Part I

Part II

Part III

Part IV

Part V

The month between January 28 and February 26, 2009 was the longest and most brutal of my life. I’ve gone through really dark periods before–like the time before I got pregnant with Ben–where I was adrift in a sea of nothingness. Alone. But this was different. I wasn’t alone–hell, I couldn’t let Daver out of my sight without hyperventilating, but I was completely alone. What I faced, what I was going through, I had to do it alone.

After the initial visit with Neuro #1, whom I would (still) have happily married right then and there, we got in to see Neuro #2, who was not a particularly kind man. He wasn’t unkind, just all business. He made a very good case as to why we should have him operate on Amelia rather than send us all downtown to the major children’s hospital there, and we went with it.

But still, we were taking our infant daughter to the neurosurgeon every couple of days and there’s very little that is awesome about that. Or off for another MRI, or to see the pediatrician. We were flitting in and out of doctor’s offices more than a patient with Munchausen’s and it.was.exhausting. The same pitying look, the same shock when the nurse realized that I was not Amelia, that no, the tiny baby bean, barely more than a fetus, was who the Big Bad Neuro was going to see.

There’s a lot of that first month that I don’t remember. What I do remember is sort of snapshots of moments in time.


Giving Amelia her first bath in the baby bathtub and sobbing into her wet (oblivious) head, wondering how I was going to get through all of this. I can still smell the Burt’s Bees soap mixed with her newborn wet-smell and feel the silky smoothness of her cool skin like it was minutes ago instead of months ago.


Grimly making batch after ever-loving batch of cupcakes so that I felt as though I was Doing Something, instead of just waiting to give my daughter over to a surgeon who may or may not give her back to me. I’ve always loved to bake, rarely found a good reason to do so, but I do enjoy it. But this wasn’t about enjoyment, I don’t think, I think it was about action.


Being physically unable to answer the phone as it rang, or talk to anyone who called. Mostly the people who called were calling about my daughter anyway, and the moment she was brought up, I couldn’t talk. My throat closed painfully and I couldn’t choke out words.


Rubbing the soggy spot on the back of her head once I realized that baby hats didn’t quite fit her yet, and weeping softly into her sweet smelling neck, trying to memorize every part of her so that I could always bring her memory with me wherever I went.


Being unable to read the preauthorization of my daughter’s surgery from the insurance company, as it contained words I still cannot say out loud. It made my stomach sink and my skin grow cold and I had to sit down quickly after I opened it thoughtlessly before I passed out. I would have given anything–ANYTHING–to take her place on the OR table.


I remember laying in bed, sobbing as my heart broke into a gazillion shards, as Dave wrenched her out of my arms to take her to get type and cross-matched so that they could have several bags of blood on hand for her surgery. Because she would probably need a blood transfusion. My 8-pound baby girl, my light, my love, needing multiple bags of blood. I wasn’t brave enough to take her to the lab myself so I made Dave go alone, like the chickenshit that I am.


But there were moments of pure light and joy too.

Seeing Alex transform from a baby into a big brother, and watching with pure delight as he shrieked “BABY!!” whenever he saw his sister made my heart swell so hugely that it might have burst in my chest.


One night, while I determinedly mixed up yet another batch of cupcakes (for the record, I do not normally care for cake. Or cupcakes. But this, this comforted me), Dave swooped by, holding Amelia and walking sort of funny. Wondering if he’d gotten his keys lodged in unmentionable places, I asked him what he was doing.

“Dancing with my daughter,” was his reply. “I’m her legs right now, because she can’t use her own yet.”


Teaching Ben to hold his sister and watching as he stroked her head gently and kissed her, enchanted by her, thrilled beyond belief to finally have his baby sister.


Such joy and such sorrow all in one neat package.

Oh, how I wouldn’t give to go back and give that beaten down version of myself a heads up that she would live. I wasn’t crying because I was sorry that this was the way things were, I wasn’t sorry that her life began as such–if anything, it further solidified how lucky we all are, even those of us without feet–and I wasn’t sorrowful because I thought that I would have another special needs child.

I cried, I sobbed, my heart shattered because I thought my daughter would die. And I would have driven her to her death. I could never have lived with myself in that reality. Ever.

If I’d let myself believe for even a fraction of a moment that she would come home with us from the PICU, no matter how blitzed out on morphine or how mentally retarded she was, I wouldn’t have been wracked tears most hours of the day, shaking into my daughter’s body and trying to make sure I remembered every squeak, every grunt and every breath she took. I’ve read other bloggers wish they could go back and tell their teenaged self something or another, but I never had much to say to Aunt Becky vintage 1998. Really, I don’t regret anything.

Maybe I would tell her to stop dying her hair red.

(redheads should be the only ones who go red)

But I digress.

I want to go wrap my arms around the person I was back then, only 5 months back but a lifetime ago, that I can still see in my minds eye, miserable and broken with nothing that could provide comfort or solace. I want to tell her that she would soon watch her daughter roll over, then sit, coo happily in her bouncer and wriggle her whole body with joy when she caught sight of her mother. I want her to know that while things were awful, there would be light and it would be good.

With Amelia, my sweet gooey cinnamon girl, there will always be goodness and light.



Still unsure about this whole solid food thing. But damn, that pizza looks effing fine, Momma.

Part VII


Part IX

5 thoughts on “Precious Fragile Little Thing

  1. I know this crisis has past and time has proven that all will be, mostly, well but that feeling, helpless to save your child, never goes away, it just morphs.

    When I was pregnant with my 2nd daughter, now 18, I started contracting at 12 weeks in. I hadn’t even gained a pound yet so I could feel the contractions from the outside, as well as in.

    And I will never forget the total lack of support from the doctors, “we won’t intervene till 18 weeks so you will probably miscarry”. WHO SAYS THAT?!! When they finally did “help”, I was more afraid of the consent form at the hospital than the contractions. Especially from weeks 24-32! Statistics aren’t good for those babes and you do NOT have the right to refuse treatment, once you sign that form. Scared shitless by a piece of paper!

    Of course your situation is/was much more tangible, thus much more terrifying. A baby you have not seen is still “hypothetical” in a fashion, you haven’t seen or held her. Long story short, at 36 weeks they sent me off to go contract away…. wait for it…. and my pelvis separated so I had to be induced. By that time they all knew me well enough to know that when 15 minutes after delivery I asked for a shower and sent someone to get me pizza and beer, it was best to just let it go.

    Now she is 18, normal (annoying and lovely) and I am ready to take her to the Air Force enlistment office! We must be pawns in some great game of chess, either that or life is very odd, ironic, cruel and wonderful. And painful.

    Be well!

  2. This is the closest thing I have ever read to what it was like to live through the first months of my daughter’s life waiting for her to have heart surgery, watching her deteriorate because she couldn’t have the surgery until she was large enough to have it but knowing that her heart defects made it nearly impossible for her to grow, holding my breath every f’ing minute, convinced that she was going to die and, worse yet, on MY watch, not being able to be alone with her, almost not wanting to live.

    I know you’re in the Midwest. Possible that you’re close to Indianapolis? My daughter is 2 1/2 now and healthy, but her first year was a daily struggle that haunts me still. Thank god for good drugs. Would love to talk to somebody who gets it.

  3. Dear Sister Becky…….
    wow……flew thru alot of your stuff……was trying to figure you out..
    .I am a mother ot TWO children with Juvenile Diabetes
    (now 17 and almost 20)….
    You are a trip……

    ….I think you just saved my life..

  4. That part about your Daver dancing with Amelia? Oh lordy, lordy,, lordy. I burst into tears and my own little ladies looked at me like, “Welp, Mommy’s really gone off the deep end this time…” and then we hugged and now they are bugging me about taking a bubble bath and …. Anyway. Thanks for sharing your story!

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