Some days it’s easy to ignore the realities life throws in your direction. Other days, reality hits you so hard it’s difficult to breathe.
As I was lying in bed last night, I thought about what it would be like to lose my dad. He’s always been there, calm and ready to listen. My mom and I talked on the phone yesterday. He seems to be doing better, almost as if nothing happened. But something did happen. We just don’t know what or how much damage it may have caused. Maybe it was nothing and we’re making it out to be more than what it really is. But what if we’re not?
She talked about finding his life insurance papers and needing to start making funeral arrangements. Sounds grossly morbid, but when my grandmother died, she had most of it already planned (burial plot, casket, funeral home, etc) which made the process for my mom and my uncles a little easier to bear. So I suppose that’s what she’s doing as well. It may help in the process of mentally dealing with the impending loss.
I was born to parents who didn’t want me so my adopted mom and dad took me in when I was just a baby. They’re all I’ve ever known. My dad started a new family after the death of his first wife. He supported my mom in the decision to adopt two children and start over late in life, even after having four children of his own. My mom always said he was so supportive. He would get up early in the morning to get me out of bed and walk me around their apartment and tell me all the stories about the photos hanging on their walls so that my mom could sleep just a little bit longer.
The age difference between my mom and dad has become more pronounced over the last several years, but even more so now. He looks like an old, sickly man instead of the strong man he used to be. It’s terrifying to imagine what losing him will be like. Maybe we’re all getting ahead of ourselves. Maybe he’ll be fine for a long time still. Who knows? With all the advances of modern medicine, people still die of terrible things while taking dozens of pills until they finally just give up. Sounds deeply depressing, but it’s true.
I talked to him on the phone last night, and he didn’t even mention that anything had happened. Denial maybe? Or he just doesn’t want to talk about it because it’s scary thinking about the future. I desperately want him to call my cell phone and leave a message. After last week’s Postsecret update, so many people have voicemails from lost ones so that they can remember them and hear their voices. The cell phone carriers also work with people to get those messages saved so they will have them forever. I want that.
Thinking about the past, there aren’t that many photos of us together. We weren’t much about taking photos when we got older. Regret surrounds me. All the what-ifs and should-haves. I get the sinking feeling that the sand is slowly coming to an end in the hourglass.
It brings me back to the death of my grandma a few years back. It was the only death I had been keenly aware of and I was present for the last few hours of her life. I remember it vividly. We knew she was sick and wasn’t getting better. She took a turn for the worse when I was getting ready to visit my college of choice for undergrad. It was a Spring day in April 2004. Spring was coming and the forsythia was blooming. I remember thinking how beautiful it was and how she would have loved to see them in full bloom. We got back late that night, and I went to visit her in the nursing home. It was like I entered an alternate universe seeing someone I didn’t know gasping for breath. It was horrifying.
I’m scared. I’m not ready for this. Not yet. I really didn’t think it’d be so soon.
“Is that the route we’re going, dearie?” another crooned as a chipmunk scampered quickly up its trunk. “Order us around and use us up until our corpses are sucked dry and then move on to the next castle? The next dark forest? It’s a pity this isn’t Transylvania; you’d have more friends of your kind there.”
“I don’t have any friends, and if you don’t help me, I never will. Please help me hide this key,” she pleaded, feeling her specter growing closer as the sun set and the shadows grew long.
“I’ll take it,” a delighted childlike voice piped up, and behind her stood the embodiment of her slightly younger self, twirling in the breeze without a care in the world. “I’ll hide it somewhere safe.”
“No, pick me!” said another, looking up from the picture book she’d been reading beneath a tall oak tree. The child looked identical but even smaller, hunched on the ground as though trying to take up as little space as possible. “I know all the best hiding places.”
The trees fell silent and watchful, and the shadows lengthened ever further into the clearing. A bright, sinister laugh caught in the wind as the shadows coalesced into a her that was her and wasn’t her at the same time. Not-Her flashed an impish smirk, and its lifeless, dull eyes fell from one child to the other.
“Can’t you just go away?” the princess snapped, loathing Not-Her and the slimy, fetid aura which left lingering trails of filth in the devastation that followed its noxious path.
“Oh, darling, once you decided to offer your heart to a stolen child–whichever you choose in the end–you let me out to play and now I’m here to stay.” The sing-song lilt of the Not-Her’s rhyme took on a malicious edge, and it was true–when the princess looked down at the key in her hand, its edges had become translucent, and Not-Her began to solidify.
Not knowing that this choice would cost her sweeping graveyards of friendships that chipped away in small pieces at the soul she’d worked so hard to keep whole, the princess closed her eyes and felt two small hands close over hers. When she opened them, the “stolen children” –eerie echoes of her past selves whose playful laughter remained even after their departure– had taken the key with them.
The wind whispered through leaves that shook on their branches and Not-Her cocked its head to one side as though trying to decipher the words. Already some of the imperfections had smoothed; the raised red bumps vanished from its skin, its face was no longer brittle and broken, the pockets of baby fat she’d loathed had disappeared from its waist, and a dark twinkle shone from its eyes.
“What does that mean?” the princess asked slowly, watching in growing horror as her own skin grew luminous and she could see the dewy grass sharpen behind her rapidly vanishing hands.
“Haven’t you ever heard of irony?” Not-Her asked in an imperious tone, staring down at the princess as she shrank and faded while the sun sank behind the trees into an explosion of golds, pinks, and purples that washed over the sky until they were streaked with falling darkness. “You can’t exist while I’m out walking around, stupid. After all these agonizingly boring years of biding my time and waiting for you to expire on your own, I’ve finally come alive–as was always meant to be–and you’ve dwindled down into so much insignificant nothing. Sucks to suck, don’t it?”
“That’s not what I wanted!” the princess cried, the leeches tightening their enclosure around her throat as the last of her voice came out in a long, keening wail. “This isn’t fair! It isn’t right!”
“You’re pathetic,” Not-Her sneered, finally sauntering over with a spring in its sprightly step, tucking the princess’s hair behind her ears and preening its own shining locks with long, polished, perfect nails. “Didn’t anyone ever teach you to read the fine print before you sign on the dotted line, moron? All those years of reading and not an ounce of common sense, even after all those sycophantic nobles went prattling on about how you had so much ‘potential’ and ‘promise.’ What a waste. You would have ended up a failure anyway if it weren’t for me. And the best part?”
Not-Her got even closer as the princess had nearly disappeared, bending over and leaning in close as if to share a priceless secret. “Nobody will even know you’re gone.”
The princess clutched the cavity where her heart used to be, her fingers skimming over the infinite infinitesimal gashes that scarred her nearly transparent flesh. Her mouth opened in a silent scream, and Not-Her threw back its head and laughed hysterically as though it were the funniest joke it had ever heard, sashaying out of the clearing without a backwards glance and, if the princess wasn’t mistaken, with a raised middle finger.
“You know, dear,” one of the trees murmured, shifting uncomfortably, “she didn’t tell the whole truth. It’s not like you’ll be gone forever. You’ll still watch like a silent passenger–as she did for so many years, fed on a steady diet of selfishness, recklessness, insecurity, instability, and rage–and there’s still a chance you can take her place.”
“How?” the princess mouthed in a final frantic plea as her two younger selves peered around one of the trunks on opposite sides, the younger looking at her with something akin to confusion blossoming over her face as the elder’s was a mask of pity, eyes brimming with unshed tears.
“Well, that’s the hard part, you see. You’ll have to watch everything she does with your eyes wide open, and one day, when you’re strong enough again to withstand your own erasure and confront the truth, you’ll have to hold yourself accountable for her transgressions. She was born from you, you know,” it finished reproachfully, as though this was obvious information that the princess should have already known.
And perhaps she had.
She just hadn’t wanted to believe it.
Her elder younger self walked over and took the princess’s vanishing face in her small, unblemished hands. “I forgive you,” she whispered, as the last of the princess faded against the inky expanse of sky that glittered with stars. “It was selfish and mean, choosing to hide. Locking up the last part of you because you were too scared to face her alone in the darkness. But you were only trying to protect us. You didn’t know. And if you hadn’t, she would have poisoned us with resentment and bitterness and numbness, and then we really would have been gone. This way, we just kind of… fade. Until you can defeat her.”
It would be many years before the princess would finally be ready to fight back. Just as she grew stronger by forcing herself to watch and suffer the humiliations that Not-Her concocted with arrogant glee, Not-Her did also by forcing herself to forget that the princess had ever existed through sheer force of will.
Not-Her led many would-be princes into bogs that would trap them like quicksand, basking in the praise of the dragon king and the queen as trophy cases piled with achievements that looked solid but felt hollow. Not-Her proved shamelessly insatiable, gobbling friendships like chicken wings and picking its teeth with the bones, filling endless trophies with the excuses for its behavior until it needed to earn more just to make space for the deflections and denials that stacked until they flowed onto the floor.
All the while, the princess watched, and over time, she tried to suspend her judgment. She rationalized the devastation that Not-Her created, gaslighting herself before she realized that a single match could send her up in a raging inferno.
She pined for each prince to save her, lamenting their slow, confused descent into the marshes in horror–one after another.
Surely one of them would see through Not-Her. Surely one of them would be strong enough to stand up to Not-Her, though the princess watched in a bizarre, sadistic commiseration as some of the princes turned out to be Not-Hims in disguise, twisting Not-Her’s own game around on her. The princess soon learned to spot them long before Not-Her, wishing she were a poltergeist who could shake sense into Not-Her and lock it back into nothingness.
She hated Not-Her.
She wanted nothing to do with Not-Her.
She was ashamed of Not-Her.
She, like ghosts around her who rose from the graves of friendships gone awry to watch the mindless devastation, harshly judged every move that Not-Her made until Not-Her stumbled into the clearing one day with arms bent at impossible angles, neck hanging awkwardly limp with its head twisted the wrong way, and once-proud eyes that had glittered with cold, calculating malice now cast down in humiliation and defeat.
“Oh, how are the mighty fallen,” the princess murmured to herself, tracing the skin around her own face that had somehow healed into something less brittle, something that didn’t flake into oblivion at the slightest breath of wind. Not-Her shuffled awkwardly to face away from the princess in order to look exactly where the princess was standing, its bloated head swollen under the weight of its poisonous pride. Not-Her had come into its own scales at last, and cheap copies of the dragon king’s that had once terrified the princess into submission littered its fragile skin like scattered tiles.
“Are you happy?” Not-Her wailed, its face caked with snot and crocodile tears that the princess didn’t buy for a moment. “Is this what you wanted when you tried to escape all those years ago?”
“All the education in the world didn’t teach you a damn thing,” the princess muttered, staring down at her hands in surprise as the delighted laughter of children rang like bells through the trees. Their last conversation rose to the surface of her memory, and she snorted. “Irony, indeed. You’ve been free for years, yet all you have to show for it is boundless intelligence and not an ounce of common sense.”
“Please,” Not-Her begged, and something in its empty eyes shifted. Remorse bled in dark rivulets from its pores, and if the princess wasn’t mistaken, it truly appeared to be…
… Dying.
“Please don’t let it kill me. It hurts. It hurts, and I don’t want this. I want it to stop. I want it to end. I can’t take it anymore,” Not-Her sobbed, and when its form collapsed unceremoniously into a misshapen heap on the ground, the princess nudged it with her foot and sneered.
“All high and mighty now, are we?” one of the trees twittered, observing shrewdly as the Not-Her faded slowly and the princess gazed down in disgust, wearing her years of silent observation like a mantle across her shoulders.
“What do you mean?” the princess snapped. “This… This thing has eaten over half of my life and left me for dead. It’s torched bridges, been reckless with hearts–including its own–and now it wants me to pity it on the same grass where it tricked me into sacrificing myself into nothingness.”
“Yes, dear, but you made the choice,” another tree reminded her gently. “No one forced you to the clearing. No one else ripped out your heart and hid it where not even you could find it so it’s never broken. You did all of that.”
“Don’t give me that self-righteous–” the princess began, but she gasped in horror as the outlines of her own hands began to fade once more and Not-Her became faintly opaque.
Silently, her younger selves approached from between two of the trees with the two halves of the single key she’d given them so long ago clutched tightly in their small, mighty fists.
Forty-five years ago, I came into this world after the expected length of time with all 10 fingers and all 10 toes. New-baby plump, pink, and hollering out my displeasure at being squeezed out of my warm, comfy spot. I was the fourth child in my family; the first two girls were fine, the third did not survive past his premature birth.
The fifth, my brother, arrived some three and a half years after I did, hale and hearty.
I was born broken.
Only no one could see it: it was on the inside. Within hours it became apparent something was wrong. I was not keeping formula down, I couldn’t tolerate my mother’s breast milk, formula, formula substitutes of any kind. I did not have a single bowel movement.
Tests were run, x-rays were taken.
Turns out I had the congenital defect, “Hirschsprung’s Disease.” A major part of my intestine, to put it simply, did not have nerves and therefore didn’t work.
When I was two weeks old I had my first surgery. Between a third and a half of my large intestine was removed and a colostomy was performed. There are a multitude of photos of me with both a diaper applied the standard way and one wrapped around my tummy over the colostomy opening. My mother became very adept at doing massive amounts of laundry. This is before the era of disposable diapers.
Over the course of the next several months, I had multiple abdominal surgeries.
At the ripe old age of 7 months, it was time to put me “back together.” They operated on me once again and did a re-anastomosis. A re-anastomosis is a surgery that re-connects the remaining colon to the portion of the colon near the rectum. A re-anastomosis was performed so that the colostomy can be closed and I could begin to have regular bowel movements.
My first memory is from when I was seven months old. I have shared this memory with my mother, with whom I haven’t really talked much about things other than the above. I remember lying in a crib, my legs spread and ankles tied to the crib bars, and my wrists tied as well. I remember laying there just looking at my mother through the bars of the crib.
Not upset, not crying, just looking at her.
She’s told me that this exact moment did, in fact, take place. That I was calm and accepting of whatever happened. She explained that I had to be kept perfectly still after the re-anastomosis surgery because, back then, they had to apply clamps to the “seam” where the intestine was put back together. These clamps were inserted through the anus and could NOT be removed or dislodged or the seam would come apart. The clamps would fall off when the seam was sufficiently sealed and the tissue was not as swollen anymore.
Thankfully, this is no longer a necessary part of re-anastomosis surgery.
For a few years after this, I would continue to have follow up surgeries for scar repair, another infection and incisional hernia. And it took years – well into elementary school (which is another story) – for me to learn how to control my bowels.
I don’t know what it’s like to not have a roadmap of scars on my belly. For one surgery they even opened me from the back, putting the incision in the crack of my bum. This is just my reality.
I’ve had additional surgeries, mostly related to the massive amount of scar tissue from my surgeries as I was an infant. I ended up having a complete hysterectomy (I was only 24 years old – I’m honestly still dealing with that loss).
But I’m alive. My parents told me the doctors said it’d be a miracle if I lived past 10 years of age. They didn’t tell me this until after I was well past 10 years old… and now I’m 45. I guess it all worked.
To top it all off, I was born in southern New Mexico to a dirt farmer and his wife in the 60’s. Imagine the empty rattling when one shook the coffers. My family reached out to the March of Dimes, and they were wonderful to us. There wasn’t a children’s hospital in southern New Mexico so all these surgeries and medical care took place at the nearest one – in Denver, CO! The March of Dimes covered many costs for my mother and I to fly back and forth, the costs at the hospital and the surgeries.
Thankfully, my level of Hirschsprung’s was a fairly mild one. I was lucky. Most babies with this disease have much more severe issues and more extensive damage/surgical needs.
Some babies with Hirschsprung’s even face mortality at birth or soon after.
I’m still broken in other ways, but in this, I am a survivor.
Aunt Becky’s daughter, Amelia, is the sole reason that The Band exists. Amelia, like so many of our children, was born with a birth defect called an encephalocele. She’s gone on to vigorously beat neurosurgery and the odds stacked firmly against her.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
She was born in September. It was hot. And in 12 weeks, we would be speaking a new language.
My baby was just 2 days old when we learned that our “perfect” world was not to be. My whole life I dreamed of motherhood. It’s what I wanted to do, more than anything. Be a good mom. Raise a family. Teach a little person about my faith.
Rewind to my college days – I was one of those students that changed majors more than once. First I was going to be a teacher; I majored in elementary education. Then after two summers directing a summer camp, I learned that wasn’t really for me. I wasn’t a fan of the parental drama.
Then I was an accounting major. I was going to be a CPA. Then I realized I needed more and ended up an accounting minor with a business administration major in both finance and marketing.
But none of that told me what I wanted to do with my life.
All I cared about was that someday I was going to get to be a mom.
I married my high school sweetheart. We’ve been together since 1992. We got married. Got jobs and got ready to have the “perfectly perfect normal life” that we’d always planned. God has a funny sense of humor sometimes.
And then almost 3 years after we got married, 11 years after we first met, we had Natalie.
And then in 2 days, our world was rocked.
Her bilirubin level of 22 just would not go down.
Our family doctor made the decision to send her to a bigger hospital in a bigger city. He told us that his ego was small enough that he knew that she could get better care and more answers there. The ambulance drove away, and we felt terribly alone. She was whisked away to a NICU and our baptism into a world of medicine was begun.
Our baptism was truly begun with a Baptism.
Natalie was taken to a NICU in a town an hour away from where she was born.
My baby sister Bridget was taken from the same hospital to an ICU just 21 years before, after she was born. She never returned home.
I know that was on my dad’s mind.
My baby sister was born with Transposition of the Great Vessels. She lived 7 days. She was operated on by a fantastic surgeon, who just happened to be the very same surgeon who would perform our daughter Natalie’s very first surgery, a cholangiogram.
The surgeon did his fellowship at Children’s Memorial in Chicago. This same place where Natalie would someday have her liver transplant.
So many coincidences…
Our NICU surgeon made the comment to us that is the title of this entry, “We think it’s Biliary Atresia, but that’s really bad so hopefully that’s not it…”
I don’t hold a single ounce of ill will toward the man. Natalie’s case confused everyone.
She was born with a gallbladder. Albeit a shriveled, ugly, non-working gallbladder. But a gallbladder, nonetheless. And that’s just not common in Biliary Atresia.
In “classic” biliary atresia, by the time most kids are born, their bile duct structure (gallbladder included) has shriveled up and is not working. But Natalie was born 5 weeks early, and it’s a progressive disease – meaning it gets worse as time goes by.
Back to my dad. He’d seen things end badly for his child. I know he had his grandbaby’s soul in mind when he told me that we needed to baptize her.
I am a Catholic.
New babies = Baptism is second nature for me. But the reality of this was too much to bear. I’d had the story of Bridget’s birth and death memorized. I was 4 when she died. Her death is my very first memory. Her death prepared me for my future role, of that I am now certain. But in that moment, I could not face it.
Here I was 2 days after the birth of my child.
I’d had pre-eclampsia. I was induced just two days before following 35 weeks of pregnancy. I was a swollen, puffy blob, having gained 30 pounds in the last month of my pregnancy alone. My husband said that the moment I gave birth to our daughter, my blood pressure had skyrocketed to 250/204. No joke. I was given magnesium to prevent a stroke or a seizure.
My mind was so fuzzy.
I was still in shock.
I wanted my “normal” life back!
I was in denial.
This wasn’t happening.
Why was my dad suggesting that we baptize my baby? Did he think she was going to die? I dug my heels in. (At least I tried to. I could only fit my fat feet into a chewed up pair of black sandals – that my German Shepherd had gotten ahold of.)
So my dad did the good dad thing. He did the responsible thing. He overruled me.
He called our dear friend, the priest. He had been the priest at our church when Jason and I met (we met at church, have I mentioned that?). In walked my dad and the priest, through the sliding NICU doors and over to Natalie’s bassinet. I watched it in slow motion. I remember it in slow motion. I don’t even think I have any pictures of the moment that is forever etched in my mind.
At the time of Natalie’s first surgeries, we had not created a website for our kid, Facebook was not around, and MySpace was a name I called my bedroom. What I am saying is that I did not document my thoughts and feelings at that time, the way that I do now. Not that you would have wanted me to. You see, for the first 3 weeks of Natalie’s life, we lived in our home and visited our baby in the NICU.
We did not know in the beginning that Biliary Atresia would be Natalie’s final diagnosis. She began her stay in the NICU under the UV lights, like any other jaundice case. We’d work on “normal” things, like trying to get her to eat. The first day it was 15 ml every 3 hours, then 20ml, then we finally worked up to a whopping 30 ml. I was encouraged, cheered on even, to keep breastfeeding. And so I did. It gave me a purpose. A sense of control.
And when you can’t control anything, you’ll control that one thing with everything you’ve got.
I took to it like a champ. Strike that. I took to pumping like a champion dairy cow. I focused on finding ways to increase my milk production levels. I found special teas marketed themselves as “Mother’s Milk” tea. My loving husband was my biggest advocate. We’d walk down a long hall, into some section of the hospital that was no longer in use, except for the rare nursing mother pumping session. There was a room with 3 old chairs, a sink, paper towels and soap (for keeping supplies clean) and outlet. Not much more, except for some posters donated by a La Leche League USA. I’d plug my Medela Pump into the wall, take a seat on the old metal chair that was missing chunks of vinyl on the seat, and watch the milk rise in the bottles, feeling victorious as the ounces would climb higher and higher, knowing this was for my girl. The aches I felt, sitting hunched over, were worth it. This was for Natalie. This was making her stronger, this I could do.
After a few days, they did a full blood work-up. Her GGT level was around 1700 (normal is 5 – 55), letting the doctors know that something else was wrong.
They’d take her for an ultrasound. “Inconclusive.” She was born with a gallbladder, after all, and was stumping them.
After this happened 3 times, she had a HIDA scan, and then an open cholangiogram and also a biopsy, all on the day that she turned 2 weeks old.
That’s when our surgeon met with us and drew on a paper towel what we were looking at.
He had opened Natalie up, injected dye, and then tilted the table to watch the flow of the dye. And that’s when he said that he hoped that this wasn’t Biliary Atresia. He and the Pediatric GI attending to us in the NICU, both referred us to a wonderful team of doctors at Children’s Memorial in Chicago. And in the meantime, the biopsy slides were sent to Mayo clinic.
Mayo’s answer came back “Biliary Atresia.” But all other local doctors disagreed. So we got the slides back and took them with us to Children’s Memorial.
When we arrived in Chicago, it was like no place we’d ever been. There were bright colors everywhere. There were multiple waiting rooms with lively fish swimming in tanks. We were escorted to an examination room on the first floor. We thought that we must have been in the wrong place. There were no plaques or diplomas oh the wall. We met two doctors and told them we’d hear the term “breastfeeding jaundice.” The awesome doc, the head of the pediatric gastroenterology at the hospital, gave me a look like I’d just crawled out of a cave. “That is a myth. We’ve disproved it.” OK, I thought. Not going down THAT road with him. I had just had my first lecture by a genius, and I wasn’t a fan of lectures. But it let me know that we were in the right place. They knew their stuff. And above all else, they forbid me to feel guilty.
The fellow (also a doctor, so many levels of hierarchy at the hospital) took the slides and reviewed them. He asked the genius doctor to review them. Their first review said that she may have Cystic Fibrosis. They said it just did not present like “typical biliary atresia.” And so, sweat tests were done = “negative” was the answer. Genetic tests were sent away, and those took 6 weeks to get back. 6 long weeks of desperate waiting. The results came back negative.
After we had left the NICU, we waited for the other shoe to drop. We were still waiting. We waited for the bad news that we knew would come. Every inconclusive answer left me feeling more and more frantic. Genius doctor had told us that for a Kasai Procedure, the procedure to treat Biliary Atresia, to be most successful it must be done by the time the child is 12 weeks old.
The clock kept ticking.
Just a few days later we returned to Children’s and during a follow-up exam, Natalie happened to have a dirty diaper. Genius doctor took one look at it and re-diagnosed her with Biliary Atresia.
Who knew the answer was in the poop?
She was admitted and had another biopsy; it was again inconclusive. The kid is consistent. She then had another cholangiogram, this time a percutaneous type, which was then followed by a Kasai Operation on December 19 of that year. She was 11 weeks old. We’d gotten her surgery in by the time she turned 12 weeks.
Her new surgeon (also a genius), called hers a case of “correctable Biliary Atresia.” We’d learn later that things are not always what they seem and rarely are they as simple sounding as something called “correctable.” But, for the moment, we had an answer.
She got to come home on Christmas Eve.
Little would we know that within a year she would be listed for a liver transplant. I could not have guessed at this point that when she turned 17 months old that I would be giving part of my life to her.
Some days it’s easy to ignore the realities life throws in your direction. Other days, reality hits you so hard it’s difficult to breathe.
