Tuesday, December 16, 2014

2 in 2,000

I picked up my phone one evening to find urgent message from an unusual source:  "Please contact my friend Missy.  Her baby was just diagnosed with anencephaly and she sees a specialist today to confirm," Josh pleaded with me through Facebook's instant messenger.  "You can find her on my Facebook friends list."

Immediately I found Missy's Facebook profile and contacted her, knowing she would soon be asked to make a decision as to whether to carry to term.  She had already decided that she was going to continue the pregnancy with her daughter, due in March.  She'd already found great peace, and seemed to be coasting along.  After sighing a prayer of relief I took a step back and recognized Missy from an anencephaly support site.  She'd already been doing her research and found the same group that I'd found three years ago.

From there I scoured her Facebook profile, beginning with our surprisingly long list of mutual friends located in our "small" town of 365,000.  My mind started to stretch as I realized Missy and I must have gone to high school together at some point.  I wandered through my memories, trying to recall her.  I pulled my stack of yearbooks from a bookshelf and flipped through the pages, still uncertain of Missy's maiden name, hoping that I would find a clue, all the while remembering the hope and promise that filled the high school version of me that had never heard of anencephaly.

I sent Missy a friend request, and sat back and waited.  Finally one day a post from one of her family members pulled the trigger, when Missy's maiden name, the name by which I would have known her, was revealed to me. As far as I knew, she was Melissa back then, but then again, I didn't know her at all.  We shared friends, and she had a unique name, but she and I had never had much interaction that I could recall.

Still, I started to see the pieces come together.  "Andrea, have you met Missy?" our friend Justin tagged us both one day.  Her interactions with our mutual friends began to pop up on my news feed - her interactions with my good friends, her interactions with my mere acquaintances, the interactions that told me we must have run in the same circles and still, our paths had never quite crossed until now. How had we missed each other those nearly 20 years ago?  What kind of God had brought us together in 2014 through the shared adverse diagnosis of our children?  He must be the same God that whispered to our hearts the words we needed to continue to foster the sweet lives within us, when so many others feel it is a cross they cannot bear.

So here we are:  I am three years post-Gabriel; Missy is three months 'til Imogen.  It doesn't seem fair, really, that we once shared a school, teachers, friends, perhaps even the stage in the auditorium, or a bench at a football game - And now we must share this.  Only 1 in 1,000 women will walk in our shoes, so how did we become 2 in 2,000?  I wish that no one ever had to share this experience. But here we are.

Yes, here we are.  And what a pleasure it has been to get to know this woman, so strong, so full of faith, so in love with her little girl.  And I know THAT'S what unites us.  Our love for our children, no matter what they look like, no matter how brief their lives may be, no matter how afraid we may have been or may be of what it means to love a child that cannot stay.  The world is full of uncertainty and things to fear, but thankfully it's still a small world, and it's still filled with love.

Tuesday, December 9, 2014

From Gabriel to Eden

Yesterday Catholics across the world gathered to celebrate the Feast of the Immaculate Conception, acknowledging our belief that Mary, Mother of Jesus, was born without original sin.  Mary and Jesus are the only people we acknowledge as having been born without sin, so born, of course, due to the roles that they were to play in our salvation.

The readings for yesterday's liturgy began with a reading from Genesis, wherein Adam and Eve are hiding in the Garden of Eden, having eaten from the Tree of Knowledge of Good and Evil, knowing they are about to face God's consequences.  The event is widely known among Christians to be the Fall of Man.

The Gospel reading for the Feast of the Immaculate Conception comes from Luke, and recounts the revelation to Mary by the Archangel Gabriel that she will conceive and bear a son who will be the Savior of the World.  Christians believe that this is not a responsibility that was forced on Mary; rather, she chose to accept this responsibility out of her great and pure love and obedience for God.  Because of her role in our salvation, Mary is often considered by Catholics to be the new Eve, the woman whose choice lifted us from the choices that caused our fall.

When I think of my life and the choices I have made in its course, I can hardly consider myself Marian.  I'm sinful and selfish, just like the rest of us.  Still, I know that one unique choice does set me apart from most of the world, while it brings me a bit closer to Our Lady.  THe decision to carry my son to term in spite of his diagnosis is a decision that only 1 in 1,000 American women will have to make, and one that only 2% to 8% of that 1 in 1,000 will choose.  Those are just the facts.  And the fact is, I made the choice to carry my son out of obedience to God's will for me to put my money where my pro-life mouth was and walk the walk that I'd been talking of.  I made the choice out of fear of Hell.  But above all, the fact remains that I made my choice for one very selfish reason, and that is I loved and wanted my son so much that I couldn't just let him go.  I wanted him to stay, and so I would keep him as long as I was permitted.

I named my son Gabriel.  I was confident that he was bringing a message to this earth, that he would change the world, just as the appearance of the Archangel Gabriel the Messenger changed the course of our lives after death.  I named my son Gabriel because the name means "Hero of God," and "God is my strength," and to me our time together epitomized both phrases.  As I leaned on God in the weeks that followed Gabriel's diagnosis and 10 days that followed his birth, I knew that my son was doing great things, heroic things.  I was just the vehicle, along for the ride.

Gabriel passed, and I knew the piercing pain that the sword of her child's death brings to a mother's heart.

Then one day, I was holding my precious daughter Eden in my arms, after a brief but painful labor.  Somehow, I had gone backwards. I had gone from the promise I felt when Gabriel was conceived, to the crushing blow of his diagnosis, to the stabbing pain of his death, to the skepticism of a subsequent pregnancy, to the joy of Paradise. I've gone from Gabriel to Eden

Occasionally discussion arises among Christians:  Was the Fall of Man not necessary, in order for Christ to rise?  If not for a flawed world, would we ever appreciate paradise?

I'd like to think that we would, but I don't know.  This is the only life we know.  This is the only world we know.  Likewise, I only know a world marred by the death of my son, made bright again by my daughter's sweet face.  I only know the road from Gabriel to Eden.

Friday, December 5, 2014

One O'Clock

"I think your window is over there.  Wait here while I check."

I turned to look at the 16 year old girl behind me.  "You're here for your driver's test?"  She smiled, revealing a row of braces laid across her upper teeth, and nodded.  Her excitement shone and I envied her love of life in that very moment.  Her mother flagged her to Window 20, where she stood in line for her appointment, and I turned to Window 1 in front of me, where I was to check in for my own appointment.  "One o'clock," I answered the woman behind the window.

"Fill out this application.  Do you have evidence of your new name?"  I produced my marriage license from the manila envelope in my hand.  "Good.  They'll want to see that at the next window.  Here's your number.  Wait to be called."  I took a seat and could see the young girl exit the building with the examiner, her mother looking on with pride.  I looked at the application before me and carefully filled in the boxes:

A N D R E A
L Y N E T T E
L O P E Z

I considered for a moment the tremendous piece of myself that I was about to release.  I thought about my accomplishments as Andrea L. Hernandez - A bachelor's degree, law school, admission to the State Bar, even Eden.  I thought about last time I changed my maiden name, to Cude, my Gabriel's last name, only to change it back three years later, the man who gave me that name still unaware of the pain of having merged my identity with his just to ultimately be betrayed.

I thought about the bond I feel with my new husband, the deep, abiding love that I know is pulling us together.  It's a love that's already been tested when my fears and insecurities are hard at work pushing me away from him, my memories of the pain of my heartbreak leading me.  I thought about the courage that it's taken to love again, and the warmth that I have been rewarded with for giving love another try.

With a trusting plunge, I signed away my name and became Andrea Lynette Lopez.

As I exited the building I saw the mother of the 16 year old girl waiting on a bench outside for her daughter to return from the test.

"I think I'll wait with you."  For 20 minutes I stayed with her, until their white Tahoe pulled in behind the back of the building.

The woman looked at me nervously.  "I'd better go see if she passed."  I watched her walk through the building toward her daughter and I felt a surge through my chest as I realized this moment is one I'll someday share with my daughter, but will never share with my son.  A beaming smile stretched across the young girl's face and I could see her nodding, her mother hugging her.  Her mother took her by the shoulders, and I saw her point back at me and momentarily, they both turned and signaled to me with a thumbs up.  I smiled, waved, and headed back to work.  I had just witnessed the opening of a whole new world, a brand new stage of life.

As I walked back to my office I looked at the temporary paper license in my hand, with my brand new name, part of my whole new world. It's a world that feels  like it's where I was always supposed to be and sometimes I wonder what took so long to get there.  I've traveled a bittersweet road. Still, I think it's been more sweet than anything, and it gets sweeter every day.

Marcos Lopez, I, Andrea Lynette Lopez, love you so much.  Thank you for making me your wife.

Tuesday, November 4, 2014

Rage Against the Dying of the Light

"Isn't it beautiful?" Sean asked.  "It's like he's saying goodbye to the world."

We were laying on our backs in his studio apartment, all of the lights off, with just slits of sun shinning through the blinds and a candle burning.  He said that was the only way to listen to Johnny Cash's last recording, "When The Man Comes Around," a perfectly selected combination of one new song, a handful of personal hits, and a few covers.  My favorite Johnny Cash performance can be found on that album, his late recording of "Give My Love to Rose."

Though wise men at their end know dark is right. . .

Even when imagining the darkness, I can still see in my mind the layout of the apartment, the location of the bare furnishings, the book of Dylan Thomas Poetry on the TV stand.  The box of his own poetry, open on the day I discovered his body to a poem he'd written years back - His goodbye.

Rage, rage against the dying of the light. . . 

The two years after Sean's suicide when he was just 26 years old were followed by a cluster effect of regulars from Charly's who, one way or another, brought about their own end.  First Scotty, 25, who shot himself; then James, 25, who also shot himself; then Nick, the first guy I dated after Sean, also dead at 25 from a fatal heroin overdose.  After law school my bar exam study partner and Trial Advocacy teammate, Crystal, also shot and killed herself just weeks before sitting for the bar exam a second time.

The ten years since Sean's suicide have left me wondering every day how life would have been different if he had just stayed.

Do not go gentle into that good night. . . 

New attention has been brought to physician-assisted suicide with the very public terminal illness and suicide of Brittany Maynard.  The debate has been framed as though she is somehow different, somehow some exception to what it means to kill yourself.  She's some sort of martyr because she allegedly had all of her mental facilities when she made the decision to end her own life.

I can't accept that framework.  I can't accept that the same world that has been telling me for years that Sean was selfish, now finds Brittany Maynard's decision to check out on her family some fort of selfless act of love.  Maybe it's not the hip thing to say, but Brittany Maynard was a coward.  Brittany Maynard had the gall to go to her parents and say, "I'm going to do this.  I'm going to kill myself.  And I hope you'll stand by me.  And I'm doing this for you."  What is a parent to say to that?  What would I say?  I hope that I would put my every effort into changing her mind.  I hope that I would take her hand, and say to her, "You are not a burden to me.  You could never be a burden to me.  I love you, and I will care for you, always."

"But it's not that simple," the world says.  "She was terminally ill," we maintain, as though that is some excuse for cutting our numbered days short.  "She was dying anyway."  Well so are you, and so am I, because we're human, and that's what we do.  But until we're dead, we're also living.  So where does the line begin and end? It's been dangerously blurred.

She was dying anyway.  Gabriel was dying anyway.  Yet every day that he was here on this earth was another day that he got to feel the Bakersfield June heat on his skin, the warmth of his mother's arms, the strength of his father's hands, the care in his grandparents' embrace.  Every day was filled with love.   Brittany Maynard's life was filled with love, and loved ones.  And she turned her back on them.  She robbed them of the opportunity to care for her, nurture her, look after her in her time of need.  She robbed them of the opportunity to do the things a mother and father sometimes must do for their child.  She stole from her husband the chance to be there, even in sickness.  She stole herself from them.

I resent that Oregon calls its physician-assisted suicide laws the "Death With Dignity Act."  The name implies that to die any other way is to die without dignity.  To die old, or sick, or requiring care makes you an undignified burden on those around you.  Where is the dignity in shirking our responsibility to the ailing?  Where is the dignity in bringing your own curtain down?  Where is the dignity in asking your friends and family to stand by while you kill yourself, purporting that you are doing this both for them, but also to die on your own terms.  Just yours.

She was dying anyway.  He was dying anyway.  And that's supposed to provide us with an excuse to kill.  The willful, deliberate taking of someone's life is no more than killing.  Life is not ours to end at our human whim.  Not yours, nor anyone else's.

I'm not mad at Sean.  I've never thought he intended to be selfish.  I understand his desperation.  I'm just sorry I didn't hear his cries for help because if I had, I would have cared for him.  I would have begged him to fight.  I certainly wouldn't have pulled the trigger.  The doctor who prescribed lethal medication to Brittany Maynard to end her life simply pulled a trigger.

Sean was suffering.  Brittany was suffering.  You suffer.  I suffer.  Gabriel suffered.  THis life is not without its sufferings, and our suffering is not for nothing.  Our suffering is an opportunity to grow in strength.  The suffering of those around us is an opportunity to show compassion.  As a Catholic, I believe that the suffering we experience on earth helps to free the souls of those in Purgatory.  When I recall the suffering of my son during his last day on Earth, I pray that his soul helped set someone else's free.  Maybe even Sean's.

My son suffered.  He struggled for several hours, though he was medicated with compassionate care from our hospice providers to minimize his suffering.  I suffered.  I held him in my hands, as though I was holding my own beating heart, and I comforted him in his hour of dying.  His father and I held him tight and gave him the freedom to go, told him he had been stronger than we ever could have asked, and told him to take God's hand.  He stayed because he wanted to stay, because it's our basest human instinct to hold on to this life, because no matter what you believe happens on the other side of death, one thing is certain and that is that this life is only temporary.  Right here, right now, it's all we've got.

Death will take me kicking and screaming.  Death will take me from my bed only upon a fight, and I pray that's a fight that lasts 100 years and that at the end of that battle I am surrounded by love.  And as my body gives way to death I will pray that I have done enough in this life to see my son again and I will look forward to that moment when our eternity together begins, but still, I will fight for every last breath.  I will fight because Sean didn't.  I will fight because Gabriel did.

Do not go gentle into that goodnight,
Old age should rave at close of day;
Rage against the dying of the light.  



Rage.  Fight.  Live.

Saturday, October 11, 2014

Braving Anencephaly





Dear Expectant Mom,

You're so scared.  Your doctor just forced you to consider the unimaginable:  The child you are carrying is not expected to live more than hours, perhaps days after his or her birth.  You are now living a mother's nightmare.

You were so excited.  You have already imagined your baby boy riding his first tricycle.  You have dreamed of him as a starting pitcher for the Seattle Mariners.  You're mind has already seen your baby girl in her first dance recital.  You can already see her in her lab coat, curing cancer.  Your dreams have been stolen.  Your heart has been crushed.  You're not really sure how you're going to go on.  You're not even sure how your feet are still moving forward, how your lungs are still taking in air, how your mind was able to tell your fingers to type the word "anencephaly," but your brain is craving answers to your questions.  Your brain wants to know why your doctor has just told you that your child has no brain.

So here you are.  Reading the words of a woman who, nearly four years ago, stood where you now stand. And as you read, perhaps your baby is already moving inside of you.  And his kicks are so strong that you just can't believe what the doctors have told you, that he cannot survive.  One moment, you'll know loud and clear what he is trying to tell you: "I'm here now."

On January 31, 2011 my son Gabriel was diagnosed with anencephaly.  I didn't make a choice to carry him to term.  Gabriel is not a choice.  He's my son. I carried him for the next four and a half months because I had been charged with his care. I didn't know if he would get to feel the warmth of his mother's arms, the strength of his daddy's hands, the sun on his skin, the cool trickle of baptismal waters on his chest.  But I was going to do everything in my own power for him to have that opportunity.  I carried him, cherishing his precious kicks, his rhythmic hiccups, his growth.  I looked forward to meeting him and after a stubborn 54 hours of labor, he blessed me with ten of the best days of my life.  His brain, fully grown and sitting outside of his deformed skull, was the most beautiful thing I've ever seen.

You don't feel strong right now, and you don't feel brave, but you are.  You feel helpless, but you're not.  You're a mom.  You can do anything.

I wish I could tell you that if you just take this journey, everything will work out just fine.  A year after Gabriel's passing, almost to the day, his father and I permanently separated, and later divorced.  I looked for comfort in my son's memory, and he looked for it in the bottom of a bottle and the fissure in our relationship that began the day Gabriel was diagnosed, cracked and washed us over until we were drowning in anger and sadness and resentment.  Gabriel's father and I live on opposite sides of the country now.  He is sober.  We've both fallen in love with someone new.  He is remarried; I will be remarried soon.  Life's thrown us some curves. It always will, for him, for me, for you.  But we've braved them.  We're doin' alright.

I miss my son every day.  I feel his absence.  I feel it in my bones.  I feel it in my soul.  And my mind is full of what-ifs.  What if he were here today, 3 years old, with sticky hands and boundless energy?

I look at my 5 month old daughter, Eden.  Her name means Paradise, and she has been.  But even in paradise, something is missing.  Even as she's begun to join us at the table, eat solid food, I see the empty chair where her big brother would be and I ache.  I will ache until the day I die, and I can only pray that what I do on this earth will someday be enough to earn the opportunity to be reunited with my son.

You're scared, because you don't know how you're going to do this, or even if you want to do this.  And I'll I've done is tell you how hard it's going to be. I only told you the truth.

But consider this:  We are only promised life.  We are not promised years, or even days.  We are not promised that this life will be free from pain.  We're not promised life will be good, or easy.

If you're standing where I stood on January 31, 2011, I urge you to give your child what is promised to him.  Give him what only you can give.  Give him life.

And I promise you this:  Whether your child is stillborn, lives for minutes, hours, days, or even years with anencephaly, you will NEVER regret your decision to give him the time that is his.  You will never regret knowing your child, holding your child for as long as you can, giving him everything you can.  In this child that the doctors have told you is hopeless, you will find a great hope. You will find in this experience a strength you didn;'t know you have.  Take it.  It's yours.  You will find peace.  You will find the greatest love you've ever known.

Sincerely,
Andrea L. Hernandez
Mommy to Gabriel Michael Gerard Cude, June 10, 2011 to June 20, 2011 - Ten Days That Changed the World.




Wednesday, September 24, 2014

Blip

Dear "Mom 2":

I remember when you first referred to yourself as "Mom 2," in a routine e-mail.  I was taken by surprise; you already thought of me as your daughter.  I was not prepared to think of you as my mom.  Nevertheless, I was warmed by the gesture.  I was going to marry your son.  We were going to be a family.

Somewhere along the way, you disowned me.  Was it when I made the decision that you wouldn't have made, to carry my precious son to term despite his prognosis?  Was it when I urged you to come out for Gabriel's birth, the birth of your first born, and thus far only born grandchild?  Was it when I brought him home and gave him a life and death with dignity, although it hurt to spend ten days wondering how much time was left?

You just don't know - you'll never know - what you missed when you chose to miss out on Gabriel.  You can't imagine the love the filled the room, along with Gabriel's two parents, his two grandfathers, and two of his three grandmothers - but not you.  You'll never know the peace that was given to us, despite our loss, when we had the opportunity to meet that little boy.  You'll never know the most incredible person your son and I have ever met.

I think of your beautiful Southern home that I loved so much to visit, and the pretty details of your decorating, and the fresh scent of your linens and towels, and the family photos that line the hallway.  And I know that mine is no longer hanging there.  And I know that your only grandson's never has.

I know what it is to be a mother.  I know what it is to love your children above anyone else, and desire their happiness above anything else.  But I don't know how you, or your son, turned your back on me so coldly.  You both turned your back on me when I had already lost the biggest part of my world.  He just stopped loving me, and if you ever loved me too, it seems you also just stopped.  I was just a blip in the timeline of your lives.  Blip. After you had the nerve to call me your daughter, to compare our relationship to that lifelong, inevitable bond. And then you turned your back.  Blip.

I recall, fondly, watching you and your son dance to "Simple Man" at our wedding.  Today, the song causes me to swell with mixed emotions as I think of the simple conversation I will never get to have with my baby boy.

You taught your son to tie his shoes.  You taught your son to cook.  You taught your son to respect his elders.

You love your son; and I love mine.  But somewhere along the way you failed to teach your son what I never had an opportunity to teach mine:  You don't leave.  You don't give up.  You don't love with conditions.  You don't run when times get hard.  You brace yourself to face them.  You love your wife, even when it's hard.  Your promise is everything, until it's broken, and then your promises never mean anything again.

You failed to tell him not to hurt your daughter. You failed to feel your daughter's pain.

You called me your daughter.  But you never called me to ask how I was doing.  You didn't offer your shoulder to me to cry on; instead you offered my partner an escape.  You offered him safe harbor to run to when he abandoned me.

You called me your daughter.  But I don't regret that I could never call you my mother.

Today I took the sapphire earrings that you gave to your son to present to me when he proposed.  I opened the velvet box and observed the untarnished glitter of the metal and stones.  I closed the box, and placed it next to me in the passenger seat of my car and as I drove to work, I rolled down the window and threw the box to the side of the road.  I hope someone finds them and hocks them and either has a warm meal or gets very drunk tonight - Whatever makes him or her happy.

I don't need your earrings.  I don't need your "mothering."  I don't need your conditional love and support on your terms.

You called me your daughter, but some "mother" you are.  I suppose, though, we all take lessons from even the worst of mothers.  Thank you, for giving your son somewhere to run when he abandoned me, so that today I could be free to love the people who are worthy of my love.  Thank you for cushioning his blow and leaving me to flail, so that I could grow stronger and love harder and live better.  Thank you, for teaching me the kind of woman I never want to be - It's made me the kind of woman I hope I'll always be.

Sincerely,
Andrea


Sunday, September 21, 2014

Eden



Eden Capwell  was the blonde protagonist in the 1980s soap opera Santa Barbara.  And she was cool.   So when I was 13 years old I decided that when I had a daughter, I would name her Eden just like the character from the by-then-cancelled soap opera.

The name sorta stuck.  Every time I was pregnant, I considered it for the baby I was growing.  After the miscarriage and while carrying Gabriel, I stumbled across the name "Eliana," "The Lord answers our prayers."  It became Gabriel's selected middle name, in the event he were a girl and my Eden-to-be.  After Gabriel's diagnosis but before he was born, I began to sense that the next time around I would have a perfectly healthy baby girl, and she would be my Eden Eliana; my paradise, and the answer to my prayers.

But paradise was a long way away.  The life I knew was turned upside down before I could find myself living the life I dreamed of.

Although Eden's gender wasn't officially revealed until she was born, I knew in my heart she was a girl.  I was occasionally pricked with doubt as most people said I "looked" like I was carrying a boy.  But then one afternoon as I was walking down the hall from my office to the restroom, when two women, one with a little boy and a little girl in tow, stepped into the hall from another office.  The little boy looked at me and immediately ran to me.  He was probably about three.  He stayed with me even as I passed his mom, offering me the piece of chocolate in his hand, and never taking his eyes off of me.  That moment imprinted on me as the moment of greatest clarity that the baby I was carrying was indeed my sweet Eden.

Sometimes I look at Eden and I still can't believe she is real.  After all of the years, and the ups and the downs, and the hell that was this life without my son, my daughter came along and brought me Heaven on earth.  The baby girl I first imagined when I was 13 years old is here, and sometimes I still can't wrap my mind around her.

She is every bit my little girl - Stubborn, determined, at once independent and needy. I'm never quite sure what to do with her and most days I'm pretty sure I'm doing it all wrong. But until Eden, life never felt so right.