Friday, December 27, 2013
"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.
Tuesday, December 24, 2013
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.
Monday, December 16, 2013
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.