Tag Archives: blind

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.

Tags: , , , , , , ,

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.

Tags: , , , , ,

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.

Tags: , ,

Newer Entries →