Courage, Hope, and Other Faults

As you know, if you have read my story up to this point, my wife and I gave birth to a daughter who had congenital complications about 18 months ago. We ended up making the decision to take her home on hospice where she passed peacefully.

The last couple of years have been trying, to say the least. I have vivid memories from the days leading up to when we brought her home.

Courage doesn’t make you feel you better

My wife and I, as well as some of her extended family, were sitting around a table. We told them what we were planning to do. One of my wife’s uncles responded with a simple, “That is brave, so brave…” Tears welled in his eyes.

We had not thought of ourselves as brave. We were simply her parents, doing what she needed of us, even it hurt us deeply.

Being told we were brave, while very kind, was a poor salve for the wound we would nurse.

And so we rode through the mountains, with her on a portable ventilator, talking to her as we went. We watched her pulse oximeter drop with deceleration, her lungs unable to maintain with the additional pressure of her organs on her diaphragm.

So fragile was she born.

Yet, we have never second guessed and we do not regret. Such is life, we are promised nothing.

Hope can feel like a Fool’s Errand

Grief is a hell of a ride. The loss of our daughter, coupled with my disillusionment with medical practice, dealt me a double blow. I often found myself wondering what the point was.

Not the point in living, I was never suicidal – though I now have more empathy for those who get there. I do mean the point in trying.

After spending years pursuing a degree and training to help people, I found myself among the greediest, least introspective, and least honest people I have ever known. I doubted my own integrity simply because I had ended up among them.

And then, as my wife and I decided to start a family, we were gifted a gorgeous little daughter, who was not destined to remain with us.

The universe seemed out to teach me something, in the most painful way possible. Fate brutalized the two most significant parts of my life in short order.

Why try, then? Why hope?

We Don’t Have a Choice

Much like time, human beings must only move forward.

Hope, for my wife and I, was not simple. I quit my job. Luckily, this required a 90 day notification, so we were able to take some time to grieve. Then, we moved back to her home city. She got a job to secure health insurance and started working 1099 locums.

This was all done less than 6 months after our daughter died. It was a matter of survival. We were running on fumes.

Finally, after finishing our dash for survival, we had to truly face the future. We had to decide whether we had it in us to hope, to risk, and strive all over again.

And we did.

My wife recently gave birth to our second daughter. She is gloriously average. She is of normal weight, normal length, normal appetite, normal irritability. In a blissfully ignorant way, she is making stupidly adorable baby noises next to me as write this.

A Harrowing Gestation

As you might imagine, the nine months of this pregnancy have been gut wrenchingly anxious. The medical staff of a large research University, as a rule, made this worse.

Our new daughter did as well, by waiting a full 41 weeks before showing up – without an induction (though we had scheduled one).

We had so many instances of fear and hope and grief over the course of this pregnancy. While I plan on exploring these in more detail in future posts, it didn’t seem appropriate to do so before her birth.

“Our stories are not meant for everyone. Hearing them is a privilege, and we should always ask ourselves this before we share: “Who has earned the right to hear my story?” 

-Brene Brown

Both my wife and I felt that exploring these emotions prior to her birth on the blog was somehow not the right thing to do. It would have been inappropriately vulnerable.

The time for chronicling the complexity of awaiting the arrival of a child after loss was, for us, not until she had arrived safely.

And so we waited, and she is here, and we are happy, in a complicated way.

Shortly after my wife told me she was pregnant for the second time, we sat together in fear and grief and cried.

She looked at me and asked, “Why are we doing this? Why are we even trying?”

My heart broke. Of course, I felt the same way at times. I looked back at her and mustered a simple and resigned, “Because we are brave people and this is what we do.”