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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.

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.

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.

I Know.

18 Apr

I don’t know why I still feel the need to read through every new doctor report that I get about Oli. Especially when they are brain scans like MRI’s and EEG’s.

I mean, I know what they will say. I know how they will make me feel. I know that by the time that I reach the end of the report, I will feel that familiar heartache, sadness, emptiness, and hopelessness that I always walk away with.

I know that it will take me right back to all of those feelings that I felt, and ran from, in the beginning.

I don’t know why reading certain words about her makes me feel the way that it does.

I know that she is cognitively delayed. This is nothing new. I do know that there has to be changes in her brain that make her unlike other children her age.

I know that there are physiological reasons why she cannot dress herself, go the bathroom by herself, brush her teeth, talk, walk well, control her emotions…

I know all of these things, and yet I was still rocked and shocked when I read the words “static encephalopathy” on her latest EEG report.

Static encephalopathy?

Brain damage?

Huh?

My daughter doesn’t have brain damage. You, madam neurologist, are mistaken.
I googled the term “static encephalopathy”. This new, ugly label that you included in my daughter’s EEG report.
I googled it and I am totally regretting doing so. Although it didn’t really change anything. I already knew what those words meant.

Permanent brain damage.

Just seeing it written, actually written down, having been officially diagnosed, was enough for me.

Why did I have to read about it further on Google?

And why did the doctor not tell me herself that she suspected this?

Did she not know, that I didn’t know, that this is what they labeled her as?

Because I didn’t.

I didn’t know.

I just thought that she was delayed.

Just delayed.

I always think that it is a possibility that she will be able to catch up.

Maybe not completely. Maybe she would always be unique, but aren’t we all?

Did they have to go and write down, WRITE DOWN, that she has permanent brain damage?

Don’t they even care about my feelings?

Shouldn’t this new label have required an actual sit down with the doctor?

Shouldn’t an official diagnosis of “static encephalopathy” require a meeting with my family to explain what this means for my daughter? Why do they have to be such assholes and write down something like that in a report?

The only reason that I was able to read it was because I requested all of her records for this Medicaid waiver program that we’re trying to get her on. I wasn’t mailed a copy or given this piece of paper upon discharge from the hospital.

Now I sit here, with my daughter sitting beside me, tears pooling in my eyes, and whispering “I’m so sorry” once again.

I’m so sorry Oli. I’m sorry that this happened to you. I’m sorry that this is something that makes your life more difficult. I’m sorry that I had to read this ugly label and feel sad for you for a little while. I’m sorry that I had to look into your beautiful face, put my arms around you, kiss your neck, and let you feel my tears as they dripped down onto your shoulder. I’m sorry that I can’t tell you why I am crying.

I will make you the same promise that I have made to you since the day you were born.

I will NOT let this define you.

I will NOT let this hinder you or discourage you or slow you down in any way.

I will NOT let doctors or therapists or teachers read this about you and let them make decisions about your future based on what a piece of paper says.

I will make sure that they KNOW that this is NOT who you are.

I will make sure that they see everything that I see.

I will make sure that the world treats you the same as everyone else and in most cases…better.

Because you are my special little girl. You are capable of achieving any dream that your heart desires.

It doesn’t matter what a piece of paper says.

This…

I KNOW.

It makes me really sad mom.

9 Feb

I got the call that I am always terrified to get when I’m away from Oli.

“Shannon. Something is wrong with Oli. I think I need to call an ambulance.”

My heart fell to the floor and stayed there until she was wheeled into the ER on a stretcher and I could see her.

“What do you mean? What’s wrong?” I asked as my heart raced, but my mind cleared.

“Well she’s breathing really funny. Like holding her breath and I can’t keep her awake. Here. Listen.” My mom, who had been home with her while I took my other two kids to a horse vaulting stable, put the phone up to Oli’s lips.
I hear a strange grunting sound coming from my daughter.

“She’s been doing this for a while now and it’s getting worse. When she falls asleep it’s better, but as soon as she stirs she does it again.

“Mom. Listen. Lift up her shirt. Can you see her ribs or her sternum as she breathes? Does it look like she’s sucking in?”

My mom quickly checks. “No. No I don’t see that.”

“Okay good. What about her lips? Are they pink or do they look blue?”

“They’re really pale. I just don’t feel right about this. I feel like something is really wrong with her. She just keeps falling asleep.”

“Mom. Do you feel like you should call an ambulance?” I ask calmly. Going into more nurse mode at this point than mother mode.

“I’m not sure. Maybe. Something is wrong with her breathing.” She answers. I can hear the fear in her voice.

“Okay. If there is even a question that maybe you should, I need you to call. I am at least an hour away and by the time I get there to check her, things could have gone dramatically downhill. My phone is almost dead. I only have about 10% battery left. I’m going to call Seth and tell him to go home right now. I’ll have him call you on the way. He should be there in 10 minutes. Hang up and call 911.”

“Okay.”

I hang up and quickly call my husband.

No answer.

I call again.

No answer.

Oh my god. My phone is going dead.

I shoot him a quick text.

‘Call me NOW.’

He calls back immediately.

“Seth. I need to you to go home right now. Oli is not breathing right.”

“I’m on my way.” He replies in a calm voice.

I start to tell him that I’m leaving the stable now and that I’ll be about an hour…but he’s gone. I’m talking to dead air.

That morning Oli woke up happy. My mom and I had plans to take all three kids down to a stable in south Austin where their horse vaulting team has a Barn Buddies day once a month to raise money. The kids get to come down, learn some tricks on the barrels, and then get up on the horse to practice them with an experienced horse vaulter.

After Oli got up on Saturday morning she fell back asleep right after breakfast. I sent my mom a text and told her that maybe Oli shouldn’t go. I thought maybe she wasn’t feeling very well. My mom decided that she would just stay home with her and that I would take the other two kids and our dog. Shaka had service dog training right after the kids were done riding.

When I left, Oli was playing happily with her toys.

Kekoa and Ginger had an awesome time on the horses. It was really great because they always watch Oli ride at hippotherapy, but never get to ride themselves.

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That morning of fun quickly turned into a nightmare.

This was not Oli’s first ambulance ride.

Not even her second.

Her first executive ride to the hospital was one of the absolute worst days of my life.

October 4, 2011 is a day I will never, ever forget. Never.

That morning I woke up next to Oli violently convulsing and gasping for breath. She ended up being intubated with a machine breathing for her for two days.

The next ride was August 26, 2012.

And the last was on Saturday February 7, 2014.

I’d like to say that this will be her last, but I know that it might not be.

Her seizures, any person’s seizures, are no joke. I know that lots of kids have them. Some have hundreds a day. Some are lucky like Oli and only have them once in a while.

It’s really all about perspective. I don’t know anything but what I know about Oli. Her journey is no more or less than anyone else’s. We only know the life we live so it’s important not to minimize or over exaggerate something that we have no experience in.

I get really uncomfortable when I meet someone and they say “I just don’t know how you do it?! I could never do what you do!”

Yes you could. Yes you would.

I find myself thinking those same things though when talking with my friend who has a daughter who literally can have 100 seizures per day.

How does she get through it? How would I?

But I don’t have to worry about that because that’s not our life. I can talk with her about it. I can tell her how extremely terrified I was to get that call. I can tell her how Oli wasn’t breathing well and how awful it was because I’m sure she had more than one seizure yesterday. Like maybe 3 or 4 or 5. (I don’t know because they were seizures that we couldn’t see.)

And you know what she says? Not “Well that’s NOTHING! You should be grateful it was only a couple. My daughter…” Blah blah blah.

Nope. She doesn’t say any of those things.

She says “Wow! How scary! Do you need anything? Do you want to talk about it? How can I help you get through this?”

She validates my reality.

She doesn’t compare it.

That is powerful.
So incredible powerful.

I hear people compare themselves and their struggles to other families all the time.
Why?
Why are we judging when we should be supporting?

I’m so lucky to have so many incredible families in my life who do just that.
They support Oli. They support me. They support my kids and my husband.

We desperately need support because scenarios like the one we had on Saturday, do not leave a family unscathed.

The words I spoke to my children in the van as we left the stable, will not soon be forgotten.

Especially by my 8 year old son.

“What’s wrong mom? Why aren’t we going to take Shaka to training?”

“Your sister is having trouble breathing and is on her way to the hospital. We need to go there now.”

He immediately becomes quiet.

My three year old, Ginger, does the exact opposite. She has a million questions.

“What do you mean? What is she doing? I’m hungry. Can we stop for lunch? Can I have a snack? Do you have any juice? Are we going to see Grandma now? Are we going to Shaka’s training? Where’s Oli? Where is she going? Where are we going again?”

Oh. My. God. Ginger.

Ginger is either the best person to have with you in a crisis or the absolute worst.

I’m leaning towards the worst. 🙂

It was good because she was distracting me with her 5 billion questions and it was frustrating because I was trying to figure out where I was going, who was going to take the dog, which hospital they were taking her to? Did my husband get home? Are they on their way? When was Ginger going to STOP TALKING!

I got a hold of my friend, Cat, who just happened to be at the stable with me.

“Cat. I need you to come get the dog. Oli is being taken to the hospital by ambulance. They’re taking her to Dell Children’s.” I speak rapidly into the phone.

“I’m on my way.”

Man I have some good friends and family.

I had so many people texting and messaging me, offering kind words, support, and offers to watch my other two kids. It was very very humbling to realize how many people were willing to drop what they were doing and help.

Once we got to the hospital Kekoa was even quieter and Ginger even more inquisitive.

Fortunately Cat got there as soon as I did and took the two kids before Oli was wheeled into the room.

We didn’t know what to expect, but I knew I didn’t want my kids to see her surrounded by hospital staff, talking, asking questions, and working on Oli.

My son has already seen too much in his short 8 years.

Once Oli got there she was breathing better. She was doing some breath holding off and on, but didn’t seem to be in distress. She definitely wasn’t herself. She was constantly falling asleep and wasn’t really moving at all.
If you know Oli, this is completely out of character. She is always going.

After we had been there a little while Cat asked if we could bring the kids in. Just so they could see that she was okay.

Unfortunately as soon as they got there a team came in to start her IV. My poor Kekoa was so flustered that when Cat escorted him back out of the room he grabbed my purse and tried to walk off with it.

After that, they didn’t come back in.

I can’t even begin to imagine what he must have been going through. I know what I was going through and it was awful. And I knew what was going on! He only knows that one of the times his sister took an ambulance ride, she almost didn’t make it back home.

Oli stayed at the hospital for about 9 hours. They ran a bunch of tests and then did an EEG.

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By the time they did it she was mostly back to herself. She was worn out and acting sick, she had been running a fever too, but she was aware of what was going on and awake. Once the EEG came back normal at 11 pm they said that, if we were comfortable, we could take her home.

We opted to go home.

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Oli was more than happy to be sprung from the hospital.

The verdict was seizure activity brought on by… we don’t know. A little virus maybe.

Seth had taken the kids to another friends house in the afternoon and then my mom went and picked them up so they could stay with her for the night.

Shaka stayed with Cat and his girlfriend Dubi.

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Yeah. He didn’t miss us at all. He is in love.

This morning my mom said that Kekoa was very tearful at her house.

We finally got him to talk about it when he came home.

“It makes me really sad mom.” He admits in a quiet voice.

He also said that he was really scared for Oli. Really scared.

Me too buddy. Me too.

It’s important that I never ever minimize his feelings.

I need to never compare, judge, or make him feel like he has to feel any other way, than the way he does.

As important as it is to me to have my friends and family validate how I feel…it is more important to me

that I validate my son’s.

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It’s a beautiful life.

20 Nov

When Oli was born my son Kekoa was only 17 months old. He had not even spent a year and a half in this life. On this earth. He was so incredibly young that I was still getting to know his little personality. I was trying to figure out what kind of person, what kind of man, he would grow into.

What kind of grooves would this little boy fall into after having a sister born with significant disabilities?
Would he stay locked into hers? Would he be able to find his way out? Would he be able to tread his own path, defining his own grooves? Would he be able to define himself and to find his own identity or would he continually be forced to follow along behind her?

Would I force him to follow along behind her?

Would he be mad at ME? Would he resent ME for the events in his life that were about to take place?
Would he resent HER for being born the way that she was?

As I sat on the corner of the tub, bathing my 17 month old little boy, I asked myself all of those questions. I cried over all of the possible answers that lay before me.

I cried for the little boy that I had promised to do everything for. I cried over the fact that I had somehow unintentionally just made his life so much harder. I cried because I was not going to be able to fix this for him. I was not going to be able to make this easy.

When she was born I never even considered the possibility that her birth could be the best thing that would ever happen to my family. I couldn’t even dream of recognizing the positive outcomes because I was so drawn into the pity parties and the negativity. I couldn’t stop feeling sorry for myself long enough to see the beautiful forest from the trees. I was stuck in an outcropping of horribly ugly, brown, leafless, dark, gnarly, trees. I hated those stinking trees.

As life moved on…

As I moved on…

As the world moved on… I began wondering what kind of person this experience would mold my son into. I began realizing that we had a unique opportunity to view our daily life as a constant lesson to learn about humanity. The good and the bad.

I learned and began to teach my son how to respond rather than react to people and situations that might not always be positive. I learned and then taught my son compassion and understanding rather than anger and resentment.

We talked about WHY people sometimes respond the way that they do to Oli. We talked about HOW we could and should respond when people are mean. We talked about how most people just don’t see the world the way that we do. We talked about how people are generally good and that sometimes they just don’t understand and are curious, but might not know how to ask about her condition.

We talked about a lot of things. We still talk about a lot of things.

Kekoa is 8 years old now. We talk like we’ve always talked, but now I try to get him to tell me how he feels about things. I try to get him to tell me how it makes him feel if someone is mean to his sister, but it’s hard.

He’s only 8.

Mostly he just says that it makes him sad. He says that he wished people understood her better. He wishes that people knew that she was just like them, but unable to speak or to see. He says that he wishes that they would consider her feelings when they were mean and not treat her like she doesn’t understand.

I wish that too Kekoa…

So we talk about those feelings and the actions that we can take to make it better.

I never really know how much he understands when I try to help him work through these things. I never know what he does with these talks and these experiences when he walks out of my front door in the morning and heads off to school.

Until now.

The mom of one of the girls in Kekoa’s school emailed me this morning to tell me a story about my sweet boy.

She said that her daughter Rachel, was being picked on by some boys at recess earlier this week. Her daughter told her that Kekoa had stood by her, comforting her, and helped her to reach a teacher who could help. Rachel told her mother later “Kekoa knows how to treat girls because he has sisters.”

Because he has sisters.

Because he has Oli.

Really that’s what it comes down to.

He has learned such compassion, such respect, such infinite wisdom because he has Oli to teach him.

He has a sister who has never looked into his eyes, never spoken his name, never uttered a sentence, but has taught him to be an incredible human being.

She is teaching him how to become a wonderful man.

I can see how beautiful my trees are now.

I can look my son in the eyes and never feel remorse or sadness about the way our life has turned out.

I can look at him and see the amazing gift that Oli has given all of us.

She has made every single one of us into a better person and has allowed us to live a life that I never even would have imagined.

It’s a beautiful life.

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.

If she was autistic…where did that leave me?

7 Jun

When Oli was two years old, a few drastic changes took place in her life. We moved 1500 miles away. We moved away from one of her grandmas, her aunties, her cousins, and the only house she ever knew. We moved away from her sister.

At the time that we moved, Oli was still taking. On the drive down she repeated the words “up” and “out” over and over and over. It was a looooong drive. I remember that we stopped for breakfast one morning on the second day. My mom asked her what she wanted for breakfast. Oli answered “eggs” and then clapped enthusiastically. My girl loves eggs. She also said “Mom. Dad. Grandma. Koa. Milk. Juice. Eat. Hi. Bye.” Those are just a few.

Six months after we got to Texas, I had another baby. By this point her speech had already started to decline. Ginger was born in March 2010 and by September, Oli had completely stopped speaking.

She did NOT do well when Ginger was born. None of us did. Ginger cried all the time, day and night for 4 months straight. I couldn’t put her down. Ever. She was either eating or crying. She rarely slept. Oli was stressed out and hated the baby. If she heard Ginger near her she would scrunch up her face and push her away. If I tried to get her to hold the baby she would cry. She didn’t understand what she was or why she was so loud.

Oli started stimming more and more. She stopped repeating simple words and didn’t use the words that had been frequent in her vocabulary six months prior.

By Christmas of that year I knew that something had happened. Something else was wrong that had caused her to stop talking. Was it the stress of the move and the birth of her sister? Or was it something else?

I knew that I couldn’t just take her to a regular doctor to evaluate her. Blindness complicated the diagnosis and I didn’t want them to misdiagnose her or misinterpret her behaviors (blindisms) as autistic behaviors because in blind kids they are not.
Most kids born blind have a lot of the same self-stimulatory behaviors that autistic kids have. They have a lot of the same sensory issues too.

Oli constantly shakes her head back and forth. Continually. All day long. (Think Stevie Wonder.) She has done this since she was a year old. She started flapping her hands around 2 years old. She loves to spin and swing and she’ll rock violently back and forth when she’s mad. She’s always seeking more and more input because she is missing the main way that human beings get their information. Through our sight. She puts everything in her mouth. Blind children typically go through a longer oral stage because of the reason I stated above. This is just one more way to get information if you can’t see it.

None of those things set off any alarm bells though. I knew that was just her blindness.

What DID set my heart racing and began to fill it with unspeakable dread and fear? What one thing lead me to question what was wrong with her?

Why did she stop speaking?

It felt like one day she was talking and the next day she just wasn’t.

What would cause this to happen?

One terrifying word came into my mind.

Autism.

I called the research center for anophthalmic and microphthalmic children. The Albert Einstein Medical Center in Philadelphia. I made her an appointment for an evaluation. They had developed a specific clinic staffed with experts on blindness to determine if our kiddos really were autistic or if their behaviors and characteristics were simply the results of being born blind. Many of our kids were receiving the diagnosis of autism when they weren’t and many of them were not being given the label when they were. That team was supposed to be able to clarify and correct the appropriate clinical diagnosis.

So I flew her to Pennsylvania and asked them the million dollar question.

Was my baby girl autistic?

During the months leading up to that evaluation I began to question, pray, bargain, and plead with a God that I had started to lose faith in. I began to cry and scream at him “You made her blind! You made her physically and developmentally delayed! Don’t make her autistic too! Please! I will do anything! ANYTHNG! Don’t make my baby autistic too!”

I laid in bed at night questioning my very life and existence. I began asking questions that I would never receive answers to.

I wondered why He would do this to her? Why would He do this to me?
Why had my life been so easy before? Why had it become so hard?
When was my nightmare going to be over? When was I going to wake up?
The more I prayed and pleaded…the farther away I drifted.
The more questions I asked…the less answers I received.

I flew Oli to Philadelphia with a heavy heart, a stomach full of knots, and an empty soul.

Where was my God? Would He answer my prayers?

I feared that I already knew the answer to those questions.

Where did that leave me now?

Living within the isolation of myself.

14 May

We moved from Pahrump, NV to Round Rock, TX on October 1, 2009.

By the time we moved I was exhausted. Mentally exhausted.

Living in that desolate island of fear, tears, sand and mountains had completely depleted me. I felt so alone. Although my mom only lived a few minutes away and my husband was with me…I was alone.

I had submerged myself so deeply in self-pity and self-hatred, blame, guilt, remorse, and those constant day dreams of what might have been, I was beyond reach of anyone else. I was alone in a dark, sad, tear-filled cocoon of my own making.

I couldn’t wait to move. I had pushed everyone away. I would talk with my friends, listen to stories about their children, the whole time thinking to myself “You don’t understand. You just don’t understand how hard this is for me.” They didn’t understand. Because I never told anyone. Moving seemed like the best solution at that point. I thought that if I changed my outside, if I changed my zip code, that it would change the way that I felt.

I had convinced myself that it was all because Oli didn’t have enough support. That it was because I didn’t have enough support. It was. But, it wasn’t. Oli did need more help with people experienced in blindness, but I had some support. I just couldn’t see it then.

I had met and made friends with other moms who had visually impaired kids. I had become good friends and remain friends with some of them. None of them were totally blind though. I had led myself to believe that because their kids weren’t totally blind, that they didn’t really understand what it was like.

I had made it US vs. THEM.

I had isolated myself even against the people who knew what it was like. I was looking for all of the differences in our lives rather than the similarities. I think some part of me enjoyed that feeling of isolation. Some part of me liked feeling sorry for myself and enjoyed believing that I was the only one in the world who felt the way that I did. That no one could possibly understand my struggles.

It just simply wasn’t true though.

LOTS of people knew how I felt.

If I just would have stopped for a second and looked outside myself, I would have seen that. I would have seen that I had people surrounding me that wanted to help me. They wanted to understand what I was going through. If I would have made myself available to them…if I would have made myself a little vulnerable…I would have seen that.

I didn’t.

I didn’t when we lived in Nevada and I didn’t when we first got to Texas.

HAPPY 6TH BIRTHDAY OLIANA!! MAY 10TH 2013

10 May

I made a slideshow for Oli’s 6th birthday. *Warning* Content may cause viewers to burst into tears. Use extreme caution when viewing and the use of tissues and/or sleeves is advised:) I hope you guys enjoy the pictures, the story, and the music.

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