NIAW Day 6: The Latest In Our Journey

Today wraps up this year's National Infertility Awareness Week. 

We said a little over a year ago that we had used our last embryo (Grace's sister - we knew both were girls before trying to implant either one thanks to genetic testing that was performed in the hopes of assuring a positive outcome and avoiding a miscarriage or issue like Grace had). Unfortunately Grace's sister didn't result in a pregnancy.

And then we evaluated what to do for a long time.

We grieved. We stalled out. We confronted our fears that we might have another situation like Grace's happen, and all the while, more and more restrictive abortion laws are being proposed and passed all over the country and certainly in Missouri. None of these laws take situations like Grace's into consideration. The only thought that made the thought of facing what we did with Grace all over again WORSE was the idea that we'd no longer have the option to pursue a peaceful experience for her. We stalled some more. We inquired each other, friends, family, trusted advisers, multiple doctors and our spirituality. We grieved some more too.

We looked into adoption with renewed interest but not renewed energy. We realized again there are many, many hurdles that people don't often talk about. Age limits (our combined age is above what many places will allow) and long time periods for biological parents to change minds, and the idea that if we're pursuing infertility treatments we can't concurrently try to adopt. And most of all we observed our exhaustion. We've already been through so much. We want to be parents to a living child, but we weren't sure we had it in us to go through a whole new type of roller coaster. Infertility and loss, for better or for worse, is the ride we already know. That's certainly not to say it can't take my breath away with it's sharp surprises, like crushing ultrasounds proving life we were excited about was now gone or non-viable, or something reminding me of being pregnant and prompting a funk. But I've come to at least feel familiar with all of that. Adoption presents scary scenarios that I'm not sure I'd recover emotionally from.

We decided to give IVF one more shot. One more round of to be able to say we'd given it our all, which is such an odd thing to say because we already had for four years when we decided that. I already am a mom, just not to a living child. No one would blame us for giving up and moving on, and many gently suggested just that. Just about everyone suggested we not put ourselves through IVF again, whether suggesting adoption, living childless, or in one spectacular offer of generosity that will bring gratitude and love to my heart until the day I die, the offer of donor embryos that would link our family to another through shared siblings. But we felt like we wanted to try one more time. The idea made me feel like vomiting, but I also felt restless with moving forward in any other direction.

The Iv in preparation for the egg retrieval

In November of 2017, we tried to do another egg retrieval. It was a hard time as that was Grace's loss anniversary. It was canceled because my body didn't respond as expected, and I found my laugh over how this area of life, which I know so well and find so sadly comforting, could still find ways to surprise me. Having a cycle canceled was a first.

We tried again in this winter. We were luckier this time, and were able to do egg retrieval. 15 eggs resulted in multiple embryos, which stunned and delighted us. It was our best egg retrieval yet, at clearly my oldest age.

And we tried to get pregnant again later in the winter with one of these embryos. It failed again. There is only a 12% chance of this. Yet again, we're hitting terribly low odds. I've been pregnant twice before. Why can't I get pregnant now?

My doctors (and we have three now, including one out of state) are scratching their heads. Over the past few months I have done painful tests. I have had my Fallopian Tubes removed as they are a suspected culprit. We have looked high and low for the reason and found next to nothing. We are running out of ideas. I have laughed when telling people that have told me 'it'll happen!' that no, no it won't. Not without Fallopian tubes. But who can blame people for their cheerful optimism, especially when they don't know all of the nuances of our story?

And now we're not sure what to do. Again. 

This is yet another example of what infertility looks like. We're not there yet, but we may not get to be parents. Ever. Sometimes that's what happens, because it's difficult, and stunningly expensive (only 15 states require infertility coverage), and sometimes our bodies just won't allow it. 

I hope we can get some answers and make the dream of being parents to a living child a reality, but there's just not telling right now. I hope you'll stick with us as we try to figure this out.

Announcement: Planned Parenthood's National Speaker Bureau

Hi friends. I'm sorry that I have been missing in action. I keep coming back to update Defending Grace, but it has already been a hell of a year.

I'm going to make a post about that later this week. I'll tell you what we've been up to, what's coming next, and so on. We're not light on updates, fortunately or unfortunately. It depends on which day you ask me.

But for today, I have an announcement that I am extremely proud of. I am have been selected to be a member of Planned Parenthood's inaugural National Speaker's Bureau, and additionally I am serving as the Vice President of the Leadership subcommittee. 

This is a huge validation of the work I am doing and want to do in the future: encouraging people to share their stories and dispel incorrect assumptions and stigma. I am also utterly thrilled to be part of a cohort of other women sharing their stories about how Planned Parenthood has helped provide the fundamental health care we need and deserve, without the intervention of politicians, and to spend time working with others like me and with perspectives like mine. I didn't ask for Grace's pregnancy to happen the way it did, and I don't believe that we made the wrong decision when we were presented with our worst nightmare. There is no going back in who I am now and why I am this way. My story is not up for interpretation or dispute: it is my LIFE. This reality creates some lonely times for me, and having my perspective and the validity of it be validated, honored and respected feels wonderful. Being able to do this for others, and to greet their experiences and stories with curiosity and learning is a gift I can give in return.

You can watch the announcement, and see many of my cohort members surrounding the speakers, here.

How the Holidays Feel, One Year Later

Tonight we are getting to see The 14th Annual Rough Shop Holiday Extravaganza: Night 2, which is one of my very favorite holiday things to do each year.

As I've mentioned before, I'm currently learning that the holidays are a tough time for grief because there are so many repeating events and themes that make it impossible to forget what you were doing the year before, and well, a year ago we were a mere few weeks out from ending our very wanted pregnancy at 22 weeks. My hormones alone were a disaster. Tonight's concert is setting up to be a particularly acute memory - it was the first time we saw some friends last year after losing Grace, having to share the news to some that didn't yet know. We're eating dinner at the same place with the same friend before the show. I didn't even realize how similar it was until just a few minutes ago. 

I'm glad to be in a generally more stable, calmer place this year. I'm sadder in general, and angrier (which I have mixed feelings on), but also more peaceful and noticeably more capable of feelings joy at this point too.

To anyone else reliving hard experiences and memories with every holiday decoration and Christmas song (I especially remember singing along to 'It's the Most Wonderful Time of the Year' last year while driving all over my therapist's parking lot in search of a spot, but adding expletives and revisions to the song), I validate you and am with you. I'm especially holding you close in thought and care when when you're searching for a quiet, private space to have a much needed cry, or wanting to blurt out to everyone that no, it Christmas ISN'T holly and jolly, damnit. I hope you're with me in feeling like you're having to hold it all together by a thread a little less than you've had to in the past, and it's ok if you don't, too (though it's easier for me to say that other people that to myself). Hopefully if you're feeling a little better, you're feeling less guilty about that than I am. That's the thing about grief - everyone experiences it, yet it still feels so isolating and confusing. I don't know why that is, but I can say for sure that you're not alone, and thanks to the love of my friends and family, I know I'm not either.

One Year Ago Today, We Said Goodbye To Grace Pearl

I’ve been dreading this day for a year. The first anniversary of saying goodbye to Grace Pearl.

A year ago today we arrived at a hospital in the pre-dawn hours of the morning and grimly walked into its labor and delivery ward. I had been warned that this might be especially hard emotionally by our doctors, but we opted for the hospital over Planned Parenthood because of my advanced stage of pregnancy: I could get more anesthesia there, would have more privacy, and as it turned out they recommended, an epidural. The doctors were the same at both places, so there was no advantage there. I was also grateful for the lack of protesters as I walked into the hospital; I had heard (and had seen) that people protest Planned Parenthood. I wondered what they’d say to me if they knew our story.

After changing into my gown and having IVs administers, I was given a pill to tuck into my cheek that would further the softening of my cervix. My doctors and nurses checked on us frequently advised that I get an epidural over full anesthesia for my safety (I agreed), and and assured us that they’d do their best to get hand and foot prints from Grace, and asked if we wanted to record her heartbeat. I had done so badly on my phone about a month prior using my home Doppler, so I declined this – I just didn’t think there was any way I could emotionally handle it. My home recording would be sufficient.

After a few hours it was time to go to the operating room and have the procedure done. I was so nervous going into it I started dry heaving and was sent down the room with a bucket in case I did throw up. Once we were in the room they had me sit on the edge of the operating table, hunched over while they administered the epidural, and I noticed a man sitting in the far corner. I asked if he was the doctor that would be doing the procedure (he was the only one we hadn’t met yet), which he confirmed he was, and right then the IV of relaxants, for lack of better term, started. I remember gushing out to the operating room that I had wanted my daughter, that we were doing this out of love. They promised again that they would cut her umbillical cord before doing anything else, and they were tender and compassionate.

I was in and out of consciousness for the procedure, which only took 15-20 minutes. I found myself wishing they had fully knocked me out, but also feeling grateful that I could be somewhat present for the end of Grace’s time with me. I had been advised to bring headphones and music, and I got through 4 songs of her playlist: I think they were “Born To Run”, “Sittin’ On The Dock of the Bay”, “Let’s Spend The Night Together” (which I always thought was a hilariously awkward choice, but also what we’d do for many nights of her newborn and baby life) and “Superstition”. I loved the idea of Grace and I listening to the same songs at the same time, and her heartbeat ceasing while in the warmth of my body, literally enveloped in love, hearing music tenderly chosen by her father to say goodbye.  

The next several hours were a blur of being freezing cold, being heaped with heated blanket, sleeping, and brief moments of doctors checking on me, pressing on my now empty abdomen. I felt around for Grace, and mourned for my now missing baby bump. It had never been big – we later learned because of the lack of amniotic fluid and how tightly curled up she was, but I was still acutely aware of what was gone. A chaplain came in and Jim had a long talk with her about God, Grace Pearl, and our decision while I slept. We were given hand and footprints (both which I realized looked just like Jim's which simultaneously filled and broke my heart), and a little bracelet Grace never got to wear that said "BABY".

It was hours later when I was discharged to go home, after I had crossed off all of the checkboxes that the hospital required. We left in much of the same way we’d arrived: the sun was again tucked away, and Jim and I quietly and awkwardly stepping through everyone else’s lives as they continued on with the laughs, smiles, plans and jokes while we wondering how the world hadn’t stopped after such a terrible blow. As we drove off into the dark, back down to a family of two, I wondered how we’d get through Thanksgiving the next day, and then the day after that, and again after that, without Grace.

One Year Ago Tonight, We Had a Dance Party With Grace to Say Goodbye

A year ago today, we had to figure out how to say goodbye to our much anticipated, already deeply loved unborn daughter. Our abortion due to her diagnosis of Bilateral Multicystic Kidney disease (which is fatal) was scheduled for the next day, the day before Thanksgiving.

Medically, I spent much of Tuesday recovering from the first medical procedure to prepare my body for the abortion. When you're 21 weeks pregnant, it's a two day procedure, and the first day you have seaweed sticks called laminarias placed in you cervix to start to dilate it for the dilation and evacuation scheduled the following day. In my shock, I had forgotten my doctor's advice to take 800 mg of Advil to prepare for it, and I remember feeling hesitant to do so once they offered it to me: I knew Advil wasn't good while pregnant and I still felt so protective of Grace. The procedure was excruciating: Jim held my hands and cried while I suffered through it, and I spent the remaining afternoon with a heating pad on my abdomen, laying on the couch. 

Around dinner time I felt well enough to go to the kitchen to eat some dinner with Jim, and asked him how he wanted to say goodbye to Grace: this was out last night with her. In memory of the beautiful way Jim suggested we spend this precious time with her, I have reposted his blog entry here: 

A Dance Party for Grace Pearl

Robin and I received the news of our daughter Grace Pearl's Multicystic Dysplastic Kidney Disease on Thursday, November 17 at approximately 1:45PM at the 21 week anatomy scan. The following days and nights were filled with grief, numbness and disbelief, all while looking for anything to distract or lighten our hearts. The previous six months had been spent thinking of what life was going to be like with our daughter, the endless opportunities and things we as parents were looking forward to sharing and experiencing with her. The reality now was that future together was going to be much shorter.

While finishing dinner at home on Tuesday, November 22, Robin (thankfully) brought up that this was our last night together with Grace. Robin gently asked if there anything I wanted to do or say to Grace before we said our final goodbye to her the next morning. The reality hit that instead of the lifetime of memories with Grace we anticipated we were getting a few more hours before the chance for new memories with her would be over. 

When faced with this reality the only thing that made sense for this situation was music. The love and appreciation of music has helped me more in life than anything else, making the great times more festive while being the greatest comforter during the hard times. So with our last few hours with Grace slipping away, the thing I wanted to do most with her was share music - something I had probably looked forward to doing with her more than anything else.  

I realized I wouldn't get the chance to spend an evening with Grace playing Public Enemy albums and explain how I learned more about American Black History from these records than I did in 17 years of public and private education. I wasn't getting the chance to spend a weekend afternoon playing her albums from my favorite early 90s Olympia, WA and Washington D.C. bands like Bikini Kill, Bratmobile and Slant 6. Bands who called out the patriarchy and challenged "liberated" men to do better while making some of the most exciting and memorable music that still sounds as important as it did 25+ years ago. I wasn't going to get the chance to go on a road trip with Grace and play Willie Nelson, Ornette Coleman, Stevie Wonder and John Fogerty albums for her, and tell her why I thought that there should be a "musical" Mt. Rushmore in America with their four faces on it celebrating these true American geniuses.

While it would've been easy (and earned) to put together a playlist that was filled with somber and serious music for these last hours together, I didn't want Grace's last hours to be about sadness,;we’d already spent the past four days fighting sadness. Instead of going for the Joy Division, Diamond Galas and Black Heart Procession records (which I figured I would be sharing with her during Grace's potentially morose teenage years), I wanted us three to celebrate the amazing time we did get to have with each other. The songs and artists chosen are ones that Robin and/or I loved and thought that our little girl would enjoy. The emphasis was songs that we hoped our little girl would gravitate to, simple pop songs that could be used as a foundation to discover her own musical taste and path in life. 

In rushing to put together this playlist that night I forgot a few songs that meant the world to me. Songs like Lulu “To Sir With Love”, Linda Ronstadt “You’re No Good” and The Ronettes “Be My Baby” were just a few of the major songs that were missed unfortunately.

The below are the songs we played on shuffle that evening. We danced for over an hour in our living room, late at night with only candles lighting our dance floor. Robin gently patted along to the rhythm on her baby bump and we replaced lyrics in several songs to be Grace Pearl. Some of the songs were key selections from our wedding, some we knew would be irresistible to a little girl, and lastly I wanted to make sure that she got to experience three songs with my favorite drummer all time Al Jackson Jr. behind the drums.

Robin had been told to bring headphones with her to the procedure the next day, for reasons we didn't really stop to think about while we fumbled through our shock and grief. She ended up not being put under the the procedure, and was advised to listen to music while Grace left us. She put on this playlist, and remembers listening to Born To Run, Superstitious, Let's Spend the Night Together and Sittin' on the Dock of the Bay. It brought both of us comfort to think that Grace's last moments were spent listening to music through her mother's body.

You can listen to the playlist here, and see the list of songs below:

Grace's Dance Party Playlist

The Beach Boys - God Only Knows

The Beatles - Twist And Shout

The Bee Gees - Stayin' Alive

Blondie - Atomic

Chuck Berry - You Never Can Tell

Sam Cooke - Nothing Can Change This Love

The Doobie Brothers - What A Fool Believes

Earth, Wind & Fire – September

Fleetwood Mac - Go Your Own Way

The Four Tops - I Can't Help Myself (Sugar Pie, Honey Bunch)

Marvin Gaye - Got To Give It Up, Part 1(Single Version)

Al Green - I'm Still In Love With You

Al Green - Let's Stay Together 

The Hollies - Bus Stop

Michael Jackson - Don't Stop 'Til You Get Enough (Single Version)

The Jackson 5 - ABC

KC & The Sunshine Band - Get Down Tonight (Single Version)

Kenny Loggins - Footloose

Little River Band - Lady

MFSB - T.S.O.P. (The Sound Of Philadelphia)

Olivia Newton-John/John Travolta - You're The One That I Want

The O'Jays - Love Train

Otis Redding - (Sittin' On) The Dock Of The Bay

The Rolling Stones - Let's Spend The Night Together

The Rolling Stones - Brown Sugar

Bruce Springsteen - Born To Run 

Warpaint - New Song

Stevie Wonder - I Was Made To Love Her

Stevie Wonder – Superstition

Neil Young – Harvest Moon

The Day After We Learned about Grace's Disease: Missouri's Abortion Consents and Informed Consent Packet

I wrote last week on the anniversary of learning that Grace had a life-ending disease, discussing how the day unfolded and felt along the way. It was an enormous blow and shock to the system. Little did I know the amount of insult was going to be added to our devastating injury in the form of the process the state of Missouri imposes on women and families that want or need to terminate pregnancies. 

I had been given hints about what was to come during our anatomy scan and subsequent discussion with our doctor, and then the follow up high-tech ultrasound to confirm Grace's diagnosis. There was talk about how we, at 20 weeks, 6 days pregnant, did not have a lot of time to make a decision about how to proceed. When we were called about scheduling time to come sign the consent forms, I was told we would have to try to sign them the next day because of the 72 hour waiting period, and that if we couldn't get that performed by by 21 weeks, 6 days (including the 72 hours), we'd have to go out of state to have the abortion. I was told we were lucky to be in St. Louis, home of the state's only abortion clinic (at Planned Parenthood). All of this stunned me and left me feeling misunderstood, unsupported and worst of all, judged. We had just learned our very wanted daughter would never get to live the life we'd dreamed of for her. Now we just wanted to get the necessary next steps over with as quickly as possible. The limitations and requirements felt hurtful and inappropriate to me, at a time when I was already deeply steeped in grief. I kept asking if there were exceptions for people like us: people that wanted their pregnancy but learned it would never result in a happy, healthy child, and that instead our child would die a painful, suffering death. To be informed over and over that there weren't exceptions told me that our lawmakers clearly hadn't thought the laws through well.  As I considered that unavoidable reality, I also considered how I would feel if I needed or wanted an abortion for other reasons, like an abusive partner, failed birth control and so on. I felt more and more like if the laws missed the mark on us, they'd missed the mark on so many other scenarios as well, and that therefore the requirements weren't appropriate for anyone.

As a privileged woman of reasonable means, learning about the ridiculous process required of us to do what was humane for our daughter was kind of like when you first learn that adults aren't always mature, kind or right after growing up depending on that as a fact. How much my privilege was still helping me in our terrible situation washed over me, leaving me heartbroken, indignant and shocked over and over. What about women in rural areas (100+ miles away) who needed the time and money to get to St. Louis or another state for the abortion? What about women who already had children and couldn't find childcare as soon as they needed to to sign the consents to meet the 72 hour waiting period and get the termination before time ran out? Anatomy scans happen between 18 and 22 weeks, so this isn't implausible in the least. We also were lucky to have jobs that accommodated our last minute scheduling needs, but many are not nearly as lucky. The Hyde Amendment prohibits federal funds from funding abortions, so it's exceedingly expensive at our stage of pregnancy ($1500 at Planned Parenthood, $8000 at a hospital, which is highly recommended at our stage of pregnancy because it is risky for me as the mother). Who can afford that at such short notice? I was blown away at learning this is how it really is to get an abortion in Missouri. 

That is how much I knew going into signing the actual consents to start the 72 hour clock and schedule our procedure. I had no idea how insulting the consents themselves would be. If the requirements I had encountered so far (geographical limitations, 72 hour waiting period, likely lack of insurance coverage, deadline that contradicted the recommended timeline of the anatomy scan guidelines per my doctor) were tone deaf to our situation, the consents and information we were given were downright callous and insulting.

When Jim and I arrived to sign the consents, we were met quickly by a doctor who, before reviewing the materials with us, warned us that she would have to guide us through some very difficult paperwork, but that it did no reflect how she, the doctor assigned to our case, felt about us at all. I quickly realized and confirmed that this was legally required paperwork, NOT medically required paperwork. I grew cautious and reserved, preparing myself for the worst. The state of Missouri delivered: we had to initial every line of this consent form 

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If you're reading this, feeling perhaps like it's appropriate, please consider the following: we were reeling from learning our intensely wanted daughter was going to die a painful, frightening death upon birth, if she made it that far. The care and support we encountered after learning that was being required to sign a consent saying I had seen an ultrasound and have heard a heartbeat. Imagine for a second how you'd feel in that situation. I was nearly 6 months pregnant. I had requested extra ultrasounds and had a home Doppler to check for Grace's heart beat every few days because I was so nervous after nearly 4 years of infertility and a prior miscarriage. This confirmation requirement was ridiculous, insulting and hurtful. Then I'm being told about Grace's anatomical and physiological features by a legal consent form instead of by my medical staff, as if I'm unaware. The doctor that just the day prior had given us an hour long ultrasound, detailing every feature. Would we allow this in our other medical decisions? Did they really think I needed education or reminding? I didn't need a government issued document to do this for me, especially when it included inaccurate information (more about that in a minute).

I couldn't believe I had to sign such an obviously biased and manipulative document (which highlighted all of the risks of having the abortion, but none of the higher risks of continuing the pregnancy, such as the very real risk to a woman's health), especially when my impending medical consents would cover everything necessary, and more importantly, were written using informed medical opinion and facts. The consent form lit me with indignation, outrage and defeat.

We had to take several breaks to process what we were having to sign. The layers of how openly against us our laws were kept washing over me. I have lived in Missouri all of my life. I have paid taxes here, voted in every election I can, volunteered here, defended it to people that want to call it backwards and ignorant. And here I was, a life-long citizen, being told I was less than a full human deserving of basic decency, bodily autonomy and incapable of making up my own mind about my pregnancy, because I had gotten pregnant. What a catch-22. I was deemed adult enough to be Grace's mother, but not to spare her an inevitable painful death. I wondered again if men would tolerate being treated this way. 

When we were done with the consents form, we were given the Informed Consent Packet:

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This is 36 glossy pages of tax-payer funded "education" on the fetus, carefully detailed (yet sometimes inaccurately) by gestational age before getting into the risks of abortion while ignoring the risks of continuing pregnancy (which are far greater than those associated with terminating a pregnancy (pages 13-15)). It inaccurately stated that fetuses start to feel pain at 22 weeks, while every doctor we talked to said 24-28. The packet is just as loaded with judgmental notes, starting with the first page where it notes: “The life of each human being begins at conception. Abortion will terminate the life of a separate, unique, living human being.” This is of great debate, so I was angered that it was stated as fact, with utter disregard for the medical community's findings and opinions in regards to this. I didn't like that political opinions were being fed to me in my time of needing a medical procedure. And I wondered: what were we supposed to do? Say the packet succeeded in making me feel guilty and I wanted to change my mind. What was I supposed to do with that feeling? Not end our pregnancy? The information in the packet wasn't going to make Grace's disease go away, and all it did was make me feel disregarded, insulted, judged and utterly misunderstood. It felt like kicking us when we were down.

I asked if we had to take the packet with us, and were told no. Jim asked how many people had taken it with them and the doctor said the last one was probably taken 3 months ago. That told me a lot about how firm people felt once they made the appointment, and how much of a difference this packet likely made in the minds of the women it was designed to affect.

I felt terrible for our doctor, clearly there to provide me with great medical care, being required to give us this inaccurate information, designed to manipulate me. She never failed to be supportive and compassionate with us throughout the entire process. 

We left the clinic to start our 72 hours of waiting, with the wound of our daughter's news still so new that it was increasing and spreading rather than being anywhere close to starting to heal. We added to it fury, disgust, helplessness and deep sadness at how we were treated by the state of Missouri, and how other women and families are treated. Do we not care about the psychological impact on our women over unborn fetuses? I never really got that concept so fully until then. 

Anyone close to me would tell you I'm a different person now than I was before we lost Grace. Having to choose to end our pregnancy was life changing and devastating, but being treated like ignorant, flippant, uninformed parents by the state of Missouri changed me just as much. It ignited an anger and sadness in me that has been just as difficult to cope with, and spurned me into advocacy and this website. It has not been fun to expose myself in this way, as we have grieved, and to sometimes meet condemnation for our choice. But that's how desperately and strongly I feel about our experience. I never want another family to have to go through such an awful process ever again. I'm just one person, but I'll do what I can to try to make it better for as long as I can. 

If our story filled you with the same feelings I've described, please consider sharing. The more people know about this reality, the closer we'll get to implementing real change. People need to know what the people they're voting for are doing, how badly written the laws are (and continue to be) and how it affects real families.