Tuesday, August 14, 2018

Surviving Failure, Redefining Success

One of the things that frustrated me most about my infertility struggles was the insistence that it WOULD work out, that it COULD work out (insert all the many examples of improbable pregnancies and births here, followed by miracle adoption stories), that if I just HUNG IN THERE that all would be revealed and I'd get to be the mother I was clearly meant to be.

These encouragements are lovely in theory, usually given by practitioners and people who have succeeded ahead of you. They've seen it happen! Don't give up! You just need to stay in the game! But are they lovely, REALLY? Are they as helpful as they seem initially?

I was reminded of this by Risa's post on Moving Forward After Failure, and rather than tell my own story of surviving loss of many kinds in her comments, I decided to write my own post on the topic.

Because my story is filled with failure. After failure. After failure. Exponential failure. Loss after loss. But I survived it, and while my outcome wasn't what I dreamed of initially and by all accounts I failed MISERABLY throughout the whole process of trying to become a parent, I did succeed in other ways. I succeeded by not succumbing to my failure, by learning how not to internalize it, by redefining what "success" means for myself. 

A Series of Unfortunate Events
From the beginning we were told that we should just start with IVF, but that just seemed so DRASTIC, like starting swimming lessons with a cliff dive.  So we eased in with clomid, and then injectible IUIs, and I learned that yeah -- IVF was our best option. My PCOS revealed itself in all its glory -- I was capable of making a LOT of follicles, given a higher dose. Our sperm counts were pretty dismal for IUI, but perfectly reasonable for IVF. So we plunged. 

Given all the encouragement for IVF, given all the stories on TTC chatboards and forums, I fully expected that I would get pregnant from my first cycle and have some frozen embryos left over for a sibling. So it was shocking when I didn't have any frozen embryos, when only a couple survived to day three, and then the two that were transferred weren't amazing. And it failed. I was stunned. Each phone call was another whittling of my hope -- first not a lot of eggs were mature, then not a lot fertilized, then none were going to be frozen, then the ones that were left were okay. And then, of course, the "I'm sorry, it's negative" call that immediately schedules your next cycle. 

That was when I started going to a support group, that was when I started this blog, that was when I realized, hmmm. This is going to be harder than I thought

The next cycle had the whittling too, despite all the yoga and the acupuncture and the visualizing. It didn't work, either. 

So we switched doctors at the clinic, and switched protocols from PCOS-based to an egg quality focus, with much better results -- we had frozens! And I got a call, although not quite the one I'd wanted -- "I'm sorry, it's positive but it's very low." Ah, a caveat. I spent two and a half weeks hoping against hope that this was just a rough-and-tumble beginning to our family story, and then it all ended when the fancy 3D ultrasound machine showed that my baby was more like a tumor that was trying to end me. That was hard to move forward from, because the physical pain was so great in recovery and the craziness of it all just enveloped everything. BUT, I had hope for the next cycle, because my doctor had said that this showed I could actually get pregnant. It was possible. 

Except when we did our next cycle in December, with frozen blasts, it didn't work. I examined everything I could have possibly done to cause this -- had I microwaved things in plastic? Had I microwaved food at all? Was it the nonorganic spinach in the chickpea stew? Was it the gut-wrenching crying during the wait because I'd had to put my cat to sleep? I was in a terrible state of grief. What if that was all I got, just a weird surgical end to a brief pregnancy that could never be a baby? I threw myself into another cycle right away, and upped all the supplements and acupuncture and meditation and yoga and wheatgrass and candle lighting and onesie-buying. 

The next fresh cycle didn't work. But it did make frozens. Which made it easier to take the horrible disappointment of another failure, because a new opportunity could be had faster, cheaper, easier on my body. Maybe THIS would be our chance. 

And it was -- we got a personal call from my doctor (the first one, as the second one had left for another practice) on a Saturday morning to tell me that I was PREGNANT, and the numbers were good (although later I realized they still weren't super robust), and it was CELEBRATION TIME! Celebrate we did, because I was going to milk this pregnancy for every single nanosecond. I was thrilled, for two whole weeks. 

But then I began cramping in the parking lot of my grandmother's assisted living apartment complex, and I ignored it because it was just expansion, it HAD to be, because this was IT, this was the moment we'd been waiting for, and NOTHING bad could happen because I'd done everything so very right this time. Except a trip to the bathroom revealed that I was actually bleeding, and the cramping was harder to ignore, and I had to tell my grandmother that I was both pregnant and likely miscarrying all in one hysterical, apologetic breath as I rushed to the clinic without an appointment, after their phone system was done for the day but before everyone had left, and begged for help. I saw a tiny sac, which gave everyone hope, and I was put on bed rest and kept my hips above my nose as much as I could until I got the call that my bloodwork had gone down 2000 points (so abrupt that we repeated it, because maybe it was an error! Maybe a rushed tech had left a zero off!). It was over. 

I didn't know how to recover from that one. It was the worst pain I'd felt at that point in things. I'd been so close, and now it was gone. What if this wasn't going to happen? What if I was irreparably broken? A friend stopped by to drop off orchid food and heard me keening on the couch. I went back and forth between animal sobbing/gulping and complete numbness, staring at the air between me and other objects and trying to figure out how I would ever get past this. I was a mess, but that was expected. I was shocked that we could get so close and then lose it so quickly. 

But, I dealt with it by pushing myself forward. Something had to change. I was NOT going to give in so easily. The NEXT one would work, particularly because I was going to pursue egg donor. It couldn't go wrong, my mid-thirties eggs would be out of the picture and we'd be sure to see success. I threw myself into all the preparations, and I asked people who'd been successful with egg donor what their protocols were, and I took all the advice and I even did progesterone in oil shots twice per day, resulting in permanent nerve damage and having to take the shots in my thigh, and still... a fresh and a frozen cycle failed. FAILED. I felt like a failure. I felt like there was no way this could be happening. Family and close friends began to ask us, "when do you decide to stop? Maybe it's time." But the fertility world was all about KEEP GOING AND DON'T GIVE UP! YOU'RE SO CLOSE! And I listened to that siren song, I listened to tales of people getting pregnant on their 11th cycle with their last frozen embryo or finally getting pregnant after 8 years of trying because of washing out their uterus with a chemotherapy drug, or sperm donor being the trick, or donated embryos being the trick... there was always a trick. And I WANTED there to be a trick. I NEEDED to throw myself into all possible options. I HAD to have a baby, and was willing to do nearly anything to have one. 

So we reevaluated. We had already gone to an adoption seminar at an agency that made it sound impossible and listed all the things that counted as red flags (and we had a zillion of them), and we felt that we would never be placed with a baby given that doom and gloom presentation, so assisted reproduction was going to have to be our path. Egg donor hadn't done it. So we got a bunch of second opinions, and everyone said that it was likely then the sperm, or maybe even my uterus. Clearly it wasn't my eggs, because egg donor hadn't fixed it. 

We went to the clinic our second doctor left for, and did all kinds of crazy things. I had more hysteroscopies. I had biopsies. I had the horrible Beta 3 Integrin test, that was like having someone run a vegetable peeler down my uterus while I was FULLY AWAKE AND UNSEDATED, and it revealed...nothing. Apparently my endometrium was perfectly receptive. My first cycle ended up cancelled -- my estrogen went way too high and when they tried to dial it back it crashed. But the second cycle was great and we ended up with blasts from our own material -- but it didn't work. Which was very sad and awful, but we had frozens with donor sperm so that was something to look forward to. And then THAT didn't work (or maybe it did briefly, as I did a home pee stick and it showed a faint line that then disappeared -- was it evaporation, or was it a brief chemical? I don't know but the result was the same). 

This is when the failure really hit me hard. Clearly SOMETHING was wrong, and we couldn't figure it out, and I was tired, so so so tired of making this the central thing in my life. I had experienced ten transfers, 27 embryos had come and gone, and I just felt like a physical embodiment of failure. I tried so many things, and here I was, at the end of the options, with no one giving me a straight answer about WHY, and my heart just wasn't in it anymore. I couldn't bear to keep doing this. I knew the end was nigh. 

So we decided to transfer our frozens, 2PNs from the egg donor cycle first, then the two blasts from sperm donor. Then we could be done. And then my cycles were canceled, TWICE, and I lay crying on the table, after white-knuckling a drive through a freaking blizzard to get to Buffalo for an ultrasound, and I just kept saying "I...can't...DO THIS...ANYMOOOOOOORE" through my sobs. I felt abused. I felt brutally emptied from the inside out, physically and spiritually. I just couldn't give it any more. 

Moving Forward, Away from Infertility Treatment
So we moved forward to adoption, with so much hope in our hearts that it would be different. We joked that we'd slowly shed ties to genetic material throughout our journey, so we were utterly prepared to decide to raise a child who had zero genetic ties to us, and who we did not gestate. We researched. We completed all the homestudy requirements. We soul searched. We gave ourselves fully to this process, which took my body completely out of the equation and instead took up space in a binder, in a somewhat unhealthy relationship with the phone, and in our emotional well-being. 

I had talked to other people who were successful before us, and they received profile calls within a couple months, and then received them regularly. 

We received none in six months. None? How could we receive none? We'd made a book that we were insanely proud of. We'd been told it was great. How could NO ONE find us appealing? It was a terrible feeling. Instead of examining what I'd eaten, what I'd done to nurture my body, what physical activity might have been too strenuous, I examined OUR LIFE. Did we not have enough friends with young children? I felt funny about asking people for photos of me with their kids, like I was using them as marketing material (I was), and so I didn't pursue that as much as I could have. Were we too old? We didn't look old, but we were in our 40s, having spent the bulk of our 30s trying to get pregnant and failing. Had we waited too long? Were we too boring? Not religious enough at all? Was our house not child-friendly enough? Were our families too devoid of small children, of future cousins to play with? What WAS it that made us get passed over? 

Then we had our first profile call, and it was exciting to be in a position to actually, possibly, be matched and off on our way to a placement. She was due in May, and they wanted the couple chosen to attend appointments, and the situation sounded pretty good -- it wasn't financially driven, which was something that made us feel very, very icky. They were getting their lives together after personal hardship and it wasn't the right time, but they wanted an open adoption, and it sounded like a great situation. But we weren't picked. Which was okay, because now I felt like we'd had an opportunity, of course the first one wouldn't work out, we were realistic, and this was SO MUCH BETTER than infertility treatment! 

But then the next profile opportunity threw me for an utter loop. It was a somewhat last-minute situation, she was due in just a couple weeks, and it had been a blind profile where she was deciding between just a couple books, and ours was one of them. It was a boy, they said. I spent a lot of time in the nursery, holding the blue onesies in my hands, staring down into the empty crib (that sometimes held a cat) and imagining this little boy asleep in that space. I could almost see the indent in the mattress. I visualized it, I meditated on it, and I was like, THIS IS IT. We are going to be parents.

She didn't choose us. It was close, which actually hurt more to hear, but we didn't make the cut. I was gutted. We cried as if we had lost a baby ourselves, which it felt as though we had -- we could envision how our lives would change in such a short time, and we were ready to bring that baby into our home and could SEE that alternate future, and then POOF, it was gone. It echoed every loss we'd sustained up to that point, but in a way it was harder because I DIDN'T do anything that resulted in my two pregnancy losses, it was totally inexplicable and a mystery of nature, but this was someone actively NOT choosing us to parent her child. (In the end it turned out that the situation became fraught and involved the courts and was very sad for everyone involved, so we were glad it didn't work out in retrospect, but still.)

I think that was the first time when we realized that perhaps all of the grief and loss of the infertility treatment leg of our journey was going to make this leg even harder, and maybe it wouldn't work out as we'd hoped.

That profile opportunity was followed by one that was so not right for us on so many levels, again highlighting the complexity of just the DECISIONS related to the adoption process, and we said no, which was hard but necessary. Then summer came and we had to renew our homestudy, and it felt not nearly as hopeful as the first time when we were so filled with hope that THIS WAS OUR PATHWAY to parenthood and it would all be great. Our social worker asked us what we would do if it didn't work out for us, and instead of answering in a way that was purely positive but not at all believing that that could happen, we had a realistic answer and realized that we had a GOOD answer, that our life really was good as is and maybe if it didn't work out it would be okay. More than okay.

Then the second year of being active for adoption was just awful. We were actually picked in a blind profile but the opportunity vanished as quickly as it had become a possibility, and we were notified a month or so later so it wasn't quite the disembowelment it could have been. But then... SILENCE. Nothing again, not a single call or opportunity until January.

I'm not sure which was worse, the complete silence and feeling that we were either a) not on the radar or b) so undesirable that we just would never get picked. It does a number on your self-worth to be in this space. We looked into private adoption, and quickly nixed it as it seemed even more emotionally draining, possibly opening us up to scammers or horrible people who would call just to tell us we were baby stealers, and it just seemed...predatory. I was not comfortable with it at all. But then, January came with a situation where the baby was born yesterday and we were one of a handful of books in play where we'd need to go pick the baby up tomorrow if chosen, and it seemed SO PROMISING. But the quick turnoround between "tomorrow we could be parents!" and "you weren't chosen" broke me. I had to go home from school to sob in private, because I just could not hold myself together anymore at my job. And then February saw a blind profile where the expectant mom was in labor, and we were again not chosen, and I wouldn't have even known about it had I not called with a question about adoption attorneys, and I felt like my soul had just been chipped away to the point of being a broken splinter of a thing.

And then I had my autoimmune eye issue, the prednisone megadose, the side effects mimicking a heart attack, and my breakdown at school.

The End
That is when we ended our parenting journey, that string of failures and disappointments and losses that had finally passed the tipping point of Shit We Could Handle. We ended before our homestudy end date, because we just couldn't handle another call that would NOT be for us, and I was not in a place where I felt my mental health was robust enough to say yes to an opportunity if it came in those last two months, because even a yes is fraught with complexity, and ethical quagmires, and uncertainty, and stress, and the possibility of loss. We just couldn't do it anymore. We'd been so steeped in "It's not IF, it's WHEN!" and all the adoption-related encouragements of "The Waiting is the Hardest Part!" and "Just hang in there, you can't get chosen if you're not in the game!"

But the game was not-so-slowly killing us, me in ways that were clearly manifested and noticeable, and Bryce in ways that he felt he had to hide for my sake, and we were risking the life we KNEW we could have, the life we DID have, for one that may well never have truly materialized.

We were spent, and it was time to wave the white flag and say, "You know, we had a good run."

Recovering from Failure, Rediscovering Hope
It was hard, so hard to feel like I'd given up. Like I'd quit, like I wasn't strong enough, like I didn't have enough chutzpah to be worthy of the motherhood I'd so wanted.

But those are lies.

I was STRONG, because I was walking away from something that I'd wanted so badly, but that had turned downright abusive and was just slamming me into the ground and kicking me in the head.

I was CHOOSING a different life, instead of letting things happen passively. Bryce made this point when the choice was to let our homestudy run out, or end it two months early. He argued that ending it early was empowering, was saying WE ARE DONE WITH LETTING THE UNIVERSE BEAT US UP ON ITS OWN TIME, WE ARE GOING TO TAKE CONTROL AND SAY NO MORE TO THIS BULLSHIT! Bryce is very wise. It WAS empowering.

I was REDEFINING my life -- motherhood had taken up such a large space and had proven unattainable, and I had to figure out who I was if I wasn't going to be a mother. And I was NOT going to be a sad sap. I was going to live the bejeezus out of the life we had, as is, without all the striving and pushing and wheedling something to come that after 8 years just wasn't going to.

I was LETTING GO of the idea that if we'd just hung on, we'd have our child. That IF we'd stayed in the game, we would have "won" and had the living, breathing baby in our nursery, had the floor strewn with board books and play mats, had the holiday card we'd been hoping for, had the tearful shots of us with the baby, holding him or her for the first time, incredulous at our amazing fortune. WHAT IF is destructive. You can go down a whole slew of rabbit holes searching for the alternate pathways that MIGHT have happened IF you made a different choice, IF you waited longer, IF you went with a different agency or type of adoption, IF you'd gone to a different clinic sooner, IF you'd gotten second opinions sooner, IF you'd met your husband earlier in life, IF you'd known that you were infertile when you were younger... NONE OF THAT is helpful. None. For the same reason that hanging on to IVF well past when it was useful because someone got pregnant with their last embryo on their 13th cycle or whatnot was not healthy, so was staying in adoption when it was absolutely clear that we had gone into it already battered, that we were pushing ourselves down a path that at times made us uncomfortable, and that we were simply spent.

I was ACCEPTING that it is okay to say NO. To quit, to give up, to accept the failure we experienced in becoming parents, so that we could thrive, move forward, and start a new life that is decidedly less self-destructive. This acceptance is hard. This acceptance takes work. It means cutting up your "Never Never Never Give Up" fridge magnet into the fangs it is, because that trope is HARMFUL. It is excellent to have perseverance. It is excellent to go for your dreams. It is not excellent to let your dream be a freight train that you are chained to so that you are dragged behind it, a bloody pulpy mess. There is a time when letting go is the best thing. And you have to do it in the face of people who will mourn your inability to stay in the game, who will judge you for "giving up," who will throw a million other methods you might try (but have zero endurance left for) because it is just TOO SAD that you will never be parents.

I was ADVOCATING for the fact that only YOU can make the choice that is right for you, and frankly, no one else's opinions matter. That may sound harsh, but it is incredibly difficult to face the onslaught of people who cannot accept that you are not going to parent, who cannot accept this new reality as something POSITIVE and EMPOWERING. People wanted me to know that I was still young, that I could get pregnant accidentally, they knew people that happened to. I feel a compulsion to retort that I actually don't have a uterine lining anymore, but also only had one tube and our sperm count was super low, so that was likely never going to happen, and besides -- we'd let that possibility go. At this point, we do not WANT some "miracle baby" to arrive because we are resolved, we are happy, we have done so much work to love where we are. I want people to know that resolving childfree is not a tragedy. The path to get there can be, but when you are resolved, in my opinion at least, you have reached a point where you accept where you are and vow to live it to your best ability. As is. And it is difficult when others don't understand this because they can't imagine life without their children, and so see your life as less-than. My life is not less worthy because I don't parent. My life is not worse or better because I don't have kids, it's just different. For the things I lose out on, I gain in other opportunities I wouldn't have if I did have kids.

I'm not saying that I consider myself "recovered." I'm not. I think it's an ongoing process, one that will last in some way for all of my days. I am in a much better place now than a year ago, when I was grappling with the fact that my vision of my future life had forever changed. It's a balance between the sadness of what was lost, and the joys of what is gained by no longer living in limbo, by finding a new purpose in the days ahead. We truly appreciate the moments we have together, after surviving so much grief and loss and turmoil. It can be a fancy dinner out on a Thursday, or a quiet night in reading on our new living room chairs in the quiet with cats on our laps and classical music playing in the background. It can be a two week vacation to the coast of California, or a day with an impromptu 11 mile hike. We have been through so much, and surviving it all with a marriage stronger than we started with is an accomplishment we're proud of.

Failure is difficult but it teaches you of what you're capable of, and makes you reevaluate your priorities. I feel that a true failure would have been continuing to chase down motherhood at personal risk to my health, relationship, overall well-being, sense of self... that would have been awful. I will never understand why NONE of the avenues we tried worked for us. I will never understand HOW we got here, but I am so grateful to be here, on the other side of infertility. I am glad to be done with the struggle, to know that it can work out even if it's not how I'd hoped, that I can live a fulfilling life despite all the difficulties we faced and possibly BECAUSE of surviving all that loss. I am different person now than I was in 2009 when this all started.

I survived failure, I redefined what success meant for me, and it took work and reflection and a lot of support, but IT IS POSSIBLE. It is a work in progress. I am proud of what I've accomplished. I'm proud of letting go in a society that values hanging on at personal cost.

I hope that telling this story gives hope to those who are in the thick of it, who are struggling with choices and losses and a sense of overwhelming failure and batterment. It is not permanent. There are many ways to resolve. You can survive failure and consider yourself a resounding success even if you do not end up with a child. Sometimes letting go and moving forward with life as it is is the best possible option for your sanity, your health, your overall quality of life.


13 comments:

  1. The message that you can still have a life, a meaningful great life even if you don't get what you want, is so important.

    Does it feel different to put your story all in one place, here, than it does to have it in episodes all over the blog? Just wondering.

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    1. Thank you. Yes, it felt both like lifting a weight and simultaneously very overwhelming to put most of it in here. I didn't even talk about the embryo adoption piece that didn't work out, either! But, sometimes when you see it all at once it reminds you of all you've survived, of all you've trudged to to get to the other side.

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  2. I have the same goose bumps from reading this that I had when I read Mali’s “Infertility’s Waiting Room.” This is an incredibly important post that I’m bookmarking for the future. Thank you Jess. All of what you wrote here will help so many.

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    1. Wow, I am super honored, Cristy. I really do hope that it will be helpful for those who feel that they've failed, that they DIDN'T make it to the other side because they didn't end a parent. Thank you so, so much.

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  3. My favourite sentence in this wonderful post is this one: "I feel that a true failure would have been continuing to chase down motherhood at personal risk to my health, relationship, overall well-being, sense of self."

    Exactly. I love that. And the "never give up" brigade never really understand that, because they haven't reached that point.

    I've often said that we are the true success stories of infertility. And your post just confirms that for me. Brava!

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    1. Thank you SO much, Mali -- I am so flattered! It does feel sometimes like success can mean not being on the floor, facedown. :) But your point is so, so true -- if you've never reached that point, you can't understand what it's like to realize that your dream has a cost that's simply too high. It's so lonely, and hurts so much when people assume there are other roads you can take, and can't see the power in stepping away and creating a new life.

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  4. Talk about taking back your life. You are a shining example of this.

    I had known about all your pieces, but this is the first time I've seen it all in one narrative. I'll say this, and you'll say you don't always feel like it's true, but YOU ARE SO STRONG. The kind of strength that really matters, when you endure until you decide to get out of the ring. THAT takes both discernment and strength.

    There are many ways to successfully get off the Family-Building Island, as you so clearly show with your long, torturous, and eventually triumphant journey.

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    1. Thank you so much, Lori! I so appreciate your thoughts. Getting out of the ring is incredibly hard when there seem to be so many success stories of other kinds everywhere and YOU know that there are others who succeeded and didn't parent, but those stories aren't the mainstream vision of the infertility journey. I really hope that one day this decision is seen as just as successful and triumphant as any other, outside of the ALI community, too.

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  5. This is an epic account of all you have been through. I am so grateful that you have made it through all of the pain, the suffering, the disappointment. You deserve happiness! I rejoice that you are claiming it now.

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    1. Thank you -- it's been a long, hard road (and is exhausting to put down most of everything that happened...didn't even include the embryo adoption piece that didn't work out, either, sigh), but I truly feel that I can say I'm on the other side. Even when setbacks occur that remind me of how much I've lost, to be at a point where I truly don't want another life other than the one we've got is a miracle.

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  6. I love the concept of redefining the meaning of success. You've been through so much that to me, the fact that you're still standing is an unbelievable success, but I understand there's a much deeper meaning. Moving forward, choosing sanity, those are such important concepts and they're so hard to hold on to in the moment. Thank you for the beautiful reminder.

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    1. Thank you so much -- it is exhausting to write about the things that brought us to this point, and to remind myself that that all happened to me, to us. I love that, moving forward, choosing sanity. Thank you so much for your thoughts!

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  7. I'm sure this post took a lot out of you to write, but sometimes it's good/cathartic to lay it all out like this. When you take a good long look at everything you've endured, you realize "yeah, this IS a big deal, I went through a lot of CRAP and my feelings about it are entirely valid!" I'm glad you said at the end that you are proud of what you've accomplished. You should be! :)

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