Anencephaly

Being “Aware”

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October is, apparently, “Pregnancy and Infant Loss Awareness Month.” I have never been one to get very excited about raising “awareness.” It has always seemed a little lackluster—all hat and no cattle– and left me feeling like all I am doing is helping to buy more rubber bracelets that will never actually be worn…but, I have been wondering if maybe, I was wrong.  Maybe we all need to be a little more “aware” of one another’s struggles—maybe we all need to remember to think before we speak, keep our comments kinder, and remember that everyone is fighting their own battle. More often than not, those battles are invisible to the naked eye.

Once again, I have found myself enlightened by my own experiences—most recently, my battle with grief. Grief has left me feeling equal parts emotionally fatigued and selfish. The fatigue I can handle, but the selfishness is harder for me to both articulate and address. Frankly, I am a bit embarrassed at my recent inability to look beyond myself and my emotional state. I have always prided myself in being sincerely empathetic, but emotional responses that once seemed so natural now feel a bit forced. And as odd as this might sound, I am having a difficult time striking the right tone, quite literally. Sometimes, I hear myself talking, and I can tell I sound a little off– a little too enthusiastic and bright. I suppose that I am trying to “fake it till I make it,” but its proving much harder than I ever anticipated it would be.

I kept telling myself that if I could get through June, if I could get through the summer, I would start feeling better and everything would be okay. I would have a new season, and a fresh start. But as the leaves began to change instead of starting to feel better, I have just been reminded of how different I had planned on this season of my life being. Travel plans, holidays—we had planned everything around having a baby in the beginning of November, and we won’t have a baby then.

For a while, I tried to convince myself that if I can just make it past our due date that I will start feeling better, but that too has started to feel like wishful thinking.  I have lately been reminded that you can’t put an expiration date on grief, and I just need to find a way for it to be a part of me without letting it define me. Moreover, I am never going to feel as I did before. I have said it before, but grief has a way of leaving an indelible mark, and people that have been touched by it never forget. And just like Alice, “I can’t go back to yesterday because I was a different person then.”

But back to “Pregnancy and Infant Loss Awareness Month,”  I don’t feel the need to make people “aware” of my story per se (except for that massage therapist last week, but I mean, she was really nice), but do I think that we should all be “aware” of how what we say and do impacts others. Each time someone who doesn’t know me well jovially asks why my husband and I don’t have any children yet (if you ever ask people this question, please stop doing so immediately) I try to keep my composure and brush the question off, but it’s upsetting. Almost as upsetting as when people I do know make jokes about me being better off without kids because they are so much work or too expensive. I could go on in this vein, but every unintentional, stinging comment is a reminder not only of my recent loss and pain but also of all the times that I have flippantly inquired about others’ personal business or lives. I cringe when I think about the times that I have asked people about marriage plans, future children or a myriad of other sensitive subjects.

Moving forward, I am going to try to be more “aware.” More “aware” of the potential, unintended consequences of my words and actions, and more “aware” of how others might be hurting. Hopefully, my recent experiences and grief will help me be a better friend and a more comforting presence to those in my life that have faced insurmountable challenges. But at the very least, I hope that I always remember to think before I speak/act/post and spare people any additional pain.

And,

That’s All She Wrote

Grief: Can’t Go Under it, Can’t Go Over it. Gotta Go Through It

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Grief feels like a language that I am still learning to speak. Thick and heavy on my tongue, it’s syntax is still new to me. Yet as I struggle to find the right words, I have a new appreciation for the many people I know that understand and speak it fluently. Like a traveler to a foreign country, I am comforted when I encounter someone who shares even a little of this new language with me. And in my lesser moments, I envy those who are unable to understand even a snippet of it.

I have learned that grief has a way of leaving an indelible mark, and people that have been touched by it never forget.  Like a tattoo this mark might be displayed openly its symbolism explained in great detail to all whether they ask or not, shared with just a few, or dutifully hidden. Yet no matter who sees it, the mark remains, and although each one is unique, many of us bare this type of mark.

Grief is both a singular journey and one of life’s most widely shared experiences. While it stems from a unique place,  those that grieve similarly find themselves at the edge of a great chasm. This deep abyss can be crossed but the journey is not easy; there are no maps or Sherpas. We must navigate our own paths and carry our own, heavy loads.

As I find myself at the edge the first chasm that has been put squarely in my path, I am reminded of one of my favorite children’s books, “We’re Going on a Bear Hunt.” The premise is that when confronted with an obstacle, you must meet it head on–“Can’t go under it, can’t go over it, gotta go through it.”

Eventually, I must cross through this chasm because, if I want to move forward, I will need to get to the other side. Fortunately no one is timing me, and I won’t be judged too harshly if I get lost a time or two. But someday, I will reach the other side, and when I do, I won’t forget the journey. Rather, I will bare that indelible mark, and I will remember because some things are far to great to forget.

And,

That’s All She Wrote

The Longest Day

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This year, the summer solstice fell on Tuesday, June 21st which was fitting because Tuesday was the longest day in what has felt like the longest month of my life.

My husband and I started June joyfully counting down the days until we would find out the gender of our first child. We were looking forward to getting serious about names and nursery themes (okay, I was maybe the only one excited about nursery themes..). When the doctor called and asked us to come in for an ultrasound due to abnormal quad screen results, my heart plummeted. My husband and I wanted nothing more than for our baby to be okay. As first-time expectant parents we worried about being able to give our baby the best possible life even if that life would be different than the one we had hoped and dreamed.

Yet, we still hoped and prayed that it was nothing and that the doctor was just being overly cautious, but I think we both knew that he would never unnecessarily worry us. At our appointment, we learned that our sweet baby had anencephaly and would not survive for longer than a few minutes, hours, or, at most, days after delivery.  I would be lying if I didn’t say that was a big pill to swallow. We were scared that we couldn’t be brave or strong enough to survive the coming months.

I have never felt so vulnerable. Normally, I am a very private person, and here I was emailing coworkers and texting acquaintances to explain the situation. It was hard, but somehow, sharing made it more bearable. I frequently thought of a favorite C.S. Lewis quote from “The Four Loves,” “To love  at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken.” Our hearts were broken, but we had so many people working to help us pick up the pieces. My husband and I will have to work on putting those pieces back together, but I know that we can (it helps that he loves a good jigsaw puzzle). With each passing day, it started to become easier to accept the diagnosis, and we were determined to love our baby the best that we could for as long as we could.

On June 21st, we went in for an appointment to ensure that both our baby and I were doing as well as possible. We had prepared questions about a birth plan and were anxious to inquire about the possibility of organ donation. It was truly a shock to learn that we had miscarried. I guess it is true that “the best laid plans of mice and men often go awry.” *Shout out to my mother-in-law for successfully pulling out the appropriate Robert Burns quote and to my husband for knowing it was correct. What was otherwise a beautiful and still summer day became gloomy and dark in our eyes and hearts.

Although this new reality may be less physically trying, the emotional strain remains the same. I keep saying that June has been an emotional roller coaster, but that isn’t quite right because the lows keep getting lower and we haven’t managed to climb to any new heights. I have thought a lot about our decision to have the quad screen done in the first place. Initially, the possibility of it coming back abnormal felt distant and unlikely. We did it as a precaution with the thought that if something were awry we would want to have extra time to be prepared. Had we not had it done, we would have gone in for our anatomy screen only to learn that we had miscarried. We wouldn’t have had two extra weeks to love our baby and to be reminded of how much our family and friends loved both us and our baby. I needed those two weeks.

As we near the end of this month, I feel older and more vulnerable. Tears feel closer to the surface and laughter is not bubbling up quite as easily. But most importantly, I feel loved, and I feel love.

And,

That’s All She Wrote

*Song credit goes to my dear friend, Anna Schulze, who best conveys comfort through her music.

 

To Live is an Awfully Big Adventure

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I love children’s literature–especially the classics. They are all that is simple and good; there is none of the strife of the real world just simple lessons that most adults, including myself, can benefit from, and reading those books is an opportunity to escape from the harsh realities of “adulting.”

“Peter Pan and Wendy” has long been one of my favorites. I can never decide if I am more like Wendy or Peter, but maybe it is less about who I am more similar to than who I want to share more similarities with. Likely, everyone would tell you that I am a Wendy. I want to take care of and make people comfortable.  I love a plan, and Wendy seems like the kind of girl that likes a plan too. Peter, on the other hand, is so untethered. He operates on whims and fancies, and surprisingly, that is something that I envy.

Peter is always ready and willing to go on an adventure. In the book, Peter even goes as far as to say “to die would be an awfully big adventure.” The quote has always stuck with me. Although, I must admit that I much prefer the variation that was used in the popular Robin Williams movie, “Hook,”  which is “to live would be an awfully big adventure.” Recently, I have been reminded that living, is indeed, an awfully big adventure, but all adventures come with their fair share of challenges and strife. It isn’t all mermaids and flying; more often than not there are pirates lurking out at sea. And, some nights it feels as if a heavy fog has settled, and it is far more challenging on those nights than on others to find the “second star from the right” and fly “straight on until morning.”

When you are on an adventure, one of the greatest difficulties is changing course. My husband and I were thrilled to learn that we are expecting our first child, and we were preparing for the adventure of parenthood and raising a child. It was going to be a great challenge, but it is one that comes with many very tangible as well as intangible rewards. Unfortunately, we have had to change course after learning that our sweet baby has anencephaly and will not survive for more than a few minutes, hours, or days, at most, after delivery. We are now challenged with loving and caring for our baby the best that we can for as long as we can. We are hopeful that there will be rewards in this challenge as well, but I don’t think that they will be the tangible type. Right now, we are trying to navigate through the fog to find the “second star from the right.”

I know that it will take us awhile, but we will continue to move forward. I hope that I can be a little more like Peter and have the courage to embrace this element of our adventure. Because of course, it wouldn’t a true adventure it were easy. And in the meantime, I might pick up a few more children’s books to read.

And,

That’s All She Wrote