Tag Archives: life

Dr. Potato – Cold as Ice.

19 Nov

I find it quite remarkable that I don’t have a specific memory of learning I was pregnant with Oli. Such a life altering moment should bring forth some special moment in time. When I think of learning about my son I instantly think of a small bathroom with light blue walls, a blue flecked tiled floor and a gleaming porcelain sink. I remember standing at the sink in my faded blue scrubs and peering down at two faint pink lines on the pregnancy test.  I was overcome with giddiness and an unabashed excitement bubbled up within me as I ran to grab my phone to call my mom. Too elated to abide by the societal norms of not disclosing a pregnancy until the third month; I couldn’t wait to tell everyone, and I wanted to tell them now!

When I think of that moment with Oli, there is nothing.

On Oli’s second day of life, I again awake to a nurse gently shaking me, instructing me that it’s time to feed my baby.  In contrast to the dark circled, glassy eyed, middle-aged woman from the night before, this nurse’s eyes are clear and focused. She is young, sporting a short bob that frames her heart-shaped face. She smiles warmly at me as I attempt to rub sleep from my tired eyes. I do not recommend having a baby so late at night.

Worry immediately intercepted my thoughts. Still half asleep, I’m not entirely sure why because I feel reassured that although Oli was born over a month early, she is breathing fine and nursing okay. Because she is so small, she did have a little trouble latching the first time I nursed her.  I asked the nurse for a bottle of formula, paranoid that she wouldn’t get enough milk and end up dehydrated. I was also worried about her weight. Newborns usually lose some weight in the first week, but I didn’t want to take any chances or give the doctors any reason to keep her.  I wanted to do everything I could to make sure she came home with me and didn’t have to go to the NICU.

My thoughts instantly returned to what the nursery nurse said the night before and my daughter’s continued insistence on keeping her eyelids squeezed tight.

I couldn’t get her eyes open.

I’m anxious for the pediatrician to come in today.

Several hours later, I sit alone in my hospital room eating slightly cold chicken fried steak, lumpy mashed potatoes and enjoying some kind of orange flavored, jello-y, marshmello-y, foamy dessert that can only truly be enjoyed when confined to a hospital bed.

Seth left an hour before to go and pick up my son from his grandma’s house. I’m excited for him to meet his new baby sister. We practiced for weeks, buying him his own baby doll, so he could work on holding and gentle touches.

“Bee-bee” he said, as he looked up at me with his enormous aqua blue eyes and smiled as he proudly cradled the doll in his arms.

“Yes, baby. That’s right! I see you’re being so careful and loving with your baby. You’re going to be the best big brother.” I would pull him into my lap, squishing my nine-month pregnant belly between us, trying to soak up the last few weeks of solo time with my boy.

I’m finishing my delicious dessert when a short, dark-haired man in his 50’s knocks on my door, barging through before I have a chance to say, “come in”.

“Hi. I’m Dr. Wagner. I’m here to look at your baby.” His demeanor is serious and cold, emphasized by his inability to make eye contact with me as he speaks.

He’s wearing a blue checkered button up shirt covered by a crisp white lab coat that looks as if it’s been freshly pressed. His brown hair is short and combed to the side and his wire rim glasses continuously slide down his nose, needing to be adjusted every few minutes.

I’m so nervous now that he’s here to look at her and I’m even more nervous because he’s so serious and stoic. He walks across the room and begins unwrapping Oli, who is soundly sleeping in the clear hospital bassinet next to me.

“Nice to meet you. I’m glad you’re here. The nurse last night told my husband that she is worried about the baby’s eyes. I haven’t seen her open them yet, but I’m sure it’s nothing. I’m sure her face is just swollen. I was in labor off and on for a few weeks you know. That could cause some swelling. I took ready good care of myself during my pregnancy and always remembered to take my vitamins. I’m not on any medications and all my ultrasounds were normal. I’m sure they would have noticed if there was something wrong. I’m sure there’s nothing wrong. I just need you to look at her and make sure.”

Oh my god.  I can’t get the steady stream of word vomit coming from my face to stop.

 Shut. Up. Stop talking Shannon.

I don’t stop. I continue. “I’m a NICU nurse and I’ve taken care of a lot of babies, and I know that there is no way her eyes can be fused at 35 weeks and like I said, I was in premature labor for a while and maybe that has something to do with it. I’m really glad you’re here. Did I say that already?”

I can feel my face flush red hot, still unable to stop the verbal diarrhea spewing from my lips.

I could be speaking Chinese, German, or Swahili for all the attention he is paying me. He isn’t listening to me at all.

“Mmmm..hmmm.” Is his only response to my diatribe of nonsense.

He is inspecting her tiny form. Unwrapping and unzipping, lifting, turning, listening, palpating, looking at every inch of her little body…that is located below her neck. He has yet to look at her eyes.

Deep down in that moment, watching his hesitation and unwillingness to look at the part of her body that he had been summoned to inspect, I knew in that moment that my fears were about to be realized.

There is something wrong with her.

Suddenly he stops his prodding. He has finished the exam. He hastily tries to rewrap her tiny form in the most half assed, “I don’t have time for this” kind of doctor way and finally raises his eyes to meet mine. He remains cold and stoic.

“I think she either has really small eyes or no eyes at all. Microphthalmia is what it’s called, and she’ll probably be blind.” The words are hurled out of his mouth at me like hurricane propelled rain drops blasted against glass, shattering me to pieces. Each syllable strikes with the power of gale force winds, relentless and unforgiving, as if intent on breaking through the fragile barrier of my composure. In that moment, I am nothing more than glass under the assault of a storm, fragile and vulnerable to the onslaught.

I do the only thing I can do. I freeze.

As soon as he was finished with his initial word assault his eyes again fell to the floor. Now he raises his gaze to meet mine again and with all the emotion of a potato asks, “Do you have any questions?”

I am a statue. Unmoving. Unbreathing. Unthinking. Maybe if I just don’t blink, don’t speak, maybe if I can hold this stillness forever, I won’t have to acknowledge his life changing words.

“Oh, we should check her kidneys too. She may not have any kidneys. I knew one other kid, about 15 years ago, that kid was born with no eyes. He didn’t have any kidneys either. I’ll order an ultrasound, and we’ll make sure.” This cold, unfeeling, unemotional man then has the audacity to smile at me. Even as I sit with my mouth ajar, tears filling my eyes, still not able to speak, he smiles at me as if he’s just told me about the weather.

“It’s going to be 85 degrees and sunny today!” (warm smile) “Do you have any questions?!”

I stare blankly at him as he mistakes my stunned silence as understanding and acceptance and turns towards the door.

“Well, it was nice to meet you. I’ll put in orders for a CT of her head and face and an ultrasound of her kidneys.” Once again, his eyes fail to meet mine as he ducks his head and turns toward the door. It quickly shuts behind him and then he’s gone. He’s gone and I look around my drab hospital room and no longer recognize my environment. The tan curtains look the same, the bedside table looks the same, my half-eaten lunch looks the same. I lift my hands up in front of my face. I look the same. Why do I feel so different now?

I look over to the peaceful baby soundly asleep in her bassinet, barely bundled back into her blanket. She doesn’t look the same. She doesn’t look the same at all. She’s different. She’s someone that I housed inside of my body for nine long months and now I don’t recognize her. She is a stranger.  Two sentences. 10 minutes, and my entire life has changed.

How am I going to tell my husband? How in the hell am I going to utter the words, blind…no kidneys. Why did this burden fall on my shoulders? Desperate not to be the one to shatter my husband, I also don’t want that doctor to come back in here with his emotionless tone and his slightly bored attitude. I don’t want that guy telling him that all his wonderful dreams of showing his daughter the beauties of desert mountains and Hawaiian sunsets are never going to happen.

I know in that moment what I must do. I must be strong for him.

Stuff. Stuff. Stuff.

I have to pretend that I know we are going to get through this.

Stuff. Stuff. Stuff.

I have to put on my big girl panties and my brave face, and I have to tell him that it is going to be fine. That she is going to be fine.

Stuff. Stuff. Stuff.

Just stuff those feelings down.

Be strong. Be perfect. Be fine.

At that moment my husband walks through the hospital room door. He walks in holding my beautiful blond haired, blue eyed, baby boy. A baby that I do recognize. A baby that I do know.

I am young. I am unprepared. I’m alone. It’s Mother’s Day weekend.

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Open your eyes.

23 Sep

4.

Oliana entered this world at 11:49 pm on May 10, 2007, with her pale, almost translucent eyelids closed.

Gazing into the dark depths of my newborn’s eyes was something that I had imagined as my belly grew heavier with pregnancy. I visualized forming a deeper connection with my tiny new daughter as the nurse wrapped her in a warm blanket, placed her in my arms and I peered into her eyes for the first time.

The pictures that I had seen in my mind’s eye of this moment were unceremoniously ripped from me by a destiny that I couldn’t yet understand.

The delivery was so quick (and painful) and the moment that she came into the world, pink, wet and screaming, I was unaware that my world was about to shatter to pieces.

The neonatologist, who had assisted with her delivery at my request, carefully examined her on the warmer. At 35 weeks, there’s always a slight concern about the baby’s lung development. Thankfully, Oli’s lungs appeared to be in perfect condition as she lay there, pink and crying. After a thorough check-up, the doctor reassured me, “She looks perfect. Good job, Shannon. Let me know if you need anything else,” he was eager to leave the delivery room.

Although he was certainly willing to come to the delivery, my labor was not necessarily something that we wanted to share as coworkers. II completely understood his urgency to make a quick exit and, unable to stop myself from blushing, softly uttered my gratitude as my legs remained splayed apart, now inconveniently numb and confined to the stirrups.

That morning, I had debated even asking him to come to her birth, not wanting to experience this exact situation. Ultimately, the health and welfare of my infant outweighed my vanity and dignity. Even if that meant never looking this doctor in the eye again. If she needed help, I wanted a well-respected neonatal physician in the room, ready to act. Now that everything turned out okay and she was fine, I was second guessing my decision. There certainly were aspects of my body I had never intended to share with a colleague.

Once he departed, the nurse placed Oli on my chest, and at first, everything seemed normal. However, after a few minutes, I couldn’t help but notice that she wasn’t opening her eyes. This struck me as odd, as my son had opened his eyes immediately after birth. Oli seemed to be keeping hers tightly shut. I tried to dismiss the growing unease in my chest, but the feeling persisted, a gnawing tightness whispering again…something is wrong.

The nursery nurse eventually came in to whisk her away from the warmth of my chest. She took her back to the nursery to gently clean her up, administer her vaccines, and apply medication to her eyes, which are standard procedures for all newborns at the hospital.

“Go with her” I instructed my husband, not wanting to leave her alone for a second within the sterile white walls of the hospital. This protectiveness would persist for decades, and Oli would never spend a minute alone without one of us while hospitalized.

Seth accompanied the nurse to watch over our new daughter. When he returned, he shared with me that she was slightly cold, so they placed her under a warmer to raise her temperature. Then he delivered news that heightened my sense of unease.

“The nurse couldn’t open her eyes to administer the eye drops. She expressed concern that her eyes may still be fused shut,” he told me, his eyes betraying a significant amount of fear.

“What? That doesn’t make sense. Babies’ eyes typically stop being fused shut after about 23-24 weeks. She’s 35! No, they’re not fused. They’re just swollen. I’m sure they’ll be fine in the morning,” I responded, trying to reassure both of us.

“Well, maybe” he responds nervously. “But the nurse intends to call her pediatrician first thing in the morning to come and examine her. I’m sure you’re right. They’re probably just swollen,” he appears slightly more at ease, relying on my medical knowledge of newborns.

Despite my efforts to dismiss my concerns, deep down, I knew something was not right with her eyes. She should have been able to open them, or at the very least, the nurse should have been able to.

However, at that moment in time, I forced myself to believe that she was fine. I was exhausted and didn’t have the compacity to explore what that could possibly mean. Even if I had, the result was something I couldn’t have possibly imagined.

The nurse brought Oli back to the room and I tried to sleep. By then it was nearly 4:00 am.

Before I did, I whispered a heartfelt prayer to heaven, the first of many for my sweet girl, which went unanswered.

 “Please open your eyes, baby girl. Please open them and look at me.”

5.

I awoke a few hours later to a nurse gently shaking my shoulder. “Mama, it’s time to feed your baby.”  

Already? It felt like I had just closed my eyes. I looked over into the clear, plastic bassinet that held my sleeping daughter and then at the clock; 5:30am.  

“Will you hand her to me please?” I ask as she lifts the scratchy hospital blanket to palpate my deflating and squishy abdomen. We were transferred to the postpartum floor a few hours after delivery. Unlike the hive of activity on the labor and delivery floor with the sounds of monitors beeping incessantly and the hushed and urgent voices of the doctors and nurses, this unit was quiet and calm. Except for the periodic kitten-like mews emitting from babies still unhappily protesting being ripped from the safety of their muffled, dark and warm environments, this floor is silent. The babies, still unaccustomed to the cacophony of unfamiliar sounds and the cold chill that assaults their once tightly curled limbs, cry out as they flail in the open air.

My infant, cradled in her soft blanket, sleeps peacefully and I watch as the nurse leans into the bassinet.

She hands me my tiny baby burrito swaddled in a light pink and blue striped blanket.  Oli has a fine covering of light blonde peach fuzz on her head. I smile, remembering how focused my attention was on her hair, prior to her delivery. She is bigger than I had expected her to be but still so tiny, weighing only 6lb 0oz and 18 inches long.  Her little fists clenched tight; she pulls her knees to her chest to object the sudden temperature change as I unzip her onesie.

I unfasten the sticky tabs on each side of the reusable diaper to change her and run my hands along her soft new skin. She’s perfect in every way. She has a perfectly round head, ten tiny fingers, ten tiny toes and sleeps so peacefully, all curled up not realizing she now has the entire universe to stretch out in.

I peer into her serene face and will her to look at me. Taking my finger, I run it along her face and tickled under her almost nonexistent chin, trying to wake her. She stirs and slowly turns her head from side to side, attempting to shake this annoying intruder trying to rip her from her slumber. She doesn’t open her eyes. “Oli. Oli. Open your eyes Oli. Please? Please open them for me.” I beg her as she continues to keep them tightly closed.

I glanced over at the snoring lump draped across the couch along the far wall and considered waking my husband, not wanting to obsess and worry alone.

It was probably nothing. A swollen face… nothing more. Nothing to be concerned about. Despite my self-assurances it was becoming increasingly challenging to maintain the illusion that everything was okay.

I couldn’t imagine what would keep a baby from opening their eyes. This was new territory and something I had never encountered while working.

Stuffing the uncomfortable feelings being stirred within my mama heart back down, I put my delicate little flower to my breast and began to nurse.  I would continue to stuff all of my disquieted feelings, until eventually, like a beach ball being held beneath the water, the constant effort led to overwhelming exhaustion, and they exploded to the surface.

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There were not enough drugs.

21 Sep

2.

Months before Oli was born, I just knew there was something wrong with her. At the time, I was working as a nurse in a neonatal intensive care unit. I would express my concerns to my friends at work, but they would dismiss my worries, attributing them to “medical student’s disease,” a phenomenon where individuals studying medicine or nursing start to experience the symptoms of the diseases they are learning about. I remember being in a MedSurg class during my second year in nursing school, reading about different disease processes, and mentally ticking off my symptoms.

“Are my eyes tinged yellow? I have been having some abdominal pain and I have been looking rather bloated lately. How many weekends in a row have I been out drinking with my friends? OMG I have LIVER DISEASE!” The reality was that my eyes were clear, I was suffering from normal gas pains, I had my period, and I had hardly been out drinking at all. I was working a full-time job and was in nursing school. Who had time to go out? But sitting in that classroom at that moment reading about cirrhosis of the liver and I was sure that I had it. It would be a reasonable assumption that I was just being paranoid and that my fear of having a sick child was due to my work environment. After all, 100% of the babies that I saw being born were unhealthy or premature. To me, that was normal.

My anxiety about something being wrong intensified when, at 32 weeks pregnant, I began experiencing premature contractions. After visiting the OB/GYN, it was confirmed that they were indeed real, and I was instructed to stay in bed for a few weeks. I must admit that I am not the most compliant patient. My family can attest to that. So, after about 2 weeks, I convinced myself that I was miraculously healed and returned to work. Predictably, the contractions immediately resumed. I was still having regular contractions the day before she was born, and I called my friend Michelle, a former labor and delivery nurse, for advice. “Michelle, I think something is wrong with her. That’s why I keep going into labor early. Something is wrong.” She tried to reassure me that everything was fine. My mind desperately wanted to believe her words, “She’s fine. You’re fine. You’re just working too much and on your feet.” It’s true. I had been working extra shifts in preparation for my maternity leave, not all of which would be paid.

“You’re probably right.” I conceded. “I’ll lay down and I bet they’ll be gone in the morning.”

But the contractions continued throughout the night and into the morning.  I called my OB/GYN right away at 08:00 the next morning and said, “I’m still having contractions, and I think they’re getting worse! I’ve been timing them, and they are steadily every five minutes.”

I knew that Braxton Hicks contractions, or practice contractions, were common at this later stage of pregnancy, but they weren’t regular like the ones I was experiencing. I could hear my own fear layered deep within my voice. I was scared.  

A few hours later I was sitting in my doctor’s office being told that I was going to have my baby that day.  I was dilated to 5cm and there was no going back.  The fear instantly melted away as excitement became my primary emotion.

I was going to meet my baby girl that day.

As my husband drove us the 30 minutes from the OB/GYN office to the hospital, I forgot my fears and smiled the entire way.

What was she going to look like? Would she have any hair?

My then-17-month-old son, Kekoa, had the unfortunate luck of inheriting my bald baby gene. I, too, had been born a cue ball. He didn’t have one single hair on his head or anywhere, until he was a year old. On the day he was born, the nursery nurse marveled, proclaiming, “I don’t think I’ve ever seen a completely bald baby! He doesn’t even have any eyelashes!”

I hoped that this baby would at least have a little peach fuzz on her head.

Hair- That was the worry I remember going through my mind on that bright spring day.

Looking back, it seems ridiculous, but I had no idea what would come. Part of me is extremely thankful that hair was what my mind chose to dwell on.

A few weeks earlier, when my contractions began, I had been consumed with flashes of neonatal nursing books reflecting pages depicting different genetic conditions and examples of how a women’s body could expel their unhealthy inhabitants. It was as if their body was deciding unconsciously that the tiny form contained within her womb may not be deemed well enough to survive and be better off experiencing an early demise.

Of course, with technology and where we were in medicine in 2007, we had ways of keeping those tiny fetus’s alive even if nature had deemed them unsuited. We now had the means to intercept evolution; with tubes and machines, we could prolong and even thwart those babies’ destinies. Was that always the right thing to do? I struggled between the grey area of being a nurse and wanting to save lives and feelings of cruelty when performing chest compressions on a tiny premature body that weighed less than two pounds.

The medical team would perform painful procedures and tests and give medications and do surgeries, all trying to save the life of a tiny human who, in the end, usually ended up with severe complications as a result of our attempt to “save” them. I imagined these babies spending the rest of their lives hooked up to feeding tubes and breathing machines, never able to walk or talk. Run or play. Smile or laugh. At least, that’s what I thought would happen to them. It would be years before I understood that disabilities don’t equal unhappiness or the inability to give and experience love and life. It doesn’t take away from their personhood. Back then I didn’t know this so I would lie awake at night wondering if I was actually helping or dooming these babies to a life of misery and pain. The truth was, after a few months, I would completely forget many of them. As their parents pushed extra-large strollers out of the NICU lugging oxygen tanks behind them, I would go on with my life. Some of their tiny faces would cross my mind from time to time, the ones that I spent months caring for, but many wouldn’t grace my conscious thoughts again.

 I am grateful that I wasn’t thinking about those tiny faces and that I had been able to contain her safety within my womb for a few more weeks. My baby was going to be born a little early at 35 weeks, but she should be able to breathe on her own and drink from a bottle or nurse from my breast. However, just to be safe, I called the NICU to see if a neonatologist was available for her delivery. In the months and years that followed, I often thought back to the drive to the hospital. I would try to remember my excitement as I waited to meet my new baby girl. I would close my eyes and think about the person I was before May 10, 2007. I was so naïve, happy, and content. Looking at old pictures of myself, I would cry and tell the girl in the picture, “Enjoy that smile. It’s never going to look the same again.”

On May 11, 2007, my excitement was replaced with sadness, which consumed my heart so completely that I thought I would never feel carefree or happy again.

3.

When we arrived at the hospital, I was experiencing regular contractions, five minutes apart. Strangely, I didn’t feel any pain with these contractions. The pain only started when it was time to push and the baby was ready to be born. It felt like my body, the universe, or some higher power knew that I would experience pain for years to come, so it delayed my suffering for a few more hours. I was so comfortable at that moment that I even delayed getting an epidural. That would turn out to be a mistake.

“Are you sure you’re not in any pain?” The labor and delivery nurse Julia asked, as she clicked away at the computer at the side of my bed. She looks to be a little older than me, slim, with long blonde hair pulled back and bangs that remind me of 80’s hair band bangs.

 I shook my head no and glanced at a nonstop stream of paper pouring from a small printer on a shelf beside my bed. The paper was covered with the mountains and valleys of my contractions.  I watched intently as the mountains grew taller and closer together, finding it odd that I couldn’t feel anything beyond a distinct tightening in my belly.

“Don’t you think it’s weird that I’m not hurting?” I looked over at my husband, who was slumped in a chair in the corner of the small L&D room.

“Are you complaining?” he replied, barely opening one previously closed eyelid. It had been a long 24 hours, and we were both exhausted. I, however, had the energy and inertia of labor hormones rushing through my veins and didn’t feel tired at all.

As the hours crept by, my labor progress slowed. I was still feeling nothing and wanted to close my eyes for a few minutes when the doctor came in and decided it was time to break my water.

Dr. Lin entered the room with an air of eagerness and exclaimed, “Let’s get this show on the road!” He turned to the nurse, “Julia, grab me an amnihook, please.”

The nurse smiled sympathetically at me, her long blonde ponytail flipping over her shoulder as she quickly left the room to grab the piece of equipment used to break the amniotic sac and rupture the membranes.

I’d been to many deliveries as a NICU nurse, being called to scheduled deliveries when we anticipated the baby needing support, and emergencies when there was a problem. I knew what this long, crochet hook looking piece of equipment was and what it did, but the thought of that coming anywhere near me, my vagina, or my unborn baby made me feel queasy.

“Um… is that necessary? Do we have to do that?” I hesitated to question the doctor or object, but since I wasn’t in any pain and the baby was tolerating the labor well, I didn’t see the need for intervention.

Looking at the clock, which was slowing creeping towards 11:00pm he responded, “I think this is what is going to be best for both you and baby.”

“But I haven’t received my epidural yet.”  The last thing that I had planned was a drug free delivery.

“No worries. You’re only dilated to 6. There’s still plenty of time,” he assured me as he gloved up and took the hook from the sterile package the nurse had opened for him.

“Okay, try to relax, this is going to feel strange,” he said. As he finished speaking, I felt a pop in my abdomen, like a rubber band snapping, and water gushed onto the towels and pads the nurse had placed beneath me.

It was show time.

 My water breaking seemed to unleash all the pain from the previous 8 hours of contractions, hitting me like a tidal wave. The pain crashed into my body, and the edges of my vision blurred as I called out, “I’m going to be sick!”

Anticipating what was coming, Julia was already right beside me, handing me a small pink tub as the contents of my stomach erupted out like a volcano.

 “Now we’re in business,” Dr. Lin said, smiling as he slipped off his now-wet gloves and strode out the door.

In between waves of nausea and body-racking convulsions of sickness, I was suddenly acutely aware of the sound of the fetal monitoring system.

The “tick.tick.tick.tick.tick.” of the baby’s heartbeat had suddenly slowed to a “tick..tick..tick..tick…tick…..tick….tick……tick……..tick….”

“Roll onto your left side!” The nurse rushed over to me from the other side of the room where she was setting up a delivery table and shoved me onto my side. Instantly, the heartbeat returned to its quick metronome.

“Let’s keep you lying on your left side,” she said. “Just to be safe.”

 I agreed compliantly. With the baby happy again, I begged the nurse to call anesthesia for the epidural as I continued dry heaving into the little bucket.

They came in quickly after the nurse rechecked me and discovered that I was now dilated to 8 centimeters. Sitting me up at the side of the bed, the anesthesiologist didn’t have any trouble inserting the long needle into my back and finding the small epidural space in between my vertebrae.

“All done!” he proclaimed, taping a tiny line to the right shoulder of my hospital gown.

I laid back on the pillows to wait for the relief I knew would be coming. I’d had an epidural with my son and it worked perfectly. As the next contraction washed over me, I gripped the sheets of my bed with all my strength. Something wasn’t right. I could still feel everything!

“Let me recheck you.” Julia was already lifting the bottom of my sheet to see if I had progressed. “You’re complete!” she exclaimed, shocked. “I can feel the baby’s head! She’s right there; it’s time to push.”

“What? But my epidural hasn’t taken effect yet! I can still feel everything! I’m not ready!” This was not going the way that I had expected. I DID NOT want to feel everything, and I was starting to panic. “Your baby’s ready. You’re ready. It’s going to be okay.” She softly looked me in the eye and gently touched my shoulder.

 Man, she was good at her job. “Okay. I can do this.” I was not entirely convinced, but I mean, what was I going to do? This baby was coming out of me whether I had an acceptable amount of drugs in my system or not.

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Chapter 2: I knew

20 Sep

Then…

1.

I’m driving on an unfamiliar road in the middle of the day.  The windows are rolled down, and I can feel the warm summer breeze blowing across my face.  Abruptly, something happens, and I can no longer see where I am going.  Darkness had obscured my vision, and I was suddenly plunged into a black abyss. Terrified, I cried out and tried to pull the car off the road and stop. I can’t see anything, and I panic. I know I will crash the car, but no matter how hard I try, I cannot make my eyes work.

 I am blind.

Suddenly, I’m ripped from sleep, wake up sweaty and breathing heavily.   A dream. Haha! It was a dream!  I wait for my sleepy eyes to adjust to the darkness and realize I can still see. I have not been suddenly struck by blindness.  It was only a dream. Vivid and unshakable, but only a dream.

 Strangely, I would continue to have that dream, off and on throughout the years, as it plagued me. For some reason, I was usually either driving or in some state of peril where I desperately needed my eyes to stay in control. I would always wake up at the last possible second, right before disaster struck before I crashed the car or unintentionally walked off a cliff.

Then, one hot, dry afternoon in May, in the gleaming desert brightness of Las Vegas, my dream merged with my reality.

A few major components separated my dream from my real life. I was not the one suddenly struck by blindness.

 And it was no longer a dream. It had become a nightmare because it happened to my daughter.

My beautiful baby girl Oliana had been born blind.

2.

“I just knew.”

I often heard mothers say, “I just knew he was sick. I just knew she was in trouble,” when talking about their children. I even heard it from my own mother. My mom seemed to know everything about me and what I was doing, sometimes before I even knew. I couldn’t get away with anything.

One story my mom loves to tell is from when I was in high school. My friend and I decided to skip school and go to the mall. This was the very first time I had ever thought about cutting class. It was a cold February morning in Iowa, and my friend had just gotten her driver’s license.

“We should skip school and go to the mall in O town today,” she told me as she lathered cream cheese onto her toasted bagel.

“Skip? Really? The mall?” I wasn’t a fan of the mall and preferred the local Goodwill. My friend, Maria, and I had been best friends for a few years. She had a rebellious streak, just like me. We wanted to fit in, yet tended to color just outside the lines. People often called us “weird” because we preferred 90’s grunge fashion and music. Our tiny Iowa country town was years behind in the latest clothing and music trends. We preferred grandpa’s cardigan-stripped sweaters and too-big, ripped corduroy from the local thrift store.

“I want to get my boyfriend a Valentine’s Day card and a gift from Spencer’s. They have the new Nirvana and Soundgarden posters. Besides, it’s not like we have any shopping options here. Where else would I go?” Maria said.

I couldn’t argue with her about that. In the tiny town we lived in, there wasn’t even a Walmart or Target, but O town was 40 minutes away.

“You don’t think we’ll run into someone we know, do you?” I hesitated. The thought of randomly running into my mother at the mall in the middle of a school day made my throat instantly dry. She would ground me for the rest of the school year, maybe for the rest of high school. My mom was lovely, but she had a zero-tolerance policy for rule breaking. If I was one minute past curfew, there were consequences. She didn’t mess around.

“No way,” Maria chirped back at me. “My mom’s at work at the hospital, and I don’t see your mom hitting up the mall in the middle of a Wednesday afternoon. Besides, isn’t she working at her new bank job now?”

“Yeah, she started last week.” Both of my parents were working. I had a better chance of winning the lottery while simultaneously getting struck by lightning than seeing my dad at the mall, but my mom… well, that woman seemed to know my every breath. Even though I knew she was working, she made me nervous.

“Ok. Let’s do it,” I replied. We were driving to a whole different city, and really, what were the chances of getting caught?

Famous. Last. Words.

It turns out, the chances were exactly 100%.

We walked into Spencer’s and were looking at silly gag gifts and laughing at some obscenely inappropriate cards when I looked up and saw… my mom.

My mom just happened to have an urge to go to the mall on a Wednesday afternoon during her workday because she “had a feeling” that I was skipping school. I will repeat that I had NEVER cut class. Never. And I never would again. I didn’t do much for the rest of my sophomore year. I was grounded.

Years later, my mom revealed that she had exaggerated her “Momtuition” just a little. It turns out that what had actually happened was that she had received a call from my school asking her to confirm that I was at a doctor appointment. My friend and I had the brilliant wherewithal to drive to school before first period and turn in “doctor notes” to the office excusing us from class. Why two girls, who were best friends, would have two different doctor appointments on the same day at the same time didn’t seem suspicious to us? Teenagers.

My mom swears that after getting that phone call, she just knew I would be at the mall. Not only that, but she also walked directly to Spencer’s store. I must admit, I’ve always felt that was weird. We could have gone anywhere, so how did she know exactly where I was?

Momtuition, it turns out, it’s a real thing. More than 10 years later, I would discover that for myself. I often heard mothers say, “I just knew he was sick. I just knew she was in trouble,” when talking about their children. I even heard it from my own mother. My mom seemed to know everything about me and what I was doing, sometimes before I even knew. I couldn’t get away with anything.

One story my mom loves to tell is from when I was in high school. My friend and I decided to skip school and go to the mall. This was the very first time I had ever thought about cutting class. It was a cold February morning in Iowa, and my friend had just gotten her driver’s license.

“We should skip school and go to the mall in O town today,” she told me as she lathered cream cheese onto her toasted bagel.

“Skip? Really? The mall?” I wasn’t a fan of the mall and preferred the local Goodwill. My friend, Maria, and I had been best friends for a few years. She had a rebellious streak, just like me. We wanted to fit in, yet tended to color just outside the lines. People often called us “weird” because we preferred 90’s grunge fashion and music. Our tiny Iowa country town was years behind in the latest clothing and music trends. We preferred grandpa’s cardigan-stripped sweaters and too-big, ripped corduroy from the local thrift store.

“I want to get my boyfriend a Valentine’s Day card and a gift from Spencer’s. They have the new Nirvana and Soundgarden posters. Besides, it’s not like we have any shopping options here. Where else would I go?” Maria said.

I couldn’t argue with her about that. In the tiny town we lived in, there wasn’t even a Walmart or Target, but O town was 40 minutes away.

“You don’t think we’ll run into someone we know, do you?” I hesitated. The thought of randomly running into my mother at the mall in the middle of a school day made my throat instantly dry. She would ground me for the rest of the school year, maybe for the rest of high school. My mom was lovely, but she had a zero-tolerance policy for following her rules. If I was one minute past curfew, there were consequences. She didn’t mess around.

“No way,” Maria chirped back at me. “My mom’s at work at the hospital, and I don’t see your mom hitting up the mall in the middle of a Wednesday afternoon. Besides, isn’t she working at her new bank job now?”

“Yeah, she started last week.” Both of my parents were working. I had a better chance of winning the lottery while simultaneously getting struck by lightning than seeing my dad at the mall, but my mom… well, that woman seemed to know my every breath. Even though I knew she was working, she made me nervous.

“Ok. Let’s do it,” I replied. We were driving to a whole different city, and really, what were the chances of getting caught?

Famous. Last. Words.

It turns out, the chances were exactly 100%.

We walked into Spencer’s and were looking at silly gag gifts and laughing at some obscenely inappropriate cards when I looked up and saw… my mom.

My mom just happened to have an urge to go to the mall on a Wednesday afternoon during her workday because she “had a feeling” that I was skipping school. I will repeat that I had NEVER cut class. Never. And I never would again. I didn’t do much for the rest of my sophomore year. I was grounded.

Years later, my mom revealed that she had exaggerated her “Momtuition” just a little. It turns out that what had actually happened was that she had received a call from my school asking her to confirm that I was at a doctor’s appointment. My friend and I had the brilliant idea to drive to school before first period and turn in “doctor notes” to the office excusing us from class. Why two girls, who were best friends, would have two different doctor appointments on the same day at the same time didn’t seem suspicious to us? Teenagers.

My mom swears that after getting that phone call, she just knew I would be at the mall. Not only that, but she also walked directly to Spencer’s store. I must admit, I’ve always felt that was weird. We could have gone anywhere, so how did she know exactly where I was?

Momtuition, it turns out, it’s a real thing. More than 10 years later, I would discover that for myself.

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Chapter 1. The dance.

17 Sep

The alarm goes off and I’m reluctant to open my tired eyes. It’s 6am, my feet haven’t even hit the floor and already, I’m exhausted.

“Again? Is it morning again? Seriously?” Those are usually my first thoughts of the day.

I glance over at the bedside table at the video monitor whose black and white screen brightens my darkened room. I squint intently at the tiny screen listening and watching for any kind of movement from the mound of blankets that the camera points to. I’m also holding my breath, hoping all is still quiet. “Please. Please. Please. Just one cup of coffee.” I think. “I need just one cup before we start.”

All quiet. No movement. All good. For now. I slip quietly down the stairs and head to the kitchen where I make my first of many cups of coffee. I have about 45 minutes to sip coffee and enjoy the quiet before I start my day, getting my other two kids off to school first. It really is quiet, and I should be relaxing, but rather than do that, my brain is already going a million miles a minute with anticipation of the day. Who am I kidding? I never relax.

I think most of my exhaustion comes from my emotional exertion. The constant fear and worry that has plagued my brain for months now. Will today be better? Will it be worse? I never know how good or bad the day will be until I wake up the girl lying beneath the pile of blankets. When she opens her eyes, how she opens her eyes, how she moves, how she stretches, her facial grimaces, how much she shakes…these movements all have their very own file in my brain and each one of them gets logged in as they are performed. I then do a quick calculation to determine what will be possible for that day. How bad will she be?

As I uncover her, I do a quick physical assessment. As a trained nurse this is second nature. I’m looking at her coloring, her breathing, feeling her forehead for a temperature. How is her stomach? Does it look bigger this morning? How much is in her ileostomy pouch? What color is it? I lift her shirt to look at her gastrostomy tube. Is there drainage under the bandage that protects her skin from the plastic disc that sits atop it? I lift her shirt a little more to look at her chest and the dressing that covers her central IV line. Is it red? Is the dressing intact? Does it look the same as yesterday? All these things are done in less than a minute.

On days when she opens her eyes quickly, or is already awake, I know she’s probably feeling pretty good. Especially when she flashes me a smile when I say her name. ” Good morning, Oli!”

On days when she struggles to wake up and doesn’t want to move, when she grimaces instead of smiles, I know it’s going to be a tough one. These are the days that require the most emotional (and physical) exertion. These are the days when I can barely keep my tears at bay and the fear stays lodged tightly in my throat.

This morning it took me almost 30 minutes to get her up. My heart sinks with the realization of what that means. “Shit. I should have had two cups.”

I do everything that I can for her while she is still lying in bed, mentally checking off items as I complete them. I go cleanest task to dirtiest. The IV pump has just sounded three short beeps which indicates that her TPN infusion is complete. I cross the room to a long table that sits under her wall mounted TV. It is heaped with plastic bins containing hundreds of medical supplies. I chose one saline and one heparin flush that are wrapped in plastic, a Prevantics device swab, and a green cap from the top shelf. Reaching over the still sleeping form I grab the black bag containing the now empty bag of TPN and the pump. Lifting a flap, I turn the pump off and lift her shirt so I can disconnect the line from the IV. Once disconnected I start swabbing the hub of the IV with the disinfecting square and begin counting in my head.1…2…3…4…5. Then I let it dry…1…2…3…4…5. Next, I attach the saline flush and depress the plunger in quick stop and go motions. Then the process is repeated all over again before I attach the heparin flush. Finally, after the line has been sufficiently disinfected, flushed and heparin locked, I clamp the line and reach for the green cap that will cover the hub of the IV and will prevent bacteria from getting in. The IV is finished. Check. On to the next.

I slowly stand and straighten as pain runs down my spine after intently hunching over the bed. A quick glance at her face and lack of movement tells me that she’s going to need her medication before getting into the shower. If I can get her into the shower. Some days that’s a really big if. This will be one of them.

I walk into the kitchen over to a counter that used to be empty except for a Keurig machine. It is now home to a Keurig machine, a drying towel covered with syringes and 3 clear, plastic storage containers filled with numerous medications and the supplies to deliver them. So many meds and supplies. I have literally brought work home with me.

There are pills, tablets, liquids, syringes, syringe caps, connectors, pill crushers, small medicine cups, tubing, and sterile water. I quickly crush, mix, and pull up her morning meds. I glance at a printout taped to one of the top cupboards, confirming that I haven’t missed anything. Although, in all honesty, her med list changes so frequently I would have to print out a new list weekly to keep up. The big ones are on there, so it’s something to reference. I remember to add in the new ones, gather up all the supplies and walk back to her room.

On my way back to her room my phone buzzed silently in my pocket. A quick glance at my watch and I recognize the number instantly.

Hospital.

With butterflies in my stomach, I pulled out my phone. I have weird, juxtaposed feelings when seeing this number. On one hand I dread it. It could mean devastating test results or scheduling painful procedures. On the other hand, it could mean a new idea for treatment. Or a test result revealing some long-obscured answers that have eluded us for almost a year. It could be the answers to the questions that I’ve been asking for months and months.

What’s wrong with her?

Unfortunately, this morning, fate is not on our side. I answer the phone and hear a chipper, warm, female voice on the other line “Hi! Is this the parent of Oliana?”

“Yes.” I reply cautiously. This is not a doctor. This is office staff. This is someone calling to schedule something.

“Hi! I’m calling to schedule a procedure. Do you have a few minutes?”

Oh great. I mean…” Great! Yes! This is a good time to talk.” I say, putting her on speaker phone so I can pull up my calendar.

In the last 9 months we have repeated the same two procedures numerous times.

We’ve never gotten any new results. These procedures have never resulted in any answers. It’s the same thing over and over and over….

What’s the definition of insanity again?

But maybe this time will be different. That thought causes me to chuckle to myself as the voice on the other end of the phone rattles off a date and time.  She goes through the pre procedure instructions, which I’ve heard a dozen times before. Oli is at the hospital about every other week for some kind of surgery or procedure. Before she gets to the “don’t let her have anything to eat or drink after midnight” part, I stop her.

“I’ll save you a little time. Oli doesn’t eat or drink or take anything at all by mouth.”

There’s a brief silence on the other end. I can hear her thoughts as though she has spoken them aloud.

Doesn’t eat or drink? Like, ever?  

But what she says is “Ok. Don’t put anything in her Gtube…” I stop her again before she can go on.

“No. I mean she doesn’t have any kind of food or liquid going into her stomach by any route, ever.”

Another long silence.

I get it. It’s not possible to not eat or drink. Ever.

As the silence continues, I go on “She has an IV and gets all her nutrition through her IV. She is on TPN.” I never know how much to say or what language to use when giving the office staff information. Does she know what TPN is?

“IV nutrition.” I quickly followed up with that. Just in case.

“Oh okay. Okay. So, nothing by mouth?”

“Nope. Nothing by mouth.”

“Okay well I’ll skip that part then. To get to the procedure check-in you’re going to…”

“Park in the garage. Walk into the building take a right and walk all the way down, crossing into the hospital and check in at the desk on the right.” I finished for her. This isn’t our first rodeo.

“Right. Some people don’t know so I like to give very explicit directions.”  I can hear just a hint of annoyance in her previously chipper voice.

Well lady, sorry. I have things to do and meds to give and we have done this dance every other week for at least the last 8 weeks. . I don’t have time for the repetitive dance steps on this particular morning. I have a sick girl in the other room that I need to get back to.

“I appreciate that. Thank you for your time.” I repeat the date and time again and she confirms ending the call with a curt “goodbye”.

So, how did we start this whirling, twirling never-ending dance at this god forsaken rodeo?

That’s a whole story. Let me take you back 17 years to Las Vegas, Nevada and a beautiful May afternoon in 2007.

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Organ Transplant Discrimination and Disability: The Shocking Reality

10 Jul

In a mere instant, again, life will never be the same.

I was completely blindsided in a GI appointment with Oli today. We have always known that Oli’s injury to her intestines in West Texas was catastrophic. The probability of nerve damage caused by lack of blood flow was high. The GI doctor likened it to a victim of drowning. He said “you know when you have a drowning victim, afterwards in the ICU they do an MRI and the brain looks normal? It looks normal but their brain does not work anymore.  The person suffers from severe damage. That is probably what has happened to Oli’s gut. The nerves in there have all been damaged. I don’t want to be negative, but in my heart, I don’t think this is something that will get better or can be fixed.”

When I mentioned the topic of next steps and how we can go about getting her listed for an organ transplant there was a look on his face that stopped my world in an instant. That look conveyed something that I had honestly never even considered.

Oh, how naïve I am about the way of things.

The doctor didn’t say it in so many words, more of a fumbling around about way saying something like “she’ll have to go to Houston, and they will have to evaluate her to see if she even could be listed”.

Could even be listed? Why couldn’t she be listed?

I know that sounds benign but there was a look on his face and a look in his eye and a failure to meet my bewildered gaze that told me all that I needed to know. Something that I had never even considered. There was an incredibly good possibility that my sweet girl was never going to be listed because she had the unfortunate disadvantage of being born with a disability.  

He walked out of the room and I sat in silence for a moment stunned, as the tears began pouring down my face. How could they just NOT help her? How could they let this beautiful girl, with the most incredible smile and disposition, just die?

I immediately jumped online to prove to myself that this was not a thing. There was no way that this could be true. People with disabilities are people. First and foremost. They have a right to medical treatment just like everyone else. I must have misunderstood.

I did not.

I read article after article titled:

“Push is on for states to ban organ transplant discrimination”- CBS news

“Organ transplant discrimination against people with disabilities”- National council on Disability

“Equal access to organ transplant for people with disabilities”-National Institutes of Health

“They say their children are being denied transplants because of their disabilities”- CBS news

“People with autism, intellectual disabilities fight bias in transplants”- The Washington Post

And on and on…

There are so many out there. That was just a simple Google search. There are so many families out there with stories about how their child died because the transplant center refused to list them. Stories about how families had the law changed in their state so they could not refuse to transplant the child due to a disability.

Did you know that a study in 2008 found that 85% of transplant hospitals considered a child’s nerurodevelopmental delay when considering their eligibility to be listed on an organ transplant list? I would like to say that in the 10+ years this has changed but sadly, for the most part, it has not. A research paper by the National Council on Disability from 2019 titled “Organ transplants and Discrimination against People with Disabilities” states:
“People with disabilities are often denied equal access to organ transplants solely on the basis of their disability. These denials are frequently based on discriminatory assumptions that the lives of
people with disabilities are of poorer quality than those of people without disabilities, and on
misperceptions about the ability of people with disabilities to comply with postoperative care.”

And then I googled “Do special needs people get denied organ transplants in Texas”.

That is when I saw a glimmer of light. I found House Bill (HB) 119 that was passed in September 2021 during the 87th Legislature that prohibits organ transplant recipient discrimination based on certain disabilities. It states “When determining whether an individual’s disability is medically significant to the organ transplant, a health care provider may not consider the individual’s inability to independently comply with post-transplant medical requirements when the individual has a known disability and the necessary support system to assist them in reasonably complying with the requirements.”  

House bill or not I am prepared to have to fight for her to have this opportunity.

Even though under the Americans with Disabilities Act and the Rehabilitation Act the practice of denying people organs because of their disability is illegal, it is up to the transplant physicians to evaluate these patients. I promise you, there are ways around that and reasons they can list why they would not be good candidates.

Coincidentally, (if you believe in coincidences) I am in the business of organ donation. I currently work for an Organ Procurement Organization (OPO) and have for 4 1/2 years now. I completely understand the states concern for maximizing these gifts and making sure that the person receiving them can comply with all treatment and make sure that these donors’ gifts do not go to waste. I’ve watched families of donors rejoice at the thought of their loved one’s organs going to save someone else’s life. I have seen the peace that it can bring. I’ve also seen families agonize over the thought of someone taking an organ out of their loved one’s body after they have passed and placing it into someone else. These families are caught off guard when they realize that they signed up to be an organ donor. I have also seen about 90% of those families walk away with their minds completely changed and hope and peace in their hearts when they realize what a heroic and selfless decision their loved ones made. Organ donation seems to be a hot topic and not everyone agrees. And not everyone has to. It is an individual decision and I am not here to tell you what is right for you or your family. What I am here to tell you is that my daughter has every right to have an opportunity to receive one of these precious gifts because she is a person.

According to the Texas House bill she must have “the necessary support system to assist them in reasonably complying with the requirements.”  And she does. Because Oli has me. Forever. Oli has me to keep up with her appointments and her meds and all the things that I have done for her entire life. And I am committed to continue doing these things until there is no more breath left in my lungs or blood flowing through my veins. The day that she was born I looked into her sightless eyes, and I made a promise to do everything that I can to help her. I promised to be her eyes and her voice and her legs and anything else that I can do and give her if she needs it. I will not stop now. I will not take no for an answer because she is worth something and her life is worth something and she matters.

My Oli matters.

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Parenting a Medically Complex Child: Coping with Life Before and After November 2023

19 Jun

I had been on a journey as a special needs mom for 16 years when that journey took a left-hand turn and fell off the rails. Throughout Oli’s life I have learned so many things, but nothing I learned could have prepared me for what would happen to her in November 2023.

Being a mom to a child with extra needs, or at least the kind of extra needs that Oli had “before”, is nothing like being a mom to a child who is medically fragile or a child with a chronic illness. There is no comparison. Basically, I knew that Oli was different and needed extra help, but I would always describe her as having extra needs but being 100% healthy. I always included that last statement and felt true gratitude for that fact. I knew that she/we were lucky that she had no medical issues. But that was “before”.

   Now life is defined as “before” and “after”. Life with Oli has kind of always been defined as “before” or “after” ever since she was born. There was my life before Oli, and my life after Oli. Now there is life before November 2023 and life after November 2023. Although life before and after Oli was certainly difficult at first and we faced many, many challenges, I feel like almost all those challenges lead to beautiful growth and development for me personally. I changed so much after Oli and although not all of it was positive in the moment, it always turned into something positive. I find this experience to be similar.

Our first journey, after she was born but before Nov 2023, was a road paved with uncertainty and the unknown and a small measure of fear. I didn’t know anything at all about blindness and I didn’t know then that she would have developmental delays. I learned though and we grew together, me leading the way and stumbling but always remaining upright and able to carry Oli through difficult patches. The fear turned to confidence, and I became more and more secure in my abilities to help and care for her as the years passed.

“Before” I never worried about losing her.

 The small measure of fear that I felt before now has grown into a magnificent, all-consuming giant monster who is crushing my body and sucking the air from my lungs.  The terms chronic illness, medically complex, and medically fragile now pepper my language when describing my girl in her current state. She is no longer healthy. She is sick and she is in pain, and she is suffering.  That is my truth, no matter how much I don’t want it to be. However positive I try to be, however I try to spin what is happening to her, the truth is, she is suffering. There is no denying that anymore.

She is in and out of the hospital so frequently now that it feels like the hospital is her primary residence. It’s much rarer to have her at home. And every time she comes in, she leaves a little bit worse for wear. She comes in and gets examined, poked, prodded, x rayed, Cat scanned, turned, rolled, lifted, and leaves with new battle scars, a new diagnosis, a new symptom, a new medication, a new medical device… and new trauma. 

Now a touch on her forearm and the feel of a rubber band elicits an immediate increase in heart rate and a quick intake of breath as she has learned exactly what this means.

Pain.

The sound of the portable Xray machine rumbling down the hall causes her to visibly shake.

 Rubber gloves pushing on her abdomen immediately brings her knees to her chest. She tries her very best to protect herself in the only way she knows how because in some cruel twist of fate she was not given verbal words of protest to speak into existence.  However, in that cold, sterile room those unspoken words are heard by me in a way that only a mother can hear. I feel them in my soul, and it rips me to pieces as I grip the side rail of the bed lest I physically push away the offender.

Stop hurting her!

Another silent protest and unspoken words that never leave my lips because what I know, and I’m not certain that she does, is that they are trying to help her.

Unfortunately, we know in the medical field that most “help” comes with a measure of pain. For Oli most, if not all, of her help has included a lot of pain.

I thought this last hospital stay was going to be it for a while. She was so happy and comfortable when we got to leave here the last time. She was smiling. She was smiling a lot.  A week later those smiles gave way to tears. And those tears became more and more frequent. Eventually all she wanted to do was lay down almost completely flat in the bed. She would no longer even sit in her reclining chair.

I thought that when we came in here again they would try to find the source of her discomfort. One Xray and one Cat scan later and the mission was abandoned, and her pain was dismissed. A partial bowel obstruction that was found this time no longer elicited the same measure of urgency or attention. New lesions on her liver that were never there before, were first brushed off as “incidental findings” until I pointed out that they were not seen on the previous 7 CT scans. Not able to do an MRI because of her spinal fusion rods, the search for answers for that too was just abandoned. Now I guess we’re just supposed to accept that not only can Oli no longer eat or drink but now her new normal also consists of the inability to sit up without pain.  

Why is this ok? If Oli could speak or look them in the eye, do you think this would be the case?

I hate the thought, but I have this feeling in my heart that she may be thought of as less than a person because she cannot voice her complaints, cuss someone out or get up and leave.

I’ve had this feeling ever since she got sick. It’s like, yes, she’s sick, but she’s a special needs child so there’s a feeling of complacency and missing a sense of urgency and importance. Sometimes I get that feeling with other people too. Non-medical people. It’s almost like special needs=illness or medical complexity. I’m here to tell you that it doesn’t.

I was in no way prepared for Oli to become ill. I don’t think any parent could prepare themselves for something like this. My kids weren’t prepared either. Keely, who is 7, has continued to ask me if Oli is going to be okay or if she is going to die. I’ve always reassured her that Oli is going to be fine but as time passes and she continues to decline I’m no longer comfortable saying that. The new conversations may have to include the fact that I just don’t know. I don’t know if Oli is going to be okay. I can’t even type those words without tears streaming down my face. How am I ever going to look my children in the eye and say those words?

Urgency from the medical team or not, I will continue to fight for my girl. I will advocate and be loud and pushy and questioning. I will also be a team player and despite numerous medical errors, one of which she is dealing with right now, I will continue to try and have faith in a medical system that I am severely disillusioned with.  I understand that I must watch everything, I must question everything. I must double check and verify.  And when something goes wrong, I will take the blame for it because I should have been paying better attention. I should have known. I now take on this responsibility and I take it on willingly because despite my lack of faith in the overall healthcare system, I have the utmost faith in myself. I have that faith because I’ve seen how the last 6 months has changed me. I never knew how strong I could be until I stepped into these new shoes that were way too big 6 months ago but now are beginning to fit just fine.

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Something is wrong with Oli. Part 2: What was happening?

11 Feb

I got a text from Oli’s dad a few hours later around 10am saying “She’s getting the full work up- Covid and flu test, CT scan because her tummy is super swollen and hard. Blood work and even a catheter.” I continued working that day and then took a break, heading into my front yard to begin putting up my outdoor Christmas decorations. I began putting up my Christmas decorations. I can’t believe I was so oblivious. As my little girl was lying on the uncomfortable, hard surface of an ER cot, fighting for her life, I was prancing around my front yard putting together Rudolf and blowing up a 9ft gingerbread man. If I could, I’d go back and punch that girl in the throat and tell her to get her ass in the car immediately! I was an ignorant, naïve person who thought nothing bad would ever happen to me or my family.

I was wrong.

The first few calls that I got from Oli’s dad made it sound like the hospital didn’t seem too sure about what was going on, but it didn’t seem like anything was too bad. I continued to go about my day. He said they had decided that they were probably going to admit her to the medical floor there at the Midland hospital. They were worried that there was something going on with her stomach. A little while after that I got a call from him saying that they didn’t think they could treat her in Midland and would be sending her to a children’s hospital in Lubbock. About 30 min after that update I spoke to a nurse who was taking care of Oli in the ER. Her dad had told the nurse that she usually goes to Dell Children’s hospital in Austin and wondered if they could transfer her there so she’d be closer to home.

The RN got on the phone and very candidly said to me “Look, she’s really, really sick. I’m not sure she would make it all the way to Austin.”

Not make it to Austin? As in she may not survive long enough to travel to Austin?

No, no, no, no, no. That can’t be what she meant. No way.

Did I ask her that question? What do you mean “she may not make it?”

No. No I did not ask that question. Why did I not ask that question? Why did I not hold her hostage on that phone and demand that she tell me exactly what was wrong with my daughter? Clearly I was not getting the full story. I don’t think her dad understood what was going on with Oli and he definitely could not relay and kind of useful medical information to me. It was like I was stuck in a dark room fumbling around, unable to find the light switch, but unwilling to ask the person with a flashlight for help.

I’m sure deep down I knew what she meant, but clearly at this point I was so far into my denial I just said “Ok. Get her to where she needs to be NOW!”

I also tried to rationalize that statement by telling myself that the nurse was just over reacting. I thought they were probably just freaking out because she was a kid, plus she has special needs so they’re just super uncomfortable with her and wanted to get her out of there and somewhere else close, fast.”

I still had no clear idea what was wrong with my daughter. No one was giving me any ideas other than her stomach was distended and hard and she was “really, really sick”. I think it was at this point in time that I began thinking it was a bowel obstruction and sepsis. I felt my own heart rate and blood pressure raise as I text her dad “Did they mention anything about a bowel perforation?” A bowel perforation is a life threatening emergency and is where the contents of the intestine spill out into the abdominal cavity causing massive infection and requiring immediate surgery. A bowel obstruction can ultimately cause a bowel perforation if not treated. He replied “no bowel perforation”. That was good. My heart rate slowed a little and I felt relieved that at least she didn’t have that. At the time I was thinking a perforation would be the worst case scenario. I replied “Then what made them decide to transfer her out rather than just admit her there?” He responded “They didn’t feel like they had the expertise to handle her.”

Yep. I was right. They were just uncomfortable and trying to get her out of their ER. It’s not that bad. My heart rate and blood pressure immediately went back to normal and I continued stringing lights around my trees and blowing up inflatable snowmen and Santa Clauses.

And off they went. They wanted to fly her from Midland to Lubbock but there was no flight transport available. I didn’t know that until later. There are so many things that I didn’t know until later.

My very, very sick little girl then had to ride 2 hours in the back of an ambulance. By the time they got to the ER her heart rate was 200 and her blood pressure was 170/110. Her dad called me when they got to Lubbock and said that nothing was really happening, they were still waiting in a room. I kept thinking that I was missing something. How could the staff see her vital signs and not do anything? I was still so confused. I think that confusion kept me from panicking. Surely if she were that sick and if those numbers were correct the ER staff would be responding to her, not making her sit in an ER room alone with her dad. That can’t be right. What was happening? Maybe I should wrap up outside. I began lugging the rest of the boxes of Christmas decorations back into my garage and traded them for a suitcase.

Finally at 4:53pm I got a text from him saying “Dr. Relves (a pediatric ICU doctor) is handling the business. I’ve got 15 people in here and her heart rate has dropped 50 points. We are having to intubate her to treat.”

Intubate her? Wait, what? We went from a possible virus, a swollen tummy, maybe a hospital admission and then an overreactive nurse all the way to “intubate her”. The room went fuzzy. What was happening?

After I read that last text my brain went into overdrive and I literally just started throwing my toiletries and clothing into a suitcase. I had to get there NOW.

I quickly sent him a response. “If you get to a place where I can be updated by a doctor I’d really appreciate that. I don’t have a clear clinical picture of what is happening.”

What was happening to my sweet girl?

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I know I’m okay as long as I don’t make pancakes for dinner.

21 Oct

“Close the door Michael. I can still hear them.”

Michael obediently pauses Zelda and walks over to the lightweight door, closing it on the sounds of my parent’s argument.

“Now turn up the sound on the TV and just ignore them.”

Michael again complies without protest, spinning the volume control on the old 32” TV. He picks up the remote control of the Nintendo and scrunches up his little face in concentration.

He is probably about 7 years old.

I am probably about 10.

This is not the first time we have performed this ritual.

It will not be the last time either.

About an hour later my mother knocks softly on our bedroom door.

I get up, reluctantly pausing Link mid stride across his never ending quest through the green maze, and open the door.

Michael looks at me worriedly.

I look up and into my mother’s red rimmed, glassy eyes.

I see the tears still pooling in the corners of them just about ready to spill over. Just about, but not quite.

My mother will rein them in, sparing me from having to wipe them from her cheeks.

My mom will pretend to be strong for me.

Even though I know she’s not.

Even though I know that she has once again been defeated.

“Are you okay?” I ask although I already know what her response will be.

“Yes. I’m fine.” She answers in a voice that is too high, too cheery, to be anything but fake.

It is only now that I notice that she is carrying two plates in her hands. She lifts them up towards my face.

“I’ve made pancakes for dinner!” She says this like someone would announce that they are going to Disneyland.

She says it like she’s just given me exceptional news.

I’VE MADE PANCAKES FOR DINNER!!

“Thanks mom.” I respond quietly. I try to pretend that this is good news. Pancakes. I love pancakes and so does my brother Michael.

I know what those pancakes mean though.

My eyes cast around her to the doorway and towards the silence that sits awkwardly beyond it.

My mother is confused at first by my sad expression. Then she meets my gaze with eyes pooling with tears once again.

She knows that I know.

She knows that even though I am only 10 years old, I now understand that pancakes for dinner is never a good thing.

Pancakes for dinner means that my mother is not okay.

I’ve kept that memory since childhood. I still associate pancakes and dinner as a very bad thing. I’ve had my own children now. Three of them. And guess what?

I’ve made them pancakes for dinner a few times.

Very few times, but I have and I cringe at that memory too.

I told the young child me that I would never do it.

I would never turn those light, fluffy, syrupy plates of deliciousness into a dripping plate of sorrow…but I have.

I have fought against instinct and upbringing and tried to swim against the tide that tries to push me in the direction of my mother’s life.

To no avail.

Points in my life have begun to mirror my mother’s despite my every attempt to fight it.

Of course it doesn’t all look the same. But a lot of it does.

More than I’d probably like to admit.

And so when my life falls apart and the tears stream down my face and my sobs threaten to choke me… I do what feels right. What feels comfortable.

I make pancakes for dinner.

That’s how I’ve come to measure my sadness and my coping skills.

Am I making pancakes for dinner?

If I am?

It’s bad.

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Autism is just one color on the rainbow

27 Sep

I am doing an autism walk with and for Oli tomorrow. Because of that, I have been thinking a lot about what autism looks like and what it means in my family.

Oli was diagnosed with autism 3 years ago.

She was diagnosed by a team of specialists who specifically look at the differences between autism and blindness because they can appear on the outside to have shockingly similar behaviors.

Flapping in a typically developing sighted child is not part of normal (and I use that word loosely of course) development.

Flapping in a typically developing NON sighted child IS part of development.

A child speaking with echolalic patterns is not normal in a typically developing, sighted child.

Echolalia can be normal for a blind child.

Speaking, followed by a sudden lapse into being completely non verbal over a period of a few months, that is not caused by anything neurological…is NOT NORMAL in any child blind or sighted.

Yet this is exactly what my child did.

This is what led me to seek further answers by a team of specialists in Philadelphia.

This, along with other things, is what led to Oli’s diagnosis of autism.

So…there I was…3 years ago…raising a child with no vision, no language, and no way of communicating with me…

I was devastated.

This is the thing that kept running through my head,

“She can’t see. She can’t speak.”

Can you imagine, as a mother, what that feels like?

I had to face the reality that #1 Oli was never going to meet my gaze. She was never going to look into my eyes or look at me at all. I was never going to be able to look into her eyes and see an unspoken emotion that might lie hidden there. I was never going to be able to discern ANYTHING from her eyes.

And #2 Oli may never speak. I might never hear “I love you” roll off of her tongue.

(Granted, I might never hear the words “I hate you” either, spoken from the angst filled heart of a teenager, but that’s a different blog topic.)

Trying to explain this sadness to my family and friends was and still is difficult for me.

Most of them, when I do try and talk about it, respond with “Yeah but what if’s…” or “Yeah but it could be worse…”

They are right.

But it doesn’t make me feel any better.

I would rather hear “That must be hard” or “I’m sorry” or nothing at all.

I have found that the majority of the times that I do speak about the sadness, I do it NOT looking for answers to this problem. I am not looking for a solution to fix my heart. I am looking for an ear just to listen. I am only looking to get it off of my chest and express my sadness in words rather than bottle it all up inside and never speak about it. Which is what I did when she was born. I would rather tell you about it and leave it out there on the floor for those 5 minutes than carry it around with me for the next few days or weeks.

I know that Oli’s blindness is never going to be fixed or cured and it will never even improve. It just won’t. That’s life. That’s reality.

It took me longer to accept the fact that her autism will never be fixed or cured and it may never improve either.

But the truth is that it does not matter what label she has or what diagnosis she is given.

It doesn’t matter if those horrible evaluation histories label her as “Globally developmentally delayed” or “Autistic”.

It doesn’t matter because she still receives every possible service that would be available to her through either diagnosis.

And it doesn’t matter to me because that label says nothing about who she IS as a person. It may make her act a bit different on the outside. It may make language more difficult, but it will never define who she is as a person.

Just like the blindness will not define her.

It just won’t.

It took me a long time to figure that out too.

So today autism means less to me than it probably does to other people.

Autism for Oli is just one more color on the vibrant rainbow that makes her who she is on the outside.

But it can’t even come close to touching the spectacular kaleidoscope that she is on the inside.

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