A Happy Anniversary, For Once...

I write a lot about sad anniversaries on here. Especially at this time of year when we are hitting the anniversaries around losing Grace.

But a conversation with a friend prompted me to confirm that today is a really happy anniversary. 10 years ago, Jim and I had our first kiss.

At the wedding in early November that solidified my starry eyes for Jim.

At the wedding in early November that solidified my starry eyes for Jim.

We’d known each other for nearly a year via friends, and kept seeing each other every few months. By the time I saw him in August of 2008, I was developing a crush on him. I loved how quietly confident he was, and how passionate he was about his interests (music, biking, fun adventures). We saw each other at the wedding of mutual friends in early November 2008, and my crush was solidified.

We started emailing each other about an event we decided to work on together, and by late November, I was looking forward to each email, knowing he’d say something new that I found refreshing, affirming and interesting.

I went out to meet a mutual friend Thanksgiving evening in 2008, and mentioned Jim had emailed me. She said we should invite him out to join us, which he did, and after we all hung out for awhile, we walked her to her car, and then he walked me to mine. Except I didn’t get into it. We stood out on an unseasonably warm Thanksgiving, talking for hours. And suddenly, we were kissing.

I loved that Jim said he was going to call me the next day, even though I said I wasn’t free. He did anyway. And the next day. We went on our official first date a week later.

Today is the 10 year anniversary of that first kiss. And today, after everything we’ve been through together - dating, getting married, family health problems, our own health problems, 6 years of fighting infertility, a miscarriage, Grace’s diagnosis and the subsequent decision to terminate the pregnancy and everything we went through there… I’m more in love with him than ever. It’s cliché, but true. I enjoy Jim immensely, and can’t wait to see what kind of dad he’ll be…. but I have a hint. When I was pregnant with Grace, I once asked him what he thought about when becoming a father. I said I worried about finances, and her nursery, daycare and what to name her. Jim replied that he just thought about loving her. Having her in a baby carrier while at the grocery store. Teaching her about music. Enjoying her.

My heart nearly exploded out of my chest. How lucky was I? And how lucky was Grace to have a dad that loved her so much - so much that a few months later, he’d choose with me to spare her immense pain and take the hurt on himself instead. And how lucky is Grace’s sister now?

I’m looking forward to the next 10 years.

Not long after we started dating.

Not long after we started dating.

Two Years Ago Today, We Had The Dance Party To Say Goodbye To Grace Pearl. Listen Here.

I posted nearly this exact same post a year ago today, and it feels appropriate to share it again this year. Two years 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.

This year the anniversary hits on Thanksgiving. It’s our second year encountering the anniversary of these deeply sad and painful circumstances around a time focused on gratitude and thankfulness. The coincidence is at least becoming more and more bittersweet.

Medically, I spent much of this day 2 years ago 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

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. 

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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.

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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.

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