Oli is the designer behind our current hand hearts design. We are pleased to introduce her through a touching blog post written by her mother, Shannon.
“She looks perfect. Good job Shannon. Let me know if you need anything else.” The doctor who delivered my baby girl smiles at me quickly before washing his hands and leaving the room.
Oliana, Oli, was born on a warm May night in 2007 in lucky Las Vegas, NV. She was born after 35 weeks of a typical pregnancy. She was born after 35 weeks of planning, dreaming, expecting everything that I had expected with my first pregnancy. After 35 weeks of thinking that it was all going to go according to plan like it had with my son.
It didn’t. Not at all.
Once the doctor 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 tiptoed into my mind in the last few weeks prior to delivery. All of a sudden, it had 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. My husband 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. I was a NICU nurse after all.
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.
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 sat 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.
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. Darn 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.
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 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.
A lot has changed in the 6 years since Oli was born. We learned that she did have severe bilateral microphthalmia. We learned that she had been born without any eyes. We learned a few years after that, that she was globally developmentally delayed, not able to walk very well, had autism, and suffered from seizures. We learned that she would not speak.
But we learned so much more than that.
We learned that a diagnosis does not have to stop a child from living a normal life. A medical label does not have to keep anyone from achieving their dreams.
We learned that despite her lack of communication and vision we would know our daughter like no one else in the world would be able to know her. We can read every eyebrow raise, every turn of her lips, and every crinkle in a displeased nose scrunch.
I can close my eyes and feel the weight of her arms wrapped around my neck in an expression of love and I never need to hear the words “I love you mommy”.
I know these things without reading the expression in her eyes and I know them without hearing the words spoken from her lips.
I know Oli and I love Oli with a fierceness that I would never be able to describe to you in words. She has changed my life for the better in so many ways that I would need a few chapters instead of one single blog post to describe them.
We now compete in triathlons and 5k’s together.
Oli will show you, anything is possible.
This is my Oli.