One Year Ago Today, We Said Goodbye To Grace Pearl

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

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

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

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

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

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

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

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

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

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

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

A Dance Party for Grace Pearl

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

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

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

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

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

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

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

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

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

Grace's Dance Party Playlist

The Beach Boys - God Only Knows

The Beatles - Twist And Shout

The Bee Gees - Stayin' Alive

Blondie - Atomic

Chuck Berry - You Never Can Tell

Sam Cooke - Nothing Can Change This Love

The Doobie Brothers - What A Fool Believes

Earth, Wind & Fire – September

Fleetwood Mac - Go Your Own Way

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

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

Al Green - I'm Still In Love With You

Al Green - Let's Stay Together 

The Hollies - Bus Stop

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

The Jackson 5 - ABC

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

Kenny Loggins - Footloose

Little River Band - Lady

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

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

The O'Jays - Love Train

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

The Rolling Stones - Let's Spend The Night Together

The Rolling Stones - Brown Sugar

Bruce Springsteen - Born To Run 

Warpaint - New Song

Stevie Wonder - I Was Made To Love Her

Stevie Wonder – Superstition

Neil Young – Harvest Moon

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

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

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

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

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

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

null

null

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:

null

null

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 I Listened To While Grieving Grace

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

A Year Ago Today... And A Request

One year ago today, I woke up thrilled and excited to finally have our anatomy scan and finally get the ultrasound picture I've always wanted: not that of a little gummy bear made up entirely of a pulsating heart beat (which isn't to say it didn't bring me to tears every single time we saw it), but the classic, quintessential profile shot of a healthy pregnancy. 

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.

My Grief After Losing Grace: Where I Am Now

Grief is just such a jerk. 

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.