2012

It's the 31st again. The last day of December.  And the last day of 2012.

This year did not go as expected. In fact, by all accounts, it was pretty miserable.  My husband was more sick than not, culminating with major surgery over the summer. It was hard having a father and a husband out of commission, taking care of two littles and being pregnant.

And then we lost Sarah.

2012 was horrible.

But if I had to do it all over again, I would. I didn't enjoy my husband being sick.  But he was home for more time than we've spent together in years. Yes, it was hard. But it was also good. And at 6 months post-op, he's now free of all the symptoms which caused his pain.  We prioritized and he finished (and passed!) another semester of his post-grad semester. For this, I am thankful.

My Jonah started kindergarten and took the world by storm.  His teacher adores him and has truly nurtured him during this trying time. For this, I am thankful.

And my Rachel exploded in words and personality.  She speaks in full sentences, challenges her big brother at every step, and appears to be one of those girls who will always have an opinion.  Kinda just like her Mama.  For this, I am thankful.

And we lost Sarah this year.  But we also had her.  We had her safe, warm and loved for 41 weeks and three days.  She knew our voices, she knew she was wanted.  And all of this was in 2012.

So 2012 was horrible. But I'm glad we did it, together.

Surprise

I hadn't realized that the genetic counselor's office was smack-dab in the middle of one of the largest OB-GYN practices in the area. I think I was fixated on the date and time on the letter and not at all on anything else.

So when my husband pressed the elevator button for the second floor, I snapped at him. "I'm not pregnant. I'm not going to OB-GYN." To say I was mean would be an understatement. My response was visceral.

Of course, he was right. The second floor was where we needed to be.

So we walked into the office and stood in line. Waited for a receptionist to help us with the paperwork. Signed away. Then waited in the waiting room. It was loud, with one flat screen TV showing a cooking program. And the other was showing public service announcements on health issues. You know, like the importance of taking folic acid to prevent neural tube defects? Yup.

So now I'm really filled with angst. In an office filled with pregnant women and babies, waiting for a stranger to give me statistical odds of whether we should dare risk another pregnancy, and the TV is freaking me out with it's mind-reading abilities.

Clearly, I've become very accustomed to seeing my midwife - and the stark contrast of her office compared to this bustling place.

Michelle rents space, inside of an old Victorian-style house, from a chiropractor. No need to remember to get your parking ticket validated. You just roll up in front of the building. There's no waiting room. Just a chair or two outside her door. Which I usually bypass, because her door is open and you can see her balancing on a ball that is pretending to be a chair. I get a smile, a hug and get offered a cup of tea. No name tags, no badges. No secretary, no nurse. No surprises about who I will need to meet and explain myself to.

But i was surprised by the form I had to fill out at the OB-GYN's office. It was a short notification that they could not accommodate your gender preferences for medical providers. And if you didn't like it, you were free to find a new place to get care.

I signed it, of course, because I wasn't there for them to look under the hood. But I wondered: did the patients know it didn't need to be like this? Did they know that they didn't have to be a number? Did they know that small, intimate practices exist, that their insurance would cover it in full? And that bigger doesn't mean better?

Our meeting with the genetic counselor was fine. And everyone I interacted with at the practice was polite, courteous, and professional.

But I couldn't help but let my mind drift - if I was a patient there, would they remember my name? Would they have cried with me, remembering Sarah's birth? Would I have wanted them there, at Sarah's funeral? Do they understand that it's not just the medicine to fix that matters, but the compassion to still be there when things fall apart?

I'm so glad that we did see the genetic counselor and that perhaps we will know more in a few weeks. But I'm more pleased that the results will be sent to my midwife, my Michelle. And that we'll be able to review them, together.

Half full

Had an extensive and detailed conversation with the geneticist. She took a full family history on both sides and gave us many options.

Three items of interest:
1. We both gave blood to the lab for DNA sequencing, looking for an explanation of my recurrent miscarriages.
2. Yes, I need to be taking a metric boatload of folic acid
3. The risk of having another child with a neural tube defect, assuming the blood work doesn't reveal anything else, is less than 2%. Or as my midwife says, a greater than 98% chance s/he won't have a NTD.

Results will be back in about 2 weeks.

Feeling relieved that the appointment is over. But remind me to blog about their enormous office..

Avoid

My favorite genre of movies are post-apocalyptic thrillers. People in dire circumstances, making life or death decisions. Volcanoes erupting in LA, zombies in Walking Dead. It's all fair game.

With these dark gray days and early sunsets, it feels quite like my own apocalyptic horror show. It's not that I can't find reasons to laugh. Because I can. And I do. But nothing feels quite real.

I made myself go for a haircut yesterday. I wanted to do it, but it's hard to put effort into looking nice. I did a walk-in appointment at my salon and ended up with a perfectly nice cut from a young stylist.. whose name is Sarah. I almost choked when she introduced herself. It's not like it's an uncommon name, but one of the reasons why I had put off the cut was the awkward chitchat that accompanies the visit. And the day before Christmas, who doesn't make small talk about families and kids? So I bit my lip and kept it light. I avoided talking about my Sarah. And instead asked her about her own life.

I survived the visit. And my hair looks fine. But I had my own zombie-inspired nightmare last night. My conscience was unsettled.

The end was most remarkable; a dark man with a sickle carrying a car seat, saying, "You forgot her."

To the moon and back

My husband is a private dude, so I've refrained from mentioning him much on this blog to respect his privacy. But there is something specific that I would like to share.

One of our first conversations after we came home from the hospital, without Sarah, was a promise to each other that we would not allow this tragedy to pull us apart. I had remembered reading that many couples do not make it through the loss of a first child and I told him this. Our marriage has always been strong - and he has been my best friend for almost 15 years. But I know how quickly grief can turn to anger and resentment. Losing Sarah was an unimaginable tragedy, and there was no way I could bear to lose him.

Saying it out loud was important. And allowed me to move forward by acknowledging my fear. That we wouldn't hold back, that we would face these feelings together. I love you, Joe.

Not quite there

I spent the morning with just my five-year old.  It's something long overdue that we don't do nearly enough.  Usually I like to send the kids off with my husband to run errands on weekends and to take a break from it all. Or I soldier the courage to join them and we go off as a family to conquer several stores. Yes, I'm comparing it to war. It requires patience, planning and often results in injuries. 

So today Jonah and I went off to the grocery store. It was delightful. He was kind and helpful. And watching just one child out of my peripheral vision rather than two (and going cross-eyed) was amazing. Afterwards he asked if we could spend more time together. And we did. We went to the library, borrowed an iPad for an hour and nerded out together.  Our visit was finished with Legos and of course, checking out books for the week.

It was the sort of time and full attention that I could never have given him at this point in the game, had Sarah lived. And so I was there with him, doing all of these things, putting on the bravest face possible. But all I could do was think about her.

Tests

We have the genetic counseling appointment set for late next week. I'm hoping that they may be able to provide us with some answers as to why Sarah developed spina bifida occulta, a Neural Tube Defect (NTD). I wonder if a folic acid problem contributed to the bleeding I had in all my pregnancies. I wonder if they will find anything that would lead us to believe that future pregnancies will yield a happy, healthy baby.

This is where my blog tackles what has unfortunately become a political issue in the US - the right to terminate a pregnancy.

I am pro-choice. It's not that I want to have an abortion. Or that I could give you a set of absolute circumstances that would make me choose to abort.

But I am adamant that every woman has the right to healthcare that comes from a place that respects her faith, values and medical history. This means that she consults her doctor, her midwife, her clergy, partner, family and friends - not a politician looking to be re-elected.

I bring up abortion because it's one of the reasons we previously avoided extensive prenatal testing. My logic, up until Sarah was born, is that we had two previously perfect children with no factors that suggested that future pregnancies would be any different. And knowing about a potential defect would mean having to make decisions that I did not even want to contemplate. I preferred to do standard testing and not investigate any further than necessary.

But now things have changed. In this post-Sarah world, another pregnancy could never be considered normal, typical or unremarkable without ruling factors out.

It's the flowchart that I don't want to draw. What if we discovered that we conceived another child with a NTD? Could they predict the severity? Would she be viable? And could we deal with another loss, whether through a deliberate decision to terminate or another stillborn experience? And of course, all the shades of gray in the middle.

I write all this because it needs to be said. None of this is easy to write or ever consider. But they are the thoughts in my head and they are true. And these days, it's all I've got to hold onto.