When I pulled up to the hospital yesterday and walked through those sliding doors, whirring officially shut behind Amelia and I with a snap, I was calm. I’m not sure how I paint myself here on my one-dimensional blog, but I’ve never been prone to anxiety or cases of the vapors, and typically in the moment, I’m about as calm and collected as they get. This was no different.
I gripped my phone like a talisman and strode over to the desk where sure enough, a new volunteer greeted me to help me find my way. The scent of lilies was heavy in the air and I tried mouth-breathing (one of the few perks of having been a barfy pregnant lady) to stave off the smell. Calla lilies are one of my favorite flowers, but the rest of them remind me of all of the friends I’ve buried.
Amelia, refusing to be held, led the way through the hospital, past the gift shop where I bought her heart necklace, past the chapel where I prayed for her, past the cafeteria where I remember laughing for the first time, my throat rusty and dry, the laugh unfamiliar, past the NICU and PICU, her little legs chugged along, sturdily running so fast that we had to half-jog to keep up with her.
Finally we reached an unfamiliar corridor and the volunteer whom I’d been handily chatting about tropical plants with bid us adieu. Amelia trucked on ahead, thrilled by the freedom to run up and down the corridors, uninhibited by the ghosts that roamed them.
When we found our way–because Mili always finds her way–I saw the Children’s Memorial Hospital sign on the wall across from her new neurologist’s office. In a bizarre twist of fate, this happens to be a satellite unit of the same hospital that I did my pediatric rotation through years ago. It’s an amazing hospital.
It’s hard to believe that my daughter is now a patient.
In the waiting room, Amelia made a beeline for the crayons and happily dumped them out all over the table. Screw coloring.
Eventually, we went back and met with the neurologist, who I was understandably anxious to meet. Neurologists, for those of you happily unawares, aren’t perhaps the kindest of all doctors. They’re sort of at the top of the doctor heap, only beaten by infectious disease doctors, and what’s more is that they know it. So people skills aren’t exactly important to their profession.
I was prepared to go all Campaign of Terror on him and be all “you DO know who I AM, don’t you?” and not because I am a pitiful blogger who might pathetically attempt to sully his reputation on the internet (I wouldn’t), but because I come from a line of well respected doctors who are well known. My now-middle name would be a dead giveaway, but I was all, you’ve got to know when to hold ‘em and know when to fold ‘em and stuff.
I didn’t even have to whip that out because he was FULL of the awesome. When Amelia took his reflex hammer and started trying to test out MY reflexes, he simply went and got another one rather than try and wrestle it out of her fists of fury.
For any of you not playing along at home, Amelia was born with a midline parietal enecephalocele which is a neural tube defect caused by the failure of the embryonic neural tube (the primitive spinal cord) to close properly. Her skull didn’t fuse and part of her brain, the part right about at the crown of her head (for anyone who doesn’t know where the parietal lobe of your brain is) developed outside of her head. It was a true encephalocele, not a meningeocele, meaning that there was actual brain matter inside of the defect, not just cerebrospinal fluid.
Having an encephalocele reduces the likelihood of survival at birth to 21%. Half of those live-births survive. Of those survivors, 75% have a mental defect. The poorest indicators for survival and associated anomalies are true posterior encephaloceles. Like what my daughter, Amelia, was born with.
At three weeks of age, she underwent massive neurosurgery to repair the bony defect in her skull with a skull implant and to remove the herniated brain tissue that had developed outside of her skull. The surgery was a success.
Mili’s neurologist suggested that we follow up with an EEG to look for any possible seizure activity while she is sleeping, as she displays none of the signs of seizing while she’s awake, because it is the last thing that can be treated. Neither the neuro nor I believe it’s seizures, but it’s worth a shot.
Any other developmental problems are simply a continuing result of her encephalocele and the microscopic neurological problems that they caused when she was developing.
Logically, I knew this. But my heart was filled with darkness as I left the office, my daughter chasing the light shining through the windows in the corridors of the hospital as I trotted to keep up with her. I wanted it to be easier.
I ducked into the gift shop and bought her a necklace. A new necklace for a new battle. And as I strapped it to her brave chest, the tears falling down my face, I whispered, “there’s the light, Princess of the Bells. Now you find your way. Don’t let anyone stop you. Ever.”
And she won’t. She’s her mother’s daughter, and if I can find my way in this crazy fucked up world, my daughter will, too. Her light will guide her, just as mine has. In lumine tuo, videbimus lumen.
Shine on, you crazy baby, shine on.
The old me died in a puddle of tears on that birthing table as my daughter whisked freshly from my body was clucked over and examined and I was left paralyzed from the waist down, terrified and alone. I was reborn into a new world where all of my old besties and allies were no longer at my side, where my husband was gone, and where I was, again, alone against the world.
It’s not terribly different, I guess, than how any of us are born, it’s just that I was older and not covered with that cheese-type stuff (say it with me now, Pranksters, thank GOD!).
For eighteen months now, I’ve carefully picked up the pieces of who I was and assembled them back into a reasonable representation of who I am now. I discarded some of the old things I didn’t need: the anger that I’d held onto for so long and the inability to let people in and the long-held opinion that I didn’t need anyone but myself to be happy.
In turn, I’ve added some new things that I think I always needed but didn’t realize: I’m warmer, more loving and I’m more thankful of the people who do love me. There are bad things woven in there too, of course. You don’t go through major traumas without picking up some hell along the way. The darkness inside me is heavy sometimes. Sometimes I wonder if it’s more than I can bear.
These shards of who I am now are stitched loosely together with the belief that the universe is far less random than I’d ever thought it was and that someday, it’ll all make more sense. I have to cling to that idea or I’d probably go crazy and shave my head and tattoo a fire-breathing scorpion on it.
Monday morning, I will go back to the place that I was born. Not Highland Park Hospital, where on July 15, 1980, Rebecca Elizabeth Sherrick* was born, but Central DuPage Hospital, where Becky Sherrick Harks was born on January 28, 2009. I haven’t been back since her surgery.
My daughter, her curls like a halo, finally masking the scar that bisects the back of her whole head, she and I will march into the place where we were both born on the very same day. My ghosts will roam the halls with us, carefully holding my hand, gently guiding me find the place where I will take my daughter to help her find her words.
I hope that when I pass the ghost of myself in the hall I can send her a hug; some silent signal of strength from her future self. Because while the darkness is omnipresent, the sadness an integral part, there is always hope. I hope that she knows that the future is large and that while she will rage, trying to fit in to a world that no longer exists, in all that she has lost, there will be more that she gains.
Monday, the flowers in the vase on the desk will be fresh, and the volunteers will smile, confused by the visibly upset young woman and her beautiful daughter. They will not understand that sometimes, it just hurts.
They will not understand that sometimes, you slay the dragon.
Sometimes the dragon slays you.
Today, Amelia, Princess of the Bells**, she and I will slay my dragon.
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*what? You didn’t think my parents named me Aunt Becky, did you?
**Amelia, by my amazing friend the Star Crossed Writer
An army stands ten thousand strong and tall,
But you shall rise above the bloody fray
And rain down vengeance ‘pon your enemies
And all those who would stand against your will.
When darkness threatens fainter hearts than yours
And calls ring out for champions to arise,
The cries will cease and everyone will see
Amelia, the Princess of the Bells.
Anyone scouring my archives will note that this is a rerun of perhaps my first (?) Go Ask Aunt Becky column, which I am lazily reposting since probably 2 of you have read it before.
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Dear Aunt Becky,
Is it trashy to hang your child’s art work (one construction paper size piece from each child) on the storm door?
Oh, Gentle Reader, if only you knew how many nights I stayed awake, soaking the pages of the newest Pottery Barn catalog with my drool, dreaming, just dreaming of the days when my sofa might match the drapes and I might be able to use my coffee table for more than a toddler-jumping-off platform (it is also used, I want to add, as a bed for Auggie. Which, I know. Huh?). I fantasize about the days when I will have end-table books and breakable hurricane lamps on my dining room table.
Truth be told, I fantasize about being a size 4, too, and, well, yeah.
I’m no (insert home style star here) and if I had to describe my house, it would be kid chic, complete with a side of dog and cat fur! So I may not be the best person to ask this question to, but I will try to answer you proud.
Providing that you’re not trying to score a centerfold spread in Architectural Digest or act like you live in a house that has no kids, I say why not? Providing, of course, that the drawings aren’t of anything graphic (OR DECIPHERABLE if so) and/or containing: penises, vaginas, butts, poop, or people in various stages of killing each other.
Unless, of course, you’re trying to scare off potential door-to-door salespeople or people who want to tell you about how God Can Save YOU. Then, I would be as graphic and foul as possible.
If it’s cute and it makes you happy to look at and you don’t mind telling the world that you have kids, I’d say go for it.
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I have a family member who gives Mister and I, and our children, things we really don’t need. (Or want) This person is a semi-compulsive shopper in recovery, and I think a lot of her “gifting” is actually “cleaning off a shelf.” I’ve tried to hint that we really don’t need these things, without sounding like an ungrateful bitch.
What really makes me feel bad is that she takes the time to wrap them, and pays good money to ship them across four states. Is it rude to say, “Let’s just exchange one gift per person this Christmas.” Which would be code for, “Please don’t pay Fed Ex to ship me a(nother) salad spinner, a shoe shining kit, a pair of socks with cats on them, and a flashlight, wrapped in red and green paper.” (Ugly! Hateful!) Help!
Now this, my dear friend is a tricky question.
First, I would probably thank her for her generosity (on, at least, the phone, if not in person. Email can be tricky because tone cannot be interpreted) as kindly as possible, because, well, that’s polite. Then, as she’s ‘you’re welcoming you,’ I’d throw in a really, really, really sweet sounding “you really don’t have to go to all the trouble!”
I would probably leave it at that so as not to offend her.
If she persists (getting rid of some of this stuff may be sort of a gift in and of itself to her, because perhaps it makes her feel as though she’s really sending the stuff to a good home) sending gifts, I would donate them to charity.
Because I understand that you need another whimsical Santa-head oven mitt like you need a hole in your head.
Trust me.
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Hey Aunt Becky,
Since you’re such a people person, what thoughts do you have on avoiding relatives who plan on sleeping (and yelling) at your house for a week during Christmas WITHOUT actually telling them to their face how much you can’t stand them?
No this is not early, they just ordered their plane tickets on the internet, and I do not have the money to send my family of five flying in the opposite direction.
Thoughts?
“In the Middle” (Thanks, I’ve always wanted to use a corny pseudonym.)
ps. Something is messed up on the sight right under “ask”.
First, corny pseudonyms are drastically underused today, Aunt Becky agrees*.
If being honest about this is out of the question and straight up mentioning (or having your spouse say) that having a houseful of guests isn’t feasible, I would go with one of the following options:
Option 1: I would do whatever (and I MEAN whatever) I could to make sure that they stayed in a hotel. Your sanity is worth a hell of a lot, and if you’re dreading Christmas already (SO been there), then maybe you can find a cheap rate for a nearby hotel. You could GRACEFULLY, tactfully insist that they stay here, as your gift to either them, or to you.
Option 2: Depending on your relationship with them, if it were good enough, I might ask at some point (in my stupidest, I don’t know anything tone) “Oh! Where are you staying!? I hear there are some AWESOME rates at (name local hotel). Want their number?” Be forceful, stupid sounding and gentle at the same time.
Option 3: Convince your family that you have some horrible communicable disease like rabies and they cannot possibly be exposed! O! The humanity!
Option 4: Call your doctor and get a prescription for Xanax and spend your holidays living on a fluffy, pink cloud where you won’t care that everyone is yelling at you.
Option 5: Call your liquor store and get a case of (insert your drink of choice) and spend your holidays living on a fluffy, pink cloud where you won’t care that everyone is yelling at you.
Option 6: Move out for that week. Fake a work trip, a separation, whatever, and get the hell out of there.
Option 7: Praise Sweet Merciful Baby Jesus that your family doesn’t live closer and try and grin and bear it. Then say a prayer thanking Sweet Baby Jesus that the holidays only come once a year.
Now, none of these options excludes the other, so if you like a little from Column A and a little of Beaker B, feel free to mix them up.
I wish you good luck, my friend. Good luck indeed.
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As always, should you have a burning question for Aunt Becky other than “How does anyone stand you?” please go up to the top of the page and click on the “Go Ask Aunt Becky” page. You can freely send me questions, compliments and marriage proposals which I do answer every Sunday.
And, Pranksters, please feel free to fill in where I left off in the comments.
August 31, 2010
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