Archive for Moving on

How I learned to stop grieving and love DE

In a previous post, I talked about how I came to see donor egg (DE) as a good way for us to build our family.  But deciding for DE is not necessarily the same as being happy about DE.  Indeed, one of the things I didn’t like about DE is that it feels like such a “second-choice” option.  After all, you hear about people who want to adopt without TTCing themselves, but have you heard of anybody saying “Gee, you know what?  I don’t think I’ll bother with my own (fertile, healthy) eggs, DE sounds so much better!”  I didn’t want my children to feel like they were somehow second choice.   But the more I became comfortable with DE, the more it became a great choice, a wonderful choice, for us.

This wasn’t instant, of course.  When we went into cycle #5, I knew that if the cycle didn’t work out, we would go to DE, and I was comfortable with that decision.  But that doesn’t mean that after cycle #5 ended ignominiously with yet another chemical pregnancy, I wasn’t sad about the state of affairs.  I was happy not to stim again, but I was sad about giving up the genetic connection to my children, and there were different dimensions to that grief.

For one thing, I was sad about not being able to pass on my genes… until I started thinking about the fact that I come from a hugely prolific family (my parents each have nearly a dozen siblings), and that my genes already are all over the place, just not in exactly the same order, and that sadness quickly faded.

I was also sad for my kids, that whether they would come to me by adoption or via donor gametes, I would not be able to give them that sense of biological rootedness that most kids take for granted.   I felt like I was passing on the pain of infertility to my kids, making it part of their very identity. The sting of that was reduced a bit when Mr. Nishkanu pointed out studies that showed that donor kids generally feel happier and a greater sense of belonging than adopted kids.  I also knew there was a lot we could do to give our kids a sense of their own special identity.   Still, that sting hasn’t completely gone away, and maybe it won’t ever.

A huge loss for me was the idea of not having children that resembled me, that had the same (genetic) heritage, the same quirks and looks.  For me, the most difficult part of this loss was not being able to pass on my ethnic heritage.  My parents are immigrants to the US from an obscure country which I will hear term Nishkanuland.  I grew up speaking Nishkanulandian and living according to Nishkanulandian customs, and as a child always felt a little bit of an outsider in the US.  Right after cycle #5 I was visiting relatives in Nishkanuland and realized that something I love about going there is how I feel totally at home, not only because everyone around me is speaking my mother tongue, but also because I just look like all the people around me.  It was very unlikely we would be able to find a Nishkanulandian egg donor, so I knew that, chances are, I will not be able to pass on that sense of ethnic belonging on to my kids.  My brother pointed out to me that Nishkanuland is much more ethnically diverse now than it was when I was growing up, so that you don’t need to be ethnically Nishkanulandian to be a Nishkanulander, but still, for me, it was really a snip through a piece of my identity that I always thought I would pass on.  And it was a real piece of heartbreak for me.

But at the same time, even while I was  mourning this loss, I came to a sudden realization.  When my child comes to me, would I look at them and say, “Gee, I wish you were Nishkanulandian, and I wish you looked and acted more like me”?  No way.  I know myself.  When I have children, I will be completely besotted with them, and think they are wonderful and amazing for all their own quirks, looks, and heritage.  When I realized that, I decided then and there that I would start looking forward to the amazing, unique qualities that my kids will have rather than mourning the ones that they probably won’t.

From then on I was really at peace with DE.  There are still some regrets, of course.  The biggest regret is that we can’t have a baby which is Mr. Nishkanu + me.  To see both of us mixed in a child would be an amazing and wonderful thing; this matters to me much more than whether or not I pass on my own genes.  And I hope and pray that if we are lucky enough to have a child through DE, that he or she won’t have to suffer later for our decision to use DE.    But overall, we know this really feels right to us.

And the process of picking a donor was, for me, incredibly healing.  Typically clinics expect that you will pick a donor who looks like you; since we planned to be completely open at DE, looks were really irrelevant to our decision.  Instead, Mr. Nishkanu and I spent a lot of time talking about what attributes we thought it would be important to pass on to our kids.  What is it about me that I would like to see in my kids, if possible?  What really mattered to me?  What gifts would we be able to pass our kids through DE?

In the end I decided that I wanted a donor who was, like me, a positive, outgoing, friendly, and energetic person, curious about the world, at least minorly athletic, and with some academic or artistic talent.    It was also important that she seemed to have a warm heart, since my kid might want to contact her one day and I would like her to be kind if that happens.   Her ethnic origin should be such that the kid would feel at home in Mr. Nishkanu’s home country, which is not as open-minded about ethnic origin as the US.  If she had some Nishkanulandian roots, that would be a bonus, but it was quickly clear that that heritage was so obscure that I would never be able to find someone who would meet my other criteria if I insisted on this.  We also leaned towards finding an older donor (“old” here means past college age), because we wanted to be sure that she really knew what she was getting into and gave true informed consent.  Mr. Nishkanu got to give some input in who to pick, but in the end, it was my gametes that were going to be replaced, it was therefore my choice.

We ended up choosing donors twice, unfortunately, but both donors are (from what I can tell from their profiles) amazing women.  I am really grateful to them that they were willing to go through the arduous process of donation just to give us a chance at a family.  And to me, that is one of the magical things about DE: the fact that a child that comes to you through it has been conceived through a gift from a stranger.  Yes, the donors were paid for their efforts, but in my mind the donor fee is far less than the generosity these women showed us in what they were willing to go through.  I am still sad that we were not successful with our first donor, because she was such a warm, wonderful person that it would have been an honor to carry and care for her genetic child.  Maybe we will be lucky enough to have that experience with donor #2.  If so, I really hope we will be able to meet her one day.

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How I think about DE

Originally I wanted this post to be about why we chose to pursue donor egg (DE) for now as opposed to adoption or child-free living.  But then I realized I couldn’t really explain that without talking a lot about how Mr. Nishkanu feels about it.  And Mr. Nishkanu did not ask to have his private thoughts and emotions posted on the internet.  So instead I will talk about how I personally orient to DE.

This is an assvicey kind of blog generally speaking and to fit in with the theme maybe I should have titled this post “How you should think about DE.”  But with this topic it is even more obvious than with my usual blog fodder that this is not going to be a one-size-fits all decision.  Nevertheless I thought it might be useful for other people who are thinking about pursuing DE (or DS) to hear the stages I went through on the way to finding a positive orientation to DE.  I want to emphasize that everything I say in here is purely about how I think about DE  for us and is not meant to be a commentary on what other people are doing or how they should approach this family-building method.

To be honest, when I started TTC, DE was not even remotely on my radar.   I went to an elite university and was turned off by the ads in our school paper from (in my eyes) rich people who were willing to pay big bucks for beautiful young women with high SAT scores, athletic abilities, etc. to donate their eggs.   That left a really bad taste in my mouth about the politics of DE and how they tie to our ideas of what makes women valuable.  It seemed kind of like prostitution, using young women’s bodies with no respect for their feelings and taking advantage of an income difference to coerce a woman to do something she wouldn’t normally do.

So my initial orientation to TTC was that we would try with our own gametes, and if that didn’t work, we would adopt internationally.  Once our first RE gave up on us, we started talking about further options – a second opinion, DE, or adoption.  At that point I was pretty much ready to go to international adoption (aka “saving a poor young child from a lifetime of poverty”), but then we got our optimistic 2nd opinion and lots more rounds on the IVF Hamster Wheel of Doom instead.

The advantage of this postponement was that, being a “Let’s Have a Plan B” type of person, I had a lot of time to think through the implications of various alternative family-building methods.  I read through a big pile of books about adoption and about donor gametes.  And in doing this reading and thinking about what these options might mean for us, my thoughts about how these family-building methods would work with us really started to change.

My attitude about what kind of adoption  would be right for us changed a lot after reading about the implications of different kinds of adoption for the adopted child.  I can’t go into all the details without talking more than I would like to about Mr. Nishkanu’s situation, but it basically came down to the fact that after a lot of reflection about our personal situation, what we thought was ethically justifiable, and what we could offer a young child, the kind of adoption that made the most sense for us was domestic open adoption of a Caucasian infant.  And what was clear from that was that, far from “saving a poor child from a life of poverty” as I had initially thought, we would be joining an enormous queue of parents who wanted to adopt a Caucasian infant.   This was the true zero-sum game, for if we adopted a particular child, another couple would not.  That made the morality of the situation much less clear-cut than I had initially (rather naively) anticipated.

At the same time, Mr. Nishkanu became an advocate of the DE approach.  The first time he brought it up, I looked at him like he had sprouted an extra eye in the middle of his forehead, and then said, “I will only do it if we do not pretend that it is my genetic baby.”  I don’t know why this is the first thing that occurred to me, but I felt strongly about it then and still do, that for me it only makes sense to do DE if we are going to be totally open about it, not only with the child but with everyone around us.  Initially I thought about this in terms of the weirdness of having people comment “Gee, her eyes look just like yours” or “What do you think he has from you and what from your husband?” and then making up some kind of fake genetic connection.  I’m not interested in living with a big lie at the center of my life.  Later on I thought more and more about the true gift that is DE, how unenlightened people are about it, and how happy I would be to share my joy about what it had brought us (assuming it works for us… another story).  To me DE is kind of like half an adoption, and we fortunately don’t hide adoption any more, so I don’t see why we should hide DE.  Though I intellectually understand the arguments about letting the child decide for him/herself who should know, that’s not what feels the most right to me.

In any case, I started to read about donor egg and realized that the situation was much more complex than I had initially thought.  There is a lot about the way that donor egg is organized in the US that I still really don’t feel comfortable with; it is crazy how unregulated the business is and how all kinds of sleazy things are perfectly legal (e.g. paying a young woman $50,000 for her eggs – in my opinion there is no way we can talk about true informed consent when so much money is being paid).   In one of the countries where I have lived, donor egg is illegal, and whenever they talk about donor egg on TV they immediately show websites in the US of egg donation programs which are marketing donors like some kind of weird Miss America contestants – e.g. The Egg Donor Program: ” Our Los Angeles based egg donor clinic has the most beautiful and accomplished donors in the country” .  And frankly, I think they are right, that stuff is embarrassing to me (note I am not saying it is necessarily bad to use such an agency, I am just uncomfortable with it myself).

But just because it can be that way doesn’t mean it has to be.  Given the unregulated state of egg donation in the US, each individual couple has to decide for themselves what they think is acceptable and what isn’t, and how they will go to to work with an egg donor in a way that works for them.  And for me, after a lot of reading and thinking, the following defined “works”:

  1. I wanted to work with a clinic or agency that had high ethical standards, that made sure that egg donors really knew what they were getting into and were fully counseled before proceeding, and that treated egg donors like people and not like a commodity.  It is almost impossible to get reliable information about the ethical standards or medical or psychological screening of egg donor agencies.  Therefore, we decided to work directly with a reputable clinic egg donor program affiliated with the ASRM rather than using an independent egg donor agency.  This also saved a hefty agency fee and reduced the problems of mismanaged communications.
  2. We wanted to find a donor who could be contacted by the child later.  The studies that have been done of adult donor children suggest that many of them feel a real hole in their identity if they cannot contact the donor and know little about them.  This also jives with what is known about adopted children.  Unfortunately, clinics on the East coast do not generally allow for any kind of contact, even if the donor herself would wish it; for example, our original clinic told us they would only release donor contact info if required by a court.  To have the potential for contact with a donor, you have to go to the West coast.  That is a hassle when you live on the East coast, but I felt we owed it to our future kids to make that possible for them.  On the positive side, West coast clinics have a lot more donors available, you can pick your donor yourself, and you do not need to share a donor as you might at an East coast clinic.  (It would have been extra fabulous to find a known donor, but unfortunately my dear friends and family who volunteered all had their own infertility issues to deal with and were not considered appropriate by my clinic).

In terms of the morality or ethics of the decision, what I initially had seen as a black-and-white decision between ‘good’/altruistic adoption and ‘bad’/selfish donor egg turned out to involve a lot more shades of grey.   When looked at closely it is hard to see domestic Caucasian infant adoption as “giving a needy child a loving home” when there are so many loving homes already waiting for these children.  And if pursued under the right circumstances, egg donation could be an amazing gift from a fully informed, consenting donor.  I ended up feeling that the decision between these two was really a toss-up, I could be happy with either.  Two things pushed me to try donor egg  first: (1) Mr. Nishkanu felt more comfortable with it (2) if I had the chance to have Mr. Nishkanu’s child and I didn’t do it, I thought I might regret that later.

And so we decided.

Deciding for DE is not the same thing as being happy about DE though.  That will be the topic of another post.

Please note that I am providing this information to provide one perspective that might be helpful to other people considering donor gametes, not because  I want to make my family-building decisions subject to the peer review of the internet.  Comments that provide alternative perspectives are very welcome, but comments that suggest we are wrong or evil because of how we are building our family will be deleted.

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Accepting my infertility

When I was in the first few years of TTC struggle, like many infertile folk I had a difficult time dealing with things like baby showers, pregnant women, and families with small children.  It hurt to see other people have the things that I wanted so badly but seemed impossible to achieve.  For example, a dear friend of mine has her refrigerator plastered with pictures of her friends and family.  In one corner are three birth announcements from the same family, each perfectly timed two years apart, and each with a line about how a child is a blessing.  Every time I saw them lined up there it would send an arrow through my heart, as I wondered why we couldn’t be similarly blessed.

At the time I didn’t really know when or how I would be able to move past that kind of pain.  Now, I do.  Because after a few years, that kind of thing didn’t bother me any more.  While we were waiting for our last embryo transfer, Mr. Nishkanu and I went to visit a local aquarium.  It was  packed with young families holding babies and kids running around, and the sight of all these young families didn’t bother me in the least.  My goal in this post is to share what got me from feeling the constant pain of infertility to recognizing that infertility is simply a part of my life, in the hopes that this might be useful to someone else who is stuck in the horrible pain part.

To some degree what I tell you here won’t really matter, since I think the most essential fact is that what you’re doing when you feel that pain is grieving, and there are no shortcuts in grief. The thing that makes infertility grieving particularly challenging for many of us is that infertility is often not very clear cut – you start by suspecting there might be a problem, then you know that there is a problem but that there are also solutions, and eventually – if you aren’t lucky – you start to realize that maybe for your problem there is no solution, or at least none that you can afford, whether monetarily or in units of emotional pain.   The grieving over your infertility takes place in small steps, in every cycle, but you rarely know how much you need to grieve, how much pain you need to take on and work through, because you never know – the next cycle could work, hope keeps springing back up again.   In a way the grief of infertility reminds me of the grief that people feel when they have a loved one who is missing – you don’t know whether you should mourn their passing or look forward to the joy of reunion.  You are stuck in a grief limbo.  The difficulty of such a limbo is clear from a recent study which showed that women who have to wait for a cancer biopsy result have as high a stress level as women who have gotten the news that they do, indeed have cancer.  And knowing the situation means you can start coping and doing something about it.  In infertility the situation is often not so clear.

Note: I have not been in the situation of learning in one fell swoop that you are definitely, 100% infertile.  I am not trying here to say “that would hurt less”, just trying to explain the special characteristics that make grieving infertility in an incremental way difficult.

Still, there were two things that I realized along my infertility journey that helped me to move to more of a sense of peace with my infertility.

One thing that helped me a lot with the pain that I felt when other people had what I wanted was to recognize that babies are not a zero-sum game, i.e. the fact that someone else has a baby did not cause me to be infertile or take away my baby.   I began to play a game with myself, where when I would see or experience something that made me jealous, I would ask myself, “If she was not pregnant / did not have that child, would that help my situation any?”  And obviously the answer was no, even I could see that.  If that couple walking down the street happily holding hands with their laughing child were instead walking down the street alone – or even walking down the street sadly, coping with the sadness of infertility – would that make me feel better?  No, it really wouldn’t, it would just mean there were more sad people.   Playing this game helped me to not take other people’s fortune as a stab to my heart.

But this was a relatively minor shift.  There was a much bigger shift that came in my thinking which took much of the sting of infertility away.  Even in the depth of my pain I could recognize that, as bad as my situation was, there were plenty of people who were in the same situation.  And as bad as the pain of infertility is, there are other situations in life that would be even worse.  There are awful things that happen to people every day – terrible diseases, accidents, violence, hate, war, loss of loved ones – compared to which my infertility was like a little dip in the road.  I slowly began to realize that what was driving the pain I felt about the unfairness of infertility was the belief that somehow I was special in that I should be spared suffering.  I thought that I had been unfairly picked out for suffering, but I realized that actually, until then, I had been unfairly picked out not to suffer.  As trite as it may sound, suffering is a part of human life.   Nearly everyone will have some kind of cross to bear – true, some more than others, but then again, me far less than some.   Those jealous eyes, looking at someone else who has something I want, don’t see what they are struggling with and suffering through, or what trials they will have to bear in the future.  Around us, everywhere, are people who have suffered through one trial or another, and I am simply one of them.  Infertility just happens to be the trial I am bearing right now.  It is nothing special.

Note: again, I recognize that I was lucky not to have had really terrible suffering until I hit the bump in the road that is infertility.  You may have suffered more than I have before getting to infertility, which would make it seem that much more unfair.   If that’s the case, I don’t pretend to know to how helpful this would be for you.

This realization has had both positive and negative ramifications for me.  On the negative side, it really makes me feel old.  I remember when I was a young girl, and someone would ask me what I wanted to be when I grew up,  I would say something like “a princess astronaut ballerina.”  I believed  anything was possible, I could achieve greatness, my dreams could all come true, life was exciting and full of possibilities.  Now, not so much any more.  Many wonderful things happen in life, but also many bad things, and there is nothing special that will save me from the bad stuff.

On the positive side, though, the insight that suffering is a natural human state has made me much more empathetic.  I understand better what it is to be someone in pain, suffering through something that makes you feel like you live in a different world from all those around you.  I met someone a few months ago who upon being introduced immediately told me that his adult son had unexpectedly died a few years before.  The naive, the-world-is-a-beautiful-place me would not have known what to say, and would have wondered at the strange intimacy.  This me, though, just said, “That’s terrible; it must have been such a shock.”  And listened as he told me about it, asked him questions about his experiences, and enjoyed a wonderful, warm, and very human conversation.

Don’t get me wrong.  Some people talk about the gifts that infertility has brought them.  While I respect that attitude and agree with it to a certain extent, I would happily give up these insights to have had the life that I wanted to live.   You don’t have to be happy you are infertile.  But it is possible, when you are ready, to get to a place of general peace with it.

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