The Great Without: Reclaiming a Life & Legacy amidst Recurrent Pregnancy Loss

October 15th is International Pregnancy & Infant Loss Remembrance Day. You might’ve also heard it called the Global Wave of Light.

On this date each calendar year, we honor lives lost too soon, and their surviving family members, by lighting a candle for an hour, starting at 7PM local time.

Want to help raise awareness? Post your shining candle with a statement of support and #WaveOfLight.

Not sure how to help after today? Keep reading. You being here is a great place to start.

Ryan Vale McGonigle | North by North Carolinian

Recurrent, unexplained loss. Though I could not name them until recently, these three words have come to define my life. This losing — of people, places, things — is completely devastating. It’s delivered more as a pummeling than a clean, repeated removal. It’s a bad dream, a cruel joke, a punch instead of a punchline. And it’s not something I’d wish on anyone, ever.

It’s a bad dream, a cruel joke, a punch instead of a punchline. And it’s not something I’d wish on anyone, ever. — Ryan Vale McGonigle

The worst part is that when you go through this type of loss, you learn to anticipate its return in a co-opted brand of disaster preparedness, one where it feels like all you can do is wait to be pummeled again. Who wants to live that way? Not me, but here I am and here we are. May as well do something useful!

I’m not here to discuss the broad reaches of my life. That’s work best suited to forms longer than personal essay. What I am here to do, in a month where it really matters, is discuss unexplained, recurrent pregnancy loss, and provide some tips on how to go about living with or supporting other “waiting” parents through it. I’m by no means an expert, but I do know a thing or two about what it feels like to miscarry repeatedly and without medical explanation, and that counts for something, right?

Our journey begins in 2017. For a year, my husband and I tried and failed to get pregnant, mostly because I was lightyears off about when I was ovulating. It’s no wonder we didn’t conceive. Fueled by frustration, we decided to take some “time off” … and then it happened. We were expecting!

That joy didn’t last long. In week eight, we found out that we would eventually miscarry, and by the tenth week, it was over. It took me months to recover physically, and in all honesty, people in these shoes can spend the rest of their lives healing emotionally and spiritually from that kind of loss.

Our struggles didn’t end there, though I wish they had. For the better part of the next two years, my husband and I had an unbelievable mix of highs and lows. Unlike hoping-to-expect couples, another “waiting” community, our challenge has never been expecting. Achieving pregnancy, thankfully, does not seem to be our burden. But then again, maybe it is.

For whatever reason — and perhaps there isn’t one at all — my body will not hold pregnancies through the first trimester. We’ve been close a few times, even allowed ourselves the indulgence of picked names, Pinterest-decorated nurseries, and imagined registries from our favorite stores. But in the end, our story always ends the same way: blood, tears, and calls back to the doctor.

[P]eople in these shoes can spend the rest of their lives healing emotionally and spiritually from that kind of loss.

Ryan Vale McGonigle | North by North Carolinian

In the beginning of this journey — that no one asks for, by the way — we believed our struggle would be short-lived. We honestly believed that with the right set of answers, a happier, biological-child-including future would materialize. So, we did a lot of the things that couples in our shoes tend to do. We prayed, we went to appointments, we took supplements, we tried new diet and lifestyle routines, we tried to get pregnant, we tried not trying to get pregnant, we tracked cycles and symptoms, and in the end, all we did was go mad. Mad with frustration, mad with envy over other friends’ and families’ happy announcements, mad with each other, mad with our God, mad at anything and everything that was — and sometimes wasn’t — related to our “ongoing situation.”

And that’s another thing. We need to talk about labels. We wouldn’t dare speak for anyone except ourselves, but for us, “unexplained, recurrent loss” is a label of what we’ve physically experienced, full stop. It says nothing about who we are, what we desire, or even what we have been through, after you remove the clinical list of happenings that get reported to OB/GYNs in appointments we wouldn’t wish on our worst enemies. No, to get an accurate read on our “ongoing situation,” you’d have to know that this experience, our experience, is more aptly named The Great Without.

By this, we mean not just our losses, past tense, but our grief, present and future, as well. We grieve the reality and idea of parenthood just as much as the children we never got to take home. This is an acute point, bordering on belabored for those in-the-know, but largely missing from the consciousness of some parenting and childless-by-choice people around us, so it bears repeating: this is an entire way of life that we grieve. Saying anything less fails to portray anything close to an accurate picture. We are devastated, short and simple.

And that’s another thing. We need to talk about labels. — Ryan Vale McGonigle

To be very clear, being not-quite-parents in a sea of responses ranging from “We’re pregnant!,” and “I can’t wait to have another!,” to “Someone please take this child,” or “I can’t wait to get rid of this pregnancy,” and “Thank God I’m childless,” is emotional labor Every. Single. Time. It’s exhausting, hidden work, and we both struggle with the knowledge that’s it’s a job from which we cannot simply resign every time we’re mad that another “coworker” gets “promoted” to (or within) the parenthood club. That really stinks to admit, but it’s the truth, and more people need to speak on it so it’s less stigmatized.

Don’t get me wrong. We support the people and families in our lives to whom these statements pertain. Truly and deeply, we do. But to write this essay pretending that it’s easy to be strong would be a gross disservice to us, others like us, and everyone else who supports us. We aren’t going to do that.

Instead, we’re starting with intimate, piercing awareness, because that’s the tool that inspires some of the most lasting change. Awareness of what? The Great Without, of course! The period of our lives that we hope is the last major “stop” before we become parents, though perhaps through creative means. But first, you’ll have to understand.

The Great Without, as we’ve come to call it, is like living in a hole way below ground. We watch everyone else above us live relatively freely in whatever child-related lifestyles they’ve chosen, but often feel forgotten amidst their celebrations, lamentations, and rightful sources of stress. The problem here is that the investment of time and interest in each other’s lives isn’t balanced, and that’s something we have been working on for the better part of a year.

Some individuals and families have already been heroic in their efforts to truly listen and appropriately respond, but there are (and always will be!) others who can’t be bothered to change. From them, there is no “how are you faring?,” nary a rope or ladder offered unless it benefits them. I know, that’s not okay. We’re also learning not to accept this selfish behavior anymore. It’s been a learning experience, whether or not we’ve wanted it.

Don’t mistake me. It hasn’t all been bad. One of our best discoveries, for example, has been that we are never truly alone, whether or not we’ve got strong in-person support. That’s because, for better and for worse, the infertility community has no choice but to be very vocal. Otherwise, we’d rarely be heard — or at least heard fully and well.

Some community members are vocal quite regularly. Others go a step further and encourage additional voices to share their experiences, rather than relying on their own, or on oft-repeated statistics and opinions of whatever expert the internet says we should believe on any given day.

And no matter their approach, these brave individuals are all to be commended. Their efforts to raise awareness and improve outcomes for not-quite-parents like us is Big Work, especially when you consider that many are already emotionally drained before they get working at all.

And no matter their approach, these brave individuals are all to be commended. Their efforts to raise awareness and improve outcomes for not-quite-parents like us is Big Work, especially when you consider that many are already emotionally drained before they get working at all.

Ryan Vale McGonigle | North by North Carolinian

Make no mistake, there is a large, giving community available to those who seek it. But somehow, lots of their stories still reference the feeling of walking alone. That reality makes painfully, publicly clear what many privately already know: we need more courageous voices to join this conversation.

For those of you saying, “We’ve come so far!,” you’re right, we have. But we still have so far left to go. Until the statistics of one-in-eight (U.S.-based couples facing infertility) and one-in-four (known pregnancies ending in miscarriage) come way down, and until more unaffected people understand them in the meantime, Big Work needs doing. Not just scientifically, or academically, or for large public awareness campaigns, but because at the end of the day, those statistics are people, and those people are hurting, and that should matter to you now if it didn’t already.

[A]t the end of the day, those statistics are people, and those people are hurting, and that should matter to you now if it didn’t already. — Ryan Vale McGonigle

There will also be those of you saying, “Exactly, and that’s why I’ve been doing X, Y, and Z for these affected communities.” And to that I’ve got to interject with a firm but loving, “No.” We don’t work for other people, we do work alongside them, as partners who are committed to the resolutions that those communities seek, not short-sighted answers that make your hearts feel better, if only for a minute.

As exhausting as it is to live with and through infertility and loss, whether once or routinely (as both can be), please let me assure you that it’s also exhausting to tell well-meaning individuals who believe they’re working “for us” what we really need … only to be ignored, our needs replaced with someone else’s desires, fears, or preferences.

Meaning well and doing good are very, very different things — and that’s a lesson for working with people impacted by infertility or loss, as well as many other social issues of the day, so please read that again. Meaning well and doing good are very, very different things, my loves.

I don’t know about you, but I’d like to be part of a world where difficult topics like pregnancy loss and infertility are easier to talk about and support others through, so I’m here to help. Not in a limitless, all-access kind of way, but in a “Hey, here’s someone who’s been through this thing you say you want to help with, so please listen for how to do that,” kind of way.

Part of knowing how to best support someone like me is being welcomed into a space where it’s safe to learn and make mistakes though, right? Somewhere you might eventually get it right, but where chances are, you’ll first get it very, very wrong. And where, in partnership, we can make a stronger, more supportive way forward.

Finally, to those asking “Why now?” I offer, “Why not?” It is always the right time to do the right thing. But this month that’s especially true. October is Pregnancy and Infant Loss Awareness Month.

I’d like to be part of a world where difficult topics like pregnancy loss and infertility are easier to talk about and support others through, so I’m here to help. — Ryan Vale McGonigle

With the immense disclaimer that each person or couple in the “waiting” community is best supported in the specific ways that they request, my husband and I have found our brand of peace by encouraging others to follow five concrete recommendations, listed below. We hope these “please don’t’s” and “please do’s” empower other bereaved or hopeful parents to set loving boundaries, and encourage supportive people in their orbit to truly listen to how to best support them:

(1) Please don’t privilege your personal discomfort over our lived experiences. If you are feeling uncomfortable discussing pregnancy, infant, or child loss with someone who has experienced that struggle, please tactfully say so, rather than sitting in unannounced silence or deflecting to another issue or conversation. Doing otherwise can sometimes read as a lack of understanding or concern, even if that is not your intention.

(2) Please don’t offer your hopes, vibes, or prayers for our future pregnancy success. Instead, take your cues from our stated comfort levels, needs, and desires. Responses that affirm the current situation, and feelings that surround it, along with statements of your genuine support, are a great place to start. Un-promised futures don’t need to be introduced into the mix when someone is having difficulty in the present moment. That’s not fair to either of you.

(3) Please do check in with us. Making sure we are “okay” after receiving emotionally complicated news (other pregnancy and birth announcements, for example) is laudable. Most people get that part right. What’s easier to forget is that we are people outside these struggles, and we don’t want to be reduced to our parenthood status any more than others do. So, check in with us in other moments, using your best judgement for social distancing and emotional availability.

(4) Please do educate yourselves on the issues surrounding childless lifestyles. There is a large difference between individuals and couples who have chosen to be childless, and those who have not. At the same time, these communities share an important commonality: we are both able to find happiness, joy, and fulfillment outside of parenthood. Spend time developing or further nuancing your understandings of these lifestyles, lest you unwittingly believe or falsely profess that we are first and foremost victims.

and finally

(5) Please do be patient with yourselves as you grow in your abilities to support us. We understand that occasionally you will make honest mistakes (so do we!). Making them is far better than the alternative, and as long as you’ve tried your best to listen, incorporate information, and grow, lots of us in the “waiting” or childless communities will be able to honor your efforts with grace and love.

That love brings me back to today, to my home with a loving spouse and the dog in charge of us both. Over the past three years, our family has been on a harrowing journey. None of us would’ve chosen it, but even in The Great Without — our purgatorial waiting place of not-quite-parenthood — we’ve managed to make peace with these boundaries and a future that may or may not include biological children.

We consider this a miraculous transformation in its in own right. Perhaps one day we’ll write more about it. But then again, maybe another courageous soul will rise to that occasion or another of their choosing. This story is one that both includes and transcends us, and we are keenly aware of that reality.

As our family continues to move through this very personal struggle, and as our nation and the world face gargantuan struggles of their own, we are here to offer a message of hope, a moment of radical humanity, and some sentience above all the unfeeling noise.

[W]e are here to offer a message of hope, a moment of radical humanity, and some sentience above all the unfeeling noise. — Ryan Vale McGonigle

Are you ready?

You are not alone. Your Great Without, whatever it is — childless or not, coupled or not, employed or not, housed or not, fed or not, adequately represented or not (VOTE!!!), everything you’ve ever wanted or not — is valid. You are cared for. You are seen. You are loved.

How do we know this?

There are at least two humans and a dog somewhere other than where you currently are, who without even knowing you, are rooting for you to succeed, find happiness, retain safety, and know true and lasting peace. That’d be us and we don’t plan on stopping anytime soon, because there’s too much positive upswing at stake.

We hope these “please don’t’s” and “please do’s” empower other bereaved or hopeful parents to set loving boundaries, and encourage supportive people in their orbit to truly listen to how to best support them.

Ryan Vale McGonigle | North by North Carolinian

You see, these moments of unexpected, radical connection are what create the most profound changes in people and societies. We firmly believe that there should be more of them, available to more people, in all times — but especially in times like these.

In our collective hour of need, it is our deepest desire that this knowledge will carry you forward. For us that means stepping forward in love to serve this village, even though we have no child. That’s what reclaiming our story looks like. It looks like hope. Pass it on.

That’s what reclaiming our story looks like. It looks like hope. Pass it on. — Ryan Vale McGonigle

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ADDITIONAL RESOURCES:

Re-posted (and addended) from the end of a previous blog post, Finding My New Thankful:

Is someone you know struggling with pregnancy loss or the passing of a child? Are you struggling with how to best support someone in this position? Here’s a starter kit, but please, please, please, #dothework and do some research on your own. I promise, while many women feel better talking about their losses, not all of them do, and either way, the last thing they want to be is your encyclopedia.

Three Links of Interest:

How to Support Someone Going through Pregnancy Loss (HuffPo)

Dealing with Grief after the Death of Your Baby (March of Dimes)

*NEW* RESOLVE: The National Infertility Association *NEW*

xoxo,

Ryan

North by North Carolinian

Full concept and content by Ryan Vale McGonigle