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I didn’t want to pick her up.

24 Jan

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.” -Douglas Adams, The Long Dark Tea-Time of the Soul

I, however, was not so willing to accept my destiny. I wanted to fight it, change it, punish it, scream at it, plead with it, bargain with it….Anything but, accept it.

I was left alone at the hospital with Oli when Seth had to go and drop Kekoa off back with his Grandma. She was sleeping peacefully in her little clear plastic bassinet beside my bed. I turned on the TV for a little distraction. This turned out to be a very bad idea.

I started watching the new mommy/baby show that is on the hospital channel. I guess I felt like torturing myself for a little while. Watching all those cute babies and learning about their development. They were smiling and cooing at the camera. Their big eyes filled with the wonderment of the new world they’ve just been introduced to.

Would my daughter ever smile at a camera and coo like a normal baby?

Would she even live long enough to achieve this level of development?

These were the earth shattering questions that I felt the need to ponder at this moment. Watching all those beautiful babies I started looking at my own beautiful tiny baby girl. Beautiful but, different.

And then I was afraid of her.

This little 6 pound peanut. I was suddenly afraid of her. How could I possibly take her home and care for her? How could I teach her? I had never even met a blind person before.
I looked back up at the television monitor and wished with all of my heart that I could just reach through that screen and grab one of those babies. I wanted to replace her with one of them. One I wasn’t afraid of. I looked at her again.

I didn’t want to pick her up.

But, then I did pick her up. Because that’s what mothers do. We pick up our children and love them. Even when they don’t fit into our perfect little box of what we thought we wanted. We pick them up and love them because they are our babies.

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Destiny

24 Jan

“Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired and success achieved.” -Helen Keller

Destiny is a funny thing. There are times in my life where I have hated it and refused to believe in it and there are times that I have witnessed it’s amazing power. Destiny is a strong word. I do not say this lightly when I tell you that Kekoa was destined to be Oliana’s big brother.

This is the story about my 1st miracle. What better way for a miracle to arrive than in the form of a little, 18 month old boy named Kekoa.

The day that the doctor gave us the awful news about Oliana’s eyes was no doubt one of the most painful experiences of my life. It was absolutely devastating to my husband and I as well as our families. It was devastating to everyone except one little boy. One little bright light that happened to come to visit me that day to meet his new baby sister.

I had just finished telling Seth that our baby was going to be blind. Kekoa was wandering around the hospital room playing with his favorite cars and periodically watching the cartoons I had on the TV. After the tears were dried up and Seth and I had composed ourselves, I ask Kekoa if he wants to meet his new sister. We had been practicing for months with a tiny toy doll and he was very excited to show us just exactly how gentle he could be.

Seth picks him up so he can have a better view of her lying in the bassinet. He asks Kekoa if he wants to give her a kiss. He slowly nods his head yes and says “bee-bee”. Seth leans down and Kekoa gives his sister the sweetest little kiss on the top of her head. He then asks to be put down on the floor. Seth puts him down on the ground and…..

He starts walking around the room with his eyes closed and his little chubby baby hands out in front of him.

He is pretending to be blind.

Somehow this little boy, a baby really, has this whole thing figured out in 20 minutes. Tears that had been dry just a few minutes ago immediately race down my cheeks. How does he know?

He then opens his eyes, turns around and looks at his 2 astonished parents. He just looks at us like, “Yeah. So she’s blind. See I can do it. It’s no big deal.”

I will forever love my son for the millions of gifts he has given me as his mother. However, the memory of him walking that room with his eyes closed with be forever imprinted in my mind as one of the things I love the most. It was the moment I realized that Kekoa was more than willing to accept his destiny.

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Laughter

23 Jan

“The most wasted of all days is one without laughter.” -E.E. Cummings

So I couldn’t help but write a little note about my husband’s reaction to my last few posts. And then our subsequent laughter. Proving once again, you really can laugh at terribly sad things.

Seth was out when I wrote and published the last post. I couldn’t wait for him to get home so he could read it. This one even made me tear up. I’m not a big crier so I was shocked when I re-read the post and felt tears pooling in my eyes.

(How silly considering I wrote the thing!)

I was curious to see his reaction. He is a crier so I knew he probably would. (Sorry honey but, you know you are.) But I was surprised at our reaction afterwards. This is how it goes…

Seth reads the post. I am sitting there staring at his face as he reads it. I am trying not to be obvious about it so I am pretending to clean up the kitchen.

(Shhh. I’m sneaky like that.)

He finishes. Looks up at me with tears rolling down his face and says, “That’s horrible!”

For a second I’m offended. What? Then I realize he’s talking about that time in our life, not my writing.

I look at him with tears in my own eyes as that memory breaks the surface again and tries to taunt me. Reminding me of how incredibly sad and helpless I felt then.

It only stays for a moment though and then retreats back into the cave where I have sentenced it to live in the back of my mind. Those memories of complete sadness are not allowed out very often.

Then I look back up at Seth and our eyes meet. We both burst into uncontrollable laughter.

ME- “That sucked!”

SETH- “It did suck didn’t it!”

And then we laugh some more. Because that’s what we can do now. I never want to go back to that place of grief but, sometimes it’s a good reminder of how sweet the laughter can be.

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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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