Just For One Day

Looking back, maybe it was a mistake for Ben and I to choose David Bowie's "Heroes" as the entrance song to our wedding reception. We like David Bowie, and "Heroes" is twistedly romantic in its own way, a tale of a self-destructive couple who peaked, crashed, and burned.

I don't like to be called a hero. But Ben and I, we were heroes. We were heroes, just for one day.

One day a doctor told us if our child were born alive, he or she would die shortly thereafter. That was three years ago, January 31, 2011. Those words devastated us, terrified us. They changed everything about us. They set us on an irreversible track. But with those words we learned something else: There wasn't a thing any doctor could tell us that could make us stop loving our baby.

One day we sat in Mass and listened to Deacon Dan's homily on late term abortion, an option that we had been offered. Deacon Dan described the procedure wherein a solution is injected into the unborn fetus' heart to stop its beating, and then the forceps are used to remove the baby from its mother, possibly limb by limb. Ben leaned over and said to me, "We are not doing that to our baby." Because there was nothing anyone could tell us to make us hurt our child.

We saw an expert and she confirmed the worst news we'd ever received. We went for another very special ultrasound and learned that our child was our very special baby boy. We named him, and we shared his story with the world.

One day we walked into a hospital to induce labor and welcome Gabriel into the world, knowing our "hello" would soon lead to "goodbye." One day, against the odds, we took our son from that hospital knowing he would die in our home. One day we made a decision to share Gabriel's photographs, even those where his defect was apparent, because there wasn't a thing anyone could say to make us ashamed of our son.

One day we watched our son seize and suffer for five hours. We told him how much we love him. We told him he didn't have to be strong anymore. We told him it was okay to leave us. There was nothing on this earth, not even our own grief, that was worth our son's suffering.

We held him as he took his last breath, we prepared his tiny body for cremation, we announced his passing to our family and friends, and we planned his funeral. One day, one moment at a time.

A hero isn't a hero for simply doing what is right. That's all we did: The right thing. We're heroes because these days, not enough people do the right thing. 92 to 98% of mothers like me elect to terminate their pregnancies on diagnosis. 92 to 98% of families allow the fear to take over and they forget that they, too, love their child more than they fear any diagnosis, more than they want relief from their grief, more than they dread watching their child suffer. They all have it in them to do what Ben and I did. We're not special. We just listened to our hearts above all else.

We're not unshakeable. The choices we made after Gabriel's death are proof. True to the song's protagonists, I was mean and he drank all the time, and sometimes I drank all the time too. We said cruel things. We grew cold. We allowed ourselves to grow apart. We peaked with Gabriel, and then we crashed and burned and ended in a divorce just short of two years after receiving our devastating news.

We live separate lives now, on separate ends of the country, sharing only our experience with Gabriel. But even after it all, we can still say that were heroes. Just for one day.

The Sound of Silence

I'm trying this new thing, this thing where I go to bed at a reasonable hour and get up in time to do everything I need to do in the morning, like a normal person. After a year and a half of working the Monday through Friday, 8 to 5 grind, the need for a little routine in my sleep schedule has become pressing, have fallen asleep at my desk one too many times.

Trouble is, years of night owlism have my body trained a certain way. Long days make falling asleep by 10 fairly easy, but find me waking up at about 1 in the morning to spend the next two to three hours wide awake. As I endeavor to put myself on a normal sleep schedule only to be thwarted by my body's habits, I take joy in sharing those quiet hours with Rocco, who also seems to wake up about the same time. It's not unusual for Rocco to be active the entire two to three hours that I am awake. We watch "I Love Lucy" re-runs and roll and kick and play. We listen to the dogs snore and sigh and stretch. We play Candy Crush. We worry about staying awake at work the next day. We just hang out.

"Sleep while you can!" I've been admonished. I'm told sleep and showering and generally feeling like a human are to come to an end upon Rocco's arrival. Perhaps some would even say that Rocco's waking at 1 a.m. now is just a sign of what to expect when Rocco is born. I can only say that I look forward to the day when Rocco's cries wake me up, at any hour. I look forward to a house filled with sound.

On a quiet Friday morning, May 14, 2010 I woke up to the cramping pain of a miscarriage. For ten days I woke up not to the sounds of my crying infant son, but to his muteness. In the silence of the night I checked Gabriel to make sure he was still breathing, still alive. I had to set timers to remind myself to feed him - he couldn't let me know with his cries that he was hungry. Even when he was having a fit, typically during diaper changes, though his mouth opened wide and his head shook in protest, no sounds came from his mouth. The only time he ever made much noise was when he was dying. The sounds that I remember from my son are his death cries. And those memories can wake a mother from her sleep, too.

The silent sounds of my empty home and the empty nursery became haunting, so much so that I hardly spent any time there in the two years following Gabriel's death. The sounds of a running toilet, an agitating washer, or a creaky ceiling fan weren't enough to fill the silence that should have been filled by my son. Though I enjoy my personal time and space I found that too much of it left me longing for the life that I thought I would have. I longed for my children. I longed for nights made sleepless by their needs. I slept well in that time, because I frequently fell asleep boozed up enough to get me through the night. But I woke up in the same empty home with the same gaping heart, missing the things - the people - that were missing.

I worked to embrace the quiet. I found shows that I enjoyed, hobbies that distracted me while I was at home, and little by little learned to enjoy living essentially alone. A full-time job, bartending one night a week, and my commitments to coaching mock trial and serving on the Right to Life of Kern County Board of Directors eventually consumed so much of my free time that deciding how to spend what little I had became a challeng. Do I hang out with friends? Or do I spend this valuable time alone? The alone time became much less frequent. And the loneliness became bearable.

Still, something was always missing.

Sleepless nights will grow tiresome, but I'm told that upon Rocco's arrival they'll be a part of the rest of my life. When he or she has stopped crying to be fed or for a diaper change there will be monsters and nightmares waking me up, and then homework and last-minute school projects, and then curfew violations, and then waiting in antication when Rocco's own children are born.

Twenty minute showers will be traded in for five minute rinse-offs and new clothes will become an even greater luxury and my pub-height table will become a nuisance when Rocco is a toddler - And speaking of pubs, I'll see much less of the inside of them. Most recently I've been told that for the next 12 years I won't eat a piece of chicken that's NOT in nugget form. I hear I will watch a lot of cartoons, though we'll try CNN first and see how that goes.

Unquestionably, life is about to change dramatically. I worry that I'm not ready, that after all of this time I've still moved too quickly. I wonder if I'm selfless enough to devote myself to raising a child. But of course, there's no going back now. And there's no challenge I'd rather taken on. There's no sound I'd rather have filling my sleepless nights than that of the child I've wanted and loved since before he or she was on the way. There's no place I'd rather be than in this moment.

Holding Tight

By my best estimation, it happened eight years ago, in the spring of 2006. I had recently been accepted into law school. A couple came into Charly's on their first date. She knew me, apparently, because she introduced me to her date and informed him that I would be going to law school. I have no recollection of the incident.

Years later I received an e-mail on Match.com in response to my profile which indicated that I am a full-time lawyer by day and a part-time bartender one night a week. The e-mail, the second I received from this person, queried "Did you ever work in that little bar in East Bakersfield in the Albertson's shopping center?" In fact I did, and continue to work there to this day.

Marcos and I have communicated every day since he sent me that e-mail. We're more than just in communication - We're in love with each other, and we're having a baby together. Sometimes I feel discouraged by what I perceive to be a lack of romance in the way we started dating - Through a dating site. But when I consider our one-time encounter and subsequent meeting years after that encounter, the whole thing seems sort of fated.

I wonder why our lives couldn't have been more aligned back then. Why did he have to be in my bar on a date with someone else? Why couldn't we start dating then? Why did it take eight years for him to walk back into my life? Of course, I know that I wasn't in the state of mind to love him, or be loved by him the day that we first met. I had my experience with Gabriel to get to. I had eight years of living and learning to do before I would be ready for him.

I love Marcos, selfishly, because of the way he loves me. I love him because I can tell that he loves Gabriel, even though he never met him. When I found myself a single mother of a deceased baby, I thought that maybe falling in love again would mean I would have to put that part of my life away. But the family I'm forming with Marcos has plenty of room for Gabriel.

I love Marcos for what he is. He is a dedicated son, brother and uncle and dog owner. From the moment he knew about Rocco, he's been a dedicated father. He is devoted to our relationship. In his words and in his actions he assuages, daily, my fear of being abandoned by assuring me that he will stick around. It's hard to imagine that he's really only been a part of my life for a brief period, because he's made my life so much more complete and meaningful.

I love Marcos because last week I watched him cradle his dog Zeke while he had a seizure. I know what it's like to watch helplessly as some being that you love seizes. I know what kind of strength it takes to bring comfort to some creature in need. I love his strength. I love his stoicism. I love him, deeply.

Love - The loss of love, the search for love, the relentless pursuit of love - has been a running theme in my story. In my life. I know well how fragile love can be, and how much it means to find love. Sometimes it's still hard to believe that Marcos' love is here to stay - I question him about it regularly, to the point of near sabotage, but Marcos is unwavering. I've done my share of pushing. But at the end of the day, when I look at Marcos all I want to do is cling to him and our love with all of my strength for the rest of my life. I just want to hold him and be held by him, and never let him go.

Faking It; Making It

January 16, 2013 would have been marked the 3 year anniversary of my marriage, except that my divorce decree had arrived in the mail just four days before. I hadn't seen Ben in more than 6 months, since he rolled out of sight towing a U-Haul trailer to South Carolina. In less than three years we'd lost two children and run what was once a bright and hopeful marriage into the ground.

I wasn't quite sure what I was doing with my life anymore. Out of necessity I had taken a job as an associate attorney in a worker's compensation defense firm. I had lucked out - I loved my job. But every day that I was tucked away in an office pushing paper, I couldn't help mourning the fact that my well-honed trial skills were being wasted. When I graduated from law school, a mediocre student but an award-winning trial advocacy competitor, anyone who knew me would have assumed I would be a trial attorney. I loved trial practice. I loved criminal law. I still love them both.

When I was invited to judge the high school mock trial competition on January 16, 2013, I rightfully anticipated that I would be the work comp world's lone representative. In the judge's room I greeted the attorneys that I knew, but was generally a stranger in the close knit community of legal practitioners. I was relieved to be paired with Layla to judge a round. Layla, a deputy district attorney, had been my opposing counsel in the last criminal matter that I handled before accepting the job at Mullen & Filippi. My client and I stood firm in our position that we would take nothing short of a dismissal of charges, or trial. I'd put on a bravado until my client was offered a conditional dismissal, at which point I waived good-bye to my first opportunity to go to criminal trial, and stood by my client as she accepted the deal.

Layla and I sat, this time not as adversaries, as the presiding judge, in-house counsel for Chevron and hardly a criminal trial attorney or judge, introduced herself. The competing teams, West High School and Garces High School, then introduced themselves and the round began.

You cannot watch a high school mock trial competition, and not marvel at the fact that these are high school students, speaking and arguing and objecting like experienced adult attorneys. You cannot love trial like I do, and not feel as though you are watching some penant baseball game. I shared my horror with Layla, an experienced trial attorney herself, as the umpire made bad calls and the players suffered the consequences. I felt alive. I felt like this round mattered, and like I mattered for being a part of it. I felt like I was watching these children blossom before me. I felt like I was watching them change. Someday, some of them might be my colleagues. I felt hopeful, on this day that had three years ago been filled with a hope that was crushed by the sad, sad circumstances of a miscarriage and Gabriel's fatal diagnosis and death. I felt like maybe it was okay to keep going.

When West High's teacher coach asked me to join his team as an attorney coach for the 2013 and 2014 season, I had my reservations. I was a loyal East High alumni, and it was hard to imagine betraying my alma mater to coach at another school. I reminded myself of their team of four attorneys, each Hispanic girls in whom I saw some element of myself, and I agreed.

Beginning in August, and week after week after that, I've watched this talented group of students develop before my eyes. When Gabriel was born, I had an opportunity to see a human brain and watch as it functioned, limitedly, in my son even when the doctors had told me that he would not function, that he would likely not live to leave the hospital. Now, while I practice with the West High team, it is as though I am looking inside their skulls, watching their brains grow before my eyes. Where last year I judged them in a competition round against Garces, a private school with a tremendous rate of graduates who go on to college, and saw them lose, this year I have witnessed them transform that loss into energy to face Garces again. With pride I stood as their coach as they again met Garces in competition. With pride, I learned that this year, they won.

These students are bright, intelligent, college-bound young adults. Of course, they are a breath of fresh air when it seems all we ever hear anymore about American teenagers is their proclivity for drug and alcohol use, teenage pregnancy, and wasting their lives. But these students are more than just smart kids. They inspire me every day, because there's just something about them that makes me think they are going to change the world. They're already changing the world, just because they're in it, and they are going above and beyond just attending their classes every day. They are consuming the high school experience with zeal, with an energy that makes me certain that their lives are just beginning, and they are going to do amazing things with the rest of their lives.

Sometimes I hear the words of Professor Pritikin, my trial advocacy coach in law school, pouring out of my mouth. "Everything that happens in these rounds, you make it look like you wanted it to happen. Don't let the judges see that you've hit a bump in the road. You fake it until you make it. You get objected to? So what? You wanted that objection. You get overruled on an objection? Who cares? You planned it that way. Do not waver. Do not back down. It's all part of your plan. Even if it wasn't." As Pritikin throws his voice in our practices, I admonish myself to live by my own rules, to do what I'm telling these kids to do. Slowly, I'm learning to practice what I preach. I've been faking it and have recently realized that now, I'm making it.

As I've watched them grow in the last few months, I've also found my own life falling into place. A year ago I wondered if I'd get another chance at love - which I desparately wanted - again. Since then Marcos has walked into my life, and just when I was beginning to think that he had completed the picture, we learned that we were expecting even more. Figuring out the shape that our budding family will take has been no easy task. Preparing the mock trial students for competition hasn't been easy either. But they have both been worthy endeavors.

On Wednesday night the West High students, after having won their first round against Garces, were paired up against defending mock trial champions Centennial High School. My sense of competition when it comes to Centennial High's academic programs runs deep, as I vividly recall losing to them in debate competitions during my four years of high school, and most notably having lost to them during my senior year in the Bicentennial We the People state mock congressional hearing competition. I wanted this win.

"It just occurred to me that this isn't just a competition among the students. It's kind of a competition between the attorney coaches," Marcos noted after the Wednesday night round. I was stunned that this had just occurred to him.

"Yes. These attorney coaches, they probably don't think of me as competition. They don't even know me. They've never seen me in a trial. I do administrative law, and I'm in my own world, and I'm no threat to them. But yes, I feel comptetitive. The Centennial coach is a deputy DA, and he's done trials. So yes, knowing my students are competitive with his, it makes me proud. I'm proud of our performance tonight. We played to win. We might have won. These kids, they make me so proud. They're unbelievable."

We lost our round against Centennial. The structure of the competition is such that Centennial will now inevitably be in the final round and may retain their title as the district champions. West High is in the running to take 3rd place, a significant improvement over their 7th place from last season, with the hope of winning the championship next year close enough to taste. We'll only lose one student, a senior who will graduate this spring. We have something to aim for, and much to be proud of.

And I am a changed person. I've spent the last year growing and changing too. I'm learning that sometimes you lose, and losing sucks and I'll always think it sucks. But there's still so much to be gained, even in loss. A loss is an opportunity to try again, to reach even higher, to improve yourself, and to walk away with even more than you started with.

I've frequently thought of myself as a failure when it comes to Gabriel. I failed to grow him "right," I failed as his mother to protect him. But then I think with pride of the way he defied the odds, the way he survived for ten days when the experts told me I would be lucky to have him for ten hours. I think of his death as one of the deepest losses of my life. But the ten days I had with him, they were some of the greatest days of my life. For those ten days, I had it all. For ten days, I was on top of the world.

There will always be defeat. There will always be loss. And there will always be a chance to win again.

Wake Me Up

I'm drunk. I've entered the wrong PIN into the ATM twice now, but I'm determined. I peak around the corner and see Timothy singing karaoke, and I hope no one's noticed that I'm taking so long in the hallway because it feels SO long, so I try one more time and this time I am successful and the machine spits out several $20s. I curse the whiskey under my breath. I feel his voice on me.

 "Watch your mouth." I turn around and am momentarily confused. He doesn't belong here with the ATM machine. They've never been here at the same time. My head tilts and my brow wrinkles, then relaxes as I recall that he was inevitable. It was all inevitable.

 So I simply say, "Oh. Hey, Sean." The karaoke has stopped, and I hear Otis Redding on the jukebox. I glance to my right, and the jukebox is ten years older, containing a limited selection of CDs. Sean lights a cigarette and leans against the doorway of the men's bathroom. "You're not supposed to. . ." and my voice trails off while Sean looks at me expectantly, but a cloud of cigarette smoke has wafted from the main bar into the hallway where we are standing. I am reminded that we're in Charly's and patrons could smoke in Charly's. "Nevermind. What do you want to do?"

He takes a drag and holds it. I remember the first time I saw him standing in a doorway smoking. I thought he was an amazing sight, like someone out of a movie. It was like something out of a movie. "We can do whatever we want. We have time." But we don't. "Let's finish our drinks." He nods towards the bar and I see in front of the barstool where I first met him a Bud Light, and next to it a Corona which I presume to be mine.

"No, let's not stay. Let's get out of here. Let's just go somewhere by ourselves."

"I want to finish. I'm having fun. We'll get out of here after this one."

"It's just that there's so many people. I can't even really talk to you." "We can talk anytime." Except, we can't. "We're having fun, right? You're having fun. If you're not having fun you can go. I can meet up with you later."

"No. No, I'll stay. I want to stay." Holding the smoldering end of his cigarette between his forefinger and thumb, he turns to open the bathroom door and quickly I begin to panic. "Where are you going?"

"The bathroom. I'm just going to the bathroom. Is that okay? I'll be right back."

"Please don't. Please don't go. Don't go in there. Please stay." Sean cups the side of my face with his empty hand and looks down at me. I see the subtle green hues in his eyes, ringed with brown. I couldn't always see the green, but I could always see that the whites of his eyes were growing red with strain. 9 years later, Sean's vision likely would have been nearly gone. He stares at me for a moment.

"I'll be right back."

And he pushes the door to the bathroom open and disappears behind it. I try to stop him, but I'm paralyzed, I can't lift my arms or my feet, so I brace myself for what comes next. From the other side of the door I hear a gunshot. It rings in my ears, but is still muffled, quiet, absorbed by Sean's brain and the back of his skull. 

The world begins to spin and I am standing outside of his apartment and I sense that something is wrong because his car hasn't moved it hasn't moved for five days and he's not answering his phone and we had a fight but I have to know if something is wrong so here I am but something is wrong so I begin to run but my feet feel so heavy they are so heavy but I drag them along until I am in front of the door but I don't have a key anymore because we had a fight but I see that light peaks through the blinds and I know that can't be right because it's the middle of the day but I look through the blinds and there he is from behind the blinds I see him and it's so terrible and it's not right so I bang on the window and I command him to get up and walk but I see that the gun is right beside him and I see that his legs are stiff and I see that he is not moving and I pull at the cheap windows until they begin to slide open and I push the blinds out of my way and I start to enter through the window but there is blood and I can't keep going I can't see his face because I want to remember his face looking down on me so I call and then there are sirens and they are telling me that he's gone. He's been gone for days. He's been like that for days.

The world spins again, and I am in the hallway again. This time I am at The Wright Place. There is no smoke, and the modern digital jukebox has returned, but it's not on right now because it's karaoke night. I wander back to my seat, now in the middle of the bar, still with a Corona in front of it. I see Gabriel's picture above the register. It's nine years later. Marcos is waiting for me. When I sit beside him he turns to me and kisses me on the cheek and puts his hand on my back and he asks if I am okay and I tell him yes.

I know that the movie is unfolding as it is supposed to. I know that it had to play out as it did, for me to get to where I am now. The dreams are fewer and farther between now, maybe two or three a year, but they still come and they are still haunting, packed with the inevitablity, always like a train car on a track without a brake, always headed for tragedy, even as I try with futility bring it to a halt.

As the world settles down after Christmas I can feel the memories coming back to me in the turning pages of the calendar and the cold night air and sometimes I struggle to breathe. But I know that if I had never been where I was, I couldn't have found my way to where I am. You don't get love without a little pain. You don't get a rainbow without the rain.

Living on a Prayer

We're halfway there. 20 weeks into our 40 week pregnancy, I'm still working on balancing my hope against my fears, but every day seems to be a little easier. My belly is growing, faster than it grew with Gabriel. The growth is at once comforting and unnerving - I didn't grow this quickly with Gabriel, but maybe that's a good sign.

Halfway there, I find myself living on prayers, the silent whispers of my heart that I can't hide from God. I hope for a baby boy, whom I can watch grow and do all of the baby boy things that I never got to see Gabriel do. I hope for a little brother for my son. And I hope for a baby girl to dress in the pretty clothes I've collected in my hope chest over the years. The uncertainty of this rainbow baby's gender has provided me with twice the hope, easing some of the pain from having my hopes crushed at about this point during my pregnancy with Gabriel. Where my dreams for Gabriel's future were destroyed so suddenly, the hope this time is being stretched to its limits as I wait for this baby's birthday when he or she will finally be revealed as my son or daughter.

I have not-so-silent prayers, too. Although Gabriel taught me to live in the moment, his short life also taught me to dream big, and bold, and with specificity. I prayed for five very specific things when Gabriel's diagnosis was confirmed: For his live birth when 25% of babies like him are stillborn; for a chance to formally baptize him in the Church, though Ben and I baptised him with tap water from the sink in our delivery room; for a chance to bring him home from the hospital - my eyes still flood with tears as I recall being rolled in a wheelchair through the halls of Memorial hospital on that sweet summer day, June 12, 2011; for a chance to introduce him to Gideon, my other mighty warrior; and I prayed for hair, locks of hair to touch and stroke during his short life, and to save as a keepsake when my time with him on earth was through. When Gabriel was born with a circle of soft, long, blonde hair covering the parts of his skull that did develop, I distinctly recall thinking, "Well, I guess I never did ask for brown hair."

When Gabriel's diagnosis was confirmed, I stopped asking God if I could keep him, I stopped asking God to spare my son's life. I accepted the cross I had been delivered and said, "If You must take my son, please let me have these things before You do," and I'm so grateful that I changed my prayers because those memories are the ones that carry me when the longing for Gabriel becomes desparate. I'm unashamed now to admit that I hope for a baby, a boy or a girl, who is healthy and whole and will live a long life - and who has green eyes. Since I've wanted to have children - And I can't remember a time in my life when I didn't want to have children - I've had a vain and superficial wish for a child with green eyes, like my Grandpa's.

God knows my offspring and I tend to beat the odds, but common sense still tells me that I've got to give the odds something to work with. Green eyes are the product of a recessive chromosome. I don't need to have green eyes, nor does Marcos, for Rocco to have them. But we've got to have them somewhere in our bloodline. It helps to be able to point directly to my maternal grandfather and paternal aunt for evidence of the green-eyed chromosome. You can imagine my delight, then, when meeting Marcos' extended family this weekend for the first time at a birthday party, only to learn that he has three aunts and an uncle with green eyes too. My odds just increased.

As the party went on and my social inhibitions faded, I found myself conversing with these people who were not only Marcos' family, but who are Rocco's family too, and now mine through Rocco. Their pride in Marcos and the wonderful man that he is was evident. Their joy at the impending addition to their family was clear, too. I am more confident than ever that Rocco, boy or girl, green or brown eyes, will be surrounded by love. I've learned that love is the only thing we can promise to our children, and Rocco will never be without it. Never.
Still, green eyes would be nice.

Having hit that halfway point, having confirmed that Rocco does not have anencephaly, having verified once again that I am blessed to have Marcos by my side, I can almost feel this baby in my arms. Two and a half years ago I held my heart in my hands and watched it beat for the last time, but before long I will hold my beating heart again, in answer to the prayer that has remained most steadfast inside of me.

A Sword Will Pearce Her Heart

Luke 1:34-35 - "And Simeon blessed them and said to Mary His mother, "Behold, this Child is appointed for the fall and rise of many in Israel, and for a sign to be opposed - and a sword will pierce even your own soul - to the end that thoughts from many hearts may be revealed."

In the nearly three years since my son Gabriel was diagnosed with anencephaly the story has become all too familiar.  Like 1 in 1,000 parents Roxi Harp Shook was told that her daughter had anencephaly, and if she survived birth she would live for only minutes, possibly hours.  Maybe, if she was very fortunate, she would live for a matter of days.  Or she could terminate her daughter's life, no questions asked.  She could extinguish this tiny, helpless child who was seemingly living only to die.

And like less than 10% of mothers do when confronted with this diagnosis, Roxi selflessly told the medical community to shove it.  There wasn't a thing any doctor could tell her to make her give up on her child.

I first "met" Roxi in June 2011.  My son Gabriel, born on June 10, 2011 with anencephaly, had unexpectedly survived long enough to be discharged from the hospital.  We'd been released with no instruction on how to care for Gabriel's opening.  A sister anencephaly mom, Nichole Simmons, recommended I contact Roxi-then-Harp.  Her daughter Pearce was living miracle, then four months old after being born with anencephaly.
I can't remember much about our text message conversation.  We were both so busy trying to figure out this unique situation of motherhood, trying to figure out how to care for a baby who was born to die.

Gabriel lived for ten precious days, the ten most exhausting days of my life.  Without having been there, you can't imagine what it's like to know that your child's life is so very fragile, destined to be so very short, that he or she could leave you any minute, any day.  My sweet little boy died at ten days old, having trampled on the odds given to us when he was diagnosed.

But on the other side of the country, Pearce Cheyenne Harp was living and thriving and causing doctors to throw their hands up without answers, the faithful to be renewed with inspiration, and the skeptical to shake their heads in wonder.  Pearce celebrated a very special first birthday. . . And then a very special second birthday.

Anencephaly mommies like myself, and those who had their babies even longer, or even shorter, and those expecting their babies soon, looked to Roxi and Pearce with vicarious hope.  None of us know how much time we might get.  We choose to give our babies life because we don't believe for a minute that life is a choice, but a gift.  It is not for us to take.  Life is God's for us to place our trust in, and we do place our trust in Him.  We trust Him knowing our mother's hearts will be pierced with a sword leaving a wound unlike any other - The wound of the loss of a child.  We suffer the ache because we love more than we hurt and we know more than most what a blessing every breath and every moment are.

Somewhere along the line, as we watched Roxi and Pearce live and love we also witnessed the transformation of Roxi, who went from a mother who expected her child to die, to a warrior who knew her daughter would not live forever, but would not let her go without dignity, respect, and a fight.  No one would treat her daughter like a lost cause.  No one would treat Pearce like she was already gone.  Because she was here.  She was here, against all odds, for two years and ten months.  In two years and ten months a little girl who couldn't walk and couldn't talk changed the way so many see life, love, and motherhood.

When Roxi asked for prayers for Pearce's relief from suffering, I knew what kind of strength that took.  I know how hard it is to know that the best thing, the only thing left for you to do for your child is to let them go.  I know what it's like to ask your own child to let go of your hand, and take Jesus' hand instead.  My heart ached with the memory of letting my own baby boy go as I joined Roxi and Casey and Jim and the family and the world in this prayer.

On December 10, 2013 when I woke up and learned the news, that Pearce had passed after surviving exactly 2 years and ten months with anencephaly, the tears flowed knowing the pain that a family was experiencing somewhere in North Carolina.  But even as I cried, my heart throbbed with gratitude for this woman and this child who by their example changed hearts and minds, and saved lives.  How many women have decided to continue their pregnancy after hearing Pearce's story?  How many minds have been changed to recognize the value of every life, no matter how short, no matter how small?  We'll never know on this earth, but we know that this earth is a different place because Pearce Cheyenne Harp was in it for two years and ten months.

A sword has indeed Pearced Roxi's heart.  She will never be the same.  But I know that this precious ache she is experiencing is one she would never want to live without.  That child has left an imprint on this world that will survive long after each of us are gone.  I know that Roxi would never again want to live in a world that hadn't been pierced by Baby Pearce.