Rebecca

On this day in 2008, my first niece, Rebecca Lynn, was born.

Eighty days later, before I could hold her hand, she was gone.

It should be noted that her passing was not a surprise. In fact, the real surprise was that she had made it home from the hospital, much less through her first day. She was born with severe abnormalities due to a chromosomal anomaly that made life impossible for her frail body. Her death was a thing of mercy. Nevertheless, it was beyond painful for those of us who loved her.

This is where I point out that the same chromosomal anomaly that made life impossible for my darling Rebecca is the chromosomal anomaly that makes my beloved C the special angel that she is. Yes, the two girls, born just over a month apart, (the two girls I had imagined would grow up together, thick as thieves, favorite cousins), had the same unbalanced translocation. On paper, they look identical. And yet, my daughter lived, and my brother's daughter did not.

When Rebecca passed, C had not yet been diagnosed with any medical conditions. We hadn't even begun to suspect them yet. We certainly didn't know about her chromosomes, as the geneticists had all been crystal clear when they said there was ZERO CHANCE I could be a carrier for the anomaly that affected my brother's children. I remember at her funeral, all I could do was hold her hand and stare into her beautiful little face. A face that shouldn't have been beautiful because of the cleft lip and flattened nose, but that was somehow the most angelic face I had ever seen. I ached for not having been able to fly out to Texas to hold her before she passed. I wept for the loss of the best friend my daughter was never going to know. I hurt for my brother because I had my daughter in my arms, and he had his daughter in a casket.

Earlier today, I was planning what I was going to blog about tonight. My childhood alter-ego, the first time a stranger recognized C's disabilities (Wednesday), my long day of class... And then, on my way home from a night out with friends, I checked my email and saw the birthday email my mom sends out for every member of our very large extended family. A birthday note in remembrance of Rebecca. My Rebecca. My brother's Rebecca. The Rebecca who forever changed my life without breathing a single breath in my presence.

My heart still breaks.

I stumbled onto this old post from my retired blog...

It was written 3 years ago, but it still speaks to me.  Of course, things have changed since I wrote it.  C's medical issues are just part of everyday life, not the constant struggle they used to be...  The death of my niece Rebecca seems like a lifetime ago, and while it still makes me sad, it doesn't eat away at me anymore.  And I've returned to a heavily medicated state to control my moods and help me be the best wife and mother that I can be.  Still, though.... It's good to remember where we started, to look back and see how far we've come....

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It's just hard right now.  I have to keep acknowledging that it's hard, which I hate, and reminding myself that it's *okay* that it's hard right now.  I shouldn't be fine with everything--not yet.  It's normal to be hurting.  Healthy, even.

I don't know why I felt such a connection with Rebecca.  I can't explain it; it was just something that was THERE, that was a part of me.  Losing her, particularly before I got a chance to meet her, hurt me in a very real and deep way.  Mom described it as still being "raw," and I guess she's right.  It is.  The slightest touch in that area stings and burns like a bitch, and it leaves a resounding dull ache that can last for hours.

Ceili can't see.  I mean, she sees SOME, but I lose hope that she'll see very much.  Or maybe it's not hope I'm losing; maybe I'm just moving past the denial.  In any event, it SUCKS, and it breaks my heart, and I wish I could do something--ANYTHING--to change it.  Same with everything else.  Her chromosomes:  can't I just go in and delete that extra material?  Undo that little glitch in her development?  I don't have high hopes after her MRI and xrays today; something about the shift in the xray tech's demeanor between when we walked in the room for the scans and when we left ten minutes later tells me he didn't see the kinds of things we had wanted him to see  (or, rather, that he saw the kinds of things we didn't want him to see).

I'm feeling like a failure.  Like a failure as a mother, because my body couldn't produce a healthy little girl, and because I can't have any more children without significant medical intervention to ensure that they're free of this anomaly.  Failure as a wife, because I couldn't give my husband a healthy baby, and I can't give him more babies without said intervention.  Failure as a woman?  I don't know.  I know better, but I just can't shake the sense that this is ALL MY FAULT.  Perhaps Asher would have been better off with someone else who could give him healthy babies the old-fashioned, normal way.  But then Ceili wouldn't have been born, and even if she isn't the typical picture of a "normal" baby, she's still beautiful and incredible, and I'm eternally grateful that she came into this world.  

I'm having a hard time talking to Asher about this stuff.  It seems the moment it comes up, I either start to cry or begin making inappropriate jokes about it, neither of which is particularly conducive to a constructive, healthy discussion of it all.  I'm clearly just not coping with it yet.

I wake up.  I feed Ceili, I change her, I schedule her doctors' appointments, I play with her, I love on her, I put her to sleep at night...  I do everything she needs me to do.  That's what keeps me going, what maintains some illusion of normalcy in my life.  It's easy to appear strong and composed when I cannot do otherwise and still care for her properly.  That doesn't make me FEEL any more strong or composed, though.  

I feel lost.  Frightened.  Devastated.  Ashamed.  Guilty, hopeless, angry...  A million other adjectives, all negative.

Through it all, though, I am reminded constantly of the depth of my love for Asher and Ceili.  They bring such joy into my life, peace and comfort and light.  They make the world a beautiful and glorious place, even though my little corner of it seems so dark and dreary right now.

I still have trouble understanding how I "landed" a man like Asher.  He is brilliant, kind, and a rock.  He holds me up when I feel like I can't bear my own weight.  I only wish I could turn to him more right now.  I seem to be stuck in this middle ground between trying to look to him for comfort and trying to offer him some comfort.  I don't want to lean too much, because he has his own share of the weight to shoulder through all of this.  I don't want to cry too much or seem to weak or frightened because I don't want to complicate his end of things any.  At the same time, I don't want to distance myself so much that he can't lean on me a little....  

I don't know.  I don't know what I'm feeling or what I'm trying to say...  I don't know how to handle all of this.  I also know that it doesn't matter if I know how to; I have no choice BUT to handle it.  So I will.  I will do everything I have to do for Ceili, for Asher, for my marriage and for my family....  And I will continue to treasure the incredible man I married, and I will continue to be amazed by this beautiful child we created.  I will continue to find happiness where I can, and hopefully someday soon, I'll be able to smile without it feeling forced.  I'll be able to talk about Rebecca and about Ceili's medical issues without fighting back tears or feeling my throat close up on me.

I just wish I could do more.  Be more.  For Asher, for Ceili, and for myself.

This was not the way I imagined our life with a baby.  I never thought she wouldn't be healthy or that there wouldn't be more "happy accidents" in our lifetime.  

On the other hand, I never thought I would love these two so much that it could actually overpower the mood swings and keep me stable without medication.  At least I can hold onto that and find true, easy happiness--no forced smiles there.