Friday, October 19, 2012

What My Days are Like

I cry most days, but not all, and usually in the evenings and on the weekends. I hold it together all day long at school.  There is joy there and I cherish every moment I have with my students.  Although, I have shed a tear or two there like when the email was sent out canceling my baby shower.  Most people, when they see me give me a quick hug or squeeze my hand.  I appreciate this so much.  I know how much people care about what we are going through and want to acknowledge that they care.  Usually, when people ask me how I'm doing I revert back to my old ways and put on a brave face, give them a half smile because that's all I can muster and say I'm ok.

In other words, I lie.  I'm not ok.  My baby is going to die.

I hear those words in my head all day long.

I just finished reading a book called Waiting With Gabriel about a family who, after learning that their baby had a hypo plastic heart, decided to give their child a natural death.  They spent the rest of the pregnancy cherishing every moment they had with their baby boy and planned for his death.  I wept as I read their story, for their family and for mine. The author, Amy Kuebelbeck, talks of how when the two most primal parental instincts, keeping your child alive and protecting them from suffering, collide you are faced with an unthinkable decision.  From the moment I learned of Baby B's condition my heart spoke to me.  It told me I have to let this baby go.

Since then Jason and I have spent countless hours talking about our decision.  Most days we are sure, some days we are not.  Every day we are sad. Some nights are spent on the phone with doctors or nurses and our parents.  Some nights we just watch TV because we just can't think or talk anymore.  One night this week we booked two tickets back to the US.  Our return ticket is flexible, we can cancel it or change the date.  We can also add a baby to the ticket, one baby, because the other baby is going to die.

Most days are hard.  Weekend days are hardest.  I find myself alone for far too long on the weekend.  On Saturdays, Jason runs in the morning and then has soccer practice.  On Sundays he has softball.  It being October means that there are lots of parties, octoberfest and birthdays and halloween etc.  I want him here with me but I don't want him to stop living.

I know this is heartbreaking for him.  But I'm just going to say it, it's harder for me, just like the struggle with infertility was.  I'm reminded with every kick in the ribs and every middle-of-the-night pee that this is really happening. There isn't a moment, day or night, that I do not feel sadness.

There are glimmers of joy.  I try to catch them, if only for a moment. Like trying to catch a bubble, they disappear so quickly.  What I want is to find joy in this pregnancy again.  I've been told by several people that I do pregnancy well.  I do.  I look and feel great.  I just wish I knew how to keep the sadness at bay for long enough to enjoy it.  

Monday, October 15, 2012

What I've Got

I've got friends and family near and far.  I've got a community of people that I live and work with and a community of people online that share their triumphs and heartbreaks. I have a husband who is my best friend, who is always loving and strong when I need him to be. I have wonderful people in my life and feel very loved. 

Here are just a few of the amazing people I am blessed to know and love. 

I have been overwhelmed by the outpouring of love and support Jason and I have received from the people in our lives these past couple of weeks.

I'm writing this post because I want to remember this when I think about what else I've got.

I've got a broken heart.

I've got a sadness that runs so deep in my soul I know it will never leave.

I've got so much to consider it doesn't seem possible to sort through it all.

I've got a fierce mama love.  I have always known it was there buried deep, lying dormant, waiting.  What I never could have imagined is just how fierce it would be.  It's so fierce that I will do anything to protect my babies from pain and suffering.

I've got to trust my mama love. 

Wednesday, October 10, 2012

What We're Facing

I've started and restarted this post several times already.  The enormity of all this is too difficult to fully capture in a blog post.  We've met with several doctors here in Delhi and back in the states via phone and really nothing much has changed from the initial diagnosis.  

It's still as bad as it gets. We are facing having to choose between two nightmares, each with its own set of terrifying consequences.  

What has changed is that the initial shock of it all has lifted a bit.  Sunday has been the worst day since the diagnosis.  The pain of it has now fully settled in.  This sadness is unlike any other I've felt.  This sadness runs so much deeper than the sadness that surrounds infertility.  I never thought that that was even possible, that something could hurt more than years of failed fertility treatments.  The thing is though, as the shock lifted and the pain settled in, with it came some clarity as well.  Yes, this is the worst pain I've ever felt.  But, like the pain of infertility, I get to choose how to live with it.  

Years ago, when the reality of my struggle was becoming more and more clear, I had decided that I would not be jealous of pregnant women. I would not ask why me.  I would not let the bitterness in.  Instead, through the pain, I focussed on the joy in my life.  Jason and I had always marveled at our incredible life.  We have so much to be thankful for, friends near and far, a supportive family, jobs that we truly love and the people we have had opportunities to meet along the way like Yangzom.  She came to work for us as a housekeeper and has now become part of our family. And that's not even to mention things like our travel opportunities or the beautiful things we have collected for our home from around the world. These are just some of the things that bring me joy.

When we got the diagnosis last week I felt the joy get sucked out of me. Since then, I have come to realize that, although many of the things that bring us joy may not be part of our lives for a while or not at all any more, Jason and I made our lives joyful.  Somehow we will find a way to do that again.  I don't really know how, but we will.  

Right now sadness consumes me, but, slowly I will allow joy back in bit by bit. Tomorrow is my birthday. Tomorrow I will celebrate with a few dear friends.  We will eat Thai food and yummy cake.  Tomorrow I will allow room for joy, if only just a bit.  

Wednesday, October 3, 2012

In a Heartbeat Everything Changes

Celebrating Gandhi's birthday at the Taj Mahal
We let joy permeate us. It oozed out of our pores.  It filled our hearts and our lives.  We shared our joy with the world.  The parts of us that laid dormant through our struggle to get pregnant breathed with life again.  We were joyful.  
When I woke up yesterday morning, 23 weeks pregnant with two babies I already love so much, I was filled with joy and was excited for our scan.  For the first time this pregnancy I was not nervous to go to the doctor.  All I thought about was how I'd get to see the babies' faces again and their little hands and feet.  I wondered if my suspicions of gender would be proved.  I thought about having the cribs delivered and when my amazon package would arrive.  The day sailed on quickly filled with joyful thoughts.  After dinner I had my prescribed ice-cream.  You see, the last time we went the babies were sleeping so we couldn't get the echocardiogram done.  Ice-cream helps the babies wake up and move around.  I happily obliged. 
Sure enough it did the trick.  When we arrived for our 7:30pm appointment the babies were rocking and rolling.  The doctor got right to it.  Baby A was being very cooperative and we ooh-ed and ahh-ed joyfully.  Baby A's little hand was nuzzled up next to his or her cheek and was measuring right on target.  Baby B was not being as cooperative.  After a few minutes the doctor decided to have me lay on my side for a while in the hope that baby B would turn around so we could get a good reading.  As we waited Jason and I chatted about baby names.  We made up some silly names.  We thought of special family members we'd like to honor.  We were joyful.  Our joy filled the room.  
When the doctor came back he was pleased that Baby B had turned to show us his heart.  When I saw the image on the screen I felt the joy leave me. I felt it leave the room.  In that moment with the beat of Baby B's heart, everything changed.  It was very quiet and I suddenly felt like I couldn't breathe.  I heard the doctor explain what he saw.  I suddenly felt very cold and started to shiver uncontrollably.  I knew it was very very bad.  I cried as the doctor explained that Baby B has a very rare congenital heart defect called Hypo-plastic Left Heart Syndrome with mitral and aortic stenosis (HLHS). Without intensive, ongoing medical intervention he will not live.  With intensive, ongoing medical intervention he might live.  
This morning when I woke up, 23 weeks pregnant with two babies I already love so much, the joy was gone and I don't know what to do next.  We have so many questions and we don't know where to go to get them answered.  
How do I grow a baby only to let it die?
How do we choose a life of pain and surgeries and hospitals for a baby?
How do we give Baby A the life he or she deserves?
How do we do this in India where our jobs (and insurance) and friends are? 
How could we afford to go to the states to get our baby the care he needs if we leave our jobs here in India?
How could this happen to us after all we've been through?