Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

I saw the monitors and instinctively checked them as I approached my daughter, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.

I slogged my own soggy bottom from the wheelchair onto the nifty rocker that was shoved into that tiny room; barely a room, more like a closet. She was sandwiched in between to babies who I could hear misbehaving on either side. “Misbehaving” is, of course, a nice way of saying that these babies weren’t doing well and their monitors were alerting their nurses as such. Most of the NICU, I noted as I was wheeled past, always the nurse, was full of Feeders and Growers.

This is a fanciful way, always evoking a pleasant garden of freshly hatched babies, of saying that these were babies who were finishing their gestation outside of the womb. The babies surrounding Amelia were probably in a little worse shape, although with the sensitivity of the monitors, hearing them frequently beep means relatively little, until you see the staff go running.

Of the other babies whom I could see cooking away merrily in their incubators–like I said before, I find preemies adorable–Amelia was the biggest, fattest, and likely the only term baby there. According to her room placement, though, she was thought to be one of the most ill.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

My ass was firmly planted now onto the chair, and I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.

Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. While he had recovered more easily and was no longer tearful, I was still weeping. A mixture of sleep deprivation, intense stress, and the drop in post-partum hormones made for a Messy Aunt Becky.

(Boring aside time! I realize that I keep going over and over how I was crying, and so that you do not believe that I am the whiny baby that I appear to be, I’ll have you know that I rarely cry. A couple times a year I might quickly tear up after a particularly brutal House, MD but generally, I’m not tearful. Or flappable. Or a flapper, either. Whatever)

I handed off the box of kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly, talking to us, but not revealing much of anything at all. I imagine it’s because they didn’t know for sure, but not knowing anything wasn’t exactly comforting, by any stretch.

I begged the nurse to have the neonatologist on staff come and speak with us, since the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was, lest I have stalked him down. Knowing something–but not specifically what–is wrong with your child is a pure hell I can’t wish on anyone.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

The neonatologist–the same one from the previous day (has it REALLY not even been 24 hours since she was born?)–came over to us, and told us that there was a “bright spot” on Amelia’s CT Scan. I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand anything he was saying. I guess that’s panic for you.

After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; to have Amelia meet the chaplain. Now, I’m not super-religious, I feel I must add, but I’ve always, ALWAYS found immense comfort in men and women of the church. And since we’d gotten absolutely no comfort from anywhere but ourselves (and my friends in the computer, whom I adore), I was pleased to meet the chaplain.

She was amazing. Just. Incredible. Of the entire coming month, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.

And she was so, so blessed.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

We sat there in the NICU for quite a spell, after everyone left, it was just the three of us. Time in the ICU is timeless. You look at a clock and it could be 4 AM or 4 PM, there are no extraneous clues to tell you what part of the day you’re living through. Besides hell.

But soon enough, I had to go upstairs so that I could change my undergarments and ready myself to see my boys. My sister-in-law was bringing my boys to come see me, and I had to put on my Poker Face. Which, given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.

Back up in my room, I saw that I’d gotten some flowers and a basket from two of my lovely internet (slash) real life friends, and it made me cry. Then again, I think the package of saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.

My sons came in a bit after I’d gotten sort of cleaned up–and by cleaned up, I mean, changed my icepack and brushed my teeth–and I don’t remember much about seeing them. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick, but Alex had no idea what a “sister” was, let alone what being “sick” meant. I held them and pretended to be as normal as I could until I got the call from the NICU. I needed to go down and nurse my daughter.

Talk about being torn into 2 pieces. I bid farewell to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–who screamed and cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump them into the outside world. As for me, I found my way back to the super-stealthy-ninja elevators to take me to that innocuous door, the one that should have had some flashing lights and a nifty “This Is Not An Exit” sign above it, and I cried.

I missed my other children so terribly and I was so, so worried about my new child; I felt so torn. Like I was walking the line between two worlds, and not doing a very good job living in either.

I said the same prayer over and over, begging God to let her live, even if she was retarded and her IQ was 43 and she was ugly and had to live at home for the rest of her life, just let my baby girl live. I didn’t care what was wrong with her, so long as she made it out alive. I begged God to take me, instead, I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.

Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.

After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I dashed over as quickly as I could to see my girl. There she was, still perfect stats, thrashing about, looking for something to eat. In the time I’d been gone, however brief it was, shift change had occurred, and we’d gotten a new nurse.

When she came in to assess my daughter and saw me weeping softly into her blanket as we rocked back and forth, back and forth violently in that rocker, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die; that no one had told us what could be wrong with her, what that bump COULD be, why she had to be in the NICU, nothing.

She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. She apologized that the neonatologist wouldn’t be in until the following morning–some crazy ass brain surgery was goin’ down–and I remember leaving the NICU several hours later slightly less burdened.

Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.

That night, we ordered a pizza and tried to relax in my somber room, trying to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth. I could have been on any floor, in any room in the hospital. There was no joy there.

The nurse brought me my Ambien, and the NICU had called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home. Seriously, it’s a well-oiled machine). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep. Unsurprisingly to no one, least of all me, I couldn’t get anywhere close to sleep that night. This made the tally of nights without real sleep at 3.

I was about to lose it.

Somewhere around 4 AM, after someone had ruthlessly barged into my room to empty the wastebasket or something, waking me from the lightest of light sleep, I began to panic. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free, so I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.

Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.

Which, hi, that helps.

(this was, I need to tell you, a totally different nurse than my dayside one)

She told me to “relax” and then left. I tried to “relax” which was as useful as punching myself in the face with a hammer, and soon enough I put a call back into the nurses station, begging, pleading for them to call my doctor. I was panicking so badly that I quickly inventoried all that I had in my room that might help with this. The best I could come up with was a bottle of Scope.

I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up (he was unaware that something was wrong with me, more than whatever is NORMALLY wrong with me) and some other nurse took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me, a nurse with that beautiful pill, a tech to get my vitals, and my sweet husband, who was trying to reassure me.

It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor just were doing their jobs. With spectacularly bad timing.

Ativan on board now, I was trying to gulp some calming breaths and stave off the panic which was doing none of us any good. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine. It had to be about 7:30 AM.

Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.

As I always tell Ben, “You can’t always get what you want,” and I got what I needed. I was finally coming down, although I was still weeping, panicked, and out of my mind with fear.

Then (dun, dun, DUN), the absolute worst person to show up did. (no, not Nat).

Lactation services.

(Pithy aside time: I never got Ben to nurse, ever, but I went to lactavist after lactivist, learning pretty much all I ever could care to know about breastfeeding. THEN, I worked OB long enough to teach many, MANY women to nurse their babies. Hell, I’m sure I could give YOU some tips, if you wanted. After that, I had Alex, who nursed constantly. I am no stranger to the boobies, the holds, the implements of torture, the creams, the bras, the lotions, the pumps, the storage bags, the supplements. While most of parenting is a guess-n-check thing, I’ve pretty much gotten nursing down)

So Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.

(also: why are people in the Lamaze videos always naked?)

But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. But no.

No.

She introduced herself perkily and asked me how breastfeeding was going, and I answered that it was fine. Which really, was kinder than the situation warranted. I’m kind of an emotional cripple, honestly, but had I walked in on this hornet’s nest of a room, I’d have promptly left.

I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.

“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”

Again, she could have gracefully bid be farewell. But no. She kept on keeping on.

“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.

I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!” I began to sob heavily again.

It was then that Dave told her to get the fuck out of our room, and in my mind’s eye I see him leading her to the door forcefully, but I’m not sure if that’s how it went.

Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.

I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”

And just like that, we went from critical to discharged in less than 36 hours.

First, the facts, which you will see form a fairly short list. Encephalocele’s are part of the National Institute of Rare Disorders, so certainly what is out there is not been well researched. After her surgery, after I could research it without throwing up, I popped open my pediatric nursing text, and sure enough, there was a tiny paragraph on one page, where as the other neural tube defects had entire sections devoted to them.

This is what I found in my brief research (as it pertains to my daughter):

• It is a neural tube defect that develops around 28 days of age representing a defect in the skull where brain tissue (or not) herniates through.

• The absence of brain tissues in the herniated sac is the best indicator of survival.

• Per the CDC website, encephalocele is found in 1 of every 10,000 births (I have seen it, I should add, as high as 1 in 5,000, which doesn’t sound too rare to me)

• It’s the prominent cause of spontaneous abortion before 20 weeks.

• Having an encephalocele reduces the chance of live birth to 21%

• Only half of those 21% survive.

• 75% of those survivors have a mental defect.

• The risk of mental defects is higher when the defect is located on the back of the head.

• It’s more common in females than males, more common among siblings, and has associations with many chromosomal abnormalities.

——————–

Now, I didn’t go home and start googling, because I have learned that The Internet doesn’t always tell the truth! *gasp* I KNOW. That’s the problem with The Internet sometimes, especially when you’re looking up something about your daughter’s head: it’s unfiltered. Like Lucky Strikes.

Besides, denial being a powerful thing, I sent my mother, brother and sister in law out for as many small hats as I they could find to cover up Amelia’s bump. Out of sight, out of mind. Besides, I couldn’t remember what it was called AND I DIDN’T WANT TO BE REMINDED. We’d scheduled a follow-up with the pediatric neurosurgeon for a week to the day that we were discharged so that we could go over the MRI that she’d undergone.

This is a picture dated February 3, 2009, which meant it was before we learned specifically what she had. We were in limbo. I was not well.

You want warts, Internet? YOU GOT THEM. (on me, not her)

Dave took this picture and said, “You look so SAD,” and you know what? I was.

Because for all the advances in modern medicine; for all that we have learned, kids still die. Babies still die. Life is fucking fragile, it’s unfair and sometimes it sucks. These are facts too. Until this stops happening, I will always carry this sadness around in my heart, as much a part of me as my black hair and my love of cheeseburgers.

For all of the scans, the vials of blood taken from my daughter, for all of the experience the neurologist had, at this point, we really nothing to go off of. I had no way to know which way was up.

Dave loves a plan and once he knew we’d be meeting with the doctor, he felt better. Dave also never had to rotate through the transplant floor and see kids who would die if they didn’t get a new kidney, so it’s safe to say that both of our perspectives are a bit skewed. Somewhere in the middle would have been the rational place to be, but what the fuck is rational about living in limbo?

No, I couldn’t celebrate Amelia’s birth until I knew that she wasn’t just going to die on me, nor could I handle the (supposedly) well meaning people who dismissed my fears. No, Internet, I don’t mean you, don’t worry.

In the face of these sobering facts about my daughter’s condition, I quickly grew weary of people telling me not to worry. It would be like telling me telling you to hold your breath for a week. Not quite within your control. It felt like a slap in the face after the 56th time, and although I’m pretty sure at least one person did it because they were mad at me, I imagine that most people just thought that they were being helpful.

I could write volumes on how unhelpful that was.

But brain herniation or no, I had a life that I had to lead no matter what. The world marches on even after yours has fallen apart, and I can’t help but think it was for the better. I still had a toddler to feed and love on, a 7 year old who was so proud to be a big brother, and a menagerie of animals who missed me desperately and followed me about the house nervously wherever I went.

(Pointless Rambling: my animals are really, really keen on sensing emotion. If I get upset, my cats? Come running to lay on me. The dogs both sit on my feet, and the bunny hops around her cage nervously. I don’t pretend to understand why)

I spent most of that week cleaning the house from top to bottom, trying to channel my nervous energy away into something more useful than wringing my hands and gnashing my teeth. I find it’s the one thing that helps quiet my mind, short of exercise and gardening, and it being February in the Midwest, and being freshly postpartum, those two ideas weren’t exactly going to work.

I suppose I could have dug a large ditch in the backyard, because fuck, digging out a trench in the frozen ground? WOULD HAVE TAKEN A LOT OF TIME AND ENERGY. And then spring would have come and I would have kicked myself for digging a trench in my already wee backyard. I guess we could have turned it into a mud-wrestling pit, but I fear I may be going off track here.

It’s a real shame I didn’t have a deck to build or a house to paint, because I could totally have done it singlehandedly right then. Never underestimate the power of a parent in crisis mode, right?

I’ve never felt like more of a fraud than I did those first few days home. I was so happy to be home, every single time my daughter woke up from a nap and opened her large eyes to look at me, I got misty-eyed. Here was this beautiful creature, all my own, who I may have to give back in the next few weeks. This miracle whom I’d loved from the moment I found out I was pregnant was probably not mine to keep.

I don’t remember a whole lot about those days, although I do remember how loved she was. Even by Alex, my little man, The Momma’s Boy, ESQ, was enchanted by her loveliness. Even if she did sort of look like a garden gnome. She was my garden gnome, dammit. I was so, so happy and so, so sad all rolled into one gigantic, arrogant, leaky puss-bag of a woman.

Through a haze of anti-anxiety meds, the first week passed and we found ourselves at the door of the neurologist, who looked shockingly like Stephen Colbert. He was a kind man, which reminds me that I probably should write him a card telling him how incredibly kind he was to all of us. It can’t have been easy to see us there, I was weeping softly, my daughter so new and fresh; still a fetus, really, and Dave, poor Dave, just trying to keep it together for the rest of us.

————-

I remember it happening when my father had his unexpected heart attack last winter and wound up in the ICU for nearly a week. A day like any other, a day like today, in which my biggest concerns went quickly from ‘œMan, I hope Alex goes to fucking sleep tonight’ to ‘œMan, I hope my dad makes it through the night.’ The shift in thinking here is vast and it’s frighteningly quick.

Suddenly, even news that on a normal day would be some of the worst news you could hear ‘œhe had two clots, one of which is threatening to kill him, but we’ve removed one of them’ sounds rather’¦good. It could always be worse, you tell yourself as you pace up and down those hospital corridors peeping into rooms whose occupants, well, HAD it worse than you do. But somewhere in those dark recesses of your brain, you remind yourself that even though for now, for RIGHT now, things are going as well as you can expect, they can sour without warning.

Yesterday, The Daver and I took our week old daughter to a pediatric neurosurgeon after we picked up her MRI films from the hospital. We sat there in the waiting room, me with a baby on the boob while he filled out the piles of paperwork and received the kind of pitying looks from the other patients as they walked by that made my heart swim with tears.

Yes, it reminded me, it is this bad.

After the neurosurgeon, ranked one of the best in the area, bounded into the room, filling it up with a sort of ebullient energy that only someone who abso-fucking-lutely loves his job has, he flicked through the massive stack of films to find one to show us what was wrong with our daughter. In cross-sectional picture form.

And for some reason, despite my incredible love of anatomy, my utter lack of horror for things like internal organs and dissections (I am, apparently, my father’s daughter), I could hardly handle looking at these films that showed my daughter’s head. In ways I never wanted to imagine it.

It’s funny’”I know HOW these things work, I could probably give you a dissertation on reading an MRI of the brain without much prep’”and yet seeing these parts of brain, parts of my DAUGHTER’S brain, made me cry and feel revolted. It felt unnatural to be looking at these films. In several, I could see that she was crying, or at least her mouth was open and neck arched backward and I ached. I physically ached for her.

Sure enough, right where some brilliant tech had put some of the measurements on the films, the brilliant and kind doctor pointed out what we can easily see from the outside: her cyst. In medical terms, as I alluded to by the title of my last post, it’s called a cephalocele, and it’s sort of like a hernia on the skull where the bones of the skull didn’t properly fuse together while in utero.

I’d known all about cephalocele’s before I’d birthed Amelia, before I married Daver, and I knew enough to know that the one that my daughter has been born with is really pretty minor. Typically, they cause all other sorts of neuro symptoms and retardation, but by the grace of God, Amelia seems to have none of those. We will, of course, know more as she ages and appropriately (or not) hits all of her milestones.

The upside to her cephaolcele is that it’s not an ENcephalocele, which means that the cyst is full of cerebrospinal fluid WITHOUT brain matter. The bad side is, of course, that she’s still going to need brain surgery in the following weeks. And no matter what way you try and spin this, it’s fucking scary.

(ed note: the above paragraph was not true, and was written the day after our appointment with Neuro #1. Amelia did have a true encephalocele, complete with brain matter)

The bounding doctor would like her to have this surgery in the next couple of weeks so she won’t remember it when she gets older, and while it makes sense to me, I’d still like to cocoon myself away from the thought of my daughter going under the knife for the next, oh, I don’t know, 60+ years? By which time I’ll be dead and I won’t have to sit in the PICU for several days while she wakes up, my breasts aching and full.

Unfortunately, the doctor whom I adored on sight, does not take my insurance and although I have a PPO, I’m not sure we can swing the thousands of extra dollars it’ll require to have him specifically do the surgery. He referred us to a colleague of his whom we will see on Wednesday of next week and form a Plan Of Attack.

I only wish this Plan Of Attack included leaving my sweet baby girl’s head unscathed and eating a bunch of Funyons while sitting on my bum, but I’m pretty sure I’m not going to get out of this one.

And so I sit here, waiting again while freaking out quietly, and trying to remind myself that things could always be worse. Always. It doesn’t help much, but it’s all I have to cling to right now.

Well, that and my brand new bottle of Valium.

Do I look as stupid as I think I do, The Internet?

—————

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.

Always.

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