Tag Archives: instinct

Why Are They Crooked?

20 Feb

“One of the reasons I blog is because I can’t afford
to pay for proper therapy.”

Once we finally arrived in LA it was one of those hurry up and wait moments. After what seemed like hours but, really was only 20 minutes, the receptionist called Oli’s name.

“Have a seat and Beverly will be with you in a little while.” she tells us.

A little while? I was practically bursting from my skin with impatience.

The ocularist, Beverly walks through the door a few minutes later.

We started out with Beverly’s partner, Steven Haddad but transferred to Beverly after a few visits. She was working more on different custom made conformers although Oli’s had never been custom fit. What I mean is, no mold was taken of her eye sockets and then a conformer made based on the mold, like it is now.

I would have preferred to stick with Steven.

Beverly was nice, but she would just never listen to us as parents. She was a rough spoken, tall, blond, older woman who liked to think that exactly what the prosthetic looked like or how it was positioned didn’t matter.

I didn’t really care at first when it was a little crooked and never seemed to sit straight. After a few appointments, I started to get annoyed.

“As long as it doesn’t bother her, it doesn’t matter that it looks like one eye is looking at the ceiling or that one is turned in. The point is that it is bigger and it’s in.” she would tell me.

Yeah, Beverly it does matter because it bothers me.

I didn’t want her eyes to look crossed or rolled toward the ceiling.

She never listened though. I should have been more vocal about it looking right.

After all, we were driving 6 hours one way and spending about $1000 on each eye.

I guess I just didn’t want to make a big fuss and trusted that she knew best because she was the professional. This was a common theme in the first few years of Oli’s life. I just trusted that everyone treated and loved Oli like I did. I thought that if they were teaching or caring for her they would give it 100% each and every time.

Now I’ve learned that, that isn’t always the case. Most of the time it is, but I’ve learned to trust that nagging feeling in my heart that tells me something isn’t as it should be.

I trust my abilities as her mother and know that I will always do what’s best for her and if it differs from what someone else is telling me, I have the right to say no.

It is my job to always give 100% because it’s not always the job of everyone else even when it should be.

IMG_0282
See how her right eye looks like she is looking at the sky.

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As long as nothing else is wrong…

29 Jan

“Prayer is not asking. It is a longing of the soul. It is daily admission of one’s weakness. It is better in prayer to have a heart without words than words without a heart.”

― Mahatma Gandhi

As we left the Nevada Blind Children’s Foundation that day I felt a little less alone. I finally met someone who knew what microphthalmia was. I still didn’t know what this would mean to my daughter but, I began to have that tiny seed of hope again.

The woman from the foundation told me that even though her son had bilateral microphthalmia and the doctors told them that he would be totally blind, he was actually able to see a little bit of red light. So maybe that was a possibility for Oli. Maybe she wouldn’t live in complete and total darkness. Maybe if I began to pray hard enough she would be given the gift of having some kind of light perception.

I began to once again direct my prayers toward Oliana having vision.

I didn’t realize then, that praying for someone to be given something, is not really how the whole prayer thing works. Although I was praying for her to have some sight, part of me was really praying for an easier life for myself. If she could see something, anything really, it would probably make this whole thing easier.

If she could see something she wouldn’t be among the small percentage of people who are totally blind. That small percentage that I had read about, many of whom are illiterate and unemployed. And if she wasn’t completely blind, I could probably still force her to fit into my little box of perfection.

As long as nothing else was wrong.

Many times I also prayed “God if she is going to be blind, let her just be blind. Please don’t let anything else be wrong.”

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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