Tag Archives: baby

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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Something That I Don’t Talk About

28 Mar

Aggghhh….Okay. This is the post that I didn’t really want to write. I didn’t want to write it because it makes me really sad. Which actually says a lot.

People have asked me to talk about what I felt like once I became pregnant again. What happened to make me decide to have another baby once I knew all that I knew about Oli.

I’ll start by telling you that it wasn’t an easy decision. Especially after we learned that Oli had a genetic deletion. It was something that could affect subsequent babies, although the likelihood was only 5%. 5% feels pretty huge once you already have an affected child. Any percentage above 0 feels like an enormously stupid roll of the genetic dice.

You want to know how I felt when I looked down at that little white stick and saw 2 pink lines appear?

I felt terrified. I felt scared and selfish and happy and overwhelmed.

I felt like I had probably just sentenced this tiny little miracle to a life of blindness. A life of doctors, therapies, and disabilities.

I didn’t have a whole lot of time to process learning that Oli’s condition was genetic. I found out about her OTX2 deletion and then found out I was pregnant just a few weeks later.

Many scenarios ran through my head once I knew that I was going to have another baby. One thought, which I really really HATE to talk about, was maybe I shouldn’t have her. Maybe I shouldn’t go through with this pregnancy.

I don’t like to talk about that thought because the idea of my Ginger not being a part of my life literally brings me to my knees with pain. It sends a stabbing knife of sorrow straight through my heart and makes it hard to breathe.

My baby girl. My little Ginger. I had seriously thought about not having her.

See no one really talks about this.

I was raised Catholic and abortion is something that you are never allowed to even mention let alone talk about. I never thought it would be something that I would ever consider. Because I never thought that I could do it. I always thought that if I got pregnant then I got pregnant and it was my responsibility to take care of that baby. Abortion was never an option.

Well…right at that moment…it became an option.

My views on abortion have always been more pro choice. Mostly because I don’t believe that I ever have a right to tell YOU how to live your life. That goes for my beliefs on everything. Religion, marriage, abortion… You name it. I don’t feel like I have a right to tell you what’s right for you. I’ve never lived your life, had your experiences, dealt with what you have. I never would feel comfortable telling you what to do. I don’t believe that anyone really should. Just because something may or may not be right for me does not mean that it may or may not be right for you.

So anyway…I struggled with what the right thing to do for me, my family, and my unborn baby might be. I did a lot of crying and a lot of praying and pleading that nothing was wrong with this baby. Eventually one night I was lying on the couch late at night. I remember lying there thinking, I have to make a decision before it’s too late. I tried to picture myself going into a doctor’s office and having the procedure. I tried to feel what it would be like to not know that anything was wrong, but choose to play it safe and not have the baby. How did it make me feel? Could I live with myself terminating a baby if I didn’t know that she was blind? What if she was blind? Was it really that bad? Even if she had other disabilities or something else happened, was it really better to never have been?

The answer I came up with that night was…no. No. I couldn’t do it. I couldn’t end a life based on the fact that it might be hard for her. I couldn’t not have her because it might be hard on me. It was going to be scary, but I just couldn’t terminate the pregnancy. I decided that it would be way worse to NOT give this child a chance at life, then to just have the baby born blind. I chose blindness as a possibility for this child over death.

I’ve never made a more significant decision in my life.

I went to the doctor and then called the Albert Einstein Medical Center to see if they could do genetic testing on the baby before she was born to find out if she was missing her OTX2 gene.

It was scary. I was scared the entire 9 months that I was pregnant. Even after the amniocentesis came back and said that she was fine…I was scared. Because what if something else was wrong? What if they missed something? They missed noticing that Oli’s eyes were small before she was born, what if they missed noticing something with this baby?

It was scary because I continued to wonder if I had made the right decision.

Another baby was going to take time away from Oli. She needed so much more time because of therapy and doctor appointments and she just needed more help with everything. It was going to take time away from Kekoa. He had already had so much of his time stolen away by Oli’s disability. Another baby was going to take more. And the baby. What about the baby? Would I have enough time and energy or even enough emotion left for this baby? Would this baby get enough of what she needed?

Was this the right thing to do?

Could I do it?

I had all of those questions throughout my pregnancy.

And then Ginger was born.

I laid my eyes on the most beautiful baby girl. This little baby looked at me with eyes that said “Just love me. I don’t need anything else. It doesn’t have to be perfect. Just love me.”

And I knew that I had made the right decision.

It was the right decision for me. I look back and think about what if things had been different? What if something had been wrong? Now I know that it wouldn’t have mattered.

It would have been a different road, but it wouldn’t have mattered. She would have been perfect anyway.

Because Oli is too.

Oli has taught me that life doesn’t always lead me down the nice, friendly, easy path. It’s not always sunny and clear. And that in my life I have received gifts that I never would have looked at as gifts. But that’s exactly what they are. If my last child had been born with a disability then she would have had a disability. She would have been different. And that’s okay. Different is just different. No more, no less.

I would have gotten through it.

Just like we all do when life hands us something that we are not expecting. We hate it, are angry with it and scream at it. We deny it and argue with it. And then we get through it.

And we move on.

Because really?

What else can you do?

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A Phone Call I Won’t Forget

8 Mar

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On Saturday May 9, 2009 I got one of the few phone calls that I will never forget. How do I remember the specific date? Because we were celebrating Oli’s 2nd birthday.

We were having some family and friends over to the house to celebrate Oli’s special day. We were just getting ready for everyone to arrive when my cell phone rang.

“Hello?” I didn’t recognize the number on the display.

“Hi. My name is Bridget. I got your number from Tanya from the Albert Einstein Medical Center. I’m 22 weeks pregnant with my first child and I was recently told that they suspect that she has microphthalmia. I know you have a daughter with micro and I just had some questions and wanted to talk.”

It seemed like all of the breath was expelled from my lungs in one quick whoosh. My heart dropped to my stomach and the moment became imprinted in my memory. This woman was going to have a baby girl just like my Oli. I was one of the first people she reached out to. I knew how terrifying those first few weeks were when Oli was born. I remember searching for just one person who knew what I was going through. I found that one person and I still remember my phone call with her. Now I got to be that person. I got to offer another mother the same compassion and understanding that was offered to me.

I wished I could reach right through the phone and wrap my arms around this stranger.

“Where are you?” I asked.

“We’re just outside Austin, TX.” She answered.

Now, I was stilling living in Pahrump, NV at this time. Seth and I hadn’t even discussed moving yet. Well…we had discussed it, but we didn’t know where we were moving to yet.

Fate, strange coincidence? I don’t know. I find it eerie that we ended up moving about an hour away from Bridget just a little over 5 months later. We’re still friends, although she has since moved away to be closer to her family in St. Louis, MO.

“I’m so glad that you called me! I would love to talk with you about Oli and help you in any way I can.”

I remember carrying the phone into my bedroom, mouthing “another A/M (anophthalmia/microphthalmia) mom to my husband, and closing the door. I sat on my bed and asked Bridget to tell me her story. How she found out, what she knew about micro, and most importantly, how she was feeling. I remember she sounded scared, lost, and overwhelmed. But, she had something in her voice that I had been missing. Something that I pretended to have, but always fell short of achieving.

She had faith in her voice.

A lot of babies born with microphthalmia have some sort of vision. If the eyes are not too underdeveloped they may have some usable vision or light perception. Sometimes only one eye is affected and the other eye is normal. If the micro is severe enough, then the kids don’t usually have any sight and sometimes even when the micro eyes are not severe, there is no vision because other structures are involved. Like underdeveloped optic nerves. Basically….one just never knows until the babies show us that they can see or not. Anophthalmia means the eye is missing completely. This also can affect only one eye, the other being normal, or it can happen in both eyes. You would think that the kids with bilateral anophthalmia would not have any vision at all. You would think that they would be 100% blind because, well…because they are missing their eyes. Not true. I have heard of some kids with anophthalmia in both eyes and these children display signs of having light perception. You just never, ever know. You cannot say with any certainty that a baby is blind until they absolutely prove to you that they are.

When Bridget went in for a routine ultrasound the tech noticed that her baby’s eyes seemed small. Upon further testing/measuring the eye sockets they realized that they were really small. Although, no one knew the extent of the underdeveloped eye sockets. They wouldn’t know for sure until her baby was born.

For a long time after Oli was born I would think about what it would have been like if I had known about Oli’s eyes before she was born. Most people don’t know until birth because eye measurement just isn’t something they do with a routine ultrasound. They only do it if the tech notices that the baby’s eyes look small. I can make arguments about which would have been better for me, knowing or not knowing.

On one hand, I’m glad that I didn’t know because I got to enjoy my pregnancy. As much as I can enjoy being pregnant, which is not very much. I didn’t dread her delivery or have to worry about what would happen afterwards. For people like me, this was a very good thing. My mind has a hard time staying in today as well as suffering from constant abuse from my nemesis, Gertrude. That little old lady would have made my life a living hell in the months before her birth. If I would have known I would have been plagued by a constant rush of bad scenarios and terrible outcomes running through my head.

On the other hand, if I would have known, maybe I would have been better prepared. Maybe I could have talked to another A/M mom before she was born. Maybe it would have helped. Maybe not? Maybe I would have been paralyzed with fear and raging pregnancy hormones. Maybe….

Now it doesn’t really matter. Not knowing is just part of my story.

I talked with Bridget for a long time that warm day in May. I tried not to let my sadness or my fear for her creep into my voice that day. I tried to just listen and offer her whatever I had that might give her some peace. The truth is…Bridget already had it. Although I’m sure that she was scared, she already had a sense of peace about her because Bridget had faith in something bigger. Faith that her baby would be born exactly as God had intended and she knew that her baby would be well taken care of.

Her baby girl was born in September 2009. She has bilateral anophthalmia. She is totally blind.

And she perfectly named her baby….Faith.

If you want to read more about Bridget and her sweet Faith go to www.superbabyfaith.com

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Fine-Garbage, Happy-Lie Vomit

3 Mar

When I reread my old blog sometimes it strikes me as funny and sometimes it just strikes me as sad. I think I honestly believed all of the things I wrote back then. I believed that Oli was learning to walk and talk. I believed that it was still possible for her to just one day catch up to other children her age. Even though by the time she was 2 it was clear that she would not.

I was probably moving into denial at that point. I bounced around the first 3 stages of grief frequently in the beginning of Oli’s life. One moment I would be in denial and isolation and the next I would be angry. And then I would move into bargaining only to be swung back into denial. Most frequently I found myself in depression. Only recently have I moved on to acceptance and haven’t looked back since.

I didn’t know any of this then though. I didn’t consciously realize that I was grieving and nobody told me.

I thought maybe I just had bad coping skills (which I did) or that I was a bad person and a bad mother.

To combat my inner feelings of inadequacy, I told the world that everything was amazing. I tried to convince them that this was my lot in life and I whole heartily embraced it and was moving forward. I tried to convince you so maybe I would begin to convince myself. I thought that the more I tried to sell everyone on my fineness, the more fine I would eventually become.

It didn’t work out that way at all. The more I lied and faked happiness the more alone and miserable I became. By not letting anyone in, I isolated myself so deeply that I became entrenched in the quicksand of grief. Every move I made and word I spoke sucked me down and eventually had me suffocating on my own fine-garbage, happy-lie vomit.

As I move forward and continue my story I have to read the old blog to A.) remember what the hell happened 3 years ago because so much has happened since and B.) because it reminds me of that grieving process and I can clearly see it now in my writing. I can read a post from back then and see: lies, hope, sadness, fear, optimism, bargaining, pain, denial, anger, and a sense of being lost.

The one thing I don’t see in any of the old posts are real, genuine feelings. I see a bunch of words on a computer screen attempting to fool the world into believing that I was okay.

In the history of humanity, there was probably no bigger untruth.

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The Night Was My Enemy

1 Mar

“Sometimes the hardest part isn’t letting go but rather learning to start over.”

― Nicole Sobon, Program 13

I called Oli’s doctor and told her our decision to try Melatonin. She suggested that we start at 3mg and see if it helps. The first night I gave it to her I was so hopeful that she would begin a normal sleep pattern. I crushed up the pill and mixed it in some applesauce at bedtime. As Oli closed her eyes I whispered a little made up song in her ear.

“Sleep sweet Oli. Sleep tonight. Sleep sweet Oli until it’s light.”

It worked!! For the first time in months she slept through the night. I would like to credit my little song and the mystical powers of my voice, but there was a reason I was whispering it to her and not singing it.

Melatonin was now my best friend.

It was wonderful seeing what regular sleep did for her. She had more energy, ate better, and put on some weight. She finally weighed 20lbs at 20 months old.

It helped me tremendously too.

Before we tried Melatonin I would occasionally have anxiety attacks when darkness fell. I worried every night about how many hours of sleep I would get. Was I going to be able to function at work the next day? If I was staying at home the following day I worried that my temper would be short and that I would be too exhausted to do anything productive with the kids.

The night was my enemy. It held all of my fears, inadequacies, demons, unfulfilled dreams and unanswered questions. It made me feel weak and useless. I would hold my playful baby in my arms at 2am and silently cry so she couldn’t hear my anguish. I would turn my head so my tears wouldn’t fall on her face. And I would pray in the dark. I prayed and prayed for peace. I prayed for comfort and then I would wrap her up in her blanket and hold her tightly to my heart. Oli’s link to my heart and the complete love I felt for her was the only tether I had binding me to this life. This place and my role as a mother. I held onto her and gave this tiny person the power to hold me down and keep me from floating away.

Once she started sleeping it lifted some of those anxieties from my shoulders and allowed me to take a much needed deep breath. I actually took deep breath.

I hadn’t done that in a very long time.

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Was The Sandman Hiding In A Bottle Of Melatonin?

27 Feb

Taking ‘naps’ sounds so childish…I prefer to call them ‘horizontal life pauses.’- Unknown quotes

When Oli was 18 months old I crumbled under her terrorist acts of sleep deprivation and gave her a magical pill called melatonin. I had been hearing about this over-the-counter medication for months, but had been previously reluctant to try it. The only medicine I had given her before was Tylenol, Prevacid for her reflux and a low dose antibiotic to prevent kidney infections caused by her kidney reflux. I was scared to give my baby anything not approved by the FDA. Which like most supplements, it isn’t.

I was also apprehensive because I had read and heard mixed opinions about the use of it in children. Although no one came right out and said “If you give your child this medicine it will harm her.” I had read that its use was too new for studies on its possible long term implications to be available. So essentially I heard “If you give your child this it may harm her.” That was an enormous and terrifying maybe.

That was why it took me an entire year before agreeing to try it.

Eventually I came across articles like this:

“Studies of melatonin use in children have shown it could reduce the amount of time it takes to fall asleep and increase the duration of sleep in children with mental retardation, autism, psychiatric disorders, visual impairment, or epilepsy.”—-from cbsnews.com

At this point I didn’t know that she was autistic. She was too young for psychiatric disorders and did not have epilepsy yet. She was blind and could possibly have MR. That was enough for me to start looking more closely at reasons to try it.

(Did I mention that it had been a whole year since the elusive Sand Man had made regular house calls to Pahrump?)

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And I began to realize the very big importance of a very tiny gland that Oli just happened to be missing.

So I began researching articles like these: taken from Wikipedia

“Circadian rhythm

In humans, melatonin is produced by the pineal gland, a small endocrine gland[26] located in the center of the brain but outside the blood–brain barrier. The melatonin signal forms part of the system that regulates the sleep-wake cycle by chemically causing drowsiness and lowering the body temperature, but it is the central nervous system (specifically the suprachiasmatic nuclei, or SCN)[26] that controls the daily cycle in most components of the paracrine and endocrine systems[27][28] rather than the melatonin signal (as was once postulated).”

That was clincher for me. If she doesn’t have the gland that produces melatonin and she doesn’t have any light perception to help create a sleep-wake-cycle then how in the hell was she ever going to sleep without some kind of help?

Once that realization finally sunk in I jumped into my car and raced my stressed, sleep deprived, pajama clad butt to Walgreens. Like a woman on a mission I shoved aside little old ladies and received snooty stares from well rested patrons. Oblivious to the rest of the customers in the store I made me way to the supplement section and grabbed two bottles. My savior came in a little green bottle with a yellow lid.

I immediately encountered an unforeseen problem. There were two doses available at Walgreens. One that was 3mg and one that was 5mg. How much do you give an 18 month old? I had discussed trying Melatonin with her doctors, but we had never finalized the decision so we never talked about dosage. I took them both to the register feeling severely deflated. I wasn’t going to be able to try it tonight.

I paid for my purchase and climbed reluctantly back into my car.

Another long night was waiting for me…

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I Didn’t Sleep In 2008

26 Feb

Everyone should have kids. They are the greatest joy in the world. But they are also terrorists. You’ll realize this as soon as they are born and they start using sleep deprivation to break you.
-Ray Romano quotes

By the time my mom moved in with me in April of 2008 I think I had been slowly losing my mind.

True, it was partly because of my complete submersion into Oli-land and lack of full emotional participation in anything other than blind baby support. It was also due to a familiar term recognized world wide by new parents. And talked about, dreaded, cursed, and feared by the blind community.

Sleep deprivation.

When my girl was 6 months old she just simply stopped sleeping.

She was on her own little planet where there was no 24 hour day. Sometimes her day was 20 hours, sometimes it was 27 hours. There was absolutely no sleep schedule. She would go to bed at 7pm get up at 1am, be up until 9am, go back to sleep until 2pm, get up and stay up until 12am, sleep until 4am. . .every single day was different.

When I went to work with bags under my eyes, mismatched socks, and had forgotten to run a brush through my hair, the new moms in the unit would spot me across the room like a bug drawn to a light. They knew what I was suffering from and they were always ready to inundate me with solutions to Oli’s sleep problem.

“Put her to bed at the same time every night. Make sure she’s had enough to eat. Bath her with this soap and then apply this lotion. Play this song before bedtime…” The list goes on and on.

I listened and I tried anything anyone ever suggested to me. Nothing worked. The only thing I refused to try was putting a dab of alcohol in her bottle at night. But that may have simply been because I didn’t want to share and needed every last drop.

I read books on sleep, googled sleep solutions for blind babies, talked with other parents of blind children, asked her pediatrician, doctors who worked in my unit, and random strangers at the grocery store who looked just like me. A soundly sleeping infant in a car seat and a mother looking like she had just returned from war, hadn’t eaten in a week, showered in 2, or slept for 3. We would bond in the frozen foods section describing last nights battle in which our child always defeated us. Granted, their baby was only a month old and mine was turning one year.

Eventually by the time my mom arrived I had just given up.

I was totally convinced that Oli was never going to sleep again.

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