Well, That Would be Nice

Last night, a friend and I ordered Chinese takeout for dinner, then unwrapped the fortune cookies that came with the meal.

Her fortune said, "When people flatter you, keep your feet on the ground." Um … OK. If you insist.

Then I opened my cookie, and TWO pieces of paper fluttered out into my lap. I picked up the first one:

Whoa.

THAT'S a change of tone.

Then I picked up the second piece of paper:

A dopey grin spread across my face. I don't believe it for one moment (Has God EVER granted EVERYTHING a person wants? Would that even be a good idea??), but logic didn't stop me from taking a magnet and sticking the two fortunes on my fridge.

More About Embryo Adoption

Most people who go through IVF fill out a form that asks what they'd like to do with any unused embryos, which might be left after a cycle succeeds and the family is complete. The choices are to thaw them without transfer, donate them to scientific research, donate them to someone else, or postpone a decision by keeping them frozen indefinitely.

I agonized over that question. I even asked about options like choosing not to fertilize all retrieved eggs, if I happened to produce more eggs than expected (HA!). In fact, one thing that appealed to me about no-stim IVF was the ability to control the number of embryos created (one at a time, with emphasis on quality).

Meanwhile, doctors all but laughed out loud, emphasizing that I would be lucky to end up with that "dilemma," that I'd more likely end up with no viable embryos at all. They were right about the odds, of course.

But I still think it was right to take the question seriously. While I liked the idea of donating any unused embryos to someone else who was struggling to conceive ... it was a BIG decision. Wouldn't I always feel some responsibility toward any child created from my genes and my actions? Well, yes. I would.

So I appreciate what people go through when they make this decision. I still think that embryo donation / adoption is a beautiful (if not always simple) option. And now, just maybe, I may be ready to take the next step toward the "possible recipient" side.


Types of Donation / Adoption

I'm no expert (so please point out and forgive any mistakes), but I'll try to explain what I've learned so far. This information is specific to the US. I'm not sure how much would apply in other countries.

First, some terminology. I think of "embryo adoption" as an umbrella term to describe this whole process. Legally, though, it's not really an adoption. It's considered to be more like a transfer of tissue, like sperm or egg donation.

"Embryo donation" and "embryo adoption" are sometimes used interchangeably, or used to describe two ends of the same process. On the other hand, "embryo donation" sometimes refers specifically to donations done through a clinic, while "embryo adoption" refers to those done through an agency or through individuals (who may know each other or meet on a website that matches them).

The arrangement may be anonymous, and it typically is when done through a clinic. It can also have some degree of openness, especially when done through individuals or an agency. The parties specify the type of contact they'll want to maintain.

As with traditional adoptions, agencies require home studies and take care of logistical and legal details. Recipients who don’t use an agency coordinate and pay for these things themselves.

Once a match is finalized, the recipients may ship the embryos to their own clinic or travel to the donors' clinic where the embryos are stored. Then a frozen embryo transfer (FET) is done, placing the embryos into the recipient woman's uterus.

Typically, anonymous arrangements through a clinic cost the least, and agencies cost the most. Costs vary quite a bit, though. They may include agency / legal fees, several months of the donors' costs for frozen storage, shipping / travel, and FET. Recipients do NOT pay anything for the actual embryos. For the whole process, I've seen estimates as low as $4,000 and as high as $17,000.

Benefits and Drawbacks

Frozen embryos that already exist get a chance at life. On the recipient side, the "adoptive" mother has the chance to be pregnant with the child. While she's not genetically the parent, she can make sure that the baby gets good prenatal care, and her body may influence the baby's epigenetics. They have that extra time to bond. Legal details are settled before birth.

However, there are far more people waiting to adopt than there are embryos available. (Most of the embryos in frozen storage belong to people who may not be done building their families, who don't intend to donate, or who aren't aware that donation is an option.) When recipients go through a clinic, a wait time of a year is typical. When individuals find each other, the wait time varies greatly; it may be much longer or much shorter.

When recipients don't use an agency, they need to coordinate details like shipping / travel and legal contracts themselves. It's doable; it just requires extra research and work on top of the normal steps required of fertility patients.

And like any fertility procedure, the FET has no guarantees. It may not result in a birth. It's possible that the embryos won't even survive thawing. Since the healthiest embryos are used first in IVF, the ones that remain are often not the most viable. After all, they come from other people who have used IVF to treat their fertility problems.

In cases where donor eggs and/or sperm were used, the information that's available about the donors may vary. Donors may be anonymous or known. They may have come from the most reputable sperm or egg banks, or not. They may have donated in other countries, where the screening requirements are different from those in the US.

Because of concerns about the embryos' origins, many clinics in the US decline to offer FETs with donated embryos. The recipients will likely need to travel farther to a new clinic.

My Thoughts

While the drawbacks are significant, so are the benefits. After looking closely at both, I'm still feeling drawn to take the next step and just see what happens.

My first fear was that finding a match would take an extra long time because I'm single. I also felt some resistance to being questioned on my "worthiness" as a mother. Of course, there will be questions galore (as there should be) if I choose to become a foster parent, which is another option.The resistance comes from years of fertility treatment, with its raised and then lost hopes, lost privacy, and need for a whole team of people to be involved in the most intimate matters. I'm just tired, you know?

But don't get me wrong—I think that questions are essential in adoption. If I were an embryo donor, I would have questions about the recipient(s), too! As a recipient, I would have questions I'd like to ask the donor(s). I would want it to be a dialog and a match that feels right for all involved.

As you can probably tell, I'd be happy with some degree of openness—whatever is comfortable for the donor family. I would also respect the preference of some donors to remain anonymous.

Looking through a website that matches donors with recipients, I was struck by the variety: hetero couples, lesbian couples, singles, secular, religious, very particular or very open about their recipients, wanting basically no contact, wanting to go on vacations together... I was also struck by the one thing they all shared: like me, they've ALL been through the infertility war.

I found myself relating to many of these people, even sincerely LIKING them. Fears of lost privacy gave way to excitement over what we might all gain.

I've always preferred to deal with people personally (for example, in college years, renting "in-law" apartments in private homes rather than in complexes, even if those situations were harder to find). So posting a profile on a website and responding to others' profiles feels like the natural choice.

I think I'm going to try it!

Four Options

Since my last cycle, the spring flowers have (long ago) come and gone, and April has evolved into the 90-degree days of mid-July. I can't stay frozen like this all summer. It's time to make decisions, or inaction is going to end up making them for me.

So … after letting go of these options for parenthood, at least for now, which ones are left? There are four that come to mind:

• Live without children and put my energy toward other things. I'm putting this one first to make the point that it doesn't have to be a last resort, a punishment I feel sentenced to by fate, but can be an actual choice. I can choose to step off the hamster wheel of trying and waiting. I can still be a mentor, a Big Sister, or a court-appointed advocate for children if I choose.
• Continue to TTC with my own eggs. Yeah, I know. Here's the thing (well, one big thing that's been a factor): I'm not just an only child, but the only grandchild on both sides of a close-knit family. The thought of it ending with me feels deeply wrong on a level that I've never felt before. I don't want to be delusional, though, to keep trying beyond all reason and at all costs. Let's just say that I'm very conflicted here.
• Look into embryo adoption. What a wonderful idea. There are concerns—the wait for a match, the cost, the need to research an entirely new set of issues. Also, I'd need to change clinics again. (Neither of my clinics will transfer donated embryos, because they believe there are too many unknowns about the embryos' origins.) That said, I may still sign up on a website that matches donors and recipients. If a match that feels mutually right comes along, well, wow. I would be unspeakably grateful! If it doesn't come along, I won't be up for more years of trying to make it happen.
• Become licensed as a foster parent. One thing that excites me about this option is that it can throw me into the parenting deep end right away. And while there's no guarantee of eventual adoption, the possibility is there. But I can't proceed until things are more settled. I don't see fostering as another path to parenthood so much as a separate thing, deserving of its own sincere commitment. And there are other hurdles. Let's just say that I'm very conflicted here, too. 

Contraction / Expansion

Today I came across this post, which (like so much of Dr. Cacciatore's writing) was thought-provoking and, well, validating. She sees grief not as a state to be escaped or fixed, but as a natural—even "evolutionary"—process. I'm not at that stage of acceptance. Still, her words give me hope:

"Contraction only will leave us unmovable – paralyzed with pain for the duration of our lives, fearful of love and life and terrified of more pain. This is a kind of Death for us. Expansion only is a futile endeavor as well, mostly because it is a ruse. It is often a state of self-delusion and inauthenticity that will leave us unsatisfied with our identity, soul-less, and worn out from persistent pretense. The natural course of grief, as in nature, is contraction-expansion-contraction-expansion-contraction-expansion..."

Almost like birth.

"This is the wisdom of the Universe, the wisdom of your body, the wisdom of your heart.

Trust it, and it will save you."

Letting Go of What I Can

A few weeks ago, I spent a weekend camping at a quiet spot along the river. Nature is my favorite anesthetic. This trip would be like a mini-retreat—unbroken time to make peace with some painful things, while sedated by sunlight, woodsmoke, and the sound of chirping birds.

It was lovely. BUT … how does a person make peace with letting go of such a deep desire?? Not in one weekend.

Anyway, it had to start with looking closely at the situation, meaning my finances and options for parenthood (which are closely related, of course).  Lots of hours and anxiety spent there. Then I sat by the river, just listening for any guidance that would come.

I didn't reach a decision about whether to keep trying or not. What I DID do is let go of acting now on two options, using donor eggs or pursuing private adoption. Those options aren't as time-sensitive as TTC with my own eggs, but I know that choosing not to act on them now makes it less likely that I'll have the resources to do so later. And it feels relatively OK.

Why? Long story short, when I think about those options, I feel myself contract. I sense my focus shift inward from the child to my own anxiety about making this happen.

There are two points I want to make here. One is that others' experiences may be different; those options may feel like the most natural ones for them, and of course I wish them well.

Also, no, I'm not signing on to the belief that "If things are meant to be, then they will be." My beliefs are more along the lines of "It is what it is." Can't argue with that, right?

Sometimes a fight is required. When it has to stop is when I feel momentum tempt me into drifting past limits I set years ago, or when I feel myself shutting down, diverting all energy into struggling even harder to swim upstream.

(source)

The Loop

About that last post: it was something I stumbled across, which totally caught and held my eyes. I don't know the story behind it. The mystery was what drew me in.

There's no big personal symbolism there—not for me, anyway, although clearly there must be for someone. (Personally, I'm neither a burned-out wreck like that house nor hopeful like that sign on the door.) It just seemed worth sharing, especially at a time when words have been failing me for weeks.

Actually, it's paragraphs that are my problem. Lots of words have been coming up, one or two at a time, in a loop:

How can this be? (…that the happy ending is really not going to come, that time is passing so fast, that excitement about future growth has contracted into fear of further loss)

Who cares? (…about all the mundane daily things I need to do, which don't relate to Finding A New Purpose; I try to weed out these thoughts before they take root too deeply, though)

Ouch. (…when unexpected reminders come up, like the maternity pants in the back of the closet)

Later. (…when I think about just donating the pants somewhere and being done with it)

No. (...when I think about officially ending the TTC effort, and also when I think about starting it again)

How can this be? (…that I'm feeling so very stuck)

Take a Closer Look

When You Least Expect It

Other things happened lately, too. For one, I haven't written about my taxes yet.

In 2013, I was very organized until springtime and the miscarriage. Before that, each receipt got filed promptly in its own labelled folder. After that, any mail—any thing, really—that didn't need immediate attention got thrown into boxes and shoved in the corner. This spring I've felt like an archaeologist, uncovering all the receipts and reliving 12 months of huge ups and downs.

There were receipts for the two pregnancy ultrasounds where I saw and heard a strengthening heartbeat, followed by the devastating one. Then paperwork from all the tests the clinic asked me to repeat because another year had passed.

Mixed in with those memories was the detritus that I couldn't be bothered to care about, like junk mail from eight months ago. There were abandoned self-improvement projects and notes about events that I didn't attend, because time, energy, and/or money always seemed to be too short. In the bottom of the last box, I uncovered a spring sweater that I'd long ago given up for lost.

Once they were excavated, I could transfer all these memories to black-and-white spreadsheets. Then it was time to meet with the tax preparer. When I brought up medical expenses, she was dubious at first, warning that now (in the US) people can deduct only the amount that's more than 10% of adjusted gross income—a pretty high bar for most families to reach. Let's just say that I am waaaaaaay over that bar. It's mind-blowing. Panic-inducing. It can't continue, obviously.

We actually had two meetings, because this has been the most complicated, stressful tax year ever. On the plus side, yeah, huge refund. Of course, now the chances for an audit are also high. I'm making sure to get everything super organized. (Tax tips: All my doctors have been happy to provide itemized receipts for all 2013 expenses, which have been very helpful. Also, did you know that you can deduct for mileage driven to and from medical appointments?  It added up to 2,355 miles for me last year!)

Before getting into those details, I had to explain some things about my situation. I braced for possible judgment, because the tax preparer was gray-haired and (I'm embarrassed to say this) "looked conservative." Of course, everyone in a tax office looks conservative; it's the uniform.

No judgment, though. Instead, she leaned forward and asked softly, "Have you tried [name of my previous clinic]?" It turns out that her son and daughter-in-law went through 13 years of TTC, including many years with undiagnosed PCOS, and my previous clinic was the one that finally helped them to have "their miracle twins."

We commiserated about the healthcare system and about infertility. She lived through it, too, in a way. "The night before my daughter" (as she called her DIL) "had her amnio during the pregnancy, I stayed up all night worrying. I just couldn't help thinking how awful—and how possible—it would be for them to make it all the way to that point and then have something else go wrong." How possible, indeed. She knew exactly how it felt.

She was wonderful—going out of her way to be helpful and, more than that, kind at a very stressful time. When we said good-bye, after three hours of crunching numbers and trading stories, we held hands for a long moment as she wished me well. "I’ll pray for you," she promised. I thanked her through tears.

The Only Way Out is Through

Numbness

The day of the PGS news, my mother asked what I was going to do that night. I answered, "Take my car to the shop. The 'Check Engine' light is on." (Oh, the glamorous child-free life!)

"You're taking this well," she said, skeptically.

Since then, I've heard several times, "I'm worried about you." How's a person supposed to respond? Don't worry, I'm fine? That's not true. I'll get by? That's true but not effective. Blunt though I'm afraid it was, I finally just told the truth: "I'm sorry that you're worrying, but those are your feelings, and I don't have control over them."

Someone else said, "How sad that this happened after you'd gotten your hopes up so high." It made me realize that, no, my hopes had not been high at all. This result was always a real possibility, not a surprise. But it was still a shock. No amount of mental preparation can ward off something that feels like a physical blow. The shock is physical too, like the temporary deafness that follows an explosion.


Anger

The anger wasn't about anything specific. It was certainly not about blame, just a wounded desire to be left alone, plus rage at any perceived trespass.

And there were plenty. Like last year, after my miscarriage, the whole world had to burst into full fucking bloom right after my awful news. Oh sure, go ahead and rub it in. Even better, let's add Easter—a holiday focused on new life, symbolized by EGGS—followed by Mother's Day.

Pretty, happy flowers!

I hate you.
(source)

Is it weird that I'm developing a special aversion to tulips? They're just so obnoxiously big and waxy, so uniformly perfect, like something assembled at the Happiness Factory.

Anyway, moving on. The anger comes and goes. The worst was this Saturday, when I was calmly driving to the grocery store and another driver did something pointlessly, casually rude. These days—being acutely aware that there's plenty of random pain to go around—I cannot stand people who purposely inflict more, however small the offense. I wanted to KILL. I suddenly, vividly wanted to ram this driver's car into a wall, reach in, wrap my hands around his neck, and squeeze until his eyeballs…

Of course, instead of ramming the car, I pulled over and called a friend who reminded me of some things that work for her when she's at wit's end. There were no real surprises, no magic. I knew all these strategies already (work it off with exercise, get outside, be around people even if you don't talk to them, watch a silly movie…). In fact, the comfort was in the familiarity.

It felt like waking up after a nightmare as a child, going to my parents' room, and hearing the litany: "Do you need to use the bathroom? Do you want a glass of water?" It was grounding. By the time we hung up, I felt fully awake.


Sadness

One night I went to an AA meeting. The speaker told a long story about how she'd abused her son while she was drinking and using. He was born addicted to methadone, and things went downhill from there (though she remembers little of it) until she got clean when he was 12. After her, other people spoke about their own parenting regrets and, in some cases, how close they and their children have become since those days.

Sitting there and listening was hard. I came close to walking out. You know: They can have kids they don't even want?! I can't deal with this right now! But yes, dealing with my own resentments—the one part of all this that I could control—was exactly what needed to happen. So I stayed put. Slowly, surrounded by these people who were facing their own difficult truths, my focus drifted inward toward something I'd been avoiding.

Underneath the armor of numbness and rage came an image of a box inside my chest. It was sturdy, with thick sides, sharp defensive corners that literally made my chest hurt sometimes, and a lid that was clenched firmly in place. But tentacles of my darkest, slimiest feelings were starting to curl out experimentally.

The time has come, I thought. OK, right here and now. Release the Kraken! Mentally and very deliberately, I removed the lid.

Whatever is here, let me feel it fully. The only way out is through.

* * * * * * * * * * * * * * * * * * * *

It took me two full days to cry any tears at all, and then I cried over someone else's story in a book. It was written by the woman whose husband killed five Amish girls and wounded five more, then killed himself, in a Pennsylvania schoolhouse in 2006.

She wrote about how a group of Amish people came to the funeral she and her children held for her husband—the shooter! For religious reasons, the Amish are opposed to having their photographs taken. Yet they not only came to console her for HER loss, but they quietly put themselves between her family and the hordes of reporters, giving her the gift of privacy by sacrificing their own. And they weren't just impartial neighbors. That line of people standing shoulder to shoulder included the parents of EVERY ONE of the girls her husband had killed.

It took my breath away. It still does. Although our situations have nothing in common, I know we share at least this one essential thing: like them, I still want love, not bitterness, to win.

A Blast to the Head

When the nurse called with the PGS results, I asked the questions I had written down beforehand, which were listed under two headings: "If any embryos are normal" and "If all are abnormal." Either way, I knew I'd probably be too stunned to remember my questions in the moment.

I scanned down to the second list. Deep breath. So … what were the exact abnormalities? (Combinations of fairly rare monosomies and trisomies, meaning that entire chromosomes were missing and/or duplicated.) What were the implications for the embryos? (Early first-trimester miscarriage, if they even implant at all.) What were the implications for future treatment? (My RE wasn't there to answer that last question, so we'll talk by phone on Monday.)

Future treatment. Is there any point? I don't want to make any grand pronouncements right now about being Done With TTC. But … am I done?? At some point, the relief of stopping must outweigh the pain of giving up.

I keep thinking of a song that talks about making peace with pain, because there's really no other choice. It mentions three levels of damage: a splinter in the hand, a thorn in the heart, and a shotgun to the head. My months of TI and IUIs were like splinters in the hand, constant but fairly minor aches. Miscarriage after IVF was a thorn in the heart. This latest news...

Sometimes a blast straight to the head can actually be a mercy, compared to death by a thousand splinters. You know? I'm thinking here of people I know online who've gotten such definitive diagnoses that all hope of conceiving their own genetic children was crushed in an instant.

But maybe they would still love to have even whatever small chance I still have.

It's just all so complicated.

* * * * * * * * * * * * * * * * * * * *

What's a person supposed to do after getting this kind of news?

I went outside and cleaned up the patio. It felt strangely similar to the last time I got awful news and reacted with, of all things, a crusade to pick up litter in the woods. What's going on here? Am I developing some sort of weird "grief cleaning" habit?

Then, while still cleaning, I started writing a journal / blog entry in my head, because words are how I try to process things. I watched myself doing it, trying to force meaning out of this mess, desperate to transform it into something good or at least something useful. Water and cleansing, renewal...

No. STOP. There's no meaning here, certainly not yet. There's just a person whose hands are continuing to operate automatically, while her head and heart are in fragments. Whatever may happen down the road, despite or because of the news that I just got, there is NO GOOD in the fact that these embryos will not survive.

And whatever may happen down the road, there are no shortcuts to get there, just cold water and dirt in this moment, then the next. So feel it, gritty between my fingers and splattering onto my toes. Feel it. It's a fucking mess. So feel it. That's the lesson for today.