Archive | January, 2013

He began to cry.

23 Jan

When I think of that moment I don’t even know what to say.

It still makes my heart race and my eyes tear up when I remember him looking down at me lying in that bed with our baby girl next to me. I’m sure I looked like a complete mess. I had been crying and panicking. Wondering when I was going to wake up from this nightmare.

He walked over to the bed with a panicked look of his own.

He knew.

He knew something was wrong with our baby. I could see it written all over his face. I was suddenly glad that I looked a wreck. At least the first words out of my mouth didn’t have to be…
“Sit down. I have some terrible news about the baby.”

Nope. I just looked at his face and blurted it out. “She’s blind Seth. They say she doesn’t have any eyes. Or if she does have eyes they’re really small and they probably don’t work. She’s blind. Our baby is blind.”

He put Kekoa down on the ground and did what any father would do.

He began to cry.

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Mother’s Day Weekend

23 Jan

“Life shrinks or expands in proportion to one’s courage.” -Anais Nin

After the doctor left my hospital room that day I felt pain like I have never felt pain before. I started questioning things that I have never questioned before and I began to ask the obvious question, “What the hell just happened to me?”

In a mere 10 minutes my entire life had changed.

The worst thing was, I had to be the one to tell my husband. He didn’t even know yet. I had to tell this poor guy, who wanted nothing more than to give his children anything and everything in this life, that there were going to be things he wouldn’t be able to give his daughter.

I was going to have to break his heart like it had never been broken before. Damn that doctor for leaving me with this responsibility!!

As it was, though, I couldn’t really think of anyone else who should tell him. I surely didn’t want that doctor to come back in here with his emotionless tone and his slightly bored attitude. I didn’t want that guy telling him that all his wonderful dreams of showing his daughter the beauties of Desert Mountains and Hawaiian sunsets were never going to happen.

I had to be strong for him.

I had to pretend that I knew we were going to get through this. And I was going to have to do it soon because he had just walked through the hospital room door. He walked in holding my beautiful baby boy and an armful of balloons and flowers.

Because…it was Mother’s Day weekend.

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What did he just tell me?

22 Jan

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Seth left the next afternoon to go pick up my son Kekoa (he was 18 months old) from his Grandma’s house where he had been staying. The pediatrician, who was supposed to come and look at Oli in the morning, still had not shown up. A little while after Seth left, the doctor walked through the door.

“I’m just here to take a look at your baby.”

I sit up in the hospital bed anxiously awaiting his assurance that everything is fine. “Ok. I’m kind of worried about her eyes because she hasn’t opened them yet. I think they’re just swollen, you know because I had been in pre term labor awhile and I’m sure that stressed her out and probably caused some swelling, but I’m sure she’ll open them soon. Maybe later today or tomorrow. Do you think? I’m sure there’s nothing wrong. They’re just swollen. Right?”

He just looks at me like he’s mildly bored and somewhat irritated because I am rambling at this point. I tend to ramble and talk really fast when I’m nervous.

“Are you going to look at her eyes?” I ask. I am quickly losing patience with his non-committal attitude.

He is looking everywhere else besides her eyes. Her feet, legs, tummy, arms, nose, mouth. Taking his sweet time at it too, I must say. I just wanted to scream at him “TELL ME NOTHING IS WRONG WITH HER EYES YOU BIG JERK!!”

Finally he tries to open her eyes. Oli starts screaming her head off like he is trying to rip her eyelids apart. Which is essentially exactly what he was doing because they were literally fused together. After trying this for a minute he puts the blanket back over her, straightens up, looks at me and says,

“Well, I think she has either really small eyes, or no eyes at all and she will be completely blind. Microphthalmia is what it is called. Do you have any questions?”

My mouth is now gaping open, tears are pooling in my eyes, and I’m looking back at him with a mixture of astonishment and offence. Do I have any questions? Well let me see… I guess I have two. Where did you get your medical license and where do you live so I can come rip your heart out while you are sleeping. Like you just ripped out mine.

Did I have any questions? What a dumb question. Of course I had questions but, at that point I couldn’t even remember my own name let alone think of a way to put together a question out of the millions of thoughts racing through my head.

“I don’t know. Have you ever seen this before?”

“Once. 15 years ago. A little boy that had Fraisers Syndrome. We’ll have to check her kidneys. She might not have any kidneys.” He answers with a blank, emotionless expression.

Again I am staring at him with my mouth open. Did he just say what I think he said? No kidneys? That means death right? I mean, I am a nurse and I’m pretty sure no kidneys means death. Did he just tell me she might die?

“Ok then. I’ll order some tests and we’ll let you know.”

With that he promptly walked out of my hospital room leaving me alone with my new baby that I now thought might die.

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Something is wrong

22 Jan

Right after Oli was born the neonatologist I worked with, that had attended her delivery upon my request, took her over to the warmer to check her out. At 35 weeks there is always a small chance that the baby’s lungs will not be fully developed. Oli’s lungs seemed perfectly fine. She was lying on the warmer, pink and screaming away. The doctor looked her over carefully.

“She looks perfect. Good job Shannon. Let me know if you need anything else.” He smiles at me quickly before washing his hands and leaving the room.

After he was gone the nurse placed her on my chest. I really didn’t notice anything unusual about how she looked at first. After about 10 minutes I did think that it was strange that she wouldn’t open her eyes. My son had opened his eyes right away after he was born. Oli seemed to have hers tightly squeezed shut. I quickly ignored the small nagging feeling in my chest. The feeling that had all of a sudden returned. Sneaking its way through my heart.

Something is wrong with her.

After about a half an hour the nurse took her back to the nursery to clean her up, give her her vaccines and put medication in her eyes. These are things that the hospital does with all newborns. Seth went with the nurse to watch over our new daughter. A little while later he came back and told me that she was a little bit cold so they had placed her under a warmer to get her temperature up. Then he said something that made that nagging feeling grow a little bit stronger.

“The nurse couldn’t get her eyes open to put the eye drops in. She said that she is concerned that her eyes may still be fused shut.” He is looking at me with a significant amount of fear in his eyes.

“What? That doesn’t make any sense Seth. Baby’s eyes stop being fused after about 24-25 weeks. She’s 35weeks! No. They’re not fused shut. They’re just swollen. I’m sure they will be fine in the morning.”

“Well, maybe. But the nurse is going to call her pediatrician right away in the morning to come and look at her. I’m sure you’re right. They’re probably just swollen.” He looks slightly more relieved relying on my medical knowledge of newborns.

Deep down I knew that something was not right with her eyes. I knew that she should have opened them or at the very least the nurse should have been able to open them. I had to ignore those feelings though. I had to make myself believe that she was fine. I went to sleep early that morning after the nurses brought Oli back to the room. But before I did I sent a little prayer to heaven. The first of many prayers for my sweet girl that went unanswered.

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

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Fix her

21 Jan

“Once you had put the pieces back together, even though you may look intact, you were never quite the same as you’d been before the fall.” -Jodi Picoult

I used to get so mad when people would try to talk to me about “fixing” her.

They would say things like “You never know what the future holds. Someday they will invent a way for her to see”. I didn’t want to hear any of it. I knew they were just trying to give me hope and trying to get me to see the rainbow at the end of all this but, I couldn’t hear it.

I again, being a –worst-case-scenario- girl, wanted to make myself believe that she would never be able to see. Secretly, this was only part of me.

Secretly, I wanted to have hope.

Let’s face it. I am a nurse. I wanted them to give her some kind of magical pill or hook her up to some kind of machine and fix her. I just wanted so desperately to wake up one morning to a baby with vision. I wanted someone to tell me what her future looked like and that she would be okay.

I had that tiny seed of hope for a little while. Until one day I didn’t.

Until one day the growing list of things wrong with her outweighed any hope I had of her living a “normal” life and the disappointment became too much. Until one day, another doctor, another specialist, another therapist unknowingly squashed that little seed of hope like an insect they didn’t even notice. They never noticed that little seed of hope that I had for her future.

Let’s talk about all of those specialists.

Let’s talk about how to approach new parents of a special needs child. First of all, if you’re the pediatrician delivering devastating news to parents about their newborn, you should probably wait until both parents are present in the room. Not tell the new, already hormonal mommy by herself in the hospital room. You are changing somebodies life forever. You need to be compassionate and gentle. You need to have some kind of emotion.

Also, sometimes parents need a break in between all of the bad news. You can’t just sit parents down with a newborn and give them a 4 page list of everything they think, might be wrong with her. I don’t know. Break it up a little. Give us a coffee break. Offer us some pastries. By this I DO NOT mean send us back into your tiny overcrowded waiting room where we have already been sitting for the past 2 hours. Your waiting room is not that cozy and I do not enjoy your uncomfortable chairs or your rude receptionist. Obviously I’m not exactly sure how this should be approached with new parents. But, I do know this. They way it was done with my husband and I wasn’t conducive to acceptance.

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They didn’t have a special needs mother hat in my size

21 Jan

“There’s nowhere you can be that isn’t where you’re meant to be…” -John Lennon

I would love to talk about those first few days in the hospital after Oli was born as being beautiful and full of acceptance. I would love to say “They told me she was blind and I immediately put on my special needs mother hat and began my new identity.” That’s not exactly what happened. I went through a lot in the first years of Oli’s life to get me where I am today. I wouldn’t be doing her story justice if I just painted a pretty picture and pretended it wasn’t hell. Of course I loved her. I’ve always loved her more than anything. But that’s been part of my problem. I loved her so much but, I couldn’t fix her. I couldn’t give her eyes or sight. I couldn’t take away all the hardships and pain that I knew were in her future. I couldn’t make society treat her with respect or hell, even a human being, as a special needs child. I’ve had experiences with more than one doctor referring to her only as a diagnosis. Talking to me like she was an object and telling me everything that could possibly be wrong with her and not to expect much.

Lying in that hospital bed, after she was born, was absolutely the lowest part of my life. Mostly because I am a -worst-case-scenario- kind of girl. I can take a perfectly sunny day at the park and turn it into, an escaped convict jumps out of the bushes and kidnaps me where I spend the next 5 years locked in his basement forced to eat pickles and honey, in my mind. That’s just how my mind works. I just wasn’t ready to accept this life that had just punched me in the face. She didn’t fit into my perfect little box of what I wanted my future to look like.

Now, let me say something about life that I learned at that moment.

Life did not care that I had an 18 month old son at home. Life did not care that I currently had a full time job to get back to. Life did not care that I felt I did not deserve this. Life did not care that I felt somehow cheated. Life simply handed me this baby girl and said, “Ok. Here you go. Now what are you going to do? Are you going to run away? Fight this with every fiber of your being? Or are you going to accept this and move on?” Me being me, of course, I chose option number 2.

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Her eyes were closed

21 Jan

“Life is what happens to you while you’re busy making other plans.” – John Lennon

 

 

Oliana entered this world on May 10, 2007 with her eyes closed.  I never got to look into my baby girls eyes and form that instant bond with a ‘Hey! I know you! You’re the one I’ve been loving since the day I peed on that stick!’ 

Her eyes were closed because they were fused shut. They had not developed.  Severe bilateral microphthalmia.  That’s what it says on all of her paperwork.  It probably should have been etched on her forehead for all the times we referred to her as having “it”.  This had become who she was to me and to people around her.  My baby with severe bilateral microphthalmia.  Somehow these 3 words would become as familiar rolling off my tongue as her first name.  Which is very very wrong.  But that’s what it was.  She had become not my new baby girl.  But my baby girl born blind.  Born with severe bilateral microphthalmia.  She had no eyes.  These words were repeated over and over in my head during the next few months.

 

The moment the doctor said blindness, the little blond haired, brown eyed girl I had been dreaming about for 9 months died.  She died and I didn’t know that I was allowed to grieve for her.  I thought I had to become this perfect mother of a special needs child.  I could not allow the outside world to know that I was hurting so terribly inside.  In place of the little girl I had lost was this tiny baby with blond peach fuzz on her head and no eyes.  A baby I didn’t think I was capable of taking care of, nor did I know if I wanted.  I knew I could never abandon her.- (gasp) What would the neighbors think?-  But I didn’t know if I would be able to love her like I loved my son.  Because she was different.  If she didn’t have eyes what else was wrong with her?  Was her little brain a mess too?  What if she never walked or talked or could eat on her own? What if she never went to college or got married.  Even more horrifying, what if I had to take care of her for the rest of my life?  No. They got it wrong.  It has to be wrong!  I never signed up for this.  I ordered the little cute blond girl with pigtails in her hair and brown eyes to match mine.  I remember the day I got married.  I signed a bunch of documents including a marriage certificate, a give-up-your-last-name-and-assume-your-husbands-identity- page, and I definitely signed the one where you check the box under, you will have a happy life with rainbows and butterflies raising 2.5 HEALTHY children.  Not a disability.  I DEFINITELY did NOT check that box!! They delivered the wrong baby girl.

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I Just Knew

20 Jan

“Of all sad words of tongue or pen, the saddest are these, ‘It might have been.” -John Greenleaf Whittier, Maud Muller- Pamphlet

I just knew. You hear that phrase a lot.  Especially from mothers.  “I just knew he was sick.  I just knew that she was in trouble”…  But that pretty much is what happened with my Oli.  Months before she was born, I just knew.  I knew there was something wrong with her.  I was working in a neonatal intensive care unit as a nurse at the time so it was easy for people to blow me off.  I would tell my friends my fear and they would say, “You’re just used to seeing unhealthy babies born.  That’s why you think something is wrong.”  I would nod my head in agreement but, deep down I just knew that something was wrong.  It was only a few days after Oli’s birth that I would remember my recurrent dream.  It’s weird because she is 5 years old now and I have never had that dream again.

I was 32 weeks pregnant when I started having premature contractions.  A trip to the OB/Gyn would confirm the contractions and designate me to my bed for a few weeks.  I am not the best patient in the world.  My husband will attest to that fact.  So after about 2 weeks I declared myself miraculously healed and headed back to work.  And of course, the contractions immediately resumed.  I remember sitting on my bed the day before she was born.  Still having regular contractions, I called my fellow NICU friend and former labor and delivery nurse, Michelle for advice.  I remember saying, “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, but I didn’t believe her.  I just knew.

The contractions continued throughout the night and into the morning.  I called my OB/Gyn again and told them I was still having regular contractions.  A few hours later I was sitting in my doctors office being told that I was going to have my baby that day.  I was dilated to 5cm and there was no going back.  Excitement resumed it’s rightful place in front of all my other emotions.  I temporarily forgot my fears and smiled the entire way to the hospital.  She was going to be a little bit early at 35 weeks gestation. Having connections, I called up to the NICU to see if there was a neonatologist available to be there for her delivery.  Just in case…

I would often reflect on that drive to the hospital. I would try to conjure up those feelings of  excitement I felt as I waited to meet my new baby girl.  I would close my eyes and remember the girl I was before 11:00pm on May 10, 2007. I was so naively happy and content. I would look at old pictures of myself and just cry, telling the girl in the picture “Enjoy that smile.  It’s never going to look the same again.”  Awful, I know.  But I just could not get out of that deep dark hole.  Sadness had been slammed into my heart and I thought I would never feel carefree or happy again.

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In My Dreams

20 Jan

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” -Maya Angelou

I’m driving on an unfamiliar road during 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 has overcome my eyes and I am suddenly plunged into a black abyss. Terrified I cry out and try to  pull the car off the road and stop.  I can’t see anything though and I panic.  I know I am going to crash but no matter how hard I try, I cannot seem to make my eyes work. I have somehow become blind.

Suddenly, I am ripped from sleep and wake up drenched in sweat and breathing heavily.  It was a dream.  I wait for my sleepy eyes to adjust to the darkness and realize that I can ,in fact, see.  I have not suddenly been struck by blindness.  Only a dream. Vivid and unshakable yes, but a dream regardless. One that I was fortunately able to wake up from.  I would continue to have that dream frequently.  Until years later, when I was not able to wake up from that dream.  Except, it didn’t happen to me.  I was not the one suddenly struck by blindness. My newborn daughter was…and it wasn’t a dream.  It was reality.  My beautiful baby girl Oliana, had been born blind.

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