Wednesday, April 25

Been there, Done that

Death is an interesting topic. I say interesting because while it is not one that most people like to talk about, it is something that is everywhere around us. We hear about death in the media- the latest murder in Washington, D.C., the inmate whose death sentence was pardoned or carried out, and the 24 hour coverage of the war in the Middle East. It is in the action flicks we go to see, the books that we read and the songs that we hear. The Hunger Games has provoked a controversy as to whether the depiction of children in a "death match" should even have been made into a film.

While we as a society seem to accept these examples of death, it becomes very different at a more personal level. Decades ago, most people died in their home and yet nowadays, it is more common to die in a hospital, sometimes after prolonged illnesses. Death has moved out of the personal realm into a more "sterile" environment. As if having it occur in hospitals will keep it safely away from the rest of us. Yet, of course our own death is inevitable at some point.

As a physician, I have had the unfortunate experience of seeing death first hand as a part of my job. While I accept this as being part of my chosen profession, it is always an area that is difficult.  I do not remember each person in detail but there are certain patients whom I remember more vividly than others.

There are certain milestones as a physician that I think most of us remember.  Your cadaver in anatomy class.  The first physical exam performed by yourself.  The first time you get to operate.  The first patient who dies.

I was a third year medical student doing my Internal Medicine rotation. My patient was a 40-something year old, Hispanic female with Stage 4 Lung Cancer which means that her cancer had spread beyond her lungs.  She had come into the hospital for some complication of her disease and we knew she most likely would not leave. Since she was assigned to me, I rounded on her every day.  That is, each day I would walk into her room and ask how she was doing.  I would examine her.  I would check her chart and carefully note her vital signs and any other tests that were done so I could report them accurately during rounds.  She improved a little over the course of the week and we began to think that she might be able to go home on hospice.  Unfortunately, she got much worse before we could make this happen.  It so happened that I was on call the night that she slipped out of consciousness. We started her on a morphine drip "for pain" but really it was to help the family. As death nears, a person will often start gasping for air and while it does not cause any pain, it is extremely difficult for a family to watch. Morphine helps by decreasing the body's respiratory drive and therefore lessens the gasping.

At some point in the night, I was called by the nurse on the floor taking care of her.   I went into her room and examined her for the last time. I listened to a heart that was no longer beating. I listened for breath sounds that were not there. I then had to tell the family members gathered around her that she was gone. I left as they all began weeping because there was no more that I could do.

Although you could say that I was experienced with death because I am a physician, there is nothing like experiencing the death of your own child. It is unnatural. It is not expected. Most of all, it is not what you dream of as you go through the months of pregnancy.

I think this is why people have reacted so differently to the news of Rachel's death. I am amazed at the outpouring of love we have received. So many have reached out to us through phone calls, emails, cards, gifts and even bringing us dinner. It has been so amazing.

However, there are also other reactions.

Those who don't know that Rachel died and then become flustered and apologetic when I answer them with my ever so blunt, "My baby died". Most of the time I feel like I have to help them out in their discomfort since they are so obviously at a loss for what to say.

Sometimes, someone will share with me that they too had a child die.

Some people avoid the conversation about my baby to such an extent that it is almost as if I was never pregnant. Like the whole thing never happened. I find that these people just have no idea what to say to me so they say nothing. I was really hurt by this, but more recently I have started asking certain people if they have seen a picture of Rachel. Most people have been very warm after this and it allows them to know that I am ok with them talking about her.

Then of course there are the people who will say, "I know just what you are going through. My mother died a few years ago" or my all time favorite, "Been there, done that". I was actually so flustered by that last statement that I was left speechless. I am pretty sure the woman who said it did not mean to belittle what I am going through but it still hurt.

I think that Rachel's death has made me much more aware and empathetic to parents who have had a child die as well as to those who experience the death of their loved ones, no matter who it is. The pain is raw and deep and while it sometimes eases, it never really goes away. Even now, 2 months later, I will still look at Rachel's picture and wonder if she really died.

It makes me try to appreciate each day I have because after all, I never know if it will be my last.

Friday, April 20

Simple Questions

It has never ceased to amaze me the ease at which complete strangers would come up and talk to me when I was pregnant.  If this had happened only a few times, I would have chalked it up to chance, but throughout the duration of all four pregnancies, I would constantly be fielding questions about my "condition".  Usually the questions were basic-
"How far along are you?"

"Are you having a boy or a girl?" followed by "Do you have a name picked out?"

"Is this your first?"

All questions that were without any issues in the past.  After a while, I figured that most people were just genuinely happy to see a pregnant woman and everything that she represented.

A new life.  A new beginning.

Pregnant women are full of hope and promise for our future as they should be since they hold the next generation within their wombs.  The questions were an attempt to connect or perhaps acknowledge the joyful occasion that was to come even if they did not know the woman they were questioning.  It was the circle of life like from the famous Disney movie, The Lion King.

After we found out that Rachel had Trisomy 13, those innocent questions took on a whole new meaning for me.  Although I could feel my baby moving inside my womb, these were the constant external reminders of what might never be.  Each time I answered the questions, it reminded me that I may not be able to keep her much longer even if I had her for that moment.

Most of my close friends and family know that I am not someone who likes to lie.  In fact, I think sometimes I am too honest.  It was though, a conscious decision when I decided not to tell strangers and even some of the people I worked with that the child I was carrying was a girl.  I think it happened because so many people, once they knew that this was our fourth child and that we had 3 boys, would say, "I hope it's a girl!"

Each time they would say this, I would die inside because she was a girl.  Rachel, our beautiful daughter who would most likely not live for very long.  I did not want to hear other people get excited about the daughter that I would almost certainly not have for very long.  I felt like it was better not to say anything and avoid having to go through all the details because in reality, they were just making conversation and did not want to delve into our situation if I had told them the truth. 

I continue to try to grapple with seemingly simple questions.  Of course, our close friends and family all know what happened but I have started to run into those people who only peripherally knew me as I go about my life these days.  This has happened a couple of times at the preschool the boys attend and of course, with my patients. 

I knew this would happen, WILL continue to happen, and yet each time, I freeze.  Like a deer in headlights.  And even though I have practiced what I will say, it comes stumbling out in a blur of words. 

"Oh, you probably didn't know.  My baby died." 

The first time I uttered those words, it felt like they was coming out of a stranger's mouth. Those words seemed so completely foreign to me.  As if I was talking about someone else.  As if I had never been pregnant at all and I was making it all up.  The shocked look on their faces betrays the fact that it is true.  Once I snap out of my initial shock, I usually give a half-hearted smile and try to change the subject or make a quick escape.   Most people seem to appreciate this from me since death is not an easy subject, especially the death of a baby.

I was writing more thank you notes today and kept thinking at how beautiful my children looked in the picture. All four of them. I felt so sad that it would be the only picture I would have of the four of them together. Joseph, Thomas, William and Rachel. It made me think about how difficult that question has become. The one about how many children I have. The one that I can never really answer without becoming overwhelmingly saddened by the reality. How I have to judge whether I want to have that conversation with a stranger or not.  

I have learned that simple questions do not always have simple answers.  Sometimes there is a deeper answer beneath the one given on the surface. 

Thursday, April 19

Back to the Beginning

At the time that we learned of Rachel's diagnosis, I considered writing about it in this blog but just never had the time or made the time to do so, but I think that it might give a better insight as to what we have gone through.


Way back when we first started dating, Ken and I had talked about how many children we wanted and that number had always been 4. When William had his first birthday, we thought that it was probably time to move forward with our plan. By June, I was pregnant and we were ecstatic! As the hot summer days continued, the pregnancy did not show any signs of being different from any of the other three I had experienced. I was nauseated like in the past but had no real problems keeping me from working.

My first ultrasound was done by my Ob/gyn in the office (she is also a good friend of ours) and everything looked good. A few weeks later, she gave me a referral to have a Level 2 ultrasound done out of network (that means that the Army hospital did not have that service available so I had to go to the private community for this). This is a routine thing done in the Army for women over 35 years old who are "AMA" i.e. advanced maternal age although the Army has a nice way of referring to us. . . ."elderly." You may laugh, but it is true. I didn't believe it myself until I read it in my chart after delivering Thomas in the Army health system.

Looking back, I consider us as having been so lucky prior to this point. We had never experienced a miscarriage as so many of our friends have or any trouble with getting pregnant either. I remember driving to work one morning before the ultrasound thinking that I was such a lucky woman.

I had achieved my life long goal of becoming a surgeon.

I had a wonderful, caring husband (although there was that business of kissing a bunch of frogs and getting my heart broken a few times before I found him!)

I had 3 beautiful, healthy boys and

I was pregnant with our 4th child.

I marvelled at how blessed I was and wondered why other people seemed to have to go through such tragedies that did not seem to affect me.

It is crazy that these were the thoughts that went through my mind before the most difficult thing I have ever gone through in my life began.

Friday, April 13

The Wonderful World of Books

I find it difficult to put into words sometimes how I am feeling especially on a blog. I started writing in a journal but for some reason I have not been able to write there either. There are so many thoughts swimming around my head but somehow I can't put that into words most of the time.

Since Rachel died, after the initial mind-numbing shock wore off a bit, I have found some solace in reading. In fact, I have read more books in the last 7 weeks than I have probably over the course of the last 7 months.

I started reading the Hunger Games trilogy when we first got to Maryland. Maybe it was because the story was so compelling and easy to read or maybe because it was easy to leave my life and get wrapped up in the life of Katniss. Whatever it was, I read the three books in as many days I think.

Next I read a book on Ken's kindle which was very dull and boring whose name I cannot even recall. I decided after that book that I do not like reading books on the kindle.

I started another book on the plane ride home to El Paso, called "Bringing up Bebe" which I had heard of a few times and was curious about. It turns out to be a bit of a memoir/non-fiction if you will about a comparison between American and French parenting styles. Interesting read.

I then went through a bunch of books at home that are my "old stand bys." That is, books that I have read before (girlie books as Ken calls them) and like enough to read again. I never really donate my books unless I disliked the book because I never know when I will want to read it again. I know. It seems weird to read books a bunch of times, but I like to. Jemina J, See Jane Date, Seeing me Naked, Georgia's Kitchen... All books in my library that I had read but pulling them out was like a chat with an old friend I hadn't seen in a while. I remembered the story but had forgotten the details. After that I went back and re-read The Hunger Games and Catching Fire. Not sure why but I did.

I think I am reading like a crazy person because I have always been able to lose myself in a book. Really learning about the characters and getting into the story so much that I am almost transported into their world. I guess it gives me a chance to be in another world since right now it is hard to be myself in my own story. The one where the parents hope and wish that their baby won't die but she dies anyway and all they are left with are pictures and heartbreak.

Some days it gets easier and I am able to go about things fairly normally. But sometimes I feel the physical symptoms of grief almost overwhelming me.

Tight throat, burning stomach, tightness in my chest. Tears welling up that I cannot stop.

I am sure that it will get better. It has to, right? Even though I know that Rachel is gone, sometimes my mind just can't wrap itself around this reality.

I have returned to work which is helping somewhat to distract me but even walking into the hospital the other day was a huge endeavor for me. The last time I was there, I was walking out of the hospital, with empty arms the morning Rachel had died.

Time is supposed to help to heal.

Until then, I can keep getting lost in my books.

Tuesday, April 3

Life keeps going

After losing Rachel, the world stopped for me. It seems strange that despite this, everything around me keeps going on as normal. Of course, I didn't expect otherwise but for me, everything takes an enormous amount of effort. Sometimes the cloud lifts for me and I can experience some moments that are not heavy with grief but it always lingers there in the background.

I was washing dishes this morning (I have not started work yet) and thought that perhaps I will go back next week since I am finally starting to feel restless. I finally feel like I want to be doing something. Most days, I am happy to get the boys to school and read for a little bit. Not having the motivation to do anything is a foreign concept for someone like me who always has a project or something going on. Today, I decided I would finally start working on the picture frame collage of Rachel that I have been meaning to do.

As I started sorting the pictures, I thought, "Wow, I miss her but I can actually look at the pictures without crying."

This lasted for maybe 5 minutes and then I started crying. Remembering the moments that we had with her. Wishing that I had taken this picture or that picture. Feeling the familiar ache in my empty arms that long to hold her. Looking at how beautiful and tiny she was.

She would have been 6 weeks old tomorrow. It feels like I lost her yesterday.

Sometimes I wonder how long will I feel this way? Will I always crumble into tears when I look at pictures of her? I am hopeful that I am making some steps forward in healing but it is difficult to put all my faith in God when all I want to do is shout at him for not doing anything to save my precious girl. As I have searched the internet for groups dealing with infant loss, I have found that there are so many parents that have had to go through this, whether it is a miscarriage, stillborn, or a loss like we had. I wonder why so many have to go through such a terrible thing? Having a child die is something I wish that no parent would have to go though. We expect to some day bury our grandparents and even our parents but not our children. Some people have told me, "You have your boys to think of!" Its true, we have 3 wonderful boys and I thank God every day for them but they will never ease the pain of losing Rachel.

The one thing I keep going back to - the one thing I know for sure in my heart is that I do not regret any decision we made about continuing the pregnancy. We knew that we might not have her for very long, but we were able to love her fully for the time that she was here in this world. Loving her means that she took a piece of me with her when she died.

Sweet baby Rachel, I will miss you for the rest of my life until I see you again in heaven. Mommy loves you.