Part One: https://www.cougarboard.com/board/message.html?id=26207094

Part Two: https://www.cougarboard.com/board/message.html?id=26213437

Part Three: https://www.cougarboard.com/board/message.html?id=26218593

Part Four: https://www.cougarboard.com/board/message.html?id=26228386

Part Five: https://www.cougarboard.com/board/message.html?id=26234374

Part Six: https://www.cougarboard.com/board/message.html?id=26241845

Part Seven: https://www.cougarboard.com/board/message.html?id=26246872


Four times we have handed our sleeping or anesthetized little girl to a surgical team hoping that we’d get her back. And all four times we have.

That feels like a miracle.

Our daughter is a fiercely happy, strong-willed, funny, socially fearless, bright child.

She is a beautiful miracle.

She’s made it 7 years despite her fetal cardiologist asking us twice if we wanted to abort.

Another miracle.

Wards, family, and friends have fasted on multiple occasions for positive outcomes to complicated surgeries. And she has received those outcomes.

Miracle.

So everything should be unicorns and rainbows, right?

Well, everything’s not all right, and I feel guilty about that. My daughter is alive and thriving and beautiful, so shouldn’t I just be grateful for that and get on with things?

Maybe, but the sustained stress and trauma have had their impact and I bear a lot of responsibility for not having better methods of dealing with the trauma and stress (then and now).

Having said that, I’m going to attempt to articulate a few things I’ve observed or learned along this journey that have been helpful. I don’t profess that any of my observations will be profound or original. My intent here isn’t to preach about how someone should deal with trauma. This isn’t a “you should do this” list of items. Rather, these are just my musings and observations. If anyone happens to find any of them helpful, I supposed that would delight me, but I’m not expecting that.

And for the record, I’m often struggling to incorporate or sustain these things in my own life. So I'm not an expert or anything.

With that long list of caveats, here goes:

It’s okay to not be okay.

We do ourselves a disservice if we think our reactions to traumatic experiences have got to be ones that turn into inspiring stories or uplifting church talks. Maybe one day that will be true, but any pressure to make that true is unnecessary and harmful. Sometimes victory is that you get out of bed and face another day. Sometimes victory is that you stay.

The stressor might go away, but the stress doesn’t.

This is a tough one. We tend to expect that once the traumatic event is done, we can just get back to “normal” or how things were. It will take time. And maybe some counseling or other form of healing to get to a better place. You may very well find yourself experiencing all the stress of the traumatic event(s) weeks or months or years after. That’s sort of the nature of trauma. It has an aftermath and it is most likely going to require a deliberate strategy to deal with. That’s normal and it’s okay and there are plenty of healthy ways to help manage this. I’ve used counseling, exercise, meditation, listening to podcasts, reading self-help books, reading speculative fiction (the kind that stretches your brain and fills your head with new ideas or insights), social activities, listening to music, writing in a journal, writing poetry, etc. I’m sure you could add a hundred equally positive and effective things.

Just move.

You can't be guided if you aren't moving. So rather than waiting until you are sure about doing the exact right thing, you can just start moving and go from there. The Lord, the universe, whatever terminology you are comfortable with, will help and guide you if you are putting in the effort.

Being present is a superpower.

I had what I will call an epiphany some time ago. With our daughter’s complicated heart condition, I knew that we didn’t have any guarantee of a long life with her. She could go into decline at any time and we could lose her. But at some point it dawned on me: how is this different from anyone else? None of us have any guarantees about tomorrow or the time we have with our loved ones. We only have today.

Focusing on today and enjoying right now not only helps me connect to the important people in my life, but it also helps prevent me from obsessing about the future, worse-case scenarios, and things over which I have no control. (Sometimes I still obsess over them.)

Meet people where they are, not where you want them to be.

It can be difficult, uncomfortable, even awkward to sit with someone in their pain, to meet them there. And so we often unconsciously avoid it, which leads to many well-meaning, but ultimately unhelpful interactions. For example, we may offer empty platitudes, or trivialize/diminish the pain, or inadvertently put more on the person’s plate by expecting them to tell us how we can be helpful.

All of these strategies are well meaning, but they are often an attempt to pull someone from where they are to a place that makes us more comfortable.

When the one sheep strayed from the 99, the good shepherd didn’t wait for the one to meander back or wander to a more convenient place to be rescued. He went to the one, wherever that was. So if it feels awkward and uncomfortable, you are probably doing it right.

If you’ve read this far, you are either really bored or really kind. Either way, thank you for following along as I did my best to put this journey to paper, so to speak. I’ve done my best to be accurate. I’m sure there are a few places where I failed. And there are lots of things I could have added but didn’t in the interests of time and of not overwhelming you with too many details.

I hope I don’t have any other chapters to add to this story for a long time.

To end on a positive note, I’ll share that my wife has been working on and off on a website for a while. Its purpose is to gather/aggregate resources that already exist for heart families (friends and family of children with heart conditions) to help them navigate what is going to be a crazy, frightening, stressful journey. Frantically googling about your child’s condition is normal. Finding a community and getting helpful information can be difficult, hence this website. Hopefully, we can launch it before the year’s end. It’s been crazy trying to find a developer (we’ve had two, maybe three flake on us), so my wife has taken some training on website development and has been working on it as best she can. Truly, a labor of love.

Thanks,
NYC