Angels all around

I don't think that I thought about angels much until recently. In the past, they seemed to be these beautiful creatures that as children were told lived in heaven. Since Rachel died, I have thought about them quite a bit. Some people have told me that Rachel is an angel in heaven now and others say she is playing with the angels. Ken and I tell the boys that she is in Heaven with God watching over us. A patient of Ken's gave us the book "Heaven is for Real" which is a great, short read. I recommend it if you have not read it because it gives such a wonderful view of what heaven is like through the eyes of a child. I no longer fear death as I did before because I know that my beautiful daughter will be waiting for me there. I hope that she has met many angels there and knows how much we love her and miss her.

That brings me to the reason for my post.

About a month ago, I went to a Breast Surgery conference in Phoenix, AZ. A couple of days before that, I was sitting in my office, not doing the paperwork I needed to do (kind of like right now.....), but rather looking at the SOFT website. I was on a page that had listed speakers that had been to their conference in the past. One of those speakers was Richard Paul Evans who wrote the best selling book, "The Christmas Box." Now, I had never heard of this book before so I was intrigued. The book tells the story of a family who moves in with a widow right before Christmas and was about slowing down to parent well and without regret. Although that was the initial message, it evolved into a beloved, comforting story for bereaved parents. In the book, the widow goes to visit the daughter's grave in which there is an angel monument. This is a work of fiction but the angel is based on one that used to exist in a cemetery in Salt Lake City, Utah. After the book became a national phenomenon, many people wanted to visit the angel but it was apparently washed away in a flood. Mr. Evans decided to have a new angel statue commissioned which now is in a different part of the same cemetery.

Once I heard about this angel, I wanted to see it so I found the angel website. I was then amazed to discover that not only was there the angel in Salt Lake City, but there have been other angel statues built across the country. Curious, I looked to see if there were any near El Paso.

There was no angel in El Paso. However, there was one in Phoenix.
I looked for the address and found that the cemetery in which the angel statue was located was only a mile from the hotel where I would be staying.

I have never believed in coincidences and feel that things happen for a reason. I am not sure if that is true but it is what I believe. I have struggled to find the reason why Rachel died but maybe her short time here on earth was to inspire those she left behind. One of the things that I would like to do is to help others who have been in the same or similar situation as us.

After discovering the angel in Phoenix, I knew that I needed to visit the statue during my stay in the city. The conference was very busy so i did not get a chance to visit the statue right away like I had planned. I started to think that maybe I was crazy to want to see this angel statue and decided maybe I should not go. Then on the second to last day I was there, a silent auction was held. I have been to these conferences many times and I have to admit, I usually walk around the auction items and don't pay attention to them at all. For some reason, this time, I walked around to see what was there for auction. Nothing really caught my eye until the end when I saw a large painting of a angel statue titled "The Healing Angel".

I couldn't stop staring at it.

I knew that this painting was meant for me so I bid on it right then and there. I went back later and saw another bid and then bid higher. I decided to stay there and make sure no one else bid on it, lest I lose the painting. Happily, I was able to buy the painting and I drove it back with me to El Paso.

After that, I knew I had to see the angel statue and drove over right before I got on the road back to El Paso. I was very nervous for some reason about seeing the statue but once I got there, I felt an overwhelming sense of both peace and sadness. The statue was placed in the middle of a rectangular garden. There were some memorial benches and other inscribed monuments around the small garden as well as plaques with the names of children who had died. As I looked at the names and the dates of birth and death, I noticed that they ranged from babies to adults. I looked around for a while and thought how nice it would be to have one close enough that I could visit it when I was feeling sad and missing Rachel since we are so far from where she is buried.

It then occurred to me that maybe I could find a way to have something like this in El Paso! It would be a peaceful place that bereaved parents could go and think about their children and a way for Rachel to make an impact in the city in which she was born. I am trying to figure out a way to get this project started. It needs a committee of people and community support but I know that God will lead me to the right people I need to find. I so want for other parents who lost their child/ren to know that they are not alone.

I read in the local paper yesterday that a local soldier from Ft Biggs here in El Paso returned home. Unfortunately, it was in a casket as he was another casualty of the war in Afghanistan. The paper ran a story about how his wife and parents were waiting for him at the airport and how upset they all were. The story touched my heart deeply because it doesn't matter what age a child is when you lose them...2 days or 28 years old. He or she will always be your child and the hurt is terrible. My heart goes out to that family and I hope that God gives them some comfort in this time of sorrow.

The other day I was in church and we were singing a song that made me think of Rachel. Most songs at church make me sad these days so it was nothing new. I then heard the words I will comfort you in my head.

I will comfort you the voice said again.

I believe it was God telling me that I can rely on Him to be my source of comfort. All those angels around me in statues and paintings are reminders that I am not alone. We are not alone.

And He will give us comfort in our time of sorrow.

Hope and Denial

I had received an email about the conference the week prior and had briefly considered attending.  It was not really in my field, but I am now interested in neonatology much more than I had in the past so it caught my eye.  The day prior to the conference, I had decided definitely not to go and reasoned that I had really been silly to consider it.   Truth be told, the real reason I had considered going was that upon looking over the schedule of events, one in particular had caught my eye.  The ethics panel toward the end of the day.  My doctor was one of the presenters. 

I wondered if I was the case that she would be presenting.  Then I shook myself and thought how conceited I was to even consider that as a possibility. 

While I was driving to work on the day of the conference, I became overcome by the intense feeling that I HAD to go to the conference.  It is strange the feeling that came over me, but all of a sudden I changed my mind and decided to go.  I got to work and mentioned to my assistant that since I didn't have any patients that day, I had decided to go to this conference and how crazy I was to think that I would be one of the cases presented at the panel.

I drove to the medical school where the conference was being held and finally found where I needed to go.  I was late so there was no line when I checked in.  The woman at the registration table checked me in and gave me a folder with the schedule and some other information.  I opened the folder and started looking over the papers inside. 

There was a sheet of case vignettes for the ethics panel.

Mine was the last one.

What I felt next was similar to the symptoms of a panic attack since it involved my stomach knotting up, my chest tightening and feeling as if I could not breathe.  I quickly scanned over the words, silently willing them to not be what I was reading.  I went outside to catch my breath.

My first phone call was to Ken but he did not answer. I then texted one of my best friends, who also happens to be an ob/gyn.  She called back right away (luckily) and I told her what was going on.  Several expletives were expressed and she basically said she couldn't believe I was there and was I going to stay.  I told her I didn't know.  It was a small conference with maybe 100 attendees so when my former doctor went up for the panel, she was sure to see me in the audience.  After that, one of two things would happen.   Either she would skip the case or ask me to leave.  No way would she present the case, especially since it was obvious by the way it was written that she had completely disagreed with what Ken and I had chosen to do. 

I had always felt that she was a bit cold and almost changed to a different doctor but then shrugged it off and stayed.  Now I wished I had changed doctors as she obviously had complete distaste for us and our choices.  She had subtlely misrepresented some things about what happened in the vignette and I was loath to consider in what light she would present me.  Now it was just a matter of did I have the stomach to listen to people talk about me, Ken and our precious baby Rachel?   And did I really want to listen?

In the end, my friend suggested I lay low and stay near the back which is what I ended up doing.  I can't tell you how slowly the next few hours dragged on as I waited for the ethics panel.  Somehow I managed to avoid seeing her and settled down on the floor in the back part of the auditorium.  I figured I had every right to be there.  I was a physician and there was nothing saying it was a closed meeting like morbidity and mortality meetings.  I imagine most patients do not have access to such meetings as I did though but I couldn't help what my profession was.

There was one case before Rachel.  When they started talking about us, the first thing that the "panel" focused on was why we hadn't done comfort care (which we had). They started questioning the steroids I got at 32 weeks so that if Rachel had been born, her lungs would have been more mature.  They criticized why I had "refused augmentation" at 35 weeks when I was 5 cm dilated and why we had demanded an echocardiogram once Rachel was born (what the cardiologist had asked us to do in our last visit with him).  They kept coming back to how much we were in "denial" for wanting all these things.  That even though we were health professionals (also mentioned in the vignette) that we were still acting like parents and were in denial about our daughter.

It took everything I had not to stand up and scream at them.  "We just wanted to give our daughter a chance!"  Why was that so hard to understand?  I think that is what hurt the most.  That just because Rachel had Trisomy 13 and some congenital anomalies, some arguably quite severe, we couldn't just "accept the inevitable" and let her die.  As if the book had already been written about her and I needed to close it and be done with it. 

What I wanted to tell them was that even though I only was able to be with my daughter for a little over 2 days, that I cherish those moments.  That I wouldn't change anything we did and want to punch someone for criticizing me for not accelerating her death.  I am willing to bet none of those "experts" have ever had to go through the unthinkable experience of being told their child will most likely die.  Why is it wrong to want to give your child a fighting chance? 

The other thing that was said that I will never forget was when one physician compared Rachel to the other baby in the case before.  He said that the two babies were completely different and that the other baby had a chance at being a "functional member of society" and that "this baby [Rachel] had a messed up brain and would never be able to be a functional member of society." 

As if he could determine the worth of an individual.  Shame on him for saying that.

I had heard just about enough when a woman physician spoke up and said, "I have to disagree with all of you.  I would have done the same thing as that mother."  I had held it together quite well up until that point but hearing her validate our decisions somehow made me cry.  I don't remember the rest of what she said but the sentiment was that there was nothing wrong in the decisions we had made. 

I left after that and wondered if the conversation had changed anyone's view on the subject or if they would keep thinking the same thing as always.  I know there are so many physicians that believe that Trisomy 13 and 18 babies are not worth keeping-- that they should be terminated (a nice way to say abortion).  Now I will not pretend that everyone will feel the same way and do what we did.  I was terrified and devastated when we were given Rachel's diagnosis but our choices were right for us.  I suspect though that had we not both been physicians, it may have gone a different way.  The topic of whether we were religious people came up at that conference and my former doctor also mentioned that Rachel was our only girl.  As if that explained our course of action because certainly if it had been a boy we would not have been in "denial" and would have terminated like a normal couple.

My friend the ob/gyn said that in training, they are taught to strive to obtain the optimal outcome, meaning a healthy baby.  The focus is on those babies and anything other than that is considered a failure.  I wish that more of them would realize that even though it would be wonderful if there were no neonatal deaths, depriving parents of even a few moments of joy with their baby is wrong.

I will admit that throughout the pregnancy I experienced moments of denial about Rachel's diagnosis.  I continue to experience moments of denial when I can't believe she is really gone, but hope has always lingered there among those feelings.   Hope that she might be born alive.   Hope that we could take her home.  Hope that I might eventually have the clouds part and see the sun again.  Ironic since we live in the "Sun City." Hope that I will someday see her again.

An Italian proverb says "Hope is the last thing ever lost."  I ask you, what parent can ever give up hope for their child?  Even when that hope is that their child dies a peaceful death, hope remains.  That is not denial.

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.

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. 

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.

SPRING 2011

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.

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.

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.