Still Nothing

I feel like we're on a wild goose chase again, only this time it's for Rebecca instead of me.

The neurologist had nothing for us other than her MRI results, which we already knew. He's now sending us down to Milwaukee to a world renowned specialist. He was upfront. He has no idea what is going on with Rebecca, just that it doesn't have anything to do with her brain.

So, I'm waiting for a call from the doctor to tell me when we have to be in Milwaukee at the Eye Institute. I've been there myself many years ago when I first started having my eye problems. I never thought I'd be going through this type of thing again, much less with my daughter. What an awful feeling to know there's something wrong with your child but not have any idea how to deal with it. It's so frustrating!

Ahhh...Drama. How Boring Would Life Be Without It?

It seems there's never a dull moment around here. If it's not one kid, it's another. This time, it's two children at the same time with their own little "mini dramas" going on.

We took Rebecca in to have her eyes checked last week, and lo and behold, she's possibly going blind! It's not just your normal, "I need glasses to see better" type of thing.

Something is funky with the optical nerves in both eyes. They aren't right. She's been to a vision therapist, an opthamologist surgeon, and tomorrow she'll have an MRI done on her head to make sure there aren't any tumors or other nasty things going on in there. Her right eye is much worse than her left eye, but it apparently is affecting both eyes.

She got a pair of glasses yesterday. These will help her in school, but they aren't a cure. She was pretty happy with them though. I have to admit, they are pretty damned cute!

If all turns out okay with the MRI, she may have to have a spinal tap to determine if she has a thing called Papillodema. The doc said something about Pseudotumors too, where the body acts like there's a tumor but there's not.

Whatever the case, it scares the hell out of me. So far, they aren't able to say for sure what it is or if it's going to get any worse. The thought of my ten year old daughter losing her eyesight makes me sick to my stomach. Thankfully, the docs have said that my disability has nothing to do with what she's experiencing right now. My eye disease is not hereditary.

Will keep you all posted.

Now, we come to the oldest, Tristan. We made him an eye appointment for the end of this month. He wants contacts, we said no. Our insurance doesn't cover both, and it only covers one box of contact a year. Everything after that one box, we have to pay for. He's not happy, I don't care.

I told him that when he gets his job this summer, he can buy his own contacts, but I will pay for the glasses. He's still not happy. I don't care.

He forgets that he's not the only child in this family sometimes, and thinks he should get everything he wants, when he wants. I may sound harsh, but I'm sure he'll get over it. Sometimes that's just the way t hings have to be.

Echo Location For The Blind

I watched a show last night on the Discovery Health channel about Ben, the boy who sees with sound. As a young child, Ben was diagnosed with a malignant tumor in his head that resulted in the removal of both eyes to prevent the tumor from entering his brain and killing him.

Because of his young age, he adapted rather easily, teaching himself to use a series of clicks bounced off things around him to locate obstacles and maneuver around them with ease. At the time of filming for this show, Ben was fourteen, and living the life of a normal teenager without a disability. He wears prosthetic eyes, and anyone would be hard pressed to know at a glance that he was blind. Except for the constant clicking sounds he makes to direct himself, he doesn't consider himself disabled.

He rollerblades in the street, he walks to school, and he hangs out with his friends. He even plays video games! The story is just amazing!

Imagine the possibilities if every blind person could learn this skill. Except for the occasional obstacle that doesn't reverberate sound, such as a large hole or drop-off, a person could navigate their way through a busy street with ease. The only drawback would be that occasional hole or drop-off since sound cannot bounce back. A person has no idea just how large the hole is or how high the drop-off would be. In this instance, a white cane would be needed.

The echo location skill that Ben uses was compared to the ability of a submarine to find things under water. Or a dolphin that uses a series of clicks to communicate with and locate other dolphins.

I was just amazed at the life this boy leads. It gives hope and inspiration to the many other visually impaired people in the world. I know that when a person loses one sense, the other senses pick up the slack and become more intense. It's happened for me to an extent. While I'm not completely blind, my hearing has become more sensitive. I can hear much softer sounds, and I can hear individual sounds in a noisy situation a lot easier. Raindrops on a window during a storm becomes quite beautiful when you can't see the rain. You can hear each individual drop hit the glass.

Anyway, my hope is that if and when I ever lose my eyesight completely, I'm able to be as confident and self-sufficient as Ben. He is truly an inspiration.

Blindness Is.....

hearing each individual raindrop hitting the window.

feeling the faintest breeze.

getting lost in your thoughts without distraction.

sensing the smile on some one's face.

hearing the laughter in a voice.

smelling the softest perfume.

Blindness is feeling alive with senses.

History 101

I feel I should give a little insight into my disability. My disorder is called Choroidal Osteoma. Calcium deposits form in the back of the retina, and weak blood vessels are associated with it. If it were just the calcium deposits, my eyesight wouldn't be compromised. It's the weak blood vessels that cause the problems. Any amount of great pressure change causes the blood vessels to rupture and bleed. The bleeding eventually stops, but the scar tissue that forms during the healing process is what blocks my vision. The doctors have informed me that surgery isn't an option. The surgery would do more harm than good because of where the scar tissue is located in the eye.

I'm not totally blind. My left eye has no central vision whatsoever. I see blurry shapes and light around the edges. My right eye has some central vision, but what I see out of that eye is distorted and fuzzy. I can see where I'm at, and most of the time avoid running into things. If one of my dogs runs in front of me however, I'm sure to trip over it.

I've been to numerous specialist, had 100's of tests, and been told that I'm going to be this way for the rest of my life. I'm told to try my hardest not to get sick, such as with the flu, since vomiting seems to be what causes the episodes the most. I was told by one doctor that even just riding in a car changes the pressure in your eyes and could cause a weak vessel to rupture. I've never had that happen yet, but the possibility is always there. I never know when it's going to happen again.

I've had four episodes since 1998. The first time it happened, my daughter was only a few months old. I had a terrible cold. A coughing fit sent me to the bathroom to vomit, and when it was over, I couldn't see out of my left eye. I was terrified! I went straight to the ER, and the doctor there sent me to Milwaukee to the eye institute to see a retina specialist. Being a rare disorder, this specialist had no idea what was wrong. He sent me for a number of tests with my regular doctor thinking there had to be some underlying medical issue. I had blood work, a mammogram, a vaginal exam, and a number of other tests. Everything came back negative, and I had no answers. The bleeding eventually stopped, and I was left with a blind spot in my vision.

It happened a second time a year or so later in the same eye. This time I was sent to a different specialist in Green Bay. This doctor didn't know what was going on either, but he informed me that the calcium deposits were in the other eye as well. After the bleeding stopped this time, I was left with very little vision in my left eye.

It's happened a couple of times in my right eye as well since then. The last time it happened, I went to a specialist in Sheboygan, who finally diagnosed me with Choroidal Osteoma. Nothing can be done, but it was great to finally know what I have and to know what to expect.

It's amazing how the human body and mind adapt. At first, I was devastated. I couldn't imagine how I was going to function with such limited eyesight. I was scared to death! But, as time went on, I learned how to function. Every day activities in my own home are a no- brainer now. I clean my house, cook my meals, and even watch TV just like I always did. It might take me a little longer now, but I can do it. My computer is adapted to enlarge everything on the screen, and I have voice activated programs that help me with what I can't see.

There's only a couple of things that I really miss doing that just aren't an option anymore. I really miss driving. I have to have someone take me everywhere I need to go. It's hard to be independent when you have to rely on someone else to haul you around everywhere. The second thing I miss is reading a book. I used to love to read. Stephen King is my favorite author. But, I've started listening to audio books. It's not quite the same, but better than nothing.

So, there you have it. I live my life as normally as possible, and pray it doesn't get worse. I'm thankful for the sight that I do have. I know it could be much, much worse.