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.

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.

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

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. 

Music is a big part of my life, and some songs popped up a lot around the grief and melancholy of Grace's loss. Roy Kasten played a Vandaveer song on his KDHX show "Feel Like Going Home" the day after the election that I still play over and over some days. An old Coldplay song popped back into my life. I listened a Willie Nelson song I played too a lot after our miscarriage. I would listen to this assortment of songs on flights, rainy walks, or while writing letters to Grace. Some others get added in from time to time, but these are the ones that stuck the most and fit my melancholy the best. 

I've been listening to it a lot lately, and am sharing it here. A year ago now, and again this week, the odds are these are the things I was and am listening to. 

Getting Through Grace's Loss

A playlist featuring Vandaveer, Otis Redding, Coldplay, and others

Jim and I didn't even realize that's not what we were getting at first when the scan started. There was no black background in our ultrasound, but maybe that was normal? I knew babies sometimes didn't cooperate in ultrasounds and you had to go back a few weeks later to confirm sex, for instance.  It took our technician saying our daughter didn't have a lot of amniotic fluid (and thus the lack of black background) and that her kidneys were large to clue us in that something was wrong. I turned on my side to hopefully get Grace to move to a better position for a better shot while the technician talked to our doctor. That didn't help though, and after another attempt at scanning her, the technician sent us to see our doctor with the comment 'I know this isn't what you want to hear.' 

I wasn't even sure. I had heard of low amniotic fluid before... what did it mean exactly? Maybe this could be treatable and okay? On the walk to the exam room to talk to my doctor, I quickly texted two of my best friends which triggered an information gathering session from them while I did my own quick Google and saw 80-90% of the time that there is low amniotic fluid in the second trimester, it's fatal. It still didn't sink in, but I grew more and more nervous. Surely this wouldn't happen to us again after having had a miscarriage in the past and 4 years of infertility and having done IVF with a preimplementation genetic screened embryo... right? We had been told after 10 weeks that there was only a 1% chance of something being wrong. Surely this was treatable and just a complication.

I didn't find ease in introducing my OB to Jim and having her tell him to call her by her first name. She touched my knee tenderly as she explained our daughter had enlarged kidneys full of fluid filled cysts, no amniotic fluid, and was curled up so tightly already from the lack of fluid they couldn't see her feet in the ultrasound. She wanted to send us upstairs for a high tech ultrasound to make sure of her diagnosis. Jim silently cried and people kept poking their heads into the room to whisper things to my doctor and one finally produced a post it note with appointment information for the high tech ultrasound for an hour later. I asked what we could do and she said you can't just transplant more amniotic fluid in - that the kidneys would just stop it again... and that there wasn't much we could do. At that second, I felt like I was placed in a hellish rollercoaster and the lap bar came down locking me into place. This was my nightmare. And it was really happening. To us. There was no escape hatch... I just was going to have to ride it out. I still am. 

It's a bit of a blur from there. I remember walking out the side exit to avoid seeing pregnant women in the waiting room and to spare them my grim, shallow breathing and tears. I remember walking by the break room on the way out and seeing a sheet cake to celebrate someone's birthday, which surely I would normally joke about stealing a piece from any other time. The fact that we were being ushered out a side door, walking through the personal lives of our medical professionals made it all the more real while simultaneously increasing my disbelief. We got outside and I remember it being an unusually warm, sunny day for mid-November in Missouri. A woman was sitting on a bench smoking and I wanted to scream at her to get lost and give us privacy, which of course made no sense. I called my parents who I had excitedly texted on the way to the appointment. My mom excitedly asked "how was it!?" and I choked out 'not good', and I will never forget my mom dropping the phone on the ground and sobbing loudly in the background. My dad picked it up and did one of the things he does best: he said he was coming to be with us as support and managed to get location and directions, leaving immediately. 

We nibbled at some lunch, and I marveled at how many pregnant women were around. I expected plenty at a hospital, but not the number of doctors that were pregnant too. They were everywhere. I updated a Facebook infertility group I'm a part of with what had happened, and that we were waiting for a follow up ultrasound to confirm the diagnosis, and that we didn't think our pregnancy would get to continue. The outpouring of love, support and heartsickness from my peers both brought me additional tears of gratitude and an additional sadness: because I'd have less in common with most of them soon... only a few had had this situation happen to their pregnancies. For most, finally becoming pregnant and clearing the first trimester meant they finally got their take home baby. I felt very alone. They scooped me up from their corners of the earth nonetheless, even though my situation possibly made them more nervous about their own pregnancies and brought about sad memories for them. 

My dad arrived and hugged us both very tightly, and we went in for the confirmation ultrasound. I remember the tech being warm and thorough, with the second, more high-tech ultrasound being over an hour long. She tenderly showed us all of Grace's anatomy, including her healthy brain and spine, and finally found her feet. I remember feeling like if so much was perfectly ok with her, why did her kidneys have to end her life? Jim and my dad sat nearby in the dark room, doing what we always do in times of deep distress: Jim silently cataloging information and my dad asking smart questions, making friendly conversation, and dropping a joke in for levity whenever anywhere near appropriate. 

The doctor came in and reviewed the findings and asked what my OB had told me. I repeated back that our daughter's kidneys were full of fluid cysts, were huge and that she had no amniotic fluid, and without that her lungs would never develop. The doctor said my OB was right, and that she had Bilateral Multicystic Dysplastic Kidney Disease. Because it affected both kidneys, there was no treatment. 

The doctor explained that there were a few options (terminate the pregnancy or continue to carry her) and if we did the latter, 2 potential outcomes: 1) Grace would be stillborn after having been crushed to death by the weight of my body. A slow death growing more difficult for her by the day as she developed more and her ability to feel pain developed early in the third trimester (around 24-28 weeks, and we were at 21 weeks). 2) She would be born and then immediately, upon losing her connection to the placenta, the 'wheels would come off'. Without functioning lungs, she would die within minutes or be put on life support which would just prolong the inevitable: to get the necessary kidney transplant, babies need to be around 22 lb, and none thrive enough without working lungs or kidneys to make it that far. 

My dad asked, very directly, what the odds of survival were for Grace, should we continue to carry the pregnancy. The doctor replied, none. That if she made it, our daughter would be the first to survive this situation. 

Our doctor left to give us time to process this. I cried and cried and alternated between hugging my dad and Jim, both whom were crying as well. Jim and I looked at each and both said we had to terminate - that carrying her to let her experience such pain was cruel to her. My dad, raised Catholic, said it was up to us, but he thought we were doing the right thing, which brought me comfort.

The doctor came back in and asked if we had needed to go home to decide but advised us that we had little time being 20 weeks, 6 days pregnant, which was my first clue that we were facing legal hurdles that didn't have exceptions for our situation. When we said we had decided to terminate the pregnancy, she said she hadn't wanted to sway our decision, but since we had decided, she would share that my own risk would have gone up 7 times if I had continued the pregnancy. 

We were told that we would receive a call to schedule filling out consent forms and scheduling the procedure. I checked my phone to a text from my friend Laura (who I had texted earlier and sent on the google hunt) asking what had happened, saying her heart was in her throat. I had to text 'we have to terminate' for the first time, which still brings tears to my eyes today, both in my sadness at what our best option was and how generously my friends walked into the dark situation with us. I called my oldest friend on the way to my parents' (where we went next) and she cried with me.

When we got back to my parents' house my mom clung to me and stroked my hair and cheeks. Jim called his parents and told them, as well as a nun who is an old mentor and friend of his after going to a Jesuit college and having her as a transformative teacher. All supported us and offered comfort and love in the coming days. I got the call to plan signing the consents and got my second peek into the jungle of cruel red tape awaiting us: "you need to get in here tomorrow to sign these because you're running out of time. You legally can't do it after 21 weeks 6 days and you have to wait 72 hours after signing the consents." And "insurance almost never covers this because of the Hyde Amendment" and "no, there are no exceptions because of a fetal anomaly". Even with all of these comments, I still could have never prepared myself for how awful the coming days would be... the hurt and insult the legal process would impose on us on top of the emotional and physical pain saying goodbye to our daughter would bring.

I would spend the next few six days struggling to find comfort with friends, trying to figure out how to swallow Thanksgiving, which was right around the corner, updating our doctors and friends, and crying more than I ever have in my life. I hugged and clung to Jim so much I remember wishing I could open up his chest cavity and crawl in to just be carried there. We officially named Grace Pearl, the former after a friend in my infertility community whose daughter Grace has always given us a lot of hope, because my mom loved and suggested the name and because we thought what we were doing was grace in an unusual but still as real as ever form. Pearl was suggested by our niece and we wanted to honor her and her sweet enthusiasm for having a new cousin.

I figured out ways to march through time and then did those things. Friends and family helped tremendously. In the middle of that was signing utterly disrespectful consents, being given a factually inaccurate and emotionally manipulative packet on our daughter's development, and being made to wait 72 unnecessary hours to prolong our suffering. We just wanted to get it over with now that we knew Grace would never survive. It was hard enough without that, and I'm not sure I'll ever lose my sadness and outrage at what we as a collective nation have allowed (or in some cases encouraged) to happen to our families and women, and the direction our elected officials have run with their law-making powers. It's impossible to discuss our experience strictly in terms of our loss, and to tell it just as a private medical decision and loss our family endured because our laws imposed more on us. Our lawmakers decided to dictate how the experience should go in non-practical. judgmental and hurtful ways, and their impact is not theoretical. That component has to be part of my story today, on a day when I should just be remembering how sad I am to have learned a year ago that Grace would never get to live and learn to walk and get dressed up in silly Halloween costumes and learn about Santa, because the government couldn't just leave us alone and let it be that. I'm as sick of talking about it as you likely are hearing about it... but it's how it really happened and continues to happen, and it really, sincerely, made it so much worse than it already was. 

As for now... I have really struggled with what to do this year, as we have approached and now landed on the last of the first anniversaries. The first time I'm hitting the anniversary of Grace's anatomy scan and learning she had a life-ending disease and that our dreams weren't actually finally coming true. I have dreaded this day since it happened last year and the dread has been especially acute since the seasons have changed. 

I'm still deciding what to do, and I don't even know fully how I feel. I need to stop expecting some grand plan that will satisfy me to arrive like some epiphany. And it's far from all bad; sometimes I'm cheerful and upbeat thanks to a naturally buoyant personality, and other times I wish I could cry, and when I finally do I'm shocked at how much more I want and need to. I don't always know how I feel or what to do with myself. Mostly I miss Grace and wish she was here, around 8 months old, and feel acutely everything she never got to do.

Losing Grace wasn't something that happened in a day and was over - the act of learning about her disease and then having the termination was 6 long days, not to speak of everything since. I know everyone wouldn't do what we did, but I hope we can all agree she was real to us, and mattered. I'd love it if you'd walk in this hard week with me both with your empathy and compassion, and if you feel up for it, I'd love to hear about anything our story and upcoming Thanksgiving prompts you to do. That's what I'll be doing - practicing acts of kindness and gratitude. I don't have a structure for this, just whenever I have a chance to do so. If you would like to do the same in honor of Grace and her memory, and how important she was to us even though she was here all too briefly, I'd love it if you shared them with me. It can be pictures of your kids, telling me something unique you really love about them. A random act of kindness for a stranger. Light a candle. Call an old friend you haven't talked to in too long and reconnecting. Tell us how Grace has changed YOUR life over the past year. It may sound cheesy but I think it'd warm my heart. I like the idea of Grace prompting, well, acts of Grace.

Thank you all for walking this hard year with me, and for keeping us in your hearts this coming week.

Since we lost Grace, I have read books, participated in both online and in person support groups, taken time off work, done acupuncture, meditated, traveled, and have become an advocate to help improve the experiences for others like us (since no one plans for this in their pregnancy, it really is adding insult to injury to be subjected to callous legal requirements). I have exercised more, taken more walks, listened to more music, written letters to Grace, helped other friends unfortunately and heartbreakingly go through the same experience, bonded with many people that have had the same experiences and drawn comfort from them (and hopefully provided some comfort back). I have been in more therapy including a psychiatrist and two therapists than any other time in my life, and I am not new to therapy.

Eleven month have passed by. And nonetheless, it is harder than ever right now. 

I wish I knew what was going on, but I'm no expert, and even experts tell me grief is unpredictable and nebulous; that it never really totally leaves, it hits when you least expect it, it's sometimes gentle and other times takes your breath away, and it appears that all you can do is hold your breath and try to accept it and hold on until it's better. That sounds brutal for anyone, and its uniquely hard for someone that has worked under the illusion that with enough hard work and effort, you can overcome anything. Grief is reminding me that I don't control a thing.

I started lightening up on the advocacy work both out of need because it's so hard, and because of other circumstances in my life (if you can believe it, this year has had a jaw dropping number of stressful and sad events not even related to Grace). Likely, tucking that away a bit has given me the space to let the grief come in. But it feels so much more like grief has arrived blasting the door straight off its hinges. I suspect the seasons changing and the influx of holiday decorations is a decent part of it; our fall just finally arrived, and not only do I already contend with SAD, but I have so many memories of being nervously excited about being pregnant, FINALLY pregnant, last fall. Meeting trick or treators and wondering what we'd dress Grace up as this year, when she was 6 months old. We said goodbye to her the day before Thanksgiving, and Thanksgiving, despite being surrounded by people that love us and that we love back, and was brutal exercise in exhaustion, sadness, shock and numbness. Grace's termination anniversary is on Thanksgiving this year. Later, after we lost her, I remember walking through stores and seeing Christmas decorations all over and desperately searching for my enjoyment of the holidays in the hopes that this experience wouldn't ruin my future enjoyment of them. Any time I saw a pregnant woman or baby, I wanted to go up and say my baby had died. It doesn't even make sense to me. It felt insulting and unfair that life went on, and that Grace wasn't with me anymore. 

Right now, my grief and sadness it is coming on so strongly and so acutely that I'm doing something I have never really done before and trying not to fight it anymore. I just can't do it. I wish I could and until I went through this myself I didn't really get how something like this changed someone so much, and trying to envision it made me shudder and change my thinking to a more comfortable topic. But I don't get to do that. This actually happened to me. And having gone through this year with all of its frustrations, disappointments, sadness, and losses (including friendships and weakened relationships), to then arrive at 11 months out thinking that relief should be replacing the grief only to have the grief be more profound than ever... the only thing I can think of to say is it's just too much. And we are facing some potentially very, very hard news regarding our own possibilities towards having children any day now. Even if we do try again, I can't even fathom a world where I enjoy pregnancy after all of this. I just know too much about what can go wrong. 

I'm not quite sure why I'm sharing this here. In the past I've asked you to consider our story, share it, learn more about your state's and our country's laws, call your representatives and vote to help protect our rights when it comes to situations like Grace, but this time I have no call to action. I've been utterly overwhelmed by your love and support thus far. To my friends and family that have accepted and embraced me through this: and it truly makes a difference. I wanted to share where I am right now, why I am so grateful for your support and for any advocacy you have done on our behalf and all other families like ours, and to say it still matters. Where I am now is evidence of it. There is no replacing Grace; having another child, if we're ever that lucky, will not "fix" this and I'm learning now that it doesn't just go away. I don't feel better thanks to the passage of time or all of the effort I've put in to do so. Different, and able to smile more, but not better. So if you've read this, thank you for doing so. I feel like it's important for me to acknowledge it to honor Grace and how important she was to us, and to honor other grieving people out there.

If this had been in effect when we learned about Grace's disease last November, we would not have been able to terminate the pregnancy, thus meaning I would have had to continue carrying her until she was either crushed to death by the pressure of my body without amniotic fluid to cushion her, or I would have delivered her to immediate pain and suffering and death. No child with the bilateral type of her disease (which she had) has survived, according to the many doctors we have discussed this with. There is no medical intervention for this. My own risk would have gone up 7 times.

If you'd like to help fight against this (and I'd be grateful if you would!), here is a script you can use for calling your representatives. Currently, the vote is scheduled for Tuesday, October 3rd.

• Step 1: Find your representative here.
• Step 2: Call them up! This might sound daunting but I can promise you that dialing is the hardest part. A staff member (not the representative) will answer. You need to say you are a constituent from [say your zip code] and would like to discuss House Bill 36, and request that your representative vote no on it.
• Step 3: Tell them why! When I call (I've already called about this a few times), I tell them a brief version of my own story. I tell them I know over 500 other women that have had to make the same heartbreaking choice I have and that this will never end for families - many diseases that are fatal for the unborn are not discovered into far further into the pregnancy than 20 weeks. I tell them the bill is based on erroneous information that pain is felt at 20 weeks, when 7 doctors have told me it's more like 24-28 weeks. Here are a few other points:
  • This is another instance of politicians inserting themselves in the most private and personal medical decisions best left between a woman, her doctor, and her family.
  • More than 99% of abortions occur before 21 weeks. Those that occur after 20 weeks are often cases of very much wanted pregnancies that have gone horribly wrong (like mine).
  • This is not about protecting pregnant women or babies. If it were, how would they answer my situation (and the 1% of women that terminate after 21 weeks where their health suffers and their child will die a very painful death if they cannot terminate? This flies in the face of the stated intent of the bill). This is a political move, not one designed with health in mind, otherwise, it would not have medical falsehoods as the premise.
  • Here is a link with lots of other information on why these bills are so harmful: Link
• Step 4: Thank the staff member for their time and for listening.

That's it! If you'd prefer not to call and to instead fax a message in, Resistbot is an AMAZING tool for this where you can fax from your phone or Facebook messenger! So easy!

I, and all of the women that still have this devastating situation still to come in their lives (your daughters, cousins, sisters, nieces, wives...) all thank you. Even the ones that think they wouldn't: trust me, you wouldn't want to not have the choice to do what you think is best when you face this. You deserve the right to make the choice, even if you'd make a different one that we did.

Since we started sharing Grace's story, we have been overwhelmed by people asking how they can help. Obviously sharing our story helps, but we have something more concrete, which I personally love: I am thrilled when I get a specific action that can help a cause that is important to me. And at this moment in my life, nothing is more important to me than being able to make the right medical decisions for myself and my very, very loved family. 

Tomorrow (Thursday, September 28th) I will be at The Royale with NARAL ProChoice Missouri discussing my family's story, our journey and frustrations becoming advocates, and what everyone that hears it and asks 'how can I help?' can do, which is help with the bipartisan ballot initiative: Clean MO. 

What’s Clean MO? Some of the initiatives include:

• Require that legislative records be open to the public
• Require politicians to wait two years before becoming lobbyists
• Eliminate almost all lobbyist gifts in the General Assembly
• Lower campaign contribution limits for state legislative candidates
• Ensure that neither political party is given an unfair advantage when new maps are drawn after the next census

If this is something that you feel would be good for Missouri (again, it's bipartisan! It's designed to make our democracy work more fairly!) please come out to The Royale tomorrow (Thursday, 6:00PM). I will be talking about why I think this is important  and how all of you can help in getting Clean MO on the ballot next year. No matter what the cause that's closest to your heart is, this ballot initiative helps make sure laws are more fair and our politicians truly represent us. 

You can learn more about Clean MO here and more about the event (and RSVP!) here:

NARAL Missouri for Clean: Special Guest Robin Utz

Join NARAL Pro-Choice Missouri on Thursday, September 28th at the Royale for a happy hour to meet the people leading the CLEAN Missouri ballot initiative...

I have friends and family that run the gamut across belief systems, including very conservative, Catholic family to deeply liberal, atheist friends and every single person has chosen to show us love and support to whatever extent they find possible. It's been an amazing gift in our lives as we navigate this. It's a unique sort of grief that comes with being presented with such a heartbreaking reality and decision for a very wanted child, and then additionally having that decision be so condemned by much of society. I have been called a murderer more than once. Thankfully, never by anyone whose opinion I value. 

I quickly become overwhelmed by gratitude for our friends and family when I pause for even a second to consider their generosity of love and spirit, but today I want to put a little spotlight on my friend Dana, who I have known for around 12 years. She has been a great friend to me, from saving my cat's life to being one of two people (along with our friend Beth) that introduced me to Jim. 

Dana was halfway around the world on her honeymoon with her husband Ben when we learned about Grace's fatal fetal diagnosis, and took the time to send us a note expressing her condolences and support when she learned. Little did any of us know she would come home shortly thereafter and learn she was pregnant herself. It put us in a predictably awkward situation with me having just ended a pregnancy I had chased for nearly 4 years, and Dana in the impossible situation of trying to figure out how to tell her grieving friend she was pregnant. She was kind, considerate, and has made sure I feel remembered during her entire pregnancy. It has made a world of difference to me.

When I testified during Governor Greitens's 20k/day special session, I had to cancel dinner plans with Dana and a few friends to make the logistics work. Despite being around 30 weeks pregnant, working full time and facing the last minute nature of testifying (I found out at noon that I was leaving around 7 am the next morning), Dana dropped everything to join me. She drove with me 2.5 each way and sat in the Senate room all day with no breaks for the opportunity to support me and share her own perspective: that watching what the state of Missouri had done to Jim and me after we made what we believe so strongly to be a loving, humane decision to end our pregnancy had cost Dana comfort, security and joy in her own pregnancy. She realized it could happen to anyone, saw how deeply it affected us, and felt compelled to say something to protect other families. Her testimony was powerful, vulnerable and impossible to ignore. 

I have always been and will continue to be grateful for Dana's friendship: at a time when it undeniably might have been more comfortable for her to distance herself from my circumstances in order to feel more secure in her own (especially as a first time mother), she pulled me closer. Dana put her own comfort and safety on the line and stepped out of her comfort zone to speak up for me, Grace, herself and every other woman in Missouri. I am in awe of her strength and her ability to not only own her power, but to also realize and capitalize on the absolutely true fact that anyone can advocate and make a difference: we all have a story, and Dana sharing hers truly made a difference. I can't wait for her baby to be born (any day now!) and to see what kind of mom she is, but no matter how she approaches it, that is one lucky baby to have such an amazing mom.

It's been a little while. My lack of posting here doesn't mean I haven't been active in other arenas though... I've just needed a little break from writing. It's so weird going through this.  A year ago I was a month pregnant and nervous and excited and hopeful that it was FINALLY our time. This year... I've had that pregnancy make it to 22 weeks, terminated for medical reasons, then gone on this wild ride of advocacy. I hardly know who I am anymore. I don't know what to do or how to do it or when to take a break or even how to take it. But I hope you'll keep coming along with me while I figure it out. Hopefully I'll do it with some grace and humor.

For the past few months, I have:

• Been filmed for a documentary with Jim that will be coming out down the line.
• Saw Lady Parts Justice League's hilarious and powerful Vagical Mystery Tour comedy and outreach show. I almost felt like I was cheating having a good time and laughing there after having tearfully recounted our story just the day before, but well, that's being a fully developed human being right? 
• I went to New York City and met up with some truly tremendous women that deeply, completely supported us after losing Grace, even when many hadn't met me in person before. Their ability to love, support and show compassion from all around the country has been a great learning experience for me.

• While I was there I also met up with another highly recommended Reproductive Endocrinologist just to get more eyes on our situation and case and was told we're just really unlucky. I almost had to laugh at that. Sigh.
• I went to D.C. to see my beloved oldest friend and her family, and spent a day advocating with Erika Christensen and Dr. Julie Bindeman. We met with Representative Barbara Lee, Representative Louise Slaughter, Representative Diana DeGuette's offices, as well as Senator Joseph Manchin's. We were in the Hart Senate Building while the first health care vote of that week was going on, and the protests that disabled individuals from around the country were conducting were stunningly powerful. It felt like such a privilege to be in the room while it was happening. 

I have some shifts in how I want to approach advocacy coming up, but I'm also trying to take a breath for a bit while I figure out the best approach. I feel so overwhelmed by the hurdles we are facing in just getting people to hear and understand this perspective on abortion, and I am having to learn a lot about self care along the way. Others that are fighting, how do you do it? 

We have explored adoption in our quest to have a child. Adoption is a beautiful, and it is ALSO not nearly as easy as a lot people think it is. There is no "just adopt".

My friend Samantha (Sam) Blanco shared her story with me recently and it brought me heartache and chills. Please read, consider, learn and share. 

It’s been five years since my husband and I first started trying to have a child. We had a plan from the beginning: we’d have three children, the first two would be biological children, and then we’d adopt a third. But if we didn’t get pregnant within a year, we would go ahead and start the adoption process. What’s laughable now is not that we had this clear plan and thought it would work, but that we thought any plan we made would be easy.

After two years of trying to conceive, we finally started the adoption process.  (At this point, we hadn’t even looked into fertility treatments; it wasn’t until later that we would learn we would not be able to conceive without significant, expensive medical intervention). We carefully selected an adoption agency, went to a two-day training for adoptive parents, and became part of a network of other people trying to adopt. We were optimistic and excited. We waited for two more years. In that time period, our lives were busy while my husband worked on a huge project for work and I pursued my PhD. I imagined that I would graduate and our lives would slow down, then magically a birth mother would call us at the perfect time.  Then on January 31 of this year, we got a mass e-mail from our agency that stated they were declaring Chapter 7 bankruptcy and were closing effective immediately. With that e-mail, thousands of dollars, two years of our time, and our hope disappeared into thin air. People often ask us if we’ll ever get our money back (which is highly unlikely), but the loss of time and trust has been far more devastating.

My husband and I made some immediate decisions. I took a semester off of school. We spent more time together, focusing on helping each other get through each day. We were fortunate to have a family member who works in adoption who told us, “You need to mourn this.” So we mourned. Slowly life has returned to normal, except now we’re back to square one.

Suddenly, we’re in a place we never expected to be. We’re both 35. We’re both uncertain what path we want to pursue to parenthood. We’re uncertain if the decisions we made a few years ago are still the right decisions. And we’re processing the emotions and experiences of the past five years while still trying to move forward.

In recent weeks, I’ve found myself reflecting a lot on our experience. I have a greater understanding of the impact of infertility than I ever could have had as the woman making decisions about parenthood several years ago. Here are a few of the things I’ve learned:

Your family and friends may not be ready for your decision. Once we decided to adopt, we spent a lot of time explaining the process to our families and friends. Some of our loved ones were very excited. One of my favorite memories is telling my husband’s cousin, and seeing her immediate joy. Others asked many questions, which we were happy to answer. And while I understood it came from a place of love, some of our loved ones frequently questioned our decision. Don’t you want to at least try IVF? What if you change your mind and want to try it but you’re too old? Are you sure you’ve made this a priority, what if you took some time off work and reduced your stress? Often, these comments were expressions of their own fears, not responses to our excitement about starting a family. These questions also made me feel as if choosing to adopt was somehow equivalent to giving up.

You and your spouse will likely have very different experiences with infertility. There was a point in time where I felt anger and envy towards my husband because our friends and family focused so much of their attention on me when it came to infertility, as if it were something only I was experiencing. Often, we would walk into a party and infertility would be the first thing I was asked about, and I’d look over to see my husband cracking up with friends about the latest episode of whatever show they were watching.  My husband, on the other hand, was feeling his own levels of insecurity about infertility that often he would keep from me.  

When you can’t get pregnant, every option available to you is expensive and invasive. This seems to be the one thing that very few people understand about infertility. Fertility treatments are expensive. Adoption is expensive. Fertility treatments are physically invasive. Adoption and foster care are personally invasive, with requirements to provide great amounts of financial and health information, along with several home visits. Any path a person chooses toward parenthood is complex and carefully thought out. There is not “Why don’t you just do IVF or adopt?” There is no “just.” It’s a long and difficult path.

Feelings of loss related to infertility aren’t what I expected. Not being able to have a biological child was difficult emotionally, but it was not a tragedy in my life. I had always envisioned myself adopting a child, so it was not a big shift for me. I was completely blindsided by the adoption agency declaring bankruptcy. After years of feeling confident in my decisions about becoming a parent, I was suddenly plunged into a depression.  There is no script for explaining to people the loss I was feeling as a result of the agency going bankrupt: a loss of money, time, and most importantly, my trust in systems built for adoption. When you have a baby biologically, you don’t have to second-guess the way you have a child. But with the agency bankruptcy, my husband and I were second-guessing every single decision we had made in our quest to be parents.  

We haven’t decided what we’ll do next. We know so much more than we did when we started this process, but that knowledge hasn’t necessarily better prepared us for making a decision. We’ve been very open about this with our friends and families from the beginning, and value that openness. But one of the negative aspects of that openness is that we are getting a ton of unasked for advice, advice that comes from a place of love and concern, but assumes that they have an answer for us. And perhaps that’s the biggest lesson I’ve learned, that there simply is no right answer. My husband and I will be parents one day, but there’s no one right way for us to get there.

Sam Blanco lives in Brooklyn with her husband and two dogs.

What you can do RIGHT NOW

Call and email your state senator and tell them to gavel out of this expensive, unnecessary, and politically motivated special session. Thank them for working hard on a compromise, and say what the House did is inexcusable. Ask them to please not allow the governor's dark money and political ambitions get in the way of democracy. 

More action items will come when the senate reconvenes. 

What you can do NEXT WEEK (but buy your tickets right now - it will sell out!)

Lizz Winstead, co creator of the Daily Show, is coming to The Blueberry Hill Duck Room in St. Louis next Thursday (June 29) with her Lady Parts Justice League Vagical Mystery Tour. You can find St. Louis event information here (and a list of all shows here). I highly encourage you to go for 2 reasons:

1) Lizz and her fellow comedians are SERIOUSLY funny. I got to see Lizz with Sarah Silverman a year ago and she knocked my socks off.

2) The show also features discussions with local providers and advocates, and provides ideas for ways you can get involved and make a difference looking at the skills you already have. 

I interviewed Lizz to learn more about the show, what they are trying to achieve, her perspective on reproductive rights, and the one thing that everyone can do to make a difference right now. (This content has been modified to be condensed and for clarity):

Tell me about one of the best things about the Vagical Mystery Tour

Lizz: The comedy show brings in a group of people (150-500 people) to have a great time and also have a meaningful talk back about opportunities available to them. We want people to be able to say this was a great experience, and then you’re giving me opportunity to do what I can, also with the time that I have, to make a difference. Some of these things take 20 minutes, an hour, etc.

I have a whole team of people who are excellent comedians, and they talk about life from these different lenses. We have black, brown, trans, white and gay comedians, and people can come to this comedy show and hear about their own lives. 

At the end of each show we have a conversation with someone from a clinic and from an activist group that supports reproductive rights and justice so people can sign up right then and there and learn what they need. We’ve been able to access handymen, painters, designers, landscapers, etc.

These are little things, and the providers are buried with work and care that sometimes they can’t even tell what they need. We have been able to go in, take a tour of the clinic and ask questions and then help.

What is your best advice for someone that wants to make a difference in the arena of reproductive rights?

Lizz: (laughing) Aside from not making your zoo the anti-abortion zoo… First and foremost, when you connect with your local clinic and activists, you can really get information on what’s going on in your state. You want to ask yourself "who is my go to person for information"? Get connected with them.  

While we all talk about all these laws encroaching on reproductive rights, people still need to get care and provide care, and so we need to ask how are we as citizens making sure that the caregivers and those that need abortion are being supported, and not being stigmatized? 

So for example some of the things you can do are escorting patients. Sign up for escort service where you are committing to helping patients get into care without judgment. A bonus is this also means being part of the community that stands with the clinics. You are showing politicians and your community that you are a face and a voice that thinks that clinics are important and are doing a great job.

Another thing you can do is getting together with your like minded friends who are also going "what can we do?" over and over and panicking, and meeting with them so you can open a bottle of wine and send postcards to share your love and support. These organizations and clinics always get so much hate mail, so getting your love and support really matters.

Think about what can you do to lengthen the life of your clinic. Can you throw a fundraiser? Have a mixer at your house where people can get to know your provider or your abortion fund. Treat them like the treasures that they are.

Finding out what the clinics and advocates' needs are. Get together with friends, let a clinic vet you so they know you’re a trusted source, and find out what they need. Often people don’t look at their own lives and skill sets and see how they can help out. If you’re a great graphic designer, or if you’re good at landscaping, you can help! If you’re a good baker, you could bring cupcakes to the clinic 4 times a year to show your appreciation. Maybe help an advocate with their website that needs a new logo. Offer to paint a clinic's fence or do some gardening to maintain the clinic so when patients come in they feel like it’s a nice space and feel welcome, and the people that work there walk in and feel great that their community supports them. Translators especially are needed for refugee cities where Arabic or Spanish are helpful for a patient care advocate. It's nice to have someone on call that can help. These all kinds of things that might be in your personal wheelhouse.

Finally, get on an email list to work with your local advocates and clinics so they can reach out to you whenever you need something and then you can network. The thing is that a lot of times, a clinic that provides abortion services in a community... lawn services or gutter cleaning services won’t come because the clinic provides abortion care. Simple things other business can get just by looking in the yellow pages aren't available to clinics that provide abortions because the providers don’t believe in what the clinic does, or they’ll be targeted by anti-choice people at their business.

I am loving this because it has an avenue for everyone. If there was ONE thing everyone could do, what would it be? 

If you’re too busy, and care about this issue,  I ask every single person to stop using the term pro-life. They are anti-abortion. I have seen clinics that have been firebombed and vandalized. I have friends who are targeted. Patients who have gotten death threats for having abortions*. We cannot cede the term pro-life because they aren’t pro-life. Physicians that are friends of mine - their best friends have been murdered. This is being done by anti-abortion activists. It’s only fair to call them that. Language matters.

 *Robin Note: This is a HUGE reason more women don't share their stories. Trust me. I know a lot of women who have been in my shoes but they don't share publicly. 

Has your approach to LPJL and the Vagical Mystery Tour changed since Trump took office and there has been a bigger proliferation of falsehoods? 

The interesting thing about it is I’m glad we started this organization long before Trump took office. So many people in so many state legislatures were already passing these laws before Trump was in the picture. Oregon is the only state that hasn’t proposed crappy legislation. Really. it's every other state: red states, blue states, purple states. But in the wake of Donald Trump, it’s just gotten worse because the federal legislation and the Supreme Court are very scary.

We need people to understand and pay attention to state legislatures and demand their birth control and abortion care because we are owed them. We must demand from men and women both that they recognize reproductive rights are part of our human rights. 

I know you were raised Catholic, which believes abortion is a sin and murder. How was that transition to where you are now?

I definitely was. The bottom line is I realized I can’t believe in a God that is cruel and retaliatory. I know when I wake up every day that I am doing my best to be a good person. And there is not one word about abortion in the bible. Science says something else different from Catholicism too. 

And the real fact is Catholics have abortions at very high rates, and they use birth control. 

The Vagical Mystery Tour is Thursday, June 29th at Blueberry Hill Duck Room. It starts at 7:30 pm, and you can buy tickets here.

As I mentioned in my last post, I testified in opposition of two bills, and I put my testimonials up on that post. But I didn't go into how it felt, which I think is just as important and honestly even more interesting than what I said. 

The first bill I testified on was SB-6, which would remove St. Louis's ruling that organizations and companies cannot discriminate women for things like using contraception, being pregnant or getting an abortion based on moral or religious beliefs, which was sponsored by Springfield, MO State senator Bob Dixon. I think this is a sticky one, to be honest. I do respect that there are religions that do not believe in abortion, but I also believe that being pro-life means being far more than anti-abortion. This bill, in my opinion, exposes some of these holes in the argument:

Jim and me on the day of our egg retrieval as part of IVF. Should we discriminated against for doing this when there is no other way for us to have a biological child?

• While I respect that some people don't believe in some things due to religion, sometimes it brings a lot of harm to others, and I find that, personally, to be fairly contradictory to the messages that religion often proposes. I think it's an area that begs for further discussion, compassion towards both sides, and a compromise. This bill doesn't suggest that and instead feels hasty and I don't think passing a bill that allows for such broad discrimination is the right approach. 
• If a woman can be discriminated against for using contraception, being pregnant, using assisted reproductive technologies (like IVF) and having an abortion, what state of existence CAN she occupy and be free from discrimination? Abstinence? Outside of child-bearing age? It's far too restrictive. It makes me feel helpless and furious. 
• Where are the men in this? Pregnancy, the need for birth control, procedures like IVF and abortions are all created by two people, but these laws are aimed at women. 
• One of our biggest supporters has been a nun of 50+ years. Catholicism is one of the religions that strongly condemns abortion and is spurring this bill, but between this nun and some of both of our friends and families who have shown us immense compassion and support despite being uncomfortable with abortion in general (and who am I to judge? To be raised in a faith since you were born that feels abortion is always wrong is not something to be brushed aside, in my opinion), it shows that there isn't even a unified approach towards abortion from people that practice the religions that are supporting this bill. Yet how some feel should be codified into law? Instead of removing St. Louis's exception from these laws, the laws should be corrected.

I think there are far smarter ways to show respect for religious opposition to abortion. More on that in a future post, but I want to make it very clear that I do not think think that those that oppose abortion for religious reasons are to be condemned, judged or dismissed. Respect has to go both ways.

Senator Robert Onder

Then there was SB-1, which tries to circumvent Judge Howard Sachs' injunction based on on the Whole Women's Health v Hellerstedt ruling in the Supreme Court, noting that based on that ruling, Missouri's one abortion facility in the entire state constituted an unconstitutional burden on women seeking this reproductive health treatment, in addition to overly lofty requirements for abortion-providing facilities. This one was harder for me. I felt anxious going into it because it is sponsored by Robert Onder, who coincidentally used to be my allergist. I can't believe some of the audacious things he's done as a senator though, and this is coming from someone who had a perfectly pleasant opinion of him before he started doing these things. Proposing that we rename the St. Louis Zoo the "Midwest Abortion Sanctuary City Zoological Park"? Pushing this special session at the expense of $20,000 a day when it's not an emergency? And worst of all, proposing legislation that is medically inaccurate using his medical degree as validity to do so (the bill asserts a fetus feels pain at 22 weeks, when all of my specialists noted it was 24-28)? I find Onder's doing so to be so insincere, so overtly political over sensible, and so dangerous that it makes me furious, nervous and highly uncomfortable. This is not someone I would ever trust to be my doctor again, and I can't imagine anyone I know who would want their doctor to use personal beliefs to dictate their care over medical and science-based facts. Yet he's proposing laws that will effect far more than his allergy patients. It's truly scary.

Specific to the bill itself, I explained that while Jim and I were lucky to be in St. Louis and close to excellent medical care and the sole abortion provider in the state at the time (Planned Parenthood), what if we happened to live in Joplin and had prior children we needed to find childcare for, and/of travel hundreds of miles for our care. As I explained how our immense privilege and how it helped us I grew more frustrated. While the senators were kindly looking at me, I knew it wouldn't change their votes. And that was the worst part of all. 

I am driving 2.5 hours each way, taking the day off work, paying for my own gas and meals and writing testimonials late into the night to share Grace's story. I think it's important, and one of the things I have heard while telling it over the past 7 months is that a lot of people had never considered this side of abortion - that people sometimes do it because it's the most loving, humane thing we can do while we suffer immense heartbreak at learning our wanted pregnancies won't turn into happy, healthy babies. But these elected officials are so tied up in politics, so tied up in Right For Life and other anti-abortion donors... they don't care enough to vote for my family and others like mine. They might feel badly for me, but not enough to acknowledge that this will happen to families again, and to demand smarter, more balanced, inclusive, compromising bills. Having that hit me again (this certainly wasn't the first time) combined with reliving Grace's story and how sad I am to not have her now made me start to cry. 

I live in the state with the third most restrictive reproductive rights, and they are still pushing forward these bills. They want MORE restrictions. Abortion is protected by Roe v Wade and 7 out of 10 people believe it should be legal. Yet I have to testify to keep these rights, and it's still not enough - sometimes these bills advance and become law. It's easy to see why people call this a war on women - when is it enough? When abortion is illegal and women die in back alleys and babies like Grace suffer needlessly? Is that truly what people want?

It's not that I'm absolute - I believe in moderate restrictions around abortion that takes all parties into consideration and has appropriate exceptions, support for those that need it should they choose not to end a pregnancy, and compromises between the two sides. Surely I'm not the only one. But even my desires for compromise feel helpless in the face of Missouri's Conservative politicians, especially as they are spurred on by Governor Greitens. When will we get politicians that care more about their constituents, including more than the unborn (and including them too, in the case of Grace who would suffer under these laws) more than playing politics? 

It's my very sincere hope that this changes some day. We ALL deserve better, no matter where you stand on this issue, and if you believe you still are 100% against abortion after hearing my story, I hope you remember your daughter, niece, cousin, daughter in law, wife, etc. could have this happen to her at any time. Men, this could happen to any woman in your life that is of reproductive age. Don't you want laws to include them? I wonder how Dr. Onder would feel if something like this happened to one of his 6 children when they get older. Simply wishing for nothing to go wrong and avoiding thinking about the reality Jim and I experienced isn't enough. 

With others that testified against the Senate Bills that would restrict reproductive rights in Jefferson City, June 13, 2017, including my amazing friend Dana (far right). 

How I feel about that is another post for another time, but I always want to ask what people that say we made the wrong choice and shouldn't be able to do so would do in my amazing friend Darla's situation. And I don't mean this in an antagonistic way: I truly wonder what people would do in Darla's impossible situation. If her family's case isn't one that compels for the need for smarter, more inclusive laws and increased awareness and compassion, I don't know what is. 

Thank you so much, Darla, for sharing so bravely. 

I Tell Their Story

One year ago, we learned some of the most devastating news parents can learn. My husband, Peter, and I sat in the doctor’s office after our routine 20-week anatomy scan discussing our dinner plans. The twin girls I was carrying were craving Mexican food, I claimed. So we planned on going to famed local Austin eatery, Chuy’s. After over an hour and a half of waiting for our doctor to come in after the ultrasound – a rarity for our doctor – he walked in somberly and asked me to move from the examination table and sit next to Peter. I knew we were in for bad news.

The rest of that appointment is a bit of a blur.

“I’m surprised she’s still alive.”

“Encephalocele… might be open… very small head… possible missing digits… large cleft lip and palate…”

“Other baby is healthy.”

“Referral to a specialist… only one doctor in town who will perform the procedure if there’s no hope…”

“I’m so sorry.”

He called the specialist’s cell phone from his own cell phone while we sat across from him bawling. It kicked off a wave of appointments, including a trip out of town on a Saturday for a four-hour ultrasound to make certain what we were told was actually going on. It was.

Our baby B, Catherine Sophia, had essentially a terminal diagnosis. Microcephaly, an open encephalocele that was allowing brain matter to leak out and was causing ventriculomegaly, an underdeveloped cerebellum and prefrontal cortex, and a large cleft lip and palate were her major issues. That she had survived this long was unbelievable, but she would not survive to make it home with us if she lived through delivery. And she posed too big of a risk to her completely healthy twin sister.

On June 22, 2016, we said goodbye to her. I clutched the panda bear we had purchased for her at the Vienna zoo the day after we learned of her conception (the girls were donor egg babies from the Czech Republic – a story for another time, one I love telling). I cried, not from any physical pain, but from the grief that had already settled in 12 days before when we received her diagnosis.

Darla and Peter with Olivia

I walked around in a cloud of depression, grief for months. I delivered the girls in September and lost myself in the role of mother to a newborn. My beautiful Olivia Adele brought me such joy, but still, as I looked at her, I found myself torn between delighting in her and missing what should have been.

When Olivia was five months old, I realized what I needed to do. While Catherine may not have been meant for my arms or for this world, her story was. She was meant to help bring her sister into this world, and she was meant to open eyes.

So I took it upon myself to tell her story. I shared it in a large, almost exclusively cause-friendly Facebook group first, and then got up the courage to write an article that I guess you could say went viral. To see people sharing my words, commenting on my life, was surreal. Comforting and angering at the same time (never read the comments, right?).

But my daughter, the one who was never going to have a chance to make her own mark on the world on her own terms, was making a difference. People who were pro-life were saying they’d never thought of situations like ours, they’d never thought of gray areas before, and that my children had made them think. Because I had told her story, people’s eyes were opened.

Cate and Olivia

Along the way, my sweet girls have helped me find myself. Olivia has helped me truly see the mother’s soul in myself, the soul I always thought I had but had become afraid I’d never get to express. And Catherine has helped me dig deep and find the survivor and the fighter within myself. Having only been the child in the parent/child relationship up until this point, I never knew that a parent could be changed by the relationship. But they can.

I told a reporter once, after she apologized for making me relive our trauma, that I would tell my daughters’ story every single day for the rest of my life if it opened even a few eyes. And I will. I will continue to tell their story because as long as I live, I will make sure that they do, too. Both of them.

Cate's footprints

What would you do in Darla's situation, if you think you would never support pregnancy termination, even in Grace's situation? What if you were pregnant with twins, and learned one would never live, and was taking energy, resources and space from the other one, thus endangering her? It's hard for me to even think about, but I can't just stop there and think about something else. The laws in our country very much effect people like Darla and myself and our options in these situations. Apathy or avoidance isn't a choice for us. 

You can find Darla's Facebook page (and link to her blog) here, and if you'd like to make a donation to NARAL Pro-Choice Texas (a state in great need of support for reproductive rights, and where Darla has been holding a fundraiser on behalf of Catherine Sophia) you can do so here. 

Dana (right) and myself at the Missouri State Capital in Jefferson City, MO

I went to Jefferson City with my very good friend Dana today so we could testify to the Senate Families, Children and Seniors COmmittee about Senate Bill 1 (SB-1) and Senate BIll 6 (SB-6).

You can read about the bills (including full text) below, but the summary of each is as follows:

• SB-1 (link) does a variety of things, but tries to circumvent Judge Howard Sachs' injunction based on on the Whole Women's Health v Hellerstedt ruling in the Supreme Court, noting that based on that ruling, Missouri's one abortion facility in the entire state constituted an unconstitutional burden on women seeking this reproductive health treatment, in addition to overly lofty requirements for abortion-providing facilities.
• SB-6 (link) would remove St. Louis's ruling that organizations and companies cannot discriminate women for things like using contraception, being pregnant or getting an abortion based on moral or religious beliefs. 

I testified against SB-1 to note that while we were lucky we lived in St. Louis when we learned about Grace Pearl's diagnosis, had we lived further away, had children we had to find care for, had jobs that were not gracious in their flexibility with our sudden scheduling needs or couldn't afford the thousands of dollars necessary at such short notice (abortions are not covered by insurance in Missouri except for rare exceptions), we couldn't have terminated by the deadline of 21 weeks, 6 days (we terminated at 21 days, 5 days as it was). Such limitations would have absolutely hurt Grace, the unborn baby the bill is purporting to protect. Our story proves these bills need to be more thoughtful, considered and inclusive. 

You can read my full testimony for SB-1 (which I used to paraphrase from, and provided to the Senate Committee) here.

I testified against SB-6 noting that I should not be able to be discriminated against for terminating my pregnancy, as it's not appropriate to make assumptions as to why women choose to do this. We terminated our pregnancy out of love and concern, and feeling strongly that it to not do so was absolutely cruel. We also noted that while this is being proposed in defense of organizations that don't want to hire women that use contraception, are pregnant or have terminated a pregnancy (note: this is inclusive of nearly every single state a woman of reproductive age can exist in), the religious people in our lives hold beliefs that cannot be so simply assumed or compartmentalized, and it's inappropriate to try to do so to allow organizations to practice discrimination. Many of the people these organizations would be speaking on behalf of don't even agree with them. 

You can read my full testimony for SB-6 (which I used to paraphrase from, and provided to the Senate Committee) here.

In both testimonies I told the story of Grace Pearl, that we felt that it was the only humane, loving, moral choice we could possibly make, and that we and women like us deserve to be able to make that choice without hurdles, timelines or discrimination. I have two friends that had to do this just last week. It will continue to happen, and that is a reality that needs to be included in Missouri's bills and laws. 

I will post more very soon talking about how the day felt as a whole, but for now, we have urgent work to do: 

CALL, CALL, CALL!!

• Call your state senator! To find out who that is, use this link. From there you can get the phone number. Tell them that you oppose Senate Bills 1, 5 and 6 because they are not based on medical necessity and are not making Missouri women or the unborn any safer, and that Missouri women deserve intelligent, inclusive bills that do not discriminate against them or make it more difficult for them to obtain constitutionally protected reproductive health medical care. This is critical for right now - the bill is still in the Senate and if we make our voices heard, we can make a real difference!
• Call Governor Greitens! His number is (573) 751-3222, or you can text him via Resistbot if you're a Missouri constituent by noting you want to send to governor (you may have to unlock this level, but may not! Can anyone confirm?) Did you know you can send faxes from Resistbot from your Facebook Messenger? It's awesome - so much easier for typing than using my phone! You can use the same messaging as up above for the senators. 
• Call you state representative! You can find out who that is here. Tell them that you oppose all new bills restricting reproductive rights as they are not considered, inclusive of all scenarios that prompt a woman to get an abortion, are unconstitutional as they apply undue burden, and are not actually pro-life. You can see the list of bills the are reviewing tomorrow (it's uncertain which ones they'll hear, but you can bet it'll be the ones that are AGAINST reproductive rights) here if you want to to review and mention them. 

Have any questions? Feel free to use the contact me page to send me a note!

Missouri's Capital building in Jefferson City, Missouri

I jumped into Dana's selfie with the Capital building. We both were running on little sleep, no lunch, a 2.5 hour drive (so far) and a day of hearing bills and testimony. I just couldn't stop myself!

Governor Greitens. AP.

This is unsettling in a number of ways:

• Associated costs. There has already been one special session in Missouri this year and it cost taxpayors $66,000 for just a week, and that's with legislators only coming in on the days that there were votes. With it averaging $20,000 a day to have a special session, is this the best use of taxpayer dollars? The GOP-led legislature didn't approve a proposal which would have nullified the anti-discrimination bill, so it seems to be simply politically motivated instead of based in practicality, such as a legitimate emergency issue, especially since Governor Greitens is holding three campaign-like rallies before the special session to garner support for his initiatives.
• This is not being pro-life. In a video message shared on Twitter on Wednesday, Greitens declares himself to be “pro-life” and “proud to support life — the lives of mothers, their children and the innocent unborn.” This hardly feels like it's about the health of women or fetuses as he purports - these measures will make it harder for women to get access to the healthcare that they need. I wonder what Governor Greitens would say to me, who terminated my pregnancy to protect Grace from pain and harm, and to protect my own health? If he's truly pro-life, he'd want to ensure women can access health care as they need it, that fetuses that receive devastatingly awful diagnoses like Grace did can be treated with care and compassion, and that women cannot be discriminated against for doing so. 
• Greitens's initiatives are not common sense: It's hard not to just see Governor Greitens as another politician beholden to absolute pro-life donors. I would love to be wrong about that feeling, but the changes that Greitens wants to make (remove anti-discriminatory protections and go around a measure that insists women have access to health care facilities that provide abortions) are not common sense. Should I not get a job because I terminated my pregnancy after learning Grace had a fatal fetal anomaly? Should I not be able to get reproductive health care because I live in Joplin or Springfield? As Judge Sachs said in his decision to file an injunction, women's health is actually harmed more than hurt by laws that limit access to abortion-providing health care facilities. If Greitens were holding a special session to review a practical, inclusive, common sense initiative to find compromise between the parties, I'd be in full support of that. As it is, he wants to hold an expensive special session to endanger Missouri's women and, in our case, hurt our daughter and us for sparing her an inevitable and painful death.

Missouri State Capitol

I'm pretty discouraged to see this happening. I want to trust our politicians to truly do what's best for their constituents, not instead leaving their constituents feeling helpless, indignant and dismissed. Where is the compromise and practicality, and respect for our tax dollars?

After what we went through, I want to see our state laws become more inclusive to include situations like ours; the very real outcome of not doing so is babies like Grace being forced to be born into immense pain and death. But instead Governor Greitens appears to be insistent on instead pushing through dangerous and harmful initiatives that diminish Missouri's women down to assumptions and hypotheticals, and offer no compassion. 

If you would like to call Governor Greitens' office to express your concern and dissatisfaction with him calling a special session, costing tax payers $20,000 a day, for political reasons instead of emergency issues, his office number is (573) 751-3222. 

It is also helpful to call your representative; you can find out who yours is and their contact information here: link. 

Less than a week after the debate I stumbled onto this story in Jezebel, which consumed my attention and brought me to tears. I occasionally rubbed my growing belly to reassure myself that things were still going well in my pregnancy. Little did I know then, Donald Trump would be elected on November 9, and we would learn that Grace was not viable on November 17th. The loss of Grace, and the governmental threats to my reproductive rights are impossible to exact from one another. My feelings about abortion weren't so clear before that. But now that I understood what a late term abortion looked like, and was about to experience one myself, I found myself grieving and furious with not just the awful hand that had been dealt to Grace and ourselves, but also the one that the government was handing us: a judgmental and intentionally painful process that was beyond insulting given our circumstances.

By coincidence I later virtually met the writer of the Jezebel article, and enthusiastically shared that her story was key in motivating me to share mine. And now again, Erika is stunning me with her eloquence, vulnerability and exceptional ability to unpack the complicated and articulate a messy emotional and legal situation in poignant and relatable ways. 

To shine a light on New York's Reproductive Health Act (RHA) S2796 bill, Erica wrote this excellent article in Rewire (later discussed in Jezebel as well). I could have pulled quote after quote from Erica's words, as they resonated so strongly with me:

The Reproductive Health Act (RHA), S2796, which Christensen is advocating, does three things: (1) It takes abortion out of the penal code and puts into public health law; (2) it allows for abortions after 24 weeks in cases of non-viability, and in cases where either the life or health of the woman is at risk; and (3) it allows for advanced practice clinicians (APCs) to administer abortion care within their scope of practice. 

As Christensen points out, "The Roe decision hinged on the notion of viability, only allowing states to limit abortion access after a fetus was viable, which is generally considered around 24 weeks. In our case, our baby would never be viable". While I agree with all of the things the bill does, the bill allowing for abortions after 24 weeks in cases of non-viability is sufficient for me to believe this bill is incredibly important, and it's critical that it be heard by the New York State Senate.

If you feel like I do (that this bill is a common sense approach to making abortion laws in the state of New York more accurate, inclusive of all needs and thus pro-life, and common sense), here's what you can do, regardless of where you are:

If you're in New York:

The end of the legislative session on June 21. It is crucial that pressure is put on not only Sens. Flanagan and Hannon, but all of the senators. With that, here are four steps:

1. Identify your district and senator here.
2. Write/call your senator and express your support for the bill, and more importantly, for a vote on the bill.
3. Get vocal on social media (RHAVote.com).
4. Focus on the whole state. Got a friend in the Hudson Valley? Their senator is on the fence. Know someone out on Long Island? That’s where Flanagan and Hannon’s districts are.

Not in New York? Share, share, share! Please share this with your friends and family and ask those in New York to be engaged. Every little bit counts and makes a difference, and you never know when the person impacted could be your sister, daughter, friend, or you. 

You can find the homepage for the RHA here, and read Erika's piece in Rewire here: 

New York Forces Women Like Me to Carry Nonviable Pregnancies to Term - Rewire

New Yorkers, we need to act quickly: There's a bill making its way through the state legislature that can help people like me, who are the faces of abortion statistics, to access the care we need in our home state.

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

4 years ago we had just started trying to have a child, and I was looking forward to the next year hopefully being either my first Mother's Day, or at least being pregnant.

3 years ago we had been trying for a year, and had just learned that we suffered from Infertility. I was optimistic that Assisted Reproductive Technology could help us conceive a child, but was disappointed that we had hit these bumps in the road.

2 years ago we had suffered a miscarriage at 9 weeks of pregnancy, and were upset on Mother's Day.

Last year we were optimistic because we had 2 embryos to attempt to get pregnant with, but also tired and sad: what we had hoped would be an easy process had turned into a long journey with far more downs than ups.

And this year, we're grieving the loss of Grace, who passed at nearly 6 months of pregnancy after we terminated for medical reason after learning she had a fatal disease, and the fact that we didn't get pregnant with our last embryo. We have no idea what we're going to do next.

A friend shared the following picture with me, which reminded me that I'm not the only one that has mixed feelings about Mother's Day, and finds it to be as sad as it is happy.

I really liked this, as it acknowledged that mothers and motherhood are complex, and it acknowledged those that don't find the day or experience to be as easy, carefree or joyous as society often likes to paint it. Any time we shine a light on what is 'real' vs just the surface, I like that. This isn't of course to say that there aren't many that love Mother's Day, and that mothers don't deserve to be celebrated; I enjoyed celebrating my mom and mother-in-law very much. But it acknowledges that not ever experience with mothers and/or motherhood is happy.

As for me, I celebrated by getting my first tattoo. I never really intended to get one, but this felt right, and it felt good to get it on Mother's Day for a few reasons:

1) It was a good day for me to honor that I AM Grace's mother, even though she isn't alive, and that I 100% made the decision I did for her out of love and a desire to see her experience as little pain and suffering as possible.

2) To note that while Grace didn't get to live outside of me, she absolutely mattered and leaves an imprint and impact far longer than her brief experience was.

3) To honor my own mother. She had talked frequently about wanting to teach Grace cursive when she was old enough, and this is in my mom's (amazing) handwriting

4) To always have Grace in my arm(s). She is now there, as permanently as I can arrange it.

5) To more broadly remind me to try to act as gracefully as I can. To be kind, forgiving and accepting of my own imperfections. To basically treat myself as I would have treated Grace. I think we all struggle with that.

I hope that everyone's Mother's Day was as happy and peaceful as possible, and for those that had harder ones, for any reason at all, I held you in my heart and continue to do so.