Monday, September 1, 2008

The Merry-Go-Round

So many thoughts spinning round and round in my head. It makes me dizzy, trying to hang on to them all, trying to grasp one though before it spins out of the way and another whirls into brief focus. It’s nauseating, frightening, awful, and, at moments, exhilarating.

First, J and I are seriously considering donor sperm (though we are agreed that no matter what the final decision is, we will do one more cycle with his sperm). I say “considering,” because J hasn’t made a final decision, and it’s 100% his call. As far as I’m concerned, where we get the sperm is his half of the child-making venture, so he gets to decide. I know that I would prefer trying donor sperm before adoption, but that’s only my preference if it’s what J wants.

Donor sperm. What a terrifying concept. In the abstract, in the tiny world of the family that is me, J, and our future child, it isn’t so scary. I mean, if adoption is cool, what’s so strange about half-adoption? That’s all donor sperm is.

But in the Big Scary World of extended family, friends, colleagues, and acquaintances, using donor sperm takes on a whole new shape. While everyone thinks adoption is the greatest thing since deep-fried cheese (so much so that many already have suggested that I start the process now), the use of donor sperm is considered freaky, unnatural, bound to cause problems. As my very best friend said to me when I floated the idea, “I think that’s a terrible idea. J might want to do it now, but he’ll never be able to live with it.” I love her, but she’s so wrong. Sure, there would be things that would be hard about it, and I’m sure that it would cause J both jealousy and pain as well as joy. But the worst part of what she said is that she’s proven to me what I suspected all along; this isn’t acceptable to the general public.

If we were to adopt, everyone would know (especially given that we’d probably adopt from Ethiopia). But if we use donor sperm, it will be a closely guarded secret, with only a select few our closest friends and family knowing. Certainly I’ll never tell my mother; it would just give her too much ammunition for the next time she decides to hurt me.

And though I’m the least secretive person I know, I think this would have to be very, very secret. First, unlike adoption, donor sperm can be kept a secret. Second, it’s just too controversial for me to lay out there. And there is the privacy of my kid to think about. I don’t know how you tell a kid about donor sperm, but I don’t think it’s like adoption—where you tell them from the very start. How can you? Can it even be explained before you explain the birds and the bees? What if a well-meaning friend said the wrong thing to my child by mistake, before we had told him or her? And maybe my kid won’t want everyone knowing. It just doesn’t seem like it’s my secret to tell. (By the way, anyone who knows anything about this is welcome to chime in here. I’m desperate for information about how this is handled.)

For those who keep their IF and ART a secret, I don’t imagine that sounds all that daunting. But for me, it’s really scary. I have a pretty big IVF support network. At least six women at work––not even counting my bosses––know I’m doing IVF, along with another six or seven close friends outside of work. Even more co-workers and friends vaguely know that I’ve been TTC for three-plus years, and that treatment is involved. I’m just a wide-open person. I don’t like keeping secrets about myself; it’s just too important to me to be able to talk about how I really feel.

So here’s how I picture this: We switch to donor sperm early next year, and I get pregnant. (Because if it doesn’t work, there’s no point in being freaked about this.) And then my wide world of friends and co-workers learn I’m finally pregnant. Finally! After three to four years! Huzzah! Babychaser finally has everything she ever dreamed of!

Do you see the problem? What if I’m still grieving about the loss of J’s child? How can I accept the congratulations of everyone I love, telling me how glad they are that I’ve gotten everything I’ve been wanting all these years, when I’m still hurting because I didn’t get what I wanted? How can I pretend to be concerned about ordinary fears of an ordinary pregnancy, when I’m worried about much stranger and larger concerns, like having no idea who the father of my child really is, or what that child will be like? (And it also will be strange after we have the kid. How many people will tell us how much our kid looks like J? How odd to have to just smile and say “thank you” to your friends.)

If we use donor sperm, I will be thrust into this strange new world, completely cut off from some of my closest friends (I probably won’t even tell my aforementioned BFF). Infertility is already so isolating. More isolation seems terrifying.

And now there’s more to the equation, something I never dreamed of. Last spring we learned that T, our little 2-year-old niece, has missed every communication milestone. She is the child of J’s twin brother (fraternal, in case it matters), and they live all the way across the country in Portland, so we never see them, and therefore didn’t see this coming.

This weekend I learned that she was diagnosed with dyspraxia, a condition that affects both muscle tone and fine motor functions. T doesn’t have the fine motor skills to talk, but she also doesn’t have the motor skills in her hands to sign. She also has trouble distinguishing language with her hearing. She’s 2 ½ years old and she can’t communicate. She’ll never have good muscle tone, and she’ll probably be in special ed for the rest of her childhood. She’s a sweet and mellow kid, which is a good thing, because she’s plenty smart, and this must be so frustrating for her. Not to mention the strain on her parents.

Here’s the kicker: it’s hereditary. My MIL tells me that she thinks, after reading about the condition, that it’s the same condition J’s cousin had before he died a few years ago, and that even J’s uncle has a mild version of it.

It’s hereditary. It’s in J’s genes. And we’re almost ready to give up on those genes.

See what I mean about the merry-go-round, the whirlwind in my thoughts? Just when I thought donor sperm would be such a sad alternative to what I really wanted, I have to wonder if it would be so bad after all. Because now if I do get pregnant with J’s baby, it will be years before we know whether our child is developmentally disabled. And while I know that J’s brother and his wife are in love with their child, and aren’t sorry they had her, right now I can’t face the idea of having a special-needs child.

Of course, donor sperm doesn’t come with guarantees either. I’m sure J (were his sperm count normal) would have qualified to donate when he was younger. And there are a lot of conditions out there, like dyspraxia, that aren’t yet identifiable with genetic testing. But suddenly I’m less sad about the idea of using donor sperm.

And along with that less-sadness comes a certain excitement. Because, to be perfectly honest, I no longer believe that J and I can make a live baby. I believed it wholeheartedly until this last cycle, but I just don’t anymore. And I’m tired of beating my head against a wall, getting nothing but more pain and more debt on every try. The idea of doing something new, something that has a good chance of working (apparently my eggs this last cycle, while few, were very high quality), leaves me almost breathless.

Did I mention that there’s more? The merry-go-round just spins faster and faster. I talked to my RE on Friday, sort of a post-mortem on the last cycle. As I mentioned, my eggs were great, and J and I actually produced better quality embryos than ever before; they were much farther along at day 3 than the day 3 progress the last cycle. But J’s sperm quality was much, much worse. (It can get worse, you ask?) The post-wash motility was so low they couldn’t even measure it. Apparently they found a few sperm to ICSI into my eggs, and we made good embryos. But this rapid decline in J’s sperm is astonishing, especially given how much he’s cleaned up his lifestyle in the last year.

So I asked her whether that could be due to age, because how is it that his sperm are getting progressively worse so fast? And she said no. And I asked, with my heart pounding in my throat, if she thought it might be “health-related.” And she said that was her concern as well.

Last year, J had a strange occurrence of “primary-cough headaches,” (we only learned what these were afterward), blinding headaches that would hit him after he started coughing. We spent about 8 hours in the ER, where––after he uttered the words “worst headache of my life––a flurry of tests began. He was given an x-ray, and MRI, and a lumbar puncture. And while we waited for the results, we knew that it was possible that he had a tumor, or a bleed in his brain, life-ending or life-altering conditions. It turned out to be nothing serious, and he was given a shitload of painkillers and inhalers and it went away.

But I felt a cold fear in my veins, a blind terror, that I had never felt before. In a matter of minutes I realized that the ability to have a baby was nothing, nothing in comparison to my need to have J. So when my RE suggested what I had feared, that J’s rapidly declining sperm was a sign of something else, that rush of cold adrenaline kicked in again.

She’s going to talk to the endocrinologist next week, and I imagine J’s in for a lot more bloodwork, etc. I did manage to ask her whether, if it were testicular cancer, the urologist who saw him in March would have picked up on it, and she said yes. So I’m not freaking out like I was last year with the headaches. But I’m worried. More worried than I’ll admit to him, as he doesn’t seem scared and I see no reason to make him that way.

And if that weren’t enough spinning around in my brain, today is the day we tell J’s mom that we’re running away for Christmas this year. If this last cycle had worked, there was a chance we’d make it out of the woods on a pregnancy before Christmas. But last January, J and I had agreed that if I wasn’t going to be three months pregnant at Christmas, we weren’t going to do Christmas this year. It’s just too sad for us. Christmas has been exactly the same for the last 10 years. Four adults (J’s mom, J’s aunt, and the two of us) sitting around for two days having the same meals (the women won’t let me change it up), the same conversations, the same stupid jokes about who’s going to get more presents, about who’s going to steal from who’s pile of loot at the end of the day. Each year, J and I think more and more about what it’s supposed to be—a time filled with hysterical children hopped up on too much sugar, freaking out about Santa, filled with delight at the magic of the lit tree at night, entertaining the older women. Every year, J and I get more and more depressed, sad, and our forced merriment becomes more painful.

We’re not doing it this year. We’re running away, probably to a cabin in WV for a few days. And J’s mom is going to FREAK OUT when we tell her. She literally spends all year planning for Christmas (which is part of why it’s become such a nightmare). Oh my god, this is going to be ugly.

My life is insane. I don’t know what to think of it. Right now, I’m just trying to hang on to the merry-go-round, less I fly off into space and madness.

Thanks to all of you for your kinds words and support this last week. I know it’s all been said before, but you women mean so much to me, and I really don’t think I could do this without you.

20 comments:

Sophia said...

As a lesbian, i don't know the specific dynamics of using donor sperm in a heterosexual context but i blieve there is a book called Helping the stork that talks about that specific topic

Unsung lullabies has been a great support for general infeertility issues. Amazing. I reviewed some chapters in my WP blog not the blogger name I have to use here

My thoughts are with you both as you navigate these issues.

www.nycphoenix.wordpress.com

Meghan said...

Although not in exactly the same position as you I did want to put in my 2 cents about adoption. We suffered a miscarriage at 10 1/2 weeks this past Feb and while we recover emotionally and physically we are pursuing adoption from Ethiopia. We're almost on the waiting list. As soon as we get further along in the process we'll start trying again. I believe you can have both...

Newt said...

Wow. That's a lot to handle all at once; I don't know how you stand up to it all with such grace.

First, my thoughts are with you and J as you try to find out if he really has a health issue. Sending all my hope that there's nothing wrong, or at least nothing seriously wrong. I hope you can take that fear off the table ASAP.

I don't have any answers to your questions about donor sperm and such, but I hope you can find some good resources on the issue. I would have the exact same concerns. At the end of the day, what works for you and J is all that matters.

Finally, fried cheese sounds really good. Does that actually exist? I need to get out more.

Ally said...

Wow-that is a heavy post, sweetie. You've got a lot going on right now. I don't have much solid advice (only assvice) but I do want you to know you're in my thoughts. I wish you peace and clarity as you work through these issues and come to the other side.

I don't think there is a thing wrong with using donor sperm, but I realize that puts me in a minority of people not touched by IF. I am of the mind that people can and should do whatever works for them, regardless of what others think or feel about it.

As far as who to tell and how to tell-that's completely your decision. I firmly believe you will be able to figure that one out as you go. You'll know what is right; you will feel it in your gut. (I have had a student in the past who was conceived with donor sperm. She wrote about it quite openly and honestly. I thought it was pretty awesome, actually.)

I am proud of you for running away for Christmas. I know telling people about it will be yucky, but I think it sounds delightful. And I am sure you won't regret it!

I'll be thinking about you and, as always, wishing you well on your journey.

Io said...

Oh my dear friend. So much of what you wrote is what I think. Hopefully we'll be able to do IVF someday, but we're probably a one shot deal. If it doesn't work, I think we want to move to donor sperm, but oh the issues that I worry about coming with it.

And then I also worry about the fact that Al's CBAVD might be passed down to a son. It's genetic - his brother has it. Ug.

E said...

I just want to share my story..since there are a few common pieces that you talk about.

First, we are adopting and one of the most painful remarks I got was from a best friend of 23 years. That hurt! We had a miscarriage at 11 weeks and decided to adopt. Next we have a 9 year old son that has dyspraxia and as far as I know there are no family histories of this to carry it on. So my point is, you can have a biological child, be healthy and still have a child with special needs so for the sperm donor part (as I view our adoption) has no greater risk of health issues as a biological child. Sorry to ramble, just can relate to what you talk about. There was a show on Oprah about sperm donors and how the parents told their children. Might be interesting to watch, not that she provides a great resource but you can hear other families.And I agree about privacy, if we adopt we will not tell everyone the whole history behind the adoption, that is private, for the child to decide if they will share or not.

annacyclopedia said...

Oh sweetie! There is so much in this post that I can relate to and have journeyed through myself, so first let me say that I am here for you anytime if you need to talk. You can email me (annarchyinjapan at yahoo dot com) or you can phone me (you can email me for my number!) The book "Helping the Stork" is a pretty good one - I found it before I found the blogs, and it was really reassuring to hear parts of my own story being told, and also to find such an in-depth look at all the issued around DI.

I want to reassure you that these are not questions that can get answered overnight, nor do I think they are questions that you need to have completely resolved once and for all before moving forward. For example, I still sometimes worry about what I will say when people tell me my baby looks like Manny, or how some people will react if they find out. But in terms of what it means between me and Manny - I do feel like that part is pretty much sorted. I know that I will have some grief come up and some anger at different times - like when I get pregnant (I'm trying to think positive - can you tell?) or when I have the baby, or when people make remarks about who the baby looks like or takes after, or when I have to deal with my child's emotions about his or her origins. I guess one of the ways I've reconciled some of that, or at least let it go for now, is to accept that everyone has issues that they face in becoming parents. I just happen to know what some of mine will be, and the same goes for my children - I happen to know what some of their identity issues will be.

It is so very very hard considering this path because it can be a secret, and that is especially painful when we are not secretive people. I've told most of my close friends that this is the path we're considering, and frankly, I wish I hadn't told so many people. Not because they reacted badly, really, although I wouldn't say everyone has been perfect, but because I do think that this is my children's story to tell. I plan to tell my children from the very beginning, but it's a very personal choice. (I was told about the birds and the bees when I was 2 and my sister was born, so I guess that explains some of my ease with the idea of telling early.) I do think there are ways to talk about this stuff that are developmentally appropriate and follow the child's cues and the child's need for answers, and there are resources out there to help us do this.

Long story short - I totally get it. And I am here for you. In fact, it would be an honour if I can help you negotiate any of this part of your journey - whether you choose to pursue DI or not.

Hang in there, sweetpea. You're not alone.

Lisa said...

So much to be dealing with....

I just wanted to let you know that I understand. We are about 1 step away from having to use donor egg and I struggle greatly with the loss of my genetic connection, but, I KNOW I will get over it. You have to make the decision that works best for you, the "you" that is the collective of you and your husband.

Rebeccah said...

I can relate to so much of this. Many of the same thoughts you're having about donor sperm spun through my head when we were considering donor eggs. My family has serious mental health issues that are clearly genetic, and the relief I felt at knowing that an egg donor could keep my child from having those same issues was overwhelming. And the guilt -- oy, the guilt. We were going to be open about the process, and I knew that it would be really hard and that people wouldn't know how to deal with it.

I really don't think that people can truly understand what it's like to face donor gametes until you're actually there with your back against the wall. I'm sorry you've reached that place, and hope that somewhere in this whole messy process, you and J reach a decision that gives you both peace.

As for Christmas, honey, don't get me started. I am SO ready to have my own traditions and have them involve our child/ren, but since we're the childless couple in both of our families, that holiday always involves traveling to someone else's house and dealing with other people's traditions, and yes people freak when we don't show up at one family location or the other. At some point, you really want to feel like a grownup person with your own life and Christmas is all about kids and dammit all why don't we have our own kids yet ... etc.

Hats off to you for taking a break this year. Wish I could talk the Mister into doing the same!!!

Ms Heathen said...

I'm so glad that you posted, babychaser. I've been thinking about you such a lot over the past few days, and wondering how you were. I hope that J's health issues do not turn out to be serious, and that that will soon turn out to be one less thing for you to worry about.

I can relate to so much of what you write here. After two poor responses and a diagnosis of diminished ovarian reserve, I was beginning to think seriously about moving to DE. Using a donor is a very difficult decision to have to contemplate, and inevitably requires a period of grief and readjustment. If you do decide to go down this path, then both you and J will need time to come to terms with the fact that your child will not be genetically related to both of you. What is important is that you will have created that child together, and you will BOTH be its parents - regardless of any biological connection.

Using a donor is also a very personal decision. Although friends and family may wish to weigh in with their opinions, frankly, it is none of anybody else's business how your child was conceived - whether it be through DI, IVF or good old-fashioned sex! But, from the reading I've done on this issue, the general consensus seems to be that it is best to tell the child from the word go - that way, when they do find out, they do not feel that they have in any way been deceived about their origins. When I was looking into this issue, I found the Donor Conception Network an excellent resource (http://www.donor-conception-network.org). It's a UK based site, and has a lot of really helpful advice on how to broach the topic, even with very young children.

Lastly (since I appear to be on an assvice roll), I think you should stick to your guns about Christmas. If you and J want to spend the holidays on your own, rather than making polite conversation with his mother, then that is what you should do, and you should not be made to feel guilty about doing so. Christmas is hard enough for those of us dealing with infertility, without these additional pressures!

Wherever you decide to go from here, you are very much in my thoughts.

kate said...

Wow. So much to think/talk about. I do think it's weird how the universe seems to deliver information in what appear to be drips and drops, but then laughs at us while we freak out as those drips and drops become tidal waves. I think you've just been hit by a tidal wave.

Not to be all metaphysical and whatever, but the current seems to be leading you toward the difficult decision of whether or not sperm donation is right for you as a couple ('cos even though this is ultimately J's choice, you obviously have to be comfortable with it as a choice, too.). Slam. The current wants you to face this issue. And I think that you have it right, with the spinning thoughts and plucking things out of the air, etc. Pluck what you can, and, for now, just ride the current.

My BFF (apparently, like yours) can be a bit of an insensitive twat sometimes (sorry if that isn't what you meant to convey when you shared her thoughts, but it just seemed to me as though there might have been a bit of her talking out her ass, though you are right that she does, at least, reveal what many, many people will possibly be thinking). However, my friend, while I was spiralling off on thoughts of what would happen if I was faced with a career choice that required a move after finishing law school, and she said (yeah, a little bitchy, but true), "You haven't even taken the LSAT yet. Quit worrying about possibilities that are thirty steps beyond where you're at right now."

Now, I think you and I are quite alike, in that I just need to be prepared, I need those thoughts to swirl around me, I need to process them bit by bit, all the while feeling the excitement of the eddying options, etc. BUT. While in your case, it is crucial to begin thinking about options before they present themselves as necessities ('cos they are such big decisions), I would recommend trying, when the swirl gets to be a little too much, to take the tiniest of doses of my friend's bitchy advice, to remember that you aren't there yet, and that other options may distract you in the mean time and take you down a totally different road. But please only consider that if you begin to feel overwhelmed. Otherwise, the pondering IS kind of fun, kind of important, kind of necessary, and a good preparation if the decision does come to that.


As far as your husband's possible illness, that is incredibly scary, and my heart goes out to the two of you (why is it than men can look at the same facts we have, shrug, and go on with life, while we look at them and think, "oh, god, he's gonna die and we're never gonna make it without him," etc."???). I wish you peace of mind, clarity, as you approach this issue further with doctors and tests, etc.

I will email you soon about possible visit dates/times. I got kicked by the universe the other day with two separate reality-ish programs on two separate topics (real estate, and dating- or maybe something besides dating- the second program was boring as hell and I turned it off quickly, BUT) that dealt with couples living in your EXACT town... so, I felt like the universe was poking me, reminding me to email you about possibilities.

Oh, and I am about 40 pages from finishing the His Dark Materials trilogy, and I need to blog about it and when I do, I need to have your insights!

Barb said...

Wow. SO Much to think about. And I imagine there's a way to work through J's feelings on donor sperm just as there would be for adoption. It's kinda crazy to say that it "can't" work like your (cousin?) did.

Good luck with all this.

Shinejil said...

My thoughts are with you, bchaser, as you face what will hopefully turn out to be a strange but non-health-threatening decline. REs are always weighing all sorts of theories, and male IF seems to have been just as poorly studied as female issues. I'm sending lots of hugs to the two of you as you move through this.

I think you're right to make it J's decision. You don't have to know right this instant how you'd want to handle a pg with ds (maybe J has some idea what he'd like to do in that situation). You may never have all the answers if you pursue that option.

Just know that no matter what, you'll make a good call. You've been through a lot and there are plenty of us out here who will understand, however you decide to play things.

K77 said...

Another book rec for you is "Building your family with donor insemination" by Ken Daniels. I think the titles right but I may be a little off. Lots of stories in it from real people.

Io said...

Hey lady, I gots no email for ya. emailforio at g mail dot com

La La said...

To tell or not to tell is a really HUGE decision. I'm not sure if everyone remembers this, but Hubby and I did two IUI cycles with donor sperm before doing IVF with Hubby's (and getting our miricle babies).

We went back and forth for a LONG time on whether to tell or not. At first we were 100% NOT going to tell anyone. And then we decided that I had to tell my best friend because I needed someone to vent to, and then my parents, and then the whole thing just ended up getting cracked wide open.

In the end telling would have been the best decision for us because otherwise we would have lived in constant fear of the child "finding out" when they were older.

It's such a personal decison though and you have to do what is right for YOUR family.

My one piece of advice though is if you do decide not to tell, I highly reccomend not telling ANYONE.

GL!

La La said...

PS Someone else mentioned "Helping the Stork". That book was my bible durring our donor cycles - I also highly reccomend it.

Ms. J said...

I am sorry I am late in chiming in (hope you're still reading these) . . . okay, first, we thought about donor sperm - actually, we don;t know why the RE didn't suggestit first before doing a full-fledge IVF since we openly said that adoption was our first option since we didn't have a burning desire to biologically reproduce AND my man's sperm was thee big problem. We reasoned that if one was willing to adopt, what the hell was the big deal with donor sperm? We'd have kept it quiet, though. People ARE weird about it. But people are weird about adotion, too.

As to your J's strange health symptoms and the family health history issues swirlig in your head -- PLEASE GET A SECOND AND THIRD COMPREHENSIVE WORKUP DONE ON HIM PRONTO!!! The most expensive thing in the world is regret, and waiting any longer will consume you with such worry that I think it will become even more overwhelming for you (and he) to deal with.

Christmas . . . DO GET AWAY FOR CHRISTMAS! You do not "owe" anybody else YOUR Chirstmas together. One Chirstmas we lied to my family that we were going to Dr. J's family for Chirstmas. We didn't. We spent it at a luxury resort for 2 days. Another blogger I know is going on an adults only cruise! There is also the option of an adults/beach resort - but the cabin idea sounds divine, also!

You have mye mail address if you want to talk some more - I am thinking of you LOTS, Sweetie. I really am.

DI_Dad said...

If you do consider donor sperm more seriously I encourage you and your husband to check out the following groups and sites:

http://groups.yahoo.com/group/di_dads/

http://health.groups.yahoo.com/group/DonorSiblingRegistry/

The following is a very new group so not much activity or history:

http://health.groups.yahoo.com/group/Spouses_of_DI_Dads/

My own blog from a social dad's perspective:

http://di-dad.blogspot.com

Good luck - Eric

DI_Dad said...

My apologies as two of the URLs I posted were cut off.