Aug 12, 2012

what we (think) we are owed

A few weeks back, Y and I went to our first infertility support group meeting. I am not sure that it was super helpful to us because most of the couples were at a different stage of their infertility journey, but the facilitator was great. One comment she made in particular stuck with me.

She said that when we first set out trying to conceive, we think that we are going to get the gold -- the gold being everything we want and on the time scale we want it. And then maybe it turns out it is taking longer than we thought and we need a little pharmaceutical help -- we are now going for the silver. Maybe then it turns out our problems are in fact pretty big so after the silver doesn't pan out, we're going for IVF  -- now we're aiming for the bronze.

Maybe after that we are in a position where we are getting comfortable with the idea of donor egg or a gestational carrier or we are pursuing adoption, and so we give up a little more of the original dream. I don't think the point was that any of the outcomes that aren't the first one -- everything we want and on the time scale we want it -- is somehow ultimately less good, but more that in order to get it, we may be finding ourselves sacrificing more and more of our original vision and all the while time is passing.

The truth is, I don't remember the original context of her remark, but it crystalized for me something really important. When we found out we were expecting twins and then later on, when we found out we were expecting a boy and a girl, I felt like everything that had been taken away from me in this journey was suddenly and unexpectedly gifted back, just like that.

In other words, we were going to get the gold. It wasn't without lots of sweat, tears, perseverance, sacrifice, and hard work, but we would get our happy ending -- what we were owed. The world was suddenly a fair place again, just as I had always known it to be until infertility and loss entered our lives.

We would have the two children we would have had if we had control over our reproductive fate and in the same time frame! A son and a daughter! It seemed too good to be true, but we did work really hard to get there, so why not? Why couldn't we have it all, get the gold, after our shit luck until then? It happens to others in the infertility community all the time, really -- from zero to two -- just like that.

Everything that happened to us until then infertility-wise sucked but it was tolerable and livable. It was something I was willing to put up with and rationalize, if we could then just get our happy ending. For lack of a better term, it was all within the realm of normal infertility suckiness. Par for the course.

And while it might have seemed sudden and unexpected when it finally worked and we conceived two beautiful babies, I felt like we deserved it because we are fundamentally good people who had worked very hard to get there. (But the unanswerable question that many of us avoid altogether in the moments of dazed self-congratulations then becomes what about everyone else on a similar road who has not been granted the same good fortune?)

Owed, deserved -- what dangerous words and concepts these are. I think you can probably already see where I am going with this.

I wasn't naive about the risks of a twin pregnancy -- if I look back at my posts during that period of time I don't think I was every really happy-go-lucky or flippant about the pregnancy. But deep down, even when the pregnancy became complicated, I fundamentally believed we would get our take-home babies -- that this would be very hard and scary, sure, but that we would also all make it out of this alive.

Even if you are particularly anxious and fearful, I don't think you ever really believe that you will be the horror story. In fact, isn't imagining the worst over and over again supposed to be some sort of protection mechanism? I am pretty sure that I subconsciously thought so.

So, obviously, in the end, we did not get the gold -- we came really close but we didn't get gold. Or silver. Or bronze. Actually, we didn't even place, we just pretty much careened off the course entirely.

What I want to get back to is this idea of what we are owed and what we deserve. It is something I struggle with in the present constantly -- this notion that we do all of this stuff and go through all of these trials and therefore it has to lead somewhere. It all has to be for something -- to ultimately fulfill some purpose.

But sometimes it's not.

Many times I see that women who have achieved their happy ending attempt to rationalize what it took to get there and find some meaning in it. For many of us, the journey can never just be an endless trek of failure, pain, and suffering -- it has to mean something and it has to have all been for something. The alternative is just too depressing and soul-crushing. It is not too difficult to rationalize the journey if you do get the happy ending, as I would have if Aminadav and Naava had come home with us.

But what about when that doesn't happen?

I know now I will never get the gold. I missed it entirely. What I mean by that is even if I do eventually get my living child(ten) in one way or another, I have lost too much that is irreplaceable for it to ever 'make up' for what I have experienced and what I have lost -- there will forever be my son and daughter missing from our lives, and that is not something fixable.

Until I lost them, the loss and sacrifice that I had experienced along this road deeply affected me, but there was nothing I had given up or lost that was unredeemable or unforgivable with the good fortune of the twins. It's not that I would forget the journey, but I was willing to bargain this for that and this (6 IUIs, 4 IVF transfers, a miscarriage) certainly seemed 'worth it' for what I could get in return (a son and a daughter).

How do I shake this idea of being owed a living child for what I have endured? It is so naive -- and yet a testament to how good and straightforward my life was until infertility -- this belief everything I work hard at will be handed to me. Life doesn't really work like that, I know, but part of me can't shake the idea.

When I had the very early miscarriage that resulted from the IVF cycle we did after losing the twins part of me was like "C'mon -- what did you expect, A? Of course it didn't work out. It never works out for you. Don't you get it by now?" but part of me was suspended in disbelief "How could it not work out -- after all of this don't you just deserve for things to work out?"

Part of me just can't shake the belief in the Very American Happy Ending. Hard work = a great reward. I try to shake it but there is a girl underneath who still believes in it. And yet it is ultimately so damaging to subscribe to that idea when life keeps throwing lemons at you -- if life hands us what we deserve, what does that say about Y and myself?

I still try to bargain all of the time. It is disastrous. I think to myself -- if we couldn't keep Aminadav and Naava, then the second best thing would be to have twins again. A second chance. We deserve to have twins. Twins are so special, I think.

But I know this is totally unrealistic, especially because we plan to only do SET in the future (as we did with our last IVF) since another twin pregnancy is too dangerous for us. Even if we did transfer more than one embryo, realistically our chances of both sticking around are quite low given our IVF track record.

I keep reminding myself that the goal is to have one healthy, living child who I can carry to term. Let's not get ahead of ourselves and get greedy, here, I tell myself. So I guess along side mourning the loss of my particular, beautiful twins,  I also mourn the loss of ever having twins again, which often felt like something special to make up for the lousy hand we had been dealt until then.

I have lost too much to ever think I can have it all again -- the gold has clearly evaded me -- but still there is that stupid quiet voice who says don't you deserve a happy ending? This can't all be for nothing, right? Aren't you owed a living child? Or two.

How about you? Do you struggle with this idea of being owed something or deserving it? Did you feel the gold or silver or even the bronze was taken from you only to unexpectedly get it all back (or not)? If you've had your happy ending, do you rationalize what it took to get there?


18 comments:

  1. I definitely struggle with the idea of being owed something. I have always been the type of person who sees what I and go for and get it. Who knew having a baby wasn't that easy for everyone? I look at the people who get pregnant so easily and wonder what they did to deserve the life I always wanted and what I did to not deserve it.

    I keep hoping I'll be like that woman in the Olympics who had to go to 3 of them to get her own individual medal. I hope it won't take 12 years to do so, but maybe it will still happen. And maybe it will be an even happier occasion because I had to wait and work so hard.

    I hope you get your happy ending. And I hope it feels like a gold.

    readingeachpage.blogspot.com

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  2. Well said. I've had similar thoughts as of late. Like you stated, it's very easy to look back on everything you've been through if you get the happy ending. But for those of us who have tried and lost, it's difficult to see how any of this makes the end worthwhile. Just like you, I don't know if I'll ever be able to look back on this time as a period where everything happened as it should. The wounds are too deep and the scars are ugly.

    I wish I knew the answer to why the universe punishes people who would be amazing parents in such acute ways. And I wish I could promise that all of it had meaning. What I can tell you is that you are not alone in any of this and that one day you will hold your child(ren). I wish I could tell you what that road would look like, but I do believe it will happen for both of us.

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  3. Beautifully written and thought provoking post. I know that, despite the circumstances being different, I felt that my twins were so special. And, in a way, I did view them as a deserved reward. Seems ridiculous and I'm somewhat embarrassed to even admit to that now. But still, I certainly did feel that they were a blessing and, almost, a vindication of some of the choices that I'd made in my life?

    And I do look back at myself and wonder how on earth I squared the circle, that some people try and try and deserve and yet, are left with nothing. But I suppose I was too caught up in my own supposed special-ness to worry overly much about the flaws in my own logic. That awarded twins to myself and nothing to so many others. Awful to look back on that stupid person, the person that was me.

    I can understand, as far as I can (possibly not very far at all!), that you felt that Aminadav and Navava were your reward, your gold. When you had been through so much and you deserved them and they deserved you and Y. That everything you had given up and all you had been through, would be gifted back with them. There is something so special about twins, particularly boy/girl twins.

    Although I have not been through IVF, I lost a pregnancy after the extremely premature birth of my twins and the loss of one. And I had that same cycle of 'well, what did you expect? This is you after all" and "No! This is not supposed to happen, it's not fair and I deserved this to be nice and straightforward after what I had been through last time." But I guess neither of those factors come into it, I can't take any credit for the good luck that I've had and I don't have to take any blame for the bad. I'm just standing in the middle, as life rages around me, doing what it will. With my head down and hoping to avoid any further lightning bolts.

    I certainly mourn the loss of twins, as well as the loss of one of my own, particular twins. And yes, I still do dream of falling pregnant with twins again. As if that could somehow correct the balance in my favour once more, could give me faith in my own deservingness and specialness once more. I feel as though I had the gold awarded to me, totally unexpectedly and out of the blue. Then, just as I was getting used to the weight of it around my neck, an official came up and said, "actually, no. You are more of a bronze kind of person." And I scuttled off, clutching my bronze and grateful for it but still with a wistful, wistful eye of the gold that was mine, albeit briefly.

    And I wish that deserving came into it, that it was an element in this equation. That hard work and desire and love and putting yourself through this relentless grind would guarantee you the gold. Because, if the world did accounts in the way that it should, your dear twins would be here, in your arms, in Y's arms.

    I'm deeply sorry that they are not. I hope that you will get the healthy, living children that you should and that will feel as close to a gold as it is possible to without their big brother and sister here with them.

    Oops - apologies for the long comment. I got a bit carried away x

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  4. I struggle with this all the time. It's incredibly frustrating and disenheartening to realize that no matter what you do, and no matter how much כוונה you put into your davening, it doesn't seem to help. And you feel like after so much pain it might finally be your turn for happiness, but then -- poof!

    My story has some similarities. We knew from the outset that we'd need donor eggs and we soon learned I couldn't carry a pregnancy because of the risk of aortic dissection, so we chose to pursue surrogacy using donor eggs. Our first transfer was a fresh transfer. our surrogate became pregnant with twins, but lost Baby B at 9 wks and then developed PROM between 16 and 17wks, requiring a termination at 17wks2days. We found a new surrogate and did a 2-embryo FET in March, which took, sort of...as Pesach ended we found out the baby had no heartbeat. (We found this out while out to dinner with our good friends who were seven months along...in the midst of the two days we wanted to spend taking a second honeymoon and not in the krayot...We were also out of embryos at that time so we had to identify a new donor...finally things seem to be coming together for a third IVF cycle, which (בעזרת ה) will be around Rosh Hashanah.

    By the way - how difficult is the language in כחלום יעוף? I can get by well in daily conversation and can watch most television, but literature sometimes is a stretch.

    Anyway, maybe Toronto will be a lucky spot for you (משנה מקום משנה מזל). Nor matter what, I will be thinking of you!

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  5. Oh yes, I am with you on all of that. The worst is that it makes you wonder why everyone else deserves it and not you, especially when you see people who are in your eyes not as deserving as parents. Makes you feel especially crappy. But that more than anything else shows you that it really isn't about deserving or not. I don't know what it is, but it isn't deserving it.

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  6. I've been dealing with a major case of "why me" syndrome lately as I watch person after person easily conceive and effortlessly bring children into this world. And like you, the word "deserve" comes into play. I have to battle infertility, why did I deserve to lose my daughter too? Or why didn't I deserve smooth sailing after our IVF when so many others have it so easy. I also really struggle with trying to find meaning in all of this. But nothing I can come up with merits the loss of my little girl.

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  7. I had this exact kind of thoughts so often before being blessed with Emma. Thoughts about deserving, about fairness. And every time they made me deeply unhappy, and edgy, and anxious. It was such a reliable way to make myself edgy, unhappy and anxious, that I eventually realized that I should try really hard to think about something else, anything to distract myself from these unbearable thoughts.

    Now that I have Emma, it does not make me forget the loss of little Adrian. I too have lost too much to forget. A baby's limp body is not something any of us forget. But I have learned throughout this journey that if something hurts too much to process, it is ok to think of something else.

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  8. Wow, amazing post. I can't tell you how much I relate!! I couldn't say it any better. I do believe it has to be all for something. The other thought frightens me, but it does enter my mind that it could be all for nothing. **hugs to you** <3

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  9. What a beautiful, insightful post. Shmerson and I joked sometimes that we deserve the "lose three, get a second baby free" deal. But that was before losing Nadav. Now, I still think I "deserve" a healthy, full term baby. But somewhere deep inside I know that it makes no difference.

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  10. I clicked through from lisab's blog, as she recommended reading this.
    I'm glad I did. A very well written, insightful post.

    "A? Of course it didn't work out. It never works out for you. Don't you get it by now?" - This is exactly my thought process.

    For me, its difficult to rationalise why it comes so easily to others. If my cousin who is heaving addicted to ice can get a 16 year old pregnant with triplets, then surely I deserve to get pregnant?

    A few weeks ago, a 6 week old baby was left on the side of the road, in the middle of the night, in the middle of winter (I live in Australia). He was discovered at 3:15am by police. His parents were found at a nearby train station. They had had an argument. That was their reasoning for leaving a 6 week old baby to freeze to death.
    Surely 2.5 years of pain and suffering is worth a baby? When those parents get it for free?
    If only the system worked that way. I wish I knew what god was thinking when he gave them a baby instead of me.

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  11. I completely sympathize with this post. I went through so many of these feelings when we decided to stop trying -- we did 4 IVF's and one FET that all failed, and we decided to stop -- thereby guaranteeing that all of our suffering and struggle and stress and depression was all for nothing. There would be no gold for us.

    It is a hard place to be -- to be the horror story, the one who doesn't succeed. Going into that last IVF, I still felt like it could all be worth it, and I thought about how great it would feel to succeed -- to have not given up -- to have made a baby happen by our sheer will and effort, despite all the struggle. We did deserve it. But we didn't get it.

    I am so sorry for the loss of your twins, and to that I can't relate, since we never got that far. My heart goes out to you, from yet another IF'er who did not medal.

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  12. Came across this through a friend's post. I agree... I went through this after several losses and it was so confusing. In the end we moved on to adoption, and got a different sort of medal and then I realized it was never really about the medals. Medals are earned for endurance in the short term. Having a child in your life brings joy lifelong.

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  13. I also found you from lisab's blog and can really relate to this post. I'm so sorry for the loss of your sweet babies. My husband and I dealt with infertility related to PCOS and two miscarriages. I was so frustrated because up to that point anything that I had worked hard enough for, I had been able to achieve, except for getting and staying pregnant. Unexpectedly, my husband and I received the news that we were pregnant with triplets after our latest round of IF treatments. What an amazing thing...an instant family after everything we had been through!

    I was very guarded at the beginning of my pregnancy and kept expecting to hear that there weren't any heartbeats at each ultrasound (as we had been told with our first two pregnancies). Then, at 18 weeks, my MFM told me that things looked perfect and we needed to start stocking up on diapers. I finally let my guard down and got excited about things. Being an OB nurse, I knew that there was still a long road ahead, but after making it this far with things looking so good, what were the chances of things going horribly wrong?

    Just over a week later, my worst nightmare began to unfold. I noticed spotting and immediately called my MFM. I was told to head to L&D to get things checked out. The doc on call told me that things looked fine and even if I did start to lose the pregnancy they wouldn't do anything to help. This wasn't at all what my MFM had discussed so I left and called again the next morning when their office was opened. I was told to come back up as soon as possible for an ultrasound of my cervix. Unfortunately, when I got there my cervix was shortened to just 0.9cm. I was admitted to L&D for medications to stop contractions in the hopes that we could place a rescue cerclage the following day. The contractions stopped, but the stitch couldn't be placed due to a small amount of bleeding in the OR (that we now know was from my cervix changing more). Hours later, my water broke and my son was born at 19w4d. He lived for just 20 minutes.

    I was told that they could try a delayed interval delivery to buy the other two babies the weeks we needed to make it to viability, but I started to hemorrhage, briefly lost consciousness, and had to be induced after waking up in the OR. We were devastated. We chose to have our babies buried back home and the hour and a half drive with them in a box on my lap was the worst ride of my life.

    I was told that incompetent cervix was the reason that I lost the triplets and that a multiple pregnancy needed to be avoided in the future as my doctor wasn't entirely sure about how my body would handle one baby now, let alone two or more. When we started trying again, we had another early loss, followed by an unsuccessful cycle. I was convinced that it was all going to be for nothing. Why keep trying? I knew what the outcome would be.

    We tried one last time before taking a break to reconsider the path we were on. Thankfully, we were blessed with our rainbow baby at last. I also secretly wished for twins or more after finding out I was pregnant again, even though I knew it could be a repeat of the disaster from earlier that year. As you said though, my son doesn't make up for the son and two daughters that we lost. I will miss them for the rest of my life.

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  14. I'm trying to think if there's a difference between feeling owed and feeling like you deserve something. Maybe I'm being too nitpicky. After A was stillborn and I was pregnant again I'm not sure I felt that I was owed a living baby, but I definitely felt like I deserved one. Like I'd suffered enough and should just be allowed to go quietly along and have my baby. I'm pretty sure that any residual feeling of being deserving is gone, now. If we decide to try again, I don't think I will be able to do anything but assume it will end badly. I really hope you get your happy (or happier) ending - you *do* deserve it. That's the hardest part.

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  15. I can relate to this post. I thought after dealing with years of infertility I deserved our twins, losing them was just devastating. Since then we've had two more losses, now we decided to no longer continue treatment with the RE. I kinda feel lost lately and the amazing people I've met in the journey really make me question why some crappy parents get kids and people who'd be amazing parents have to struggle so much and may never have a baby.

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  16. My God, you sound just like me. :(

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  17. I lost my son Aidan in 2010 at 23 weeks and 3 days to a malformed placenta and pPROM. When my water broke during my second pregnancy at 17 weeks and we discovered that the same extremely rare placental abnormality had developed again, I was beyond devastated. I couldn't believe such a horrible thing could happen to us TWICE, and yet, what did I expect? Why should any pregnancy end happily for us? I had (almost) no hope that things could be okay. I began looking into funeral homes again and preparing for my daughter's death. I was so ANGRY. How come other people can just pop out kids like it's no big deal? How come we kept getting the short end of the stick? I felt like such a freak and a failure.

    And then (long story short), my daughter lived. I spent 15 weeks on bed rest and she was born at 32 weeks and did very well. She's 15 months old now and I thank my lucky stars every day I held on...but I don't look for reasons. I am not special. I did nothing to 'deserve' her...but then I did nothing to deserve the loss of my first child, either. It is what it is. Sometimes terrible things happen and sometimes they happen to you. But, on the flip side, wonderful things can happen as well, and hopefully one of those wonderful things will be a healthy living baby in your arms some day.

    Wishing you all the best. By the way, where in Canada are you now? I'm in Toronto, Ontario.

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  18. I was listening to a song over the weekend that includes the lyrics "none of us deserving the cruelty or the grace" and it made me think differently about the way I have struggled with what reconciling what I thought we had coming to us because we'd done everything right and what we ended up with... It's a bit of a relief to consider that we don't deserve ANY of it--the good or the bad. We just take what's coming our way and make of it what we will.

    I'm new to your blog and so sorry to read about the loss of your twins.

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