The importance of remembering

This past week has been a busy one. While most people spend Spring Break traveling to exotic locations, indulging in vices or catching up on sleep, I traveled with two undergraduate students to a scientific meeting to present our research. I've been attending this meeting for almost 9 years and though I loathe the preparation involved (proofing posters, rehearsing talks and figuring out ferry schedules), I always enjoy the interactions with colleagues, hearing new developments and catching up with friends. Add in the fact that this meeting is held at Friday Harbor Labs and the result is a very happy and refreshed Cristy.

Lodging at FHL

There was an unexpected benefit of being at the meeting. Though I was prepared for the questions that would come about my changing physique, what I wasn't expecting was what I would learn while talking with others that were on the other side of painful journeys. As I talked with graduate students who were finishing, postdocs in the middle of funding decisions and even faculty members who were there to support their students as well as share ideas, one message came across time and again: graduate school was a life-altering experience, with some painful moments. Yet to have not gone through that pain would have limited all of them in their develop for who they are today. Something that I completely agree with. But the difference from this time vs. others was hearing the similarities in the stories from the finishing grads with what stories I've seen in the ALI community. And even though the end goal is different, the general feelings of isolation, despair and bitterness are not.

I've noticed a trend in the community that's been disturbing me more as of late. A trend to sacrifice everything in the pursuit of "bringing home baby." Too often, I watch bloggers who write about difficulties in life, be they marriage, family or even severe cases of believing they deserve the pain of infertility and loss, throw all care and concern aside once they receive the coveted BFP. Granted, I'm incredibly happy for each and every single one of them. But what worries me is that there's this assumption that somehow having a baby will make everything right in the world.

Marriage on the rocks? Family is abusive or neglectful? Feeling like you are utterly worthless as a human being and that there is no purpose in life? A baby will fix it all! After all, babies are sweet, quiet, adorable angels that will ALWAYS love you and would never-ever be a source of stress.

The other trend is that in the process of embracing this, there's an abandonment of what has been learned along the way. Yes, I know I'm going to get hell for this one, but seeing bloggers post 2WW symptoms before a BFP (never mind that many of those same symptoms could easily be pre-AF symptoms) or start issuing platitudes like "just relax!" or "eat pineapple!" all with the intention of "educating" those still in the trenches on how exactly to achieve pregnancy makes me wonder what they are thinking. After all, do platitudes and "advice" that demoralizes hurt any less coming from an ALIer?

The conversations I had during the conference with colleagues, both those still in the throws of graduate school, those who are still hoop-jumping and even those who remember all too well the experience was about how valuable the pain of the experience was. Granted, no one wishes a dead-end project, lack of funding or unemployment on anyone, but without going through the experience none of us would have learned how to recognize these situations and either avoid going down these rabbit-holes or how to manage them better.

The same can be said with infertility and loss. Because of this experience, I learned how to identify doctors I could work with. I learned to defend myself and my family, despite it being uncomfortable for others. I made those difficult decisions to end cycles of abuse so that my children can grow up free from patterns that are so destructive. And I learned to love myself, all the broken parts and flaws. Don't get me wrong: I would never wish the pain of infertility and loss on anyone. But, because of infertility, I am a better person. I am more aware of my actions and my role in the world. And, most importantly, I'm no longer afraid of being an outcast or being unaccepted. Because of infertility, I can finally be comfortable being me. And I cannot begin to express how proud I am of myself and Grey to making the decisions we did along the way.

My point, though one that will be unpopular, is that it's important to remember what you've learned from this journey and not assume that a baby will heal you. Too often, I've seen relationships dissolve a few months after baby is born. I've watched children grow up in broken homes with parents who refuse to put aside their bitterness for their children. But I've also seen couples who've ended their fertility journey without a baby go on to lead full lives. I've witnessed love and joy that could only have come from embracing the pain, fixing what could be fixed and accepting what could not be.

Is this an easy road? No, far from it. But like graduate school, those who are most successful in life rarely take the easy road. Instead they take the road that gets them to where they want to be. They take the road that will lead to their happy ending.

The magical cure

Humans are interesting creatures. Fighting for individuality while cautious to never venture beyond the norm. As I age, the more fascinated I find myself becoming with how people act and what drives them to say the things they do. Why certain patterns are followed, despite evidence that suggests harm or discourse.

I've been thinking more and more about human behavior recently as Grey and I have begun sharing our news with others. So far, we've only been sharing with people who are on a need-to-know basis, either to update them about this recent news in our journey or for matters of employment, current as well as in the future. In general, the news has been received very well (though always with a moment of shock when the news of two instead of one is learned), but there's been something else that's been coming about that, though I was prepared for, I still find to be upsetting and a frustration. The feeling that somehow many are now viewing us as "cured" of infertility.

Jessah and Lisa both had posts recently that relate directly to this topic (if you haven't read them, please do as they really set the stage for what I'm trying to get at). Jessah's post is one that talks intimately about how isolating infertility and RPL are, with those we were once close to pulling away and excluding the ALIer. Every word of her post rang true, as I've also watched people I thought I could trust become silent or issue platitudes over the last 3 yrs. Lisa's post follows up with a problem stemming from this problem, where in a moment of excitement someone who clearly doesn't understand is carelessly sharing her news with the world. She talks about how frustrating it is to be in this situation, as she is incredibly mindful of how difficult the news of her pregnancy will be for those who are still in the trenches and even those who are healing from their infertility/loss scars. She ends by reflecting on her defensiveness to the comments of her boss. An exercise I've been trying to expand on too.

Tertia once wrote about how hard it is to be supportive of a friend or loved one who is living with infertility and loss. A post I've referred back to several times since we started this journey. But the frustration and sadness I've dealt with over the past few years regarding the absence of support and help as Grey and I have tried to navigate our way through treatments, loss and continual failure is something that's been difficult to swallow. In the end, we both made the decision that so many make while going through this process of keeping our sharing down to the basics and learning not to expect much from others. Mainly because they didn't know what to do, but also because we knew we scared them.

So you can begin to imagine what the response has been when people learn of our good news. All the sudden, those who were distant are actively trying to enter our lives, wanting to share in the excitement. Yet too often, this excitement is prefaced with people wanting to ignore the past, ignoring the scars that are still very visible. Worse yet are those who are quick to offer the "see, you just needed to do X" or "it all worked out for the best." Don't even get me started on the "G_d's will/plan" explanations.

Grey and I have been doing the best we can to counter a lot of this. Whenever we talk about this pregnancy, we've made sure to talk openly not only about our journey, but also about the friends we have who are either still in the trenches or have resolved in other ways. We've talked about how isolating all of this has been and how special these babies are. And this is normally when the discomfort flows back in. When I talk about my admiration for those who chose to live as a family of 2 instead of destroying themselves with unending treatment cycles, or those who have braved the adoption process and are parenting while including the birth parents or even those who are still on the treatment path, I always find those moments are met with body language that makes it clear they wish I would stop.

The thing is, I can't stop. I refuse to be one of those women who turns their back on this community solely because it's easier for loved ones. I refuse to perpetuate the myth that pregnancy will magically cure one of their infertility, making it all a bad dream. So I know, despite what others around me would like to see otherwise, that I need to keep talking and reaching out. But I also have realized that to do this, I need to better understand what exactly I'm dealing with.

Lori's post today, where she interviews Pamela Mahoney Tsigdinos, helped me begin to address what I've been witnessing over the past couple of weeks. If you haven't read it, please go do so. During the interview, there is a part where Pamela addresses why she, like so many of us, doesn't like to be pitied or to be demeaned.

Society doesn’t know what to do with “infertiles.” We make people – parents in particular – uncomfortable because they don’t want to consider a childless life. They view our lives as a rejection of theirs. Readers tell me the biggest challenge they face in moving on and finding a new normal is hearing from others “not to give up” on parenthood.  It took me a long time to realize that after mourning my losses and setting aside one set of dreams, I hadn’t give up. I embraced something else.

Pamela's response immediately reminded me of an encountered Grey and I had had over the summer with his aunt who had lived with infertility for 8 yrs prior to miraculously conceiving her son. Following her son's wedding, we briefly spoke, during which time she told me to "relax" and "it will eventually happen." The thing that struck me the most, other than to hear such comments from someone who believed she would never have children, was how she said it. As if she had somehow drunk the Kool-Aid and was passing on doctrine that others had beaten into her. It hasn't been until recently that I've realized that embracing this logic, even after suffering in silence for so many years, was a form of self-preservation. That to not do so would have been even more torturous as her community, her family wouldn't allow it.

So, once again I'm learning. I'm learning not only how to deliver our news to others but also how to educate in the process. I'm learning how to counter the myth that we are cured with the reality that we are still very much infertile. And I'm learning what it is that frightens people, why I make them uncomfortable and nervous as we talk about all of this.

Please offer support

So many in this community know first hand the emotions and pain that comes with a failed cycle. Yet we also know there's no way to truly steal one's self from the shock and pain that comes from this news.

Please take a moment today to visit Daryl and give her some support. Her first round of IVF w/PGS has been an incredibly trying one, with her and Hubs dealing with bad news after bad news. Still, there was hope that after all of that there would be a good outcome. My heart is broken to hear otherwise.

12 weeks: an NT scan and changing doctors

** Warning: the following post is about the Sugar Beats and the progression of this pregnancy. If in anyway this post will be a trigger or a source of pain, skip it. I'm quite serious. There will be other posts about other topics, so don't brave your way through.

Today I am 13 weeks pregnant. A milestone I truly believed I would never see. Physically I don't look much different from how I normally look, but both Grey and I have noticed that there's a firmness around my middle that previously didn't exist. Slowly but surely, this pregnancy is becoming more real to both of us, even though the reality is something I still fail to fully grasp.

On Monday, Grey and I took the afternoon off work to go in for our intregrated screen, which consisted of an NT scan followed by an appointment with the genetic counselor to talk about genetic testing. I been very nervous for this screen as my OB/GYN has really not helped with assuring me everything was okay.

Litte bit of background on the clinic my HMO would prefer me to go to: my insurance provider is more than optimal for people who have zero medical issues and are generally a bit clueless about their health. For someone who's been through IVF, though, they are far from optimal. Case in point: every visit I've had so far, the standard practice is to make the husband/partner/baby-daddy/overly-protective family member waiting in the waiting room while the nurse takes the expectant mother in the back to get vitals. The reason this is done is so that the expectant mother can have a few minutes alone with the nurse to bring up any issues she feels uncomfortable discussing when the other party is present. This is fine for a 16-yr-old with an absent baby-daddy or overly-protective family member. For a couple who has been through the wringer to finally become pregnant, not so good. Needless to say, the nurses have been very cold with me when it became evident that I wasn't saying a word without Grey in the room. Despite that, they've treated him no better than a sperm donor. One of many things we've been very unhappy with them about.

Anyway, because my HMO is so low-scale, they lack the facilities that are necessary in order to provide genetic counseling and to perform a NT scan. So off to the university we went, with strict orders that all of this was a one-time deal and that we were not to get too comfortable.

Thing is, we did anyway. The technician that performed the ultrasound had an amazing bedside manner, walking us through what images she was taking and taking a moment to point out the different things we were seeing. Both Beats were wide-awake, bouncing around, stretching and even waving at us. One particular moment where Beat B was kicking their sibling had all of us sighing and shaking our heads. But overall, the experience was a very surreal one.

The ultrasound tech sent us down to the cafeteria for 30 mins to allow the radiologist to go over the results and get them upstairs to the genetic counselor. Over a hospital cafeteria meal, Grey and I talked about how much we both missed being part of the university medical care system. Granted, there were some disastrous moments with the ER, but otherwise our care as students had always been exceptional.

Our meeting with the genetic counselor went incredibly well. We learned that both Beats had very thin NTs, indicating that their risk for various trisomies, chromosomal abnormalities and heart defects was greatly reduced. Still, after some discussion, they offered to do cell free fetal DNA testing if we wanted it. In addition, do to my family history of developmental delay (two cousins, one of which we suspect to actually be FAS), it was decided that I should also be tested for Fragile X.

Sidenote: for anyone who is considering genetic testing, I HIGHLY recommend you read up on cell free DNA testing. 
A good place to start is with the following articles (http://www.wired.com/wiredscience/2012/12/ff-prenatal-testing/all/) and (http://www.ivillage.com/new-cell-free-dna-prenatal-test-carries-fewer-risks-pregnancy/6-a-512772)

The company that introduced the first of these tests (called MaterniT21 Plus) is Sequenom: (http://www.sequenomcmm.com/Home/Health-Care-Professionals/Trisomy-21/About-the-Test)

Since this introduction last spring, there are new versions that have gone on the market, such as the following: 
Panorama: (http://www.panoramatest.com/)
Harmony: (http://www.ariosadx.com/about-the-science/what-is-cfDNA-testing/)

Talk with your OB/GYN about these options (I don't know if midwives have access to this information) and make sure you talk with a genetic counselor before pursuing these tests.

Our appointment at the university drove home the reality that I could no longer wait on finding a new doctor. Luckily, I had already put in for a referral to see a MFM at the university, but immediately after the appointment I started contacting the resources Grey had found through his connections (one of the benefits of working in the biological sciences) to get their input and advice. What came back time and again was the validation that we were not getting the care we needed for this pregnancy from our current OB/GYN and that it was time to jump ship.

So on Thursday morning, when we sat down with the MFM and the care team at the university, we made the decision to be brutally honest with this team and to treat the appointment as an audition.

It took less than 10 minutes for them to win both Grey and me over.

When my name was called, they immediately grabbed Grey and made him comfortable in the exam room while they recorded my weight. All vitals were completed in front of him and any questions either of us had were answered. Then we were introduced to Nurse Jennifer, who has 30 yrs of experience delivering twins. She greeted us both warmly and immediately put us both at ease with her authority of the situation as well as openness to answer questions. Following this introduction, we had a 40 minute discussion with the MFM where we talked about all the different aspects of this pregnancy that needed to be considered, from preventing preterm delivery, monitoring and managing hypertension and diabetes and even about getting me in to see a nutritionist. Following this, we had a long discussion about APA syndrome and Lovenox (I need to be reassessed following the birth of the Beats) and things to consider with managing that. Most importantly, though, everyone we talked to wasn't overwhelmed with the situation. They treated us with respect but offered direction for care options and managing this pregnancy. I swear I almost hugged all of them.

So, after 4 weeks of feeling completely unheard and minimized, I finally feel like we've found a care team. Grey and I need to verify that this group can be our primary OB/GYN, but once that's done we are officially giving the finger to my HMO and telling them to pay out (which I know they will be far from happy about). This decision has calmed me and given me some confidence that I may actually be able to carry the Beats to as close to term as possible.

In short: this is our good news for the week. Another item to cross off the shitty-situation list. Now if I could find a resolution for a couple more issues, I'd be over the moon.

Their song

It's no secret that 2 week waits are hard. For anyone that is on the TTC journey, this time is met with both anticipation and dread. For anyone living with infertility and loss, there's an extra level of anxiety around this period, as the anticipation is fueled with a silent prayer of "please let this result in a baby to hold." 

Back in January, I found myself yet again in the dreaded 2 week wait. This time was even more final than the others, as these were our last 2 embryos from the only fresh IVF cycle I ever will goes through. A lot was riding on this period and I was spending a lot of time fighting off the negative-thinking/symptom watching with distraction. It was during this period, as I was beginning my daily commute between Tacoma and Seattle, that I frequently heard The Illumineer's latest release "Stubborn Love" playing on the radio. A haunting melody that would be stuck with me during the hours I was working and seeking distraction from unwanted thoughts.

She'll lie and steal and cheat,
And beg you from her knees
Make you thinks she means it this time

As the days passed, I tired to figure out what it was about this song that was sticking with me. After all, in moments where grief and despair threatened to take over, I would find this song playing and willing me not to surrender. Like most who have been on this road, I initially associated this as a sign from our two embryos, thinking it was their way of communicating with me and telling me not to give up. But as time went on, it became apparent the message was more than that.

She'll tear a hole in you, the one you can't repair
But I still love her, I don't really care 

It's no secret that fertility treatments are nightmarish experiences. Between the drugs, the waiting, the unknowns, it's enough to drive a person mad. Add in the fact that success is not a given, with most having to endure multiple rounds, and it's not terribly surprising that one's mental and emotional state can rapidly deteriorate. Still, hope of a positive outcome keeps us coming back. The promise of holding our children and putting all of this behind gives us the courage to try, even in the face of so much pain.

Reflecting back on my youth, I remember being naive about pain. A lot of the time, the solutions to problems were simple, requiring a limited amount of time and energy to come to resolution.

When we were young,
Oh oh, we did enough
When it got cold,
Ooh ooh, we bundled up
I can't be told,
Ah ah it can't be done

With infertility, though, I learned the true nature of pain. What it truly meant to lose and the madness of having no easy solution. For a long time, I struggled with my anger and bitterness regarding my lot. "Why me? Why this?" were questions I frequently asked, not only myself, but those around me and even the universe. Instead of getting answers, though, silence was often the response. Silence that only exacerbated the pain.

And then came my losses. The babies that were dearly wanted that were gone too soon. The pain and the grief were debilitating, leaving me praying for the numbness would set in and that I could retreat into my cocoon.

It's better to feel pain, than nothing at all
The opposite of love's indifference
So pay attention now,
I'm standing on your porch screaming out
And I won't leave until you come downstairs

In the end, though, I learned that running the pain only extended it. That denying its existence didn't erase it. That it required me to face it, embrace it. It was then and only then that I truly began to heal. 

Still the urge to run and hide exists. The temptation to ignore all that's happened and pretend it was a bad dream, allowing us to be "normal" is one that pulls on Grey and I daily. After all, it's what society pushes us to do and the discomfort we encounter talk about our losses makes it clear that many would prefer we didn't.

And I don't blame ya dear
For running like you did, all these years
I would do the same, your best believe
And the highway signs say we're close,
But I don't read those things anymore
I never trusted my own eyes

Listening to the radio, one thing became clear: as painful as all of this has been, there have been gains. I learned that there is a strength that exists in all of us that so few know how to tap. That to tap it requires one to face greatest fears and to refuse to simply except their lot. That, too often, with the easy road comes misery and unhappiness. That when we conform to what others believe we should be or act in ways that others deem acceptable, more often than not we are no longer being true to ourselves. Hence it's important to follow our heart, picking the road that is best for us. To ignore the warning signs and to take a chance.

So keep your head up, keep your love
Keep your head up, my love
Keep your head up, my love
Keep your head up, keep your love

In the end, this song wasn't simply a sign from the embryos that were implanting. This song was a reminder of all that had happened. A reminder of the ones we had lost along the way. And it was a call, during this period of uncertainty and anxiety to not give up. A reminder to have hope for a life that was worth living.

This is their song. 

Confronting anger

Well, it’s been a month. A month without writing; a month away from this community. A month to focus instead on real life and all the chaos that comes with it. In truth, there have been some good things about taking time away; a step back. But there has been a downside of not writing and processing all that passes through my head. Someone once told me that time heals all wounds. In truth, this method does work. For some cases, it only exacerbates the situation.

The past month, has been a trying one, with both Grey and I surrounded by people who have either caused us harm or tried to take advantage of us. I've dealt with selfish beasts who have not only damaged my car when they were suppose to be repairing it but then drug their feet in fixing the issue. They then proceeded to become pissed when insurance had to be brought in once again to remedy the issue, claiming that the necessary body work was over-priced and unfounded. Thankfully, the issue was resolved, but not without me having to pull a trump card I swore I would never pull and accusing one of them of trying to harm my unborn children.

We also directly confronted mouth-breathers who had previously patronized Grey and me, assuring us they knew how to do various forms on construction. These all-knowing individuals are now responsible for a roof leaking that has caused damage through 2 floors of our condo building and has resulted in so much structural damage that the association now has grounds to pursue legal action in order to pay the bills. These same individuals have passed around blame, maintaing their innocence and accusing Grey and me of being bullies as we've asked for repairs to be completed. To date, we've been forced to vacate over half our home and we came close to spending a few nights in a motel (which we would have had to pay for) because of chemical treatments that needed to be applied to eradicate mold. 

And then there have been the “professional” idiots who are also OB/GYNs, who clearly are overwhelmed by an IVF twin pregnancy with a mother who has been diagnosed with APA syndrome, but who continue to insist that they completely have this situation under control. These same doctors have told me during a phone consultation where I was concerned about 3 days of cramping that there was a 50% chance I was miscarrying and then proceeded to become offended when I pointed out following an ultrasound that they had scared me needlessly. Thank the Universe for Mo for talking me out of my hysteria.

To top all of this off came the news that I may be unemployed starting in July. Due to the sequester, granting agencies have been forced to scale back on the amount of funding that is being awarded to young investigators and towards fellowships for aspiring scientists. To date, of the 5 agencies I've applied to for funding, one has said "no" because I was too far out from graduation and the other simply because of the proposal. Sure, there's still three opportunities that we're waiting on, but the rejections have made it all the more clear that I may be SOL. Add in the fact that my current institution informed me that I'm not on the teaching schedule for the upcoming 2013-2014 academic year because they assumed that I would be in Boston regardless, and I find myself potentially jobless for the first time since I was 14 yrs. old.

Needless to say, Saturday was a hard day. During a moment where I felt completely encroached upon by one of the contractors who doesn't respect boundaries, I succumb to tears and the panic that followed. It was not a pretty sight.

The truth is, despite finally finding myself pregnant and the babies being healthy, I'm terrified of the future. Grey and I are currently getting zero help with any of these situations and we're finding it hard to find balance when it seems like so many are trying to take advantage of us. In addition, we're learning that asking for help is more often than not met with a shrug or a blank stare. And I'm learning once again that what does get people moving is to put the pleading aside and to order people into action, a response that is frustrating to execute on so many levels.

All of this has had me reflecting back on the events from a month ago. How everything got so hot so fast and out of control. Before anyone jumps down my throat, I'm not revisiting my fuck-up. I own that one and the harm I caused in a moment of panic and fear. But I do feel that I need to say my piece about the nastiness that went around. The hatred and evil comments that were directed at well-respected bloggers who have done nothing but reached out to others and offer support.

Mo's last post on Saturday caught me by surprise. I knew she had been feeling disconnected for awhile and was hurting from all the negative backlash. But to see it in writing that she was closing up shop and exiting the community during a time that would crush any human being made me question the human condition. As children, we hear about following the "Golden rule" and about how important it is to love one another. Thankfully, with those I follow, I see that more times then not. But when I don't, it always makes me wonder about why these people live. What's the point of living when your life is about living to attack?

I know with this post, I'm opening myself up to so much criticism and potential pity. None of which I want or feel I deserve. The truth is, though, as a 12 week pregnant woman who is carrying twins, I know there are many that see me as no longer being relevant. That somehow being lucky enough to have the right combination of medications, oversight and knowledgable doctors as well as just having the stars align and now being in this state, I've somehow had the past 3 years of grief, failure and blood that it took to get here magically disappear. That somehow I now longer get it, that my ALI membership card is now revoked and I am the enemy. 

But here's another truth I've also learned: anyone can be more than their infertility/losses. It may mean confronting a number of ugly truths that exist about our species and confronting the fact that we will ultimately be the source of our own destruction, but it also means that one must confront their anger and frustration and put their faith in those who will work towards a better tomorrow.

So, that's what I'm doing. I'm not turning a blind eye to the hatred and betrayal I've witnessed first hand. But I am also working hard to confront my anger with all of this and make conscious decisions to work towards something better. Part of this will still require me to humble myself in certain moments, but I also will no longer make apologies to people who actively abuse and bully me or anyone I love. At the minimum, I owe that much to my children.