Archive | 8:30 pm

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.”

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She asked if she could see my baby.

29 Jan

“When someone is crying, of course, the noble thing to do is to comfort them. But if someone is trying to hide their tears, it may also be noble to pretend you do not notice them.”

― Lemony Snicket, Horseradish: Bitter Truths You Can’t Avoid

Seth and I decided to go to the Nevada Blind Children’s Foundation open house. I was nervous about taking Oli out anywhere besides the doctor. I didn’t want people staring at her or asking me questions about her eyes. I didn’t want to have to start explaining my baby to people. She was only a week old.

We had to make the trip though. We didn’t have any other place to go. I needed to talk to another parent about what it was like to raise a blind child.

The open house was in Las Vegas. I tried to prepare myself on the hour long drive there. I didn’t want a lot of people looking at her or touching her. She was so small and I felt that fierce need to protect her like I had my son. I brought my baby sling to put her in.

I brought it because I knew that it was the best way to hide her from the world.

If I could only hide her for a little while longer… maybe eventually I would be ready for the world to meet her. Right now, I just wanted to get in, ask my questions, learn the secrete language or hand shake or whatever it was that I needed to learn in order to live this life and function normally.

I really thought that these people would give me the magical keys to my new life. I thought they would open the door for me. After all I was now part of their club. I had a child that was blind. I thought they would just sit me down and explain it all.

It didn’t happen that way.

They were very nice. They told me their son was 3 and had bilateral microphthalmia. I remember that I really wanted to meet him. I wanted to be able to picture what Oli would be like in 3 years. I wanted to see what his eyes looked like. I thought that because Oli had the same condition as him they would be very similar. I thought all kids with the same diagnosis were similar. Obviously there was so much that I didn’t know. I was disappointed when they told me that their son wasn’t there.

The mother of the little boy approached me.

“How are you doing?” she asks me.

Of course I replied, “I’m fine. Thank you.”

“Can I see her?” she startles me with her question.

Oh my God. The moment of truth. Someone wanted to look at her. At least this was someone who was familiar with her condition. I felt a tiny bit more secure as I pulled the fabric back from her face. She peaked inside the sling.

“She’s beautiful. Congratulations.” she smiles.

Congratulations?

I don’t think anyone had said those words since we found out about her eyes.

As tears welled up in my eyes the next words out of my mouth were spoken with complete honesty and appreciation for that one word. Congratulations.

“Thank you.”

Thank you for reminding me that she was a baby. She was my baby despite her disabilities. I should be proud of her and people should not be afraid to congratulate me.

That word was spoken by a woman who, through her own experience, knew exactly what I needed to hear. She could sense that I was frightened about what people would say. Frightened by the way people might look at her.

She knew what I needed and that is exactly what she gave me at the moment when I needed it most.

Comfort.

Searching for the end of the rainbow

29 Jan

“Remember, an easy question can have an easy answer. But a hard question must have a hard answer. And for the hardest questions of all, there may be no answer -except faith.” -Charles Sheffield, Brother to Dragons

We went to the opthamologist appointment 3 days after I took Oli home. This is the doctor that the hospital had recommended to us. Since this is the only suggestion we had received so far, we went.

Her name was Dr. Shin.

She was sweet and sympathetic, but she told us that she was not familiar treating microphthalmic children. She could only tell us what we already knew. Oli’s eyes were extremely small and she probably would be totally blind.

She did lead us a few more steps into the beginning of our journey by giving us two names.

One was the name of a family who also had a son with microphthalmia. This family had started a foundation called the Nevada Blind Children’s Foundation.
She told us that the foundation was having an open house in a couple of days and we should go and meet this family.

Finally! We were going to be able to talk with someone who knew what we were going through.

The other was the name of a colleague she went to school with. He was another opthamologist but, had treated kids with microphthalmia before. He was located in Los Angeles which was about 6 hours away.

I still did not know what all these people were going to do for my daughter and my head was swimming with too much information. I thought that the doctor in L.A. was going to fit my daughter with her first pair of conformers. I found out 2 months later, when we saw him, that he was just more of an expert on her eye condition. I’m still not completely sure why we needed to see him. He told us the same information that we had heard since she was born. That her eyes were extremely small. We did finally get the name of an ocularist though.

I felt like I was on a scavenger hunt. Each person we met would lead us to another person and they in turn would lead us to another. Each clue was supposed to be leading me closer to an answer.

But I never received the answer I was looking for.

A way to make her better.

I may as well have been searching for the end of the rainbow.

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