our guide. So we stayed in the NICU every day for 133 days for 20 hours per day or on bad days the entire day taking shifts, sleeping in our car in the parking garage or not sleeping at all. We bought medical texts to educate ourselves in all the doctor speak so we could make informed decisions. We looked in our hearts and knew she would be amazing. We keep our hope for her and science's new discoveries that may help her brain heal.

I am so glad she decided to stay. I am so thankful she is not a vegetable. Today she communicated to me that she did not want me to sign choices to her but to write the words down for her to pick from on her magna doodle board. The astounding thing is that when I obliged she knew the words and picked what she needed. Ok - so she's not even four yet and can read words I didn't know she knew and has picked this up from somewhere - the books we read to her, the labels on her toys. Death can hang out all it wants, but Ellie has a path of her own and is sticking stubbornly to it - Death be damned. This is why I think of her as my little angel who delivered me from death by staying alive.