Archive | 11:13 pm

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.

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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