It’s been a long time since I thought about those first few days with my daughter. Actually, that’s a lie. There’s not a day that goes by that I don’t think about the encephalocele, that pesky bit of brain matter growing out of the back of her head. The still-growing scar on her misshapen skull makes damn sure of that.
It’s always peeking out, just below her curls.
I wonder what she’ll think of that, someday, when she realizes that she’s not quite like the other kids. I know there will come a day when she hates it, another when she accepts it, and another when she realizes just how grave a situation it was… and what a miracle it is that she is still around today.
I know enough, thanks to my nursing background, to know what an absolute miracle it is that she’s walking around, talking, and demanding that I paint her bedroom pink. Not a day goes by that I don’t thank her for showing me the way, for helping me find my light, and for using that light to help others.
She’s the reason we, this Motley Band, are here. She’s the sole reason that this site, which has helped so many, exists. Without her, I’d just be some blogger with a blog that I use to pontificate about the underrepresentation of kumquats in today’s media. I’d still be Your Aunt Becky, but I wouldn’t have done this. Any of this.
In her short life, she has altered the path of so many. In her three small years, she has done so much more than I ever will.
While I could sit here, raging against her birth defect – which has given me a wicked case of PTSD – I don’t. I celebrate it. I celebrate that one tiny bit of brain that has changed the course of my life forever.
Today, I ask you to share your stories of birth defects, birth trauma and birth injury. There are so many of us out there in the shadows, waiting to share how their lives have been changed with a few small words, a diagnosis.
The greatest stories remain untold, of course, not from a desire to tell them, but from a lack of an understanding ear.
In here, in this cozy library, fire crackling in the background, as we sit on overstuffed leather chairs, we are ready to lend you our ears.
Every month, I hoped that I was pregnant. Despite endless ovulation predictors, pregnancy tests, and prenatal vitamins, I never was. I just knew that I was pregnant during my cousin’s baby shower because I was a whole five days late. I was not. I started my period during the baby shower. I cried in my car alone the whole way home.
After two-and-a-half years of trying to have a baby the old-fashioned way – you know, by relaxing – we turned to science for help. Extensive tests and a passionless affair with a tool we called the dildo-cam (wand ultra-sound) determined that my husband’s swimmers were on, as he so eloquently puts it, on sabbatical. Our doctor felt that IVF (in-vitro fertilization) with ICSI (intracytoplasmic sperm injection) was our best bet at baby-making.
I was shocked. After all the single lines on the pee stick, I never thought I would see two. I am not an optimist. That mother fucking glass is half-empty because some slag took a big gulp from it when I was taking a pee on one of the endlessly negative pregnancy tests. I didn’t even pee on a stick until after I had my blood drawn at the doctor’s office to see if I was pregnant.
I found out I was pregnant in a Fred Meyer bathroom across the freeway from our clinic.
Holy hell was I sick. I was not a beautiful, glowing pregnant person. I was a lanky-haired puking pizza-face. I puked starting at six weeks and didn’t stop until the day I delivered. I even puked when they were sewing me up from my C-section. For all the trouble I’d gone through to get pregnant, I’d hoped for an easy pregnancy.
During an obstetrics appointment, my doctor heard one of the babies heart skip a beat, which freaked me the hell out and warranted an appointment with a heart specialist within the week.
The visit with the heart specialist was short and sweet. It turned out the skip was in my daughter J’s heart and was chalked up to a momentary “short circuit in her electrical system.” So, in essence nothing to worry about, crisis averted for now.
Other than a brief stint of pre-term labor at 34 weeks, which put me on house-arrest, everything went smoothly until delivery day at 37.2 weeks.
The day I heard the most horrible sentence ever: “there’s something wrong with your baby and we don’t know what it is.”
I had a scheduled c-section at 37.2 weeks. Things went well at first. The doctor first pulled out Baby A, my son G, giving him a black eye in the process because he was lodged deep in my pelvis.
Next came Baby B, my daughter J, and the room went silent.
I didn’t notice this until a little later because I was busy trying not to throw up as they put me back together. I did not succeed.
In recovery, where I was shaking like an alcoholic coming off a three-day bender, a nurse asked me if anyone had told me about my daughter. She went on to tell me that there was “something” wrong with my daughter but no one knew what it was and they were trying to figure out if they were going to have to emergency transport her to the Children’s Hospital sixty miles away.
I had no clue what she was talking about. My recovery nurse shot daggers at the big-mouth as she called the anesthesiologist for more anti-shake drugs, which is the technical term according to my redneck ass, because the shakes kicked into overdrive again. The on-call pediatrician came into the recovery room and said basically the same thing as big-mouth, and added that my daughter had some sort of skin covered tumor the size of lime on her tiny 5 pound body at the base of her spine. The pediatrician had a call into Children’s to find out what to do because she had never seen anything like it.
Because her tumor was covered with skin, she didn’t have to be transported, so she stayed with us and was able to come home. Two weeks later, we went to Children’s to find out what was wrong, little did I know it would take six months and three neurosurgeons to identify what her defect was and what to do about it.
At the two weeks of age appointment we found out she had a neural tube defect (NTD).
We were told that she had one type of defect called a myelocystocele (hernial protrusion of spinal cord through a defect in the vertebral column) only to find out that she had a different kind when she had an MRI at six months of age. If really sucks to think your kid has one thing and to have made your peace with it to find out it is something else.
At six months of age, we now had an official diagnosis of lipomeningocele: which is a fatty tumor that attaches to the spinal cord, tethering it and not allowing it stretch as the child grows it. Lipomeningocele have a 1-2/10,000 occurrence rate.
During the MRI we also discovered that she has a bony defect in her left ear called an enlarged vestibular aqueduct that could cause her to go spontaneously deaf in that ear. I lost faith in the neurosurgeon that made the initial diagnosis, so I made it my mission to find the best tumor neurosurgeon in the country and I did.
I found him at Johns Hopkins and sent him J’s records. He agreed with the diagnosis, but not the treatment plan of the original neurosurgeon.
The original neuro, we call him Dr. Asshole around here, wanted to wait until she showed symptoms of nerve damage. The nerve damage symptoms, which are irreversible, include loss of bowel and bladder control and mobility; anything below the lesion could cease functioning. Dr. Johns Hopkins told me to call up his colleague Dr. Awesome, who was the head of neurosurgery at our Children’s Hospital. Dr. Awesome used to be the head of Johns Hopkins.
If I hadn’t been in such an unbelievable fucked up state of, oh my god I have twins and something is wrong with my daughter and how the hell do I do this? I am sure I could have figured out who the best doctor was, but I didn’t and I am glad that I had someone do it for me.
Dr. Awesome is the man.
He basically looked at me, blinked a couple of times and said, “We’re doing J’s surgery as soon as we can get the special instruments from the university.” There was no waiting to see if she would have nerve damage, it was take action now. I love Dr. Awesome. Yes, he is a typical neurosurgeon, so he lacks a little personality, but he’s a great doctor that does not fuck around.
J had surgery at ten months of age and did amazingly. The 4.5 hours she was in surgery were some of the most terrifying of my life and she had to stay in the hospital on her stomach for five days, which was not so fun. She had learned how to stand the week before her surgery and that is all she wanted to do. Did I mention she is also a crazy maniac? She broke the Styrofoam board that held her arm straight for her IV and ripped it out, then they put it in her foot and she ripped that out too.
At two years old, J has full use of her legs, with only slight nerve damage on the left that hasn’t caused any issues yet. She may be looking at a leg brace at some point, but we will deal with that if it occurs.
She has seven specialists that we see every six months that track her progress. They’re all impressed as hell with how well she’s doing. Her left ear does have some slight hearing loss in the low tones, but it’s another thing we just watch.
We watch a lot. I check her toes every morning to make sure they aren’t curling under. I analyze her walk several times a day. I am obsessed with her bowel movements and how much she pees because bowel and bladder function could be the first to go.
I repeat the mantra “life altering not life ending” to myself every night. I cry almost every week. I am thankful for the people that have been there, that have let me talk or not talk. That banded around me from all over the country to help me breathe. I try to stop worrying about the future. It is the hardest thing for me to do.
I worry school and questions about the huge scar on her back. I don’t want to have to explain why she can’t head a soccer ball, be tackled or slide into first base. I don’t want this for her. For a long time I felt like I caused this by doing IVF. It sounds insane and my therapist helped me see that. We spend at on average two days a month at Children’s which helps put things in perspective for me. Seeing a mother carrying a plastic tub for her teenage daughter who has a scarf wrapped around her head is a big slap of reality.
It’s a nice enough looking building, all official and comforting, with people buzzing in and out in their neatly pressed scrubs, looking like they know precisely what they’re doing and where they’re going. In the hallway there, there’s a heart statue, or maybe it’s a statue of kids in a ring, perhaps playing a game of “Ring Around The Rosy.”
The desk is always manned by a sweet-faced volunteer to help you find whatever you’ve lost or find your way, except when, of course, you cannot find it at all. There are flowers there, too, beautiful flowers, always fresh flowers. Usually lilies are mixed in, fragrant lilies, reeking of death and funerals, but the flowers are so beautiful that you can almost forgive the scent that makes you want to vomit.
Over there is the place you cried until you dry-heaved as you took your infant daughter to her third MRI in her first week of life. And just past that is the chapel where you prayed for her life. The stained-glass windows during that frigid February day shone a cold bright light as your daughter slumbered through an anesthesia coma, and you tried to forget all that you knew about neurosurgery.
You prayed with all of your soul.
Above the chapel is the waiting room where you sat after you’d dropped your daughter off into the arms of her neurosurgeon, hoping that the last kiss you gave her warm, delicious head, wouldn’t be the last kiss you ever gave her. You sat in that waiting room with the three people who cared enough about you to show up and hold your hand and you choked back tears as the operating room nurse brought you back a bag of your daughter’s first hair in a bio-hazard bag.
You held that bag and wondered if that would be all you had left of her.
Below that waiting room is the gift shop where you dragged Nathan, someone who you will always treasure for being a friend when you needed one most, to buy your daughter something hopeful. A necklace. Carefully, you pick out a necklace that you will give your daughter and someday tell her, “Amelia, Princess of the Bells, Mommy bought you this when you were having your brain surgery.”
It’s a very beautiful necklace. A crystal encrusted heart on a simple silver chain in a velvet bag. It is perfect.
You hope she knows that this necklace is very, very important.
Two floors and a yawning corridor away, is the happy floor, filled with women and new babies, where your life was forever changed with seven words, “Becky, there’s something wrong with your baby.” A new world was created then, a secret place only you could go, this land of tears.
Your soul broke.
Up above that room, down another winding corridor, you screamed as they wrenched your nursing baby from you. Your breasts wept, too, as you cowered in that bed, terrified, in your secret place, your own land of tears.
In the dark basement, worlds away from the happy new parents above, you joined the ranks of the hollow-eyed ghosts in the NICU as you signed in and out to see your daughter. There, at least, you didn’t scare anyone with your eyes swollen nearly shut from crying and cheeks raw and bleeding from hospital grade tissues.
Above her bed there would be her bed post-surgery in the PICU and seeing her in a gown that bore the same logo as the hospital you’d worked at in nursing school made it almost easy to pretend this was all some vicious nightmare. That maybe you’d wake up to a normal, healthy baby.
Then your daughter would cry, her voice raw and hoarse from intubation and you knew this was your new world order.
When your other children came to see their sister, you’d rearrange your horrible face into a mask of what you hoped would pass as cheerfulness, ply them with candy, and hope that they wouldn’t look too closely at your shaking hands or tear-stained face. When they screamed, “I want MOMMY!” as they left for the day, you felt torn between the two worlds, one of which you’d just as soon leave behind, too.
All corridors eventually feed into the cafeteria, where you remember laughing for the first time in months. It was a jangled, strangled sort of sound, but there it was: a laugh, from your mouth, and it was real.
Down by the statue of the heart or perhaps children dancing in a circle is where you waited with your daughter as you took her home with you for the last time. Surrounded by all of the pink things you could find, balloons deflating slightly in the cold February air, you were exhausted, but ebullient: your warrior daughter had made it.
A mother had never been prouder. You held her car seat close to you as you whispered to her sleeping cheek, “You made it, my girl. You’re a fighter like your Momma, all right.” This time, for the first time in her life, when the tears wet her cheek, they were the good kind.
But late at night, when the rest of the house sleeps, these are the corridors that your mind roams, over and over. Your memory, photographic, can recall everything with the sort of clarity that makes you relive those days constantly.
You are forever delivering that sick baby.
Constantly having her wrenched from your arms, always back in those terrible moments roaming the halls, seeing the same desk clerk, smelling those awful lilies, dry heaving into the diaper bag.
The sadness is omnipresent and yet nowhere. It is the new world order.
Save for roaming the corridors all night every night, you haven’t been back to those halls since your daughter had those awful thick black stitches removed from the back of her head.
You must return. New problems, a new specialist, means one thing: you must face your demons and return.
A new desk clerk and a new flower arrangement await you in the official looking building in which you found absolutely no comfort and now you must face up to walking these halls once again. It’s likely that you’ll cry. It’s likely that you’ll dry heave. It’s likely that no one will understand your reaction to this big official building. It’s just a place, after all.
But this is so much more than a place. It’s where the old you shriveled up and died and the new you was dragged screaming into the world.
So you and your ghosts walk the corridors all night every night, reliving the worst parts of your life, wishing they could be laid to rest, knowing that they never will.
This post was written by Becky Sherrick Harks and originally published here, on Mommy Wants Vodka.
This morning, once again, I woke up with my pillow soaked with tears, the sobs still fresh in my throat. I wiped my face off with my sleeve, as I sat up, trying to remember what dream I’d had, what had made me so bitterly sad that I’d wept in my sleep loudly enough to wake myself. Nothing. My memory banks came up with nothing.
I sighed as I changed my pillow case. Normally I dream about new and exciting ways to mock John C. Mayer, and although John C. Mayer could have been the reasons for my sobs (Hey, “Your Body is a Wonderland” is a terrible song), I don’t think it was.
This is the fifth time in as many days I’ve woken up with a wet pillow case. On the rare times I can fall asleep (a hearty fuck you goes out to insomnia), this is what I’m repaid with: night terrors.
Amelia’s appointment yesterday with the EI evaluators went as expected. She’s ahead in some areas, behind in others. It’s the medical equivalent of a push and it’s certainly not something that keeps me up at night, her inability to perform quadratic equations and properly discuss string theory aside.
I’ve managed to buy her a birthday present and pink cupcake mix for her birthday on Friday (still haven’t done anything for a big blowout bash), both of which should delight her. I’m thrilled that she’s going to be thrilled by this. Everyone should be so lucky as to have pink sparkles on their birthday cuppity-cakes.
And yet I’ve spent the last couple weeks talking through clenched teeth, the most minor of infractions setting me off, sending me into a blind panic. A dead weight has settled onto my chest there’s an omnipotent feeling of cosmic not-rightness. Everything feels wrong. Nothing is wrong, yet everything feels wrong.
My feelings make no sense to me.
I know what this is. It’s PTSD. Post-traumatic stress disorder. I hate to even write those words out because I see them and I know someone is going to be all, “YER NOT A VET, YEW WHOR,” and then I’m going to feel worse because I’m already feeling guilty about feeling the way I do. I have the Girl That Lived and still I have PTSD? Certainly, I do not have a right to those feelings.
And yet I do. I’m as entitled to my feelings as the next person
Really, I liked it better when I pretended I had no feelings.
The first time I got a blog troll on my personal blog, I ate a celebratory cupcake and washed it down with a tall Diet Coke on the rocks. It was probably, in hindsight, a spammer (just like my first comments , which I think I framed somewhere were) but I didn’t care. I’d made it! Someone, somewhere hated me!
Then, I got someone who copied bits out of my blog posts. Actual bits of my posts removed and pasted onto hers, like it was no big deal. Someone else, a watchdog, alerted me. My daughter had just been born ill and I wasn’t about to deal with it right then. Talk about bigger fish to fry. I like to think I would have fist-pumped, though, and perhaps celebrated with a tasty bowl of edamame or a wee Uncrustables.
Later yet came the loon who created several blogs composed of entirely stolen posts filched neatly from other bloggers, myself included, who I did fight. Google claims they shut her down, but I don’t care to check because I don’t want to drive her traffic up. I still have, somewhere on my desktop, screenshots of all of your comments on her blog, just because they were so full of the awesome, by the way.
You don’t fuck with the Pranksters or The Band.
Since that first Internet Mole Person (troll), I’ve gotten a handful of others.
Generally, they make me laugh.
There are weeks when they do not.
Like anyone, I’m a person, and I have bad days, and bad weeks, and sometimes I say and do the wrong things. In fact, if I had to describe my blog, I’d say something like, “THIS is where I bow to the alter of my wrongness.” I don’t have a publicist or an adviser to tell me not to do something because, uh, why?
This week, I’ve gotten a couple of nasty-grams that hurt my feelers. I know bloggers are “supposed” to pretend like it doesn’t matter; like we don’t care, like it doesn’t hurt our feelers when people call us names or insult us, but it does. Of course it does.
Like it or not, this is my life.
Certainly, it’s my steaming pile of guts spilled here, my wrongness on display, and my inconsistencies on the table to be judged and if I don’t like it, I can absolutely pack up shop and go somewhere else. That’s the answer, right? To delete my blog in a stompy flourish? Go back to being Becky, In Real Life? That’s how to handle hurt feelers?
Not so much. At least, not for me.
Blogging, writing out your pain, and sharing it with the world, is an act of bravery. When you put yourself out there, especially waaay out there, you stand a very real chance to be very hurt or very disgusted by human nature. The farther you stick your neck out, the worse the inevitable hurt* may be.
What I think is worse than any troll are the people who get you entirely wrong. Because you’re left standing there stuttering, “but, but, BUT, that’s not what I meant AT ALL.”
These are the sort that make me sort of question myself in a way that I seldom do (perhaps I should): Did I say it wrong? WAS I wrong?
And most importantly: why the hell do I do this at all? I see that typed out here, on my screen and it looks like I’m being all 15-years old and dramatical feet-stamp *woe is me, OH NOES* and I’m (for once) not.
I mean that genuinely: why do I do this? Why do ANY of us bother?
It’s certainly not for the billions of dollars in my bank account that still haven’t been deposited, nor is it for the notoriety and free swag, or to be able to tell someone that “I blog, and it’s really, really cool.” Because I swear, if I told someone that, they’d be all, “um, huh? Did you just insult me?”
No. It’s not for that.
It’s because it all matters. Every word I write matters. To me. To (maybe) you. These words are what define me, what make up my life, and what bring me joy. Whether or not someone else finds them and finds joy in them too is inconsequential because it brings me joy. I write because I love to. I write because that is what I do. I write because it matters. Every comment I make, every life I touch, it matters.
That is why The Band exists.
It’s why we pay for servers to handle our traffic and keep your stories edited and fresh. It’s why we’re always looking for new volunteers. It’s why we use our social media accounts to share your stories. It’s why we cry with you, we laugh with you, and we dust you off, and get you to your feet to fight another day. It’s what we do. For you and for every life you touch by the words you write. Why our volunteers help keep the lights on and guide you to us. We all know the truth of what it is that we do here: it all matters.
Everything we, what you, do. We know, above all else, this to be true:
It all matters.
Everything you do. Every single thing.
It all matters.
*I’d like to tell you guys a secret. We do moderate comments because you never do know if/when an Internet Mole Person may scurry up to shit on things. It’s our way of protecting you and every other person who uses the site from the ugly bits. We moderate so that you can share your ugly bits without fear.
With the exception of a Jehovah’s Witness trying to convert The Band into their, uh, program? Church? Erms, I don’t know much about it. But with that exception, I have seen maybe 4 comments deleted and those were people trying to raise money or promote their own blog. You just don’t get any hate. Way to be awesome, The Band.
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.
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.
*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.