09 December 2011

Fear Creeps In

If something can go well, it will.

I've seen this on bumper stickers and magnets all over the place. The phrase is a beacon of positivity in a world that tends to see the glass half empty. It is a gentle and encouraging nudge toward recognizing and embracing the good. I can get on board with that -- in theory, at least.

But every time I see of it, I can't help but think of what happened to Ewan. His story could easily be titled "If Something Could Have Gone Wrong, It Did."

From the moment he was first intubated, most things just didn't go right for him. Acknowledging this is not to say that there weren't good things that happened. Like any parents of a child with a heart defect, I can point to the ups in our story just as easily as I can point to the downs. When you're in the hospital with a critically ill child, you learn to ride the waves that come with both. No one expected him to make it through that all-night surgery, for example. And I remember a cardiologist coming to James and I after viewing the echo during Ewan's second trial off of ECMO: "Frankly, I didn't expect it to look that good." He was beaming from ear to ear.


So were we. We called our parents and friends. We updated Facebook. We hugged, kissed, jumped up and down, and had a celebratory bowl of ice cream at the Baskin Robbins down the street. Exclamation points abounded.

Something could have gone well that day -- and it did.

But if you're here, you already know the rest. I don't need to rehash for you just how very temporary the "going well" lasted.

When you've repeatedly ended up on the wrong side of statistics in something as high stakes as your child's life, it is impossible to shake the fear that something can go wrong again -- because it is no mere statistic when you're the one burying the child you gave birth to just three weeks prior. Even for one bent toward embracing the positive, it's difficult not to find that the fear of something going wrong is digging its teeth in. When this happens, not a single platitude out there -- no matter how true or well-constructed -- will change that. You can reason with yourself for hours on end until, in a frenzy, you find that deep down, you remain unconvinced.


It could happen again.

We have both felt it. I've had waking nightmares where my incredibly active daughter is born still. James has repeatedly caught himself referring to Austen as "he," unable to shake the thought that this is Ewan all over again. In many ways, this second birth is even more surreal than our first. Because we had our first baby. And then after a few weeks, we returned home, our lives from the outside looking much like they had before -- almost as if my pregnancy, his birth, his life, and his death never happened. It made the lines between what was real and what felt real a bit blurry. It felt as though someone had taken an eraser to the previous ten months of our lives, but left us with the trauma of what those months contained.

It's hard to shake. I wish that by immersing myself in positive phrases, reinforcing the facts of everything having gone so perfectly this time around, I could drown the fear monster and feel his teeth unclench. There is no reason to think anything bad will happen. The last thing I want is the fear of what could (but probably will not) be rob me of the joy of what actually is. Austen is here. She is active and healthy. Everything about this pregnancy has been perfect. We are preparing to greet  her in the most beautiful and welcoming way we can.

The truth is, I need a whole lot of "If something can go well, it will" right now. So when that fear creeps in, I picture me with my daughter in that first of many unbelievable moments. Labor is over and I'm holding her, her sweet skin right up against mine. There are no NICU nurses. There is no need for IVs or oxygen, no need to have her rushed away. I have no idea what it will feel like to make the leap from imagining I can hold her for as long as I please to finding that I don't need to imagine it anymore -- because it's real. Holding that moment in my mind makes me weep with joy every time as I mourn what all three of us lost the first time, and as I begin to feel those first small waves of healing that come even as I imagine the second.

It could happen that way. It really could happen.

35 weeks

The trauma of what has passed is very real, and that can never be undone. That is here to stay. Though the fear created by what has happened is not an entirely irrational, "out of nowhere" type of fear, it has no bearing on the reality of what is right now. What is real now -- in this very moment -- is that we have every reason to believe that our experience will be very different this time. Perhaps all that good won't undo the scar, but I sense already that the experience we are about to embrace will be a healing balm over it.

The fear will continue to creep in. There is no use in pretending that it won't. But until I have a darn good reason to believe otherwise, I am choosing to cling to hope that it can go well -- and it will.