“Mom, how does this look?” she asked seeking both confirmation and approval. “It looks good,” I tell her. And it does. Now in middle school, on the precipice of becoming a teenager, she’s starting to learn how to do her makeup. I don’t mind her growing up at all. I’m also glad she seems to enjoy many of the same things I do and that we can share those with each other. Then, there are ways in which she is solely her own person. Not I, not Loren, but a new person growing and changing, and becoming someone all her own. I relish it. I am thankful for it.

We, of course, weren’t granted such a happy fate with our youngest daughter. Not only did she die, but we knew she would, which, in the grand scheme of life and parenthood, may have been the cruelest fate of all (for us): living with the knowledge of her impending death at such a young age, and not only that, but before her death was to occur a relentless genetic monster would take away all of her physical and cognitive abilities.

Let me stop right there to make sure that you know that her life was nothing but a blessing to us. Every moment we were allowed to spend with her was a magical time that taught us the importance of unconditional love, and value of our own mortality. And it changed us in ways we’re still discovering only now, four years after her death. Some for the better, some for the broken.

We are strong, it’s true. Sickeningly so. We just don’t want to have to be, that’s the thing. That’s why people who are in our position often hear repeatedly how someone else couldn’t imagine. They just don’t want to. We don’t either, but unlike you, we didn’t have a choice. We hate to hear that you think we’re strong. Especially when we feel anything but. And when you tell us this, you may not realize it, but it often adds undue pressure to our burden. Pressure of an image we feel expected to maintain.

Four years later I know that the choice we had was whether or not to fight this battle together. We chose to do so with each other. And it’s not just that seven years ago, when we were told our daughter was dying that we walked out of the hospital and made a conscious choice to stick together, it’s that we continue to do so each and every day, even now.

Can we just be real? It is not easy. We have problems. Some of the same problems you probably have, but others that whether we would have had or not had we not been through the death of our child is only speculation at this point. The point is, they exist, so what do we do about them?

I think we’ve always tried to be proactive in acknowledging an issue and trying to work through it. I think communication is one of the cornerstones to ours or any marriage. But that doesn’t mean we always practice it. It’s worse when you can’t even put your finger on it yourself. How, then, are you supposed to communicate that to your partner feelings you yourself can’t understand? Especially if it’s something you’re not proud of, or you might even be scared to admit to yourself, let alone anyone else.

We haven’t always been kind to each other, but recently, with both of us separately on the verge of falling apart, we made a change. We both got honest, with ourselves, and with each other. It was a terrifying admission on both of our parts, but also, in some small hopeful way, freeing. A burden began to lift just by admitting our faults, and choosing to do something about them instead of continuing to spiral into oblivion. Neither of us wanted to live the way we were.

To be candid, Loren deals with fits of explosive anger. Deep seeded anger simmering below the surface that began in his childhood, but has been amplified into rage over time by the events of our shared life and the lack of dealing with these existing feelings for so many years. It’s all consuming. It lurks around every corner. It bleeds itself into every aspect of his life and affects his actions and behaviors in an unhealthy manner. No steps can ever be light enough as to not crack those egg shells. It’s something he’s realized cannot be mind-over-mattered through on his own.

I on the other hand have only recently become aware of the anxiety that’s swallowed me up and refuses to release its grip on my mind. In seemingly normal every day occurrences the fear of the what if overtakes my ability to remain calm and collected. To say I worry would be a vast understatement. The need to maintain the upper hand and to constantly reassure myself that everything is okay has turned me into fearful, controlling, unforgiving, judgmental shell of the formerly vibrant person I feel I can no longer recognize. I’m constantly on edge, lashing out, waiting for some other shoe to drop.

He’s become a scapegoat. I can’t admit I’m wrong.

Enough.

Enough trying to be strong.

Enough pretending to be ok.

Enough trying to prove that we are.

Our daughter died, and we are not ok.

It hurts so much.

But we want to get better.

We won’t let this form of grief be our undoing.

Loren has sought out counseling, recently, which has been a life changing experience for him, and for us. He’s gaining the tools to manage his anger, and to work through is feelings in a productive way. I have finally admitted to myself, and to him how swallowed up by fear and anxiety I feel I all the time. Why it is I’m so controlling, how scared I really am. I too, need to address this issue, and I think finding someone to talk to about it and mitigate the feeling would be a good idea for me as well.

We’re not there yet, wherever there is. Though we are getting there. We’re still staying the course. Someone recently asked me when grief goes away. “Never,” I replied. Grief is not a place to pass through and come out on the other side of, but a continual journey once you’ve been set on its path.

I don’t want you to read this and think that we think that we’re so awesome that even when we have an issue we make a spectacle of how awesome we are at working through it. I just hope that if you read this and you have any of these feelings that you can be real with yourself, and maybe even with your partner. I’ve had to learn that there’s no shame in not having it all figured out or under control. The only shame is in letting everything crumble around you without doing something about it. I know you won’t judge us, you can’t. You haven’t lived through our loss. And I want you to know that no one else can judge you, either. So if you read this and you suspect you might be a dark place like we were, please do something about it. It’s a lonely place to be, and I don’t want that for you.