Embryonically, I had the idea for Band Back Together after my daughter, Amelia, was born and landed in the NICU with an extremely rare neural tube defect called an encephalocele. I’d run multiple-user blogs before; in fact, my first blog was a group project. But the idea of creating a space like this was daunting.
First, I had to figure out what the hell this space was supposed to be. My initial thought was to make it a place for special needs parents. Then I figured that I should add my baby loss and infertile friends into the mix. Then I realized that I was thinking too narrowly. I’ve never limited what I do on my own blog (I don’t, I want you to know, think of this as my own blog. I think of it as yours), so why should I start here?
Band Back Together is a light in the darkness.
Our darkness may not look the same, it may not feel the same, but underneath, we are all the same, and we are all so very good. This space and the community we have created proves it.
I am truly honored to have all of your stories here. I believe in what we’re doing. I believe that each of your stories will touch somebody else who may still be in the dark. I believe that someday, someone will stumble here and find your words, and when they do, they will be moved. They will sit on the other side of the computer monitor, just as you are now, and they will feel the light breaking through the darkness. They will feel hope.
You may not think that what you do is important. You are wrong. You may feel like your story isn’t good; it isn’t enough. You are wrong.
Every word you write connects you to another.
So please, Pranksters, write hard. Help me get our words; our stories to other people. Tell your stories – all of them – and please, help me spread the word about the site. It’s time to take Band Back Together to 11.
December 31, 2009, I wrote this,
So I approach 2010 full of renewed hope for the future, because no matter how full of the darkness I feel, I can feel the light on my face and I know it’s all around me. Soon it will be within me.
I am hopeful.
I have hope.
Happy New Year.
Through you, I have found my light. I was right. It is so, so good.
Thank you for helping me find my light.
A very Happy Thanksgiving to each of you, Pranksters.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, 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 soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), 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.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
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 anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as 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 or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
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 his words.
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; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters 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.
Alex and Ben came in a bit after I’d gotten cleaned up. 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 (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please 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 wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, 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. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried 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 decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU 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). 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, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. 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.
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.
Fucking bitch.
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. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. 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. A nurse passing by my room 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 anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
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 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. 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.
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.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation services.
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. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
No.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
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 the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
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.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, 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 soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), 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.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
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 anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as 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 or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
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 his words.
After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters 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.
Alex and Ben came in a bit after I’d gotten cleaned up. 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 (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please 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 wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, 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. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried 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 decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU 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). 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, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. 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.
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.
Fucking bitch.
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. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. 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. A nurse passing by my room 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 anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
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 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. 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.
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.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation services.
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. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
No.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
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 the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
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.
Even in the NICU, she made her temper known. Her furious bleats echoed from the previously calmer walls, disturbing the other tinier occupants and their parents, and I had the good grace to feel sheepish as my daughter wailed fiercely, her gigantically fat legs and arms pounding against the sides of the isolette.
“Let me the fuck outta here!” she hollered without saying a word.
I echoed the sentiment, with my own words, of course.
My daughter, she is a fighter.
At birth, my Amelia Grace, the fighter, born with her brain hanging from her head, she disturbed the entire labor floor with her angry screams. Indeed, one of the only clear memories I have of her birth is her shrieks, so loud, so furious over the grievous sin of having been forced to be weighed.
(I, of course, feel precisely the same way every Friday when I am weighed in, but, you know, I am much more in control of my tantrums, so I can shriek QUIETLY before having to see the number on the scale)
This trait, this fighter trait, it has never left my daughter, my warrior girl, and it is with intense pride that I see her furiously beat her hands against the floor, shrieking in anger over some injustice, because it is so familiar to me. She is her mother’s daughter and she should know how to fight.
Yes! I say to her, YES, my brave, sweet girl, you FIGHT against it. You get good and god-damned mad and you take that anger and you channel it into something good and you use it for all it’s worth. That is the tiger in you, my child. And you let that tiger out and you let it ROAR and God HELP anyone who gets in your way. That fight will remind you you’re alive.
My little Amelia is a warrior.
If anyone should be born with the spirit of a warrior, passed so handily down from her mother’s DNA, I think it should be a daughter, someone born with the odds stacked so heavily against her.
Still, she doesn’t speak to me and tell me the secrets of her heart, although when I look into her deep brown eyes that mirror so closely my own, I can see them there, just below the surface. The Little Prince was right, what is essential is invisible to the eye. And when my heartstrings pull painfully in my chest, imagining the times when it will be so hard for her, I comfort myself in knowing that the warrior heart that beats within my own chest beats within hers as well.
The secret place, the land of tears, well, that will be hers alone, as it is with all all of us.
As I look at her, awestruck, often bemused by her anger, flared up by the terrible injustice of having been told, “no, no we’re not having candy for dinner,” I never forget how lucky I am to have her by my side.
Her speech therapy will begin soon. She’s operating at quite a delay, backsliding from even where she was several months ago. So now we put on our platinum battle armor, polish our diamond coated swords and get ready, because it’s time for the fight to begin.
My Miracle Mimi, my Warrior Principessa; it’s you and me against the world, kid.
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.
