A year later

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This has been a painful month.

At the end of February, I kept waking up early in the morning, abruptly like a person wakes up in a book or a movie. I would immediately think “it’s March first ” but then I would realize I was awake and it was actually February 24th. It took me a moment to understand why I was anxious about March.

As far as months go I have dreaded April not March. I have been known to repeat T.S. Elliot’s famous line “April is the cruelest month” a lot. But last March I was living in hell and my body remembers it even if my mind would at moments like to block it out. Sometime in my twenties, I lost my ability to block things out (a side effect of choosing to live in the moment that no one tells you).

Last year at this time I was walking around with a kicking baby girl in my belly. When the Ultrasound/Imaging place called to tell me that our baby didn’t have Down syndrome (or any of the other abnormalities you are routinely tested for as a woman who is pregnant over the age of 35 in New York City) and that our baby was a girl I screamed of joy! I had thought I was destined to be like my grandmother Dorothy (my favorite person I ever knew) and have three boys. And my next thought was “Hi Dorothy!”.

I think that was around 10 weeks at that moment. So for about two more months, I moved through life nauseous as hell and happier than maybe I had ever been. It all seemed so right. Not just to me but to everyone including my family and friends. My parents who have 4 grandsons would finally have a granddaughter! My Dad would get to hold his granddaughter in his arms and rock her and call her by his beloved mother’s first name. I would have someone in my home who would maybe not want to talk about poop after age 5! And I would have someone else in my home who had that deep intuitive intelligence that is reserved only for girls and women. It felt like a relief.

But this time last year I walked around with kicking Dorthy knowing she had half a heart. I also knew she was not a good candidate for any of the risky surgeries invented for babies born like her…I walked around knowing she was going to die. And I walked around knowing we had decided to terminate our pregnancy. I walked around in unbearable pain and the only thing that kept me going was that somehow I was able to shield her brothers from this pain. Of course not entirely, Louis still tells me he still misses her surprisingly often. He told me recently that when we had a ceremony for her at the end of Summer and spread her ashes and all made a wish for her that he wished that we could have another baby girl.

Purgatory, the in-between is surely hell. And this time last year I was in it. And then on March 31st with the help of the most incredible caring team of doctors we said goodbye to Dorothy.

I didn’t have an easy time. I went home after the surgery and began to bleed and was rushed back to the hospital 12 hours later and had an emergency surgery. Before going under for the second surgery I was told my risks, the worst being that they may have to remove my uterus if it didn’t go well to save my life. I was so depleted at that moment I couldn’t wrap my head around that idea so I instead I just looked at My husband who had turned grey.

The days following were a painful blur. I remember drinking a lot of sage tea to tell my milk to go away and having to put ice packs in my bra. Whenever I forgot my milk came back. I sat on my couch in beautiful printed pajamas given to me by my friend and was surrounded by so many flowers that truly made me feel loved. I was afraid to be alone so I had an endless stream of guests and I don’t remember any of our conversations. My friend Ayla brought me bone broth and talked to me in the most soothing voice, I remember thinking Ayla is going to be the best Grandmother that ever lived. But I have no recollection of the conversation at all.

About two weeks later I got up and went to work. I worked and I worked. I thanked God for my work all day every day. I emailed my clients in advance and I told them I know they cared for me so much but could they please not ask me how I am doing or hug me until the very end of my appointment. I longed to lose myself in anyone else’s story. I lived for other people’s lives. And in the night and morning when I was with my sons I lived for their lives. I lost myself in their moments. I actually liked talking about legos and mine-craft and the silly kitty cat.

I found a few things in my closet that fit me post-Partum with my other children and I wore them over and over. I bought myself a few very expensive pieces that I think I am still paying off on my credit card that were full of colour and pattern and barely touched my skin. I closed my eyes when I took a shower. I tried to never catch a glance of my belly that looked so obviously post-Partum and absolutely hollow. I realized I never truly understood the word hollow. I thought I did, that first real broken heart was pretty hollow but this experience embodied the word entirely. My empty womb was hollow.

I got through the Summer pretty painfully and past Dorothy’s estimated due date. I welcomed September so happily. My clothes started to fit. I could exercise without pain in my back and my pelvis most of the time and I had energy in the morning. My children were happy in their current moments and time was passing at a more reasonable pace (most of the time). Time had almost seemed to stop before the Fall. Like how can time move this slowly and I am still alive?

I have thought of Dorothy every day. I have spoken about her often. I have talked openly with many people in my community about the decision we made to end a very wanted pregnancy. I have joined an online support group full of other women who have ended wanted pregnancies. I have felt immense gratitude every day for the care I received as well as for the state I live in that supported my family’s decision with so much respect and dignity. Many women who are in my support group live in State’s that did not support their decisions so in their darkest hour, their days were so much more challenging than mine. Many have to lie to their communities and families. Many had to leave their state to have their abortion, missing work, paying for childcare of their living children and did not receive my level of care at any step of this hellish process.

Today I am tired and I am so sad. I have been crying all week. I have been missing my baby so much. I have been thinking about my own self this week last year. I have been thinking if I can just get through this next day or two. I have been brainstorming what can I do to move through these next days that honors my daughter’s short life inside of me? I have been thinking what can I do to not cry in front of my children often. I have been thinking if I can just get to April, my previously dreaded cruel month.

When the Personal Becomes Political

/ trustmothers / 14 Comments

 

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This is a photo of me this morning. In it I am 18 weeks pregnant with our little girl. I have known since Christmas Day that we were pregnant with our 3rd child. I have always known I wanted at least 3 children. My childhood best-friend came from a family of 4 and I always wanted to be at her house.I thrive in chaos – the more I have going on –  the better. So for the last 4 months while extremely nauseous and tired, I have been so happy. As soon as we found out she was a girl we knew her name would be Dorothy after my Grandmother.

On Wednesday, we went in for our Anatomy Scan. Ultrasound is not my favorite thing, at all! I tend to be a bit of a hippy about these things and I always wish for less testing, less poking, less prodding. But I am 38 years old and I have had 2 miscarriages, one that was in my second trimester so I have gotten used to these things and for the most part have a lot of gratitude that I have access to fantastic pre-natal care.

On the screen, we saw Dorothy moving around. The ultrasound tech commented a few times on her size, she was measuring more like 19.5 weeks. I have big babies so I wasn’t surprised. We heard her heart beat. The sounds immediately put me at ease. Her legs looked long and so did her arms. She had 2 arms, 2 hands, 2 feet, a perfect looking head and all the parts they are looking for. I always like to see the spine. It is so beautiful and long.

The scan was moving along fairly quickly. And then we came to Dorothy’s heart. The tech stopped talking and starting to look at her screen more closely. She then changed cameras and tried applying a little more pressure to get Dorothy to move. She spent about 20 minutes looking at her little heart.It was clear something was not quite right. I asked Gary to pass me my phone and I texted him even though he was right next to me “something is wrong”. He agreed. Shortly after the Doctor came in the room. Before he even began to also look at the baby’s heart, he told us in the kindest way possible that our baby’s heart was not growing. We have a right side to our heart and a left side and Dorothy’s left side had not grown.

Very soon after we were in a taxi to Mt Sinai to the Pediatric Cardiology department. Somehow those 70 blocks in midday traffic went by so fast. We went to get a fetal echo-cardiogram which is essentially a more extensive ultrasound with a Pediatric Cardiologist… I laid on the table for the ultrasound tech at the hospital which she looked closely at our baby’s heart. About 45 minutes later, the Cardiologist came in ( she had been watching the sonogram on the computer in another room) to continue the ultrasound. She was looking so closely,calculating so many measurements , over and over again. I was laying there crying as quietly as I could and praying and hoping for our baby. I recalled reading a story somewhere not that long ago where a baby had an operation on her heart while still in her mother’s belly. I thought of friends I know who’s children have had successful heart surgeries. I thought of how we live in New York City and have access to the best care anywhere.

After the ultrasound, I got dressed and we headed into the doctor’s office. As soon as we sat down she confirmed “ Your baby has a severe and extremely rare heart condition”. She drew us pictures of the heart and explained how a fetal heart differs from our hearts. She explained the right side’s job and the left’s side job. She then went on to explain what would happen if I carried Dorothy to term. She would be born. She would have no colostrum, no breast milk, no formula, nothing for 4 days. We would essentially starve her while she would be closely monitored. And then on day 4 of life she would undergo a very risky surgery that didn’t entirely fix the problem but would help Dorothy live and if she survived that she would have another surgery 3 months later and it goes on and on like this for years. A life of suffering from day one.

As my mind was racing in shock, I couldn’t get over the idea of not feeding my baby. I interrupted and said “not even through a tube?”. The doctor replied “No, no food at all.” I thought back to Louis’s and Arthur’s first few days of life and how they literally nursed around the clock. And then I thought of Louis and Arthur and how I would be pretty much living at the hospital and how much I would miss them and how much they would miss me. I saw them having breakfast without me, going to school without me and going to bed without me.I thought of how Gary and I would trade shifts at home and at the hospital and how we would hardly ever be together.  And in that moment my heart broke. That heavy feeling you get where all of the sudden your chest aches so much, it feels like it carries the entire weight of your body.And I couldn’t really swallow because somehow my heart all of the sudden also resided in my throat. And then I forgot how to breathe. And the doctor was still talking.

Now we are waiting to terminate our pregnancy. We feel like we are in purgatory. Time has never moved more slowly. I am used to wishing there were more hours in everyday. And now I can’t believe how long the days can be.  Some people refer to this as an ‘elective’ surgery. But something about this feels far from elective. We want this baby as much as we wanted Louis, as much as we wanted Arthur, as much as we wanted the babies we lost when we miscarried.

Coincidentally, today I read an article in The Washington Post about a law passed in Indiana that will not allow mothers like me to make this choice. What kind of world are we living in where we do not trust mothers to make the best choices for her family, her baby and herself?  It has always been my belief that God and Science are deeply connected. God is in everything therefore God is in Science. I am so perplexed by people who point to their religion as the reason for creating these laws when it is so clear it is politics and deep misogyny. Our hearts are broken. We feel we are living in a nightmare. I have not slept since Wednesday. The idea that a woman in my country suffering the way I am suffering would not have access to care close to her home and support network is unacceptable. No one wants to make these choices. No one. This is not a negligent, unloving  or flippant choice.This is one of the most heart wrenching moments of our life. I have had a second a trimester miscarriage. I know how awful I will feel physically ( not to mention emotionally, spiritually and psychologically) for weeks. My body will be in a postpartum state with no baby in my arms. My milk may come in. And I will walk around empty still looking visibly pregnant to the world.

I have always been pro-choice. I was raised in a pro-choice family. But I have thought much more about this law as it pertains to women collectively than to me. We must change the story of Abortion. Abortion is not just people ending their unwanted pregnancies. And this is why I am sharing such a personal private moment in my life. Because my personal is deeply political today.