Thursday, June 19, 2014

The Blessed Broken Road

Ten-plus years ago in San Diego, I lived with an ex-boyfriend named Luke.  Letting him move in with me was, to say the least, stupid.  He had a number of personal problems. I was bouncing back and forth between denying the rape, and feeling the burn of the memory while in a drunken stupor.  Unsurprisingly, we crashed and burned.  But I loved Luke, and I wondered about him for years.  I had a need to know that he was okay, and I had an abiding faith that God would place him in my path again when we were both happy and healthy.

About two years ago I looked him up on Facebook.  There he was.  I sent him a friend request.  He sent me a message.  "How are you?  I think of you often, and hope you are doing well."  He passed through town sometime that summer, and asked if he and his son could meet me for dinner, and I did.  I walked into that encounter with a hope, and I got what I'd hoped for:  Luke had a stable life, was working hard, had resolved many of his problems.  He thought of me over the years not because he thought we were meant to be or he wanted to get back together, but because we mattered to each other, and we mattered in the course of the other's life.  We took something from our experiences together, and that something informed who we had become.

Luke and I said good-bye with a friendly hug.  We remain friends on Facebook.  My last message from him was a kind congratulations on Eden's birth, sent on Mother's Day.

Despite my fervent wishes, Ben has never really had it in him to wish me a happy Mother's Day.  I've always wondered why, and think it cruel that he can't muster those three words, but I guess the real question is why I want to hear or read those words from him so badly.  I've put my finger on the answer:  I want to know that I mattered to him.  He mattered to me.  I want to know that our child was the product of mutual love and respect.  I want a reason to believe that our son was not broken because we were broken.  I want to know that I was special enough that ten-plus years down the road he'll still think of me and our son, and our brief moment in time.

Last night as I ran a knife through leaves of basil in a chiffonade, creating ribbons of green, I recalled my cooking lessons with Ben and learning classic knife cuts.  I thought of the words incorporated into my vocabulary and the songs in my library and the tools in my kitchen which are the result of my relationship with Ben. His influence and his memory peppers my life.

He is one of the dips in my broken road, ranking the most noteable because of the level of our commitment.  We stood before God and promised each other our lives, and now our vows have made a liar of me and I have become a promise-breaker.  My words don't seem to mean much anymore.

As I stand on the precipice of making that same commitment to Marcos, I wonder if I am to be believed.  I wonder if I can believe in him.  I wonder if I've finally come to the end of the broken road.

Over the duration of my maternity leave I have been watching the television series "How I Met Your Mother," the 9-season story of one man's quest for love.  Ted Mosby is perhaps the most relateable character I have ever encountered on TV.  A man after my own heart, he has searched high and low for love, allowing himself to fall deeply and sometimes carelessly.  Every time he was in love, it was genuine, even if it wasn't meant to be.  I am approaching the final two seasons, and as I do I know that they will result in Ted finding his future wife under a yellow umbrella.

How fitting that Ted, my television parallel, would find love under an umbrella, with rain pouring down around the two of them.  Won't there always be rain?  And wouldn't it be so much more bearable to have someone to face the rain with?

Marcos must be what waits for me under the umbrella, but I find myself more guarded with him than I have ever been in my own search for love.  He is probably the least-risky investment my heart has ever had to make.  The same is true of Eden.  But I am callused from having loved and lost and I am still scarred by the depth of those losses which have me questioning who I am, whether I am worthy of love, and whether I have it in me to return that love.

I think of our close encounter, the night we met at Charly's 8 years ago, and what has filled those interim years, and I wonder why that couldn't have been our beginning.  Why couldn't we start right then? It's not fair.  Life's not fair.

I am sometimes ashamed of the extent of my past, of the number of dysfunctional relationships and the number of times I have permitted my heart to be broken.  I feel that each of those events have stripped the woman that Marcos deserves.  Still, he seems to love me anyway.  He seems to be unafraid of my scars. He seems to be willing to stay.  It seems I matter to him now, and I will always matter to him, which leads me to believe that maybe God has indeed blessed the broken road that led me straight to Marcos Lopez.

Friday, June 13, 2014

No Footprint So Small

"How long ago was this?" the man next to me at the bar asked about Gabriel's birth and death.
  I was at Amestoy's to speak with the bartender, Jessica, about advertising Gabriel's Magic Mullet Run.  The fundraiser will benefit Duke University Molecular Physiology Institute's research study of anencephaly.

"He would be three in June."

"And you're still on this?"

"What do you mean?"

"You're still working on this condition?"  He kept looking at the wallet-sized picture of Gabriel that accompanied the sponsor request letter.

I find that people are frequently in awe of my efforts towards research.  It's a feeling that you have to experience to understand, but it's an experience I wouldn't wish on anyone, which is exactly why I continue raising funds to find a cause, and perhaps someday a remedy or at least something beyond palliative care for babies with anencephaly.  Until you've lost your child to the condition, you can't understand the burning desire to protect even one more family from that grief.  Until your child dies before he can walk, talk, run, or write you can't understand the fervent hope that he will be remembered although his time on earth was short.
There is no footprint so small that it cannot make an imprint in this world.

I'd heard the above platitude many times before it applied to my son Gabriel.  It was nothing more than a platitude until my son started leaving his footprint all over the world.

The motivation to honor his memory, broaden awareness, and promote research isn't just something that lives in me.  I've been inspired by the women who have shared this experience with me.  Missy Axt, after the birth and death of her daughter Grace Mary, makes items for NICU babies and does presentations about anencephaly.  Jenny Lees, Palmer Joseph's mother, knits caps for NICU babies, and promotes organ donor awareness.  Bethany Conkel, mother to Amalya Nathaniel, is also tireless in her efforts to raise awareness of infant organ donation.  Amy Hale creates memorial memes for other anencephaly moms, after her daughter Makenna was born with anencephaly.  And Kelly Alvstad,  whose son Andrew Layne also lived for ten days, does fundraising for the March of Dimes.

Each of us have been inspired by the woman who has done the greatest amount of work towards anencephaly awareness and support for families who carry to term, Monika Jaquier.  Monika's daughter Anouk was born with anencephaly nearly 14 years ago.  Monika lives in Switzerland, and when Anouk wa diagnosed Monika learned there was very little support for families who carry to term, and a tremendous push to terminate the pregnancy.

Monika Jaquier created the network of support that led Missy, Jenny, Kelly, Amy, Bethany and I together through the adverse diagnosis of our children.  These women met their adversity head-on.  I want to be like these women when I grow up.

My motivations are also slightly selfish.  This time of year surrounding Gabriel's birth and death can be very bittersweet.  The stillness can bring out the bitterness.  It helps to have something to focus on, something to work towards, something that makes me feel like I'm fixing things because I couldn't fix my little boy.

Tomorrow is Gabriel's Magic Mullet Run.  The mullet theme was inspired by the movie "Joe Dirt," about a man born with a piece of his skull missing.  Joe was given a mullet wig, which fused to his head and protected his brain.

I wish it were that simple.  I wish Gabriel could be here with me now, rockin' a mullet.  But since he can't be, I've done my best to get as many people as I can to rock that mullet for him, in hopes that one day we can find the real-life remedy.

Tomorrow friends, family, and local runners will leave footprints in the trails at Rio Bravo Ranch in Bakersfield, because a little boy was born with anencephaly and left his footprints in this world.

Tuesday, June 10, 2014

The Color Blue

I haven't woken to anything but the sounds of Eden since May 3, 2014, the day she was born.  Still, the first thought to cross my mind was that today is June 10, 2014, Gabriel's 3rd birthday. At this time three years ago I was floating on an epidural cloud, knowing my son would be born that day, anxious to see the face of the boy that won my heart the moment I learned that he was on his way.  I'd waited my whole life for that day.  I was made for that day.

The course had been set, and I'm not sure when.  Maybe it was that day that Ben sat down next to me at Shooters, or maybe it was the day Gabriel's neural tube failed to close.  But I think I had been on this path for a long time, since I was a kid watching that "Not my Richie!" scene in "La Bamba" and tears would sting my young eyes as though I knew that someday I would experience that grief.

Now here I am, a grieving mother, learning every day how to live when my baby boy does not.  It's a daily struggle that never really becomes easier, just more familiar.

My life right now is perfect.  It's perfect, even though Eden frustrates me and Marcos drives me crazy and Gideon busted out of the yard last night and made me chase him down the street.  My life is perfect, and full of color.  I'm living in a rainbow.

When I pull into my driveway, the blueberry bush from three years ago greets me.  The bush was purchased during my pregnancy with Gabriel, and I had given up on the brown, dried out plant when my sister discovered a green shoot at the bottom.  I decided to give the bush a chance.  I trimmed back its dead leaves and watered it and fed it Miracle Gro.  And now, I have blueberries.

In the last few years there were so many times when I could have given up and changed the course that had been set for me.  I could have terminated my pregnancy with Gabriel.  I could have walked away from my marriage the moment Ben walked away from me, or maybe I even could have just listened to my instincts which gave me hesitation before I got married in the first place.  Then maybe I would have shared my experience with Gabriel with someone who would still be around to share it with me today.  Or maybe I never would have had Gabriel at all.

I could have ignored that first e-mail in my inbox, the one from Marcos that changed both our lives.  But then what would I be missing.

The journey that has brought me to this point in my life has been bittersweet, but when I look around there's really nothing more that I could ask for.  I could say that I wish my son were here now, but such a wish is fruitless.  He's not here.  He can't be here.  No amount of wishing can bring him back to me, can undo our path and make him whole.  Gabriel is who he is, was what he was, is and was everything he was supposed to be.

My son had anencephaly.  He lived for ten days, against all odds.  He died in my arms and I miss him dearly every day of my life and I feel it in the deepest part of myself.  Still my life is perfect, and I might never have known that it is perfect if I had never known the color blue.

Sunday, June 8, 2014


There are a few things that I have learned since Eden was born:  First, Target brand diapers are my favorite.  Second, I can in fact still get to my destinations on time, but I will very likely have forgotten something in order to get there.  Third, I am even more vain than I ever realized.

It was my vanity that motivated me to continue breastfeeding Eden the first few days after birth.  I realized right away that I hated it.  My first indication that I would hate it was in the hospital, when I learned that every time I tried to nurse Eden, I felt exposed and vulnerable.  The feelings were likely remnants from a sexual assault that took place 13 years ago, an experience that has mostly been dealt with but still makes its occurrence known in these types of situations.  I refused to nurse Eden anywhere but home, which kept me tethered to my house and unable to escape for more than two hours at a time.  Even then, I couldn't enjoy a feeling of closeness to my daughter because I was so overwhelmed by the feeling of vulnerability, and the paranoid concern that someone could attack Eden or me at any moment, and I would be exposed an unable to protect us.

Still, I pressed on, proud that my daughter had never ingested a formed product, because I knew that breastfeeding was the swiftest way to lose my baby weight.  As my belly, stretched by the weight of carrying a 9 pound, 11 ounce child, shrunk dramatically nearly day by day, I had all the incentive I needed to continue.  After a couple of weeks, I began pumping in order to build up a surplus so that I could leave with Eden without worrying about getting back in time for her feedings.  I was thus introduced to new horrors, strapped to a milking machine like a dairy cow.  I hid from view, never permitting anyone but my unknowing infant to see me using the breast pump.

Then one day I realized that I couldn't hold my daughter without her wanting to nurse from me.  She wouldn't cuddle without being fed first.  She go from peaceful sleep in a strangers arms to a screaming fit when she was transferred to me, clearly wanting to nurse even if only for comfort.  I'd wanted, during pregnancy, to be a MILF when it was all over, but I'd become a MILFF, a mom I'd like to feed from.  I was just a human buffet.

I developed an aversion to breastfeeding, particularly at night.  I grew agitated with Eden's feedings, and the more agitated I got, the longer she wanted to feed, probably because the more stressed out I got, the harder it was for her to get milk from me.  I began to consider discontinuing with nursing and using formula.  The idea would cross my mind frequently but waqs always dismissed.  I was physically able to breastfeed, and I couldn't come up with a "good" reason to stop, especially knowing how many women struggle to breastfeed.

We'd had a box of prepared formula in our cabinets since before Eden was born, in case she or I couldn't nurse.  I could see the box every time I opened the cabinet and would think about how easy it would be to just give her the formula.  But I was stubborn, and proud.  And suffering emotionally at nearly every feeding.

Last night, when Eden was 5 weeks old, I relented.  I simply said to Marcos, "Let's try the formula."  Marcos fixed a bottle for her, and I watched with tears in my eyes as he sat down to feed her.  After having had only breastmilk for the first 5 weeks of her life, my baby was drinking formula, and I was sad and relieved at the same time. I couldn't watch for long, and went outside with my dogs, who still needed me.

There's a big cultural push these days for women to exclusively breastfeed, but I didn't continue to nurse Eden because of that cultural push.  There's also a push to wear skinny jeans, drive a hybrid car, and abort anencephalic babies, and I don't do any of those things.  I think I kept up nursing out of stubborn pride.  I have always asserted that I can do anything for my babies, so I should be able to do this too.  It finally occurred to me that stubborn pride isn't a very good reason to make myself miserable.

Today we have alternated between breastmilk and formula at every other feeding.  I've missed our quiet moments, but I've enjoyed having her look me in the eye during her bottle feedings as opposed to having her face pressed against me in hungry indifference.  I've been able to enjoy watching Marcos feed our daughter several times today, and I've enjoyed the freedom that has come with not being saddled by the obligation to nurse.

I love my daughter deeply, and have loved her since long before she was born or even conceived. I wanted to be able to give her the world.  I'm going to have to settle for giving her my love, and hope that will be enough.

Tuesday, June 3, 2014

Be Not Afraid

"You'll outgrow it," my mom used to say of my crippling and irrational fear of the dark.  By now we both know that's simply not true.  I'm 32 years old, and still sleep with a nightlight.

As the words to "Be Not Afraid," one of the hymns played at Gabriel's funeral, were sung at Mass during Communion yesterday, the tears flowed from my eyes as I recalled my little boy who knew no fear.  Cynics might say he was a baby, that he didn't know fear or any emotions, really, because his mind wasn't developed and in particular, Gabriel's anencephalic mind had sustained developmental failure and he was incapable of ever feeling any emotions.  But, you only had to be around Gabriel in those final hours to know that he was fearless.  There was just something about him that told you that he was not afraid.

My son was the bravest person I ever knew, and so I feel so inadequate now, an adult with a fear of the dark.  Thanks to Eden's arrival I find myself in at least semi-darkness more thank I ever have, lest too much lighting wake her and also keep me from coveted sleep.

Eden has been, to say the least, a challenge.  Most of the challenges were expected, and no different than what most parents face.  Interrupted sleep, crying for unknown reasons, and other newborn struggles were anticipated.  What I didn't expect was the difficulty I've had connecting with Eden.

Throughout my pregnancy with Eden, I never felt connected to her the way I did with Gabriel, a connection he and I shared from the moment I learned I was pregnant.  I suspected the distance was my way of defending myself against my fears that I would lose her too.  The trouble, now, is that I am still not completely convinced that she is here to stay.  I find myself just shutting down , especially when someone else is around to handle her.  I sense that she sees me as nothing more than her personal buffet, and it hurts.  With my defenses on red alert, and her carnal survival mode switch turned on, we are living in nothing more than a parasatic relationship, and I crave more.  Ironically, it is that nursing relationship, the one that is supposed to bond us, which seems to make it impossible for her to find comfort with me any other way.

This became quite evident when I went for my post-partum exam, Eden in tow.  She started crying in her carseat and I worried that we would have to excuse ourselves from the appointment, knowing that she refuses to be comforted simply by my arms.  The medical assistant offered to hold her during the exam, but I warned that her crying would quickly escalate to screaming and advised that it was best if we left.  When I agreed to give the assistant's plan a chance, I nearly cried when she was able to comfort Eden to sleep.  The assistant looked at me helplessly.  "I think she was just already tired."  She seemed to want to convey to me that I am not a bad mother.  Still, the thought crossed my mind, not for the first time, that I could walk out of that office and never see her again, and she would never miss me.  Anyone could replace me.

When the exam was complete the nurse practitioner said to me, "As a first time mother it can be overwhelming.  I see that you're feeling that way."

"I have a son."

"You. . .?"

"I have a son.  He had anencephaly."

"You have a son.  But he didn't make it.  So as a first time mother. . ."

I never see myself as a first time mother, I guess because I'm not.  I'm overwhelmed, yes.  I'm hormonal, too.  I'm also extremely conflicted, because people do shit like explicitly ignore my assertions that I was a mother to my son, who was real and alive too, and he's gone from this earth but not gone from my heart.  I know that people mean well when they tell me that Eden is here now, that this is my life now and she is its center, but the notion has not been so easy for me to adopt.  He should be here, an almost-three-year-old pain in my ass.  Gabriel should be clinging to the hem of my skirt, begging for attention when I am feeding Eden, poking at her just when I've calmed her, waking her from sleep with his noise.  His absence is felt just as his presence would be.

Everything about Eden seems so contrary to Gabriel. Her cries are a stark contrast to his silence.  Her eyes, with their surprising alertness, take me back to Gabriel's blank, blind stare.  Even her dark hair, covering her complete skull, remind me of the absence of Gabriel's skull, which was circled with blond hair.  And my inability to comfort Eden, and the fact that I am replaceable for her, reminds me of how Gabriel and I simply seemed meant to be.  He needed me, not quite as much as I needed him.  Together, we were fearless.

Eden doesn't need me.  That scares me.  That scares me more than Gabriel's impending death ever did.  I see in her my own strong will and determination, even now when she is only one month old.  I don't know how to love this independent reflection of myself, because I am so afraid of yet another unrequited love. As much as she resists me, I am still deeply in love with her, and I'm afraid she will never love me back.  I'm afraid she will break my heart.

I, ever the romantic cynic, remain dedicated to trying to earn her favor.  I continue to nurse her, although I hate it and don't want to. It's the only thing I can do for her that makes me special to her.

I continue to walk through the darkness for Eden, uncertain of what might be out there, even in my own living room.  I continue to hope that someday she'll appreciate the fears I had to face to carry and raise her, and I will be special to her.  I continue to hope that she'll learn to love me in return.