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.




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