Wednesday, November 29, 2006

Drive Carefully,....Please

A fellow deaf-blind person from New Jersey was hit by an inattentive driver last week. He died on impact. My condolences go out to his family. He was 42. He was just trying to cross a busy street (across from his home) to patronize a pizza place on his birthday. I did not know him well. He was on one of the mailing lists for the deaf-blind. We had something in common.

Many times have I heard complaints that some drivers do not pay attention. They are just in a hurry to get to where they want to go. They seem to look out for other vehicles more than they watch for pedestrians. This takes me back to the "Me First!" post I made.

I have had reports from others that they would be ready to cross the street with their canes and then a driver zooms by right in front of them, sometimes breaking the cane. That's how close a car is. Sometimes canes have to be replaced two or three times a year, because of a near miss with a car.

How many senseless accidents does it take? Your child or relative or co-worker could be the next victim.

We need stronger advocacy on this. Many times I see drivers trying to beat that yellow light before it turns red. Don't they stop to think that maybe someone is going to cross the street at any given moment? (Do you remember "Starman'? He said that the yellow light meant "go very fast.") And personally, I think that the "right turn on red" is dangerous. Drivers look for a chance to turn if the coast is clear of another car, not a pedestrian.

I don't even know if it would do any good. There will always be accidents. Someone gets killed. Then the world moves on, never learning, and more people get killed.

This is so senseless. Many accidents can be avoided.

People say that they don't want to repeat history. But they do anyway. I guess they all just have to learn the hard way.

Maybe stricter laws need to be passed. More consequences. It seems like some just get a slap on the wrist.

It reinforces my decision to quit driving. It's too dangerous. I didn't want to take any more chances.

How about you? Drive safely. Watch for pedestrians.

Monday, November 27, 2006

Taxed to the Max

Where does it end?

Maybe I will be in good company after all.

Our governor, recently re-elected, plans to dig deeper into Wisconsin taxpayers pockets. We did not create the red tape. Everyone has to live within their means, why can't the government?

Now, in order to keep the privileges of driving (the registration fee will be increased by over 45 percent), Wisconsin residents will have to fork over more of their already shrinking take-home pay. Registration fees will come to $80. Truck registration will be increased by about 60 percent. That's just over $110.

Driver's license renewals-about a 40 percent increase-will be $34.

And don't forget gas prices. They are still over $2 a gallon. We already are a highly taxed state. Our gas prices are higher than our neighboring states, because we have a higher gas tax to pay for road and highway construction and its "facelifts."

Again, maybe more people will not be able to afford to keep a vehicle. More people will be riding city buses and other alternative transportation. Either that or they will be scraping to make ends meet.

I am already taxed out. I still have to pay property taxes and that includes paying for the public schools. I send my kids to a parochial school and pay tuition, yet I still have to pay taxes for the public schools' maintenance and teacher's salaries and their health insurance. Go figure.

I feel bad for today's children. With the way health insurance premiums are sky-rocketing to an all-time high, will our children be taking home forty percent of their paychecks after taxes and health insurance premiums are deducted? I hope not.

Sunday, November 26, 2006

Limited Freedom

I remember getting my driver's license for the first time and my first car.
I got a job and had spending money.

I was on my way to Independence.

I hung out with other deaf or hard-of-hearing friends. We went to Deaf Clubs in the area. We had a good time. Sometimes I was the driver. There weren't many who had their own cars. Some couldn't afford it.

I lost touch with a lot of them. They moved. They got married and started families. I hardly talk to any deaf or hard-of-hearing people except for my brother and sister and online deaf-blind friends.

I was always punctual for work and appointments (unless I misunderstood the time or showed up on the wrong day) or it just temporarily slipped my mind. Yes, that was embarrassing. I always write down the appointments on the calendar. I don't trust myself to remember them.

I voluntarily and reluctantly gave up driving earlier this summer. It was hard to give up my independence. I got depressed. It wasn't too bad during the summer. I could walk to places. Then school started. I thought about dropping school. I didn't want to worry about transportation. I didn't want to depend on anyone. It sucked.

But I started using the taxi. It got easier. Only slightly. It still sucked. I felt like I wasn't being a responsible person. I couldn't drop off the kids to school or pick them up from school anymore. That was my job as a parent.

Anyway, I was so used to being punctual about getting to work. I used to arrive at work about 20-30 minutes early. That gave me some leeway in case there was slower traffic in my way.

When I started riding with several co-workers, I was lucky that they liked to get to work at least 20 minutes early . (This was when it got too dark to drive in the mornings.) I didn't have to panic or wait too long.

I have to wait for a taxi. Sometimes they are not as punctual. They have other people to pick up/drop off. I would have made an appointment one day early and they would still be late. I hate waiting around. I miss taking off and getting there myself. Or hopping into the car as soon as I am done with work or classes. This really sucks.

At the end of the first day of externship "work," the taxi was there at 5:00 sharp. Great. Then the next two days after externship-it was about 5:20 p.m. before the taxi showed up. I was upset. I don't like waiting. If I had called them (or someone else had called them for me) at quitting time, I would understand. First come, first serve. (Or in this case, first call, first serve.) I am a patient person and for the most part, I don't go around giving a taxi driver a hard time about being late. By the time the driver shows up, I am relieved and all thoughts of anger and impatience is gone.

It really is a huge bummer to depend on others to drive for me. I used to drive my mom to the stores. She never had a driver's license. My dad drove her around. Or it was one of us kids. It was hard to call her and tell her that I couldn't drive her to the store or take her to an appointment anymore. She knew this was coming, but not as soon. She has to rely on others now. Not only do I feel like I am shirking my duties as a parent to drive my kids around, but as a daughter, too.

I hate being a burden to my husband. He sold the other car. Auto insurance premiums have dropped slightly. So, it is easier on the wallet. (That is, until my oldest becomes 16-four years away.)

I will be glad when spring rolls around and it gets warmer out. Then I can do some serious walking-my last form of independence.

I have been doing a lot of pride swallowing and self-pitying these past few months. I still have "pity party" moments. Sometimes I snap out of them and push negative thoughts into a corner of my mind, ignoring them. I try to stay positive. At least I don't have a life-threatening disease. I may be able to retain central vision for a long time. Maybe this is God's way of keeping me humble and close to Him.

I try to keep these quotes in mind:

"Not everything that is faced can be changed, but nothing can be changed until it is faced."-James Baldwin

"The longer we dwell on our misfortunes, the greater is their power to harm us."-Voltaire

Friday, November 24, 2006


I never thought about how blind people dream, but I came upon this topic one day.

A blind person who could see at one time can dream in color. They can see loved ones in their dreams. They see their faces.

But, if they met someone after becoming blind, they will see this person as a dark silhouette in their dreams. There’s no picture in the memory bank of what the person looks like. He or she has never seen this person's face before.

I think that makes sense.

When I dream, I can see 100%. I have the vision I had before my peripheral vision started to deteriorate. Another thing about my dreams-it almost always takes place in my childhood home by the lake or my gramma's white house. I haven't dreamed dreams in any of the other places I have lived in.

I think that it's a pretty common thing-to dream about something that takes place in our childhood home. But, I lived there all my life until I was in my early twenties. My parents didn't move around.

I don't know what dreams are like for children who do move around a lot. Maybe a child had a father who had a military career that involved a lot of uprooting? How about foster care? How about those who moved when they were about 8-11? Did they dream something about both homes? The one in the first half of their childhood and the other home in the second half? Or is it always just one home? This would be interesting to find out.

Wednesday, November 22, 2006

Old Habits Die Hard

I have heard from others who have become blind.

They developed habits while they still had vision.

They would read Braille, but move their eyes across the direction of their fingers as if they were really reading it. Why? They can’t read what’s on the page. They have been conditioned to it. It’s a just a habit. They’ve done it while they could still see.

Or if they are stuck on a word they are “reading,” they would squint at it and “look” closer at the word as if it would help them figure out the answer better.

There are so many things sighted people do in their lifetimes that when someone becomes blind, old habits die hard.

They are still “visual.”

If I come across more examples of "visual" blind activity, I will be sure to post them.

Tuesday, November 21, 2006

Testing: 1, 2, 3

I don’t know why, but every once in a while I play a “now I see it, now I don’t” sort of mind game. (Does anyone remember the old slogan for Almond Joy and Mounds? Of course, the “you” pronoun was used instead) I would look at an object on the table, counter, or anything else and try to see how much I can and can’t see. I would stretch out my hand in front of me (the kind that a street cop would use to direct traffic by putting up a hand gesture that means “stop”) and move it in and out of my line of vision. “Now I see it, now I don’t.” It’s pathetic, isn’t it? The hardest part is keeping my eyes from following the direction of my hand. It can be depressing to see how much I lost in the last few years.

I tell myself to enjoy what I can see and keep a photo album in my memory bank so I don’t forget important details.

-My children’s sparking eyes, smiling, excited faces on Christmas morning or any other day they are just happy

-My husband’s dimples

-The splendor of autumn

-The glistening snow blanketing the yard, iclcles forming on tree branches and rooftops

-Fireworks on the Fourth of July

-The man on the moon

-Christmas decorations and stringed lights outlining houses, doors, and windows

-A giggling baby

-Iridescent rainbows

-A beautiful sunrise/sunset

-The various shades of blue, pink, and purple

The list goes on and on.

I don’t ever want to take these sights for granted. I can get so busy with homework, housework, the kids, blogging, and whatnot that I forget to appreciate what goes on around me. I need to remember to be thankful for the sight I do have. I am such a visual person. It’s so easy to get busy. Especially in this day and age where no matter how much technology makes things easier and speedier to do things, we still try to pack in “25” hours in a day. Time is money. Fast is just not fast enough.

Again and again, stop. Take a deep breath. Enjoy all the blessings you have. A healthy family. A roof over your head. Food to eat. Clothes to keep you warm or cool (for those of you in warmer climates). Warm hearts. Pleasant company. Enjoyable music. Good friends. Thank God for your blessings.

I can still see. I can still hear. Yes, they are limited, but I need to remember to enjoy it. I am healthy. Why test it?

Monday, November 20, 2006

Keeping Hope Alive

There are so many press releases that come out, such as mice getting its eyesight back or something. It's sad that they don't wait to prove that it works. They come out with these press releases that show promising results. Then a reputable journalist will write how they "claim" to cure eyesight for mice.

Here is one on photoswitches.

I just wish they wouldn't blow the whistle before they can prove it consistently works in humans. Mice may have a different results (anatomically) compared to humans.

It's great that researchers are working so hard to find a cure for degenerative diseases, such as RP or MD (macular degeneration). I hope they come up with a great medical breakthrough.

There are so many clinical trials, such as one for artifical retinas.

This is someone else's best opinion:

-The retinal chip could be in clinical usage within 3-10 years.
-The neuroprotection-within 3-8 years
-Retinal cell transplant-within 8-15 years
-The cortical chip-within 8-12 years
-Gene therapy-within 8-20 years
-Stem cell transplant-within 10-20 years

There are so many "claims" that are coming out that I don't know whether or not to keep holding on to hope. It's almost cruel. Why not just let us prepare for blindness than to have hopes get high all the time?

When I was in my twenties and early thirties, I was constantly pushing thoughts of "going blind" in a dark corner of my mind, hanging on to hope that there will be a cure. But, with each passing year that goes by and more of my vision closes in, I wonder if it's fruitless. Where am I headed?

Should I prepare for it? Should I "give in" and accept my prognosis? Should I apply at Hadley's and learn Braille? I love to read and I would hate to give that up. I read somewhere that there's a high percentage of illiterate blind people. I don't want to be a part of that statistic.

I have had the greatest opportunity to meet some people online that are totally blind and deaf-some with CIs (cochlear implants). They amaze me. They function and can do anything they put their minds to. Many are working profesionals. They are psychologists, teachers, social workers, vocational rehabilitation counselors for the deaf and/or blind, lawyers, the list goes on. I am astounded that they wouldn't let "small" disablities get in their way. If they have a dream, they persue it.

Again, I am stuck in the middle. I guess I will choose to hang on to hope, but prepare myself for it, too. I'm not happy about it, but when life gives you lemons, make lemonade. (Easier said than done.)

Tuesday, November 14, 2006

One Day at a Time

Is it just me or did time always go this fast?

As a child, I remember how I couldn’t wait for summer or Christmas or my next birthday. It seemed like it took forever for that certain day to come.

I couldn’t wait to turn 16.

I couldn’t wait to graduate or reach the drinking age (I had to be 19 in order to drink legally then.) It was a grandfather clause. Wisconsin’s drinking age was 18 and they changed it to 21, but I got the phase-out period called “grandfather clause.” I didn’t like having to wait another year, but that’s life.

Then I started working. I couldn’t wait for Friday afternoons, especially paydays. (I got paid every other Friday.)

With both my pregnancies, I couldn’t wait for the last three months to fly. Of course, with my oldest, I only carried her 8 months.

Birthdays, Christmases, and other important days seemed to fly by.

Now it seems like each semester in school seems to whiz by. I am fast approaching the end of the semester again (four more weeks to go). It just seems like every semester speeds by faster than the last.

At this rate I am going to be old.

When my daughter tells me, “I can’t wait...” I tell her not to do that. It makes me older. I tried telling her, “Enjoy being a child. Take your time. You’ll be grown up soon enough. Then you will wish you were a child again. You may not like the rules, but it sure beats paying bills all the time. This is why you have chores and need to listen to mom and dad. It teaches you to become responsible adults and productive citizens.” Of course, this will just go in one ear and out the other.

I don’t know if I would want to be young again. I wouldn’t have the experience and knowledge I do have now.

I try not to worry about what tomorrow brings. I try to tell myself to let God handle it for me. (Easier said than done.)

Here’s some food for thought. Watch this time movie.

Besides my other blog, The Daily Three, I like to view this clip and remind myself to enjoy each day. Life’s not a rehearsal. You don’t get another chance to start over “Groundhog Day” style.

Remember to enjoy each and every day.

Friday, November 10, 2006

Parenting Challenges

I tried googling deaf-blind parenting. I got a lot of hits on how to help parents with deaf-blind children. Other hits were about what schools there are for deaf-blind children or what accommodations there are for schooling. There is nothing really out there about a deaf-blind parent wanting find some help with hearing-sighted children. I turn to one of the Usher Syndrome online mailing lists for advice and ideas.

If you are a parent or if you know kids well, then you know they rebel and try to get away with murder. They all do. They push buttons, they whine… short, they can be a handful. Of course, the joys of parenting outweigh the "bad" parts.

I have a friend who has some CP (cerebral palsy) and is hearing-impaired. She’s awesome. I actually forget about her condition. I see her as a person, not someone with disabilities. (I wish I could say the same of some people regarding my disabilities. I am still a normal person, I can function like a normal person. I get by. So I don't hear or see 100%. I would like it if people don't focus on that as who I am. That's a small part of me. I feel like they think I am an accident waiting to happen.) I admit that her disabilties are in the back of my mind, but she's so CAPABLE. I have no doubt that she can do whatever she can if she puts her mind to it. She has had quite a few struggles in her life. She has a son and she does what she can. She is pretty normal to me. She’s an inspiration. If she can do it, so can I.

Parenting is hard enough, but when you add any kind of disability or two, then it is that much more challenging to raise children.

My youngest can try to take advantage of the fact that I don’t hear or see that well and do things that she knows she shouldn’t be doing. When she gets caught, she’s sorry. The consequences are more serious for trying to take advantage of my condition than the act itself. (More privileges taken away.) It's the same as lying about something. A parent is more upset about a child lying about something he or she did/did not do or an "omission" of some sort that the actual deed.

Once again, my oldest wants to be a part of something at school that requires time staying after school. It’s already getting darker by the minute. She is interested in joining the Junior Dance Team. (This is really a high school team, but they encourage children in 6th-8th grades to join if they want.) They dance during half-time at basketball games. I am not against it. In fact, I want to encourage her. I really think it’s important to join a team. I have read that children who join extracurricular activities are well-adjusted and do better academically; however, I don’t know how credible this is when you consider the fact that there are “dumb jocks.”

My problem is finding rides for her. How can I be sure they are dependable? I would like to be able to do this myself. It makes me feel less like a parent. I don’t want her to look back on her school years with empty regret for not being able to join extracurricular activities because of me.

There’s supposed to be a meeting for parents next week during the evening hours. Hopefully I can contact the coach and see if she can just send me the information. I guess I will have to arrange for her rides once she joins. Maybe another classmate's parent can do this. Time will tell.

Thursday, November 09, 2006

Keep Your Eyes Open

I had to go to the clinic the other day. As I sat in the waiting room, three people in wheelchairs were brought in. I never saw this happen simultaneously like this before. Three! Once again, I got to thinking how obvious their disability was. They were in a wheelchair. My disabilities are not that obvious until someone talks to me or knows me.

I wanted to keep a close watch on the door where the nurse comes out so I know when she calls my name. But someone was sitting in the direction of my gaze and I didn’t want her to think I was staring at her so I avoided looking over there. (As an afterthought, I guess I could have moved to another area of the waiting room.)

I got to thinking about how many people have “hidden” conditions. Maybe the person in front of you at the check-out lane has cancer or is bipolar. Maybe the jogger who passes your house every morning has restless leg syndrome or diabetes.

Sometimes it’s not so obvious. Keep your eyes open.

When I went to a clinic in another part of town, they had these vibrator things. It was like an oversized pager. I do recall something like this at a restuarant on a busy Saturday night about a year or two ago. When it's your turn, the nurse makes it go off instead of calling out your name. I wish this was implemented at all waiting rooms. In fact, it would be great if beauty salons had these. Or dentists. Or any place where you have to sit and wait to see someone.

Needless to say, I got “caught.” I saw a nurse standing by the doorway looking around. I missed it. When I made eye contact with her, I asked her if she called my name. She did. I apologized and commented. “I don’t hear that well.”

I could feel eyes looking at me as I walked to the nurse. I spoke clearly enough.

Take a look around you. You just never know.

Make eye contact with strangers and smile. It just might be what they needed to keep going. I try to spread a bit of sunshine by smiling at people. If they smile back, great; if they don’t, it’s not my problem.

Wednesday, November 08, 2006

Please Don't Change My World

I remember the old dark green two-door (the doors were very wide) ‘77 Olds Cutlass Supreme Brougham I used to own. It was my first car. (I found this picture on the web. It sure brought back memories. I don't know how long the URL will be good until it gets sold by the owner. For more views, click here.) It was a “boat.” My dad insisted that we (meaning all of us kids) were going to have a heavy car for “safer” winter driving. My sister named her car “Sherman’s Tank.” I don’t remember what I named my Cutlass. It had about 80,000 miles on it already. It had rear-wheel drive. The automatic shift was right by the steering wheel. When I bought my next car, it was the kind that had the automatic shift on the floor, in the same area a standard shift would be. It must have taken me about two weeks to get used to putting my hands on the shift between the bucket seats without grasping for “air” because the shift wasn’t on the steering wheel.

What is it with car manufacturers? Isn't the sales pitch, "Location, location, location!"? Different models have different places for the door handles. I like consistency. I want uniformity. I don’t like it when things are moved around. I may stumble or fumble a bit. The interior design of the dashboard have diverse placement of buttons that is used to turn on/off the rear defrost or air conditioner. I am sure those who buy newer cars every four years know what I am talking about. You want to turn on the heater, then you realize that it's in a different spot.

I rode in a taxi the other day and felt like I made a fool of myself because the door handle was not in the place I thought it was. It was not the same make as our car. The handle was farther away than ours was. It was “fun” to fumble around and have one of those “blonde” moments.

I don’t think that this is really a “blind” thing. I didn’t even look at the door. I handed the driver the fare and just automatically put my hand on the door, only to find out that the handle was in a different place.

People can get disoriented and have to get used to changes (like when furniture is rearranged in the living room or bedroom). You make a trip in the middle of the night to use the bathroom and bang into an end table, because you forgot it was moved.

When I was in my twenties, I liked to move furniture around. I got bored having the furniture in the same place longer than three months. Now I don’t really like to have it moved. I am glad that my husband doesn't want it moved often. I know that it’s much better for the carpet, though.

But I guess when you are visually challenged, you want things to be standard. You want it to be the same. It’s just a "comfort" thing.

Monday, November 06, 2006

What If?

Don't you ever think about all the "what if" scenarios? Today I was thinking (more like daydreaming) about winning the lottery. (Well, it doesn't hurt, does it?) When the stakes get high, I do admit to thinking about what would I do with that money.

Many people would say that they would want to pay off bills, make sure their family is set financially. buy new cars, houses, go back to school, travel...the list goes on and on.

What would I do if I won the lottery? I would donate some of it to a reputable research center (such as Foundation Fighting Blindness-see link on the right) for retinal diseases, namely, Usher Syndrome or RP. I would want to pay off the house and find/build a house both my husband and I can agree on. I would also want to travel and see the world. I would love to take the family on a nice, long summer vacation to see everything. I would want to visit Ireland/Scotland, France (Paris), Italy, Hawaii, Florida (Disney World), etc. I would love to be able to drink in as much of the sights I can while I still have good vision.

Oh, and one more thing, I would get maid service. (What mother wishes this?)

Sunday, November 05, 2006

Stuck in the Middle

I can’t win. It’s not enough that I have to deal with night blindness (nyctalopia). I also have light sensitivity (photophobia). I either have to adjust to darkness or adjust to the light. I could step outside in bright daylight and experience a temporary whiteout. It hurts a little when the light pierces my eyes. After a while, I learned to put on sunglasses before I went outside. Like adjusting a moment or two to the darkness, it takes me a moment or two to adjust to the brightness. There are special sunglasses (Corning, NoIR) that people like me can buy. I do not wear prescription glasses. I can read the newspaper without glasses. Most, if not all, of these sunglasses are the kind that can be worn over regular glasses or have a special tint that is put on presecription glasses. I have yet to find a pair of good anti-glare glasses that can be worn like regular sunglasses. In the meantime, I found a pair of amber glasses, which ironically, is made for nighttime driving. It is anti-glare. It works just great.

Glare affects me, too. When it’s wet from a recent rain, the roads and sidewalks are “darker” and if headlights or an outdoor light is reflecting on them (the road or sidewalk), it’s harder to see.

I love to walk. I have to walk under shady trees during my walk. It’s a constant dark to light, light to dark adjustment. The moment I get under a tree, I need to take my sunglasses off so I can see again and then when I get out of the shade, I have to put them back on again. Most of the time, I just kind of lift the glasses up when I walk under a tree or a shadow until I get back into the light.

Even some indoor lighting can affect me. It just depends on the kind of fluorescent lighting that is used.

I like cloudy days best. It’s not to bright and not too dark. It seems like it’s the story of my life again. Always in-between…I feel like I don’t belong in either the deaf or hearing world, just in-between. (I can say that I am more hearing cultured, though.) Now I prefer an in-between world; one that is not too dark or bright. I guess I will always be a little bit in the “gray” area.

Friday, November 03, 2006

Let There Be Light

This has been another pet peeve of mine. I hate it when it’s dark and noisy in restaurants, bowling alleys, and bars. For someone with Usher Syndrome with some hearing, it is difficult to understand anything-all I hear is other people’s voices or if there’s music, then that is all I can hear-the music. On top of all that, it's dimly-lit. I can’t see or hear that well.

I understand that these establishments' owners think that this is the norm or it’s just “romantic.” I can’t see well or keep a conversation going. I am totally useless. I am a total dud-a bore. It’s hard to enjoy myself in crowded places. My husband has had to drag me out of the building just to talk to me several times. Sometimes I wonder why he puts up with me. He could have decided that I was “high maintenance” and not get involved with me. But he did. You got to give him some credit for that. It takes a lot of patience to repeat things all the time. He’s no saint. He gets frustrated. But it takes two to tango. He's not perfect, either. He can exasperate me, too.

I don’t really understand what the purpose of dimming the lights is. Don’t patrons want to see their food? Is it poor service that they don't want people to notice? Or is it that one doesn’t have to stare at their date’s nose that happens to have a huge zit on it? Is it worth it to hide facial flaws? That in bright daylight, a person is so plain-looking, it’s better to see her in the dark? How romantic is that?

I would just rather have my husband order some food and pick it up than to go into a dark restaurant and call attention to myself-well, it's more like I don't want to be in a situation where I feel left out. Even if I were in the company of another person who knew sign language, I wouldn’t be any good conversing in the dark if I couldn't see the signs that well. I need to learn how to use tactile. Maybe then I wouldn't be so frustrated, left-out, lost, or just plain boring to others even if they do understand.

Why not just turn the lights on, please?

Thursday, November 02, 2006

Lil’ Miracle

My oldest daughter was born almost a month early. She was born on a nice Saturday morning in August. She decided it was time to make her entrance to the world, because she needed help. A condition called congenital diaphragmatic hernia could have threatened her life. The pediatrician who was on call that day noticed that her heartbeat was weak in the area where the heart should be, but stronger a few inches more to the right. He got an x-ray of her chest. It showed that her bowels were pushed into her chest through a hole in the diaphragm. This caused her heart to be shifted and her lungs to be squashed.

She was flown via helicopter (Flight for Life) to Children’s Hospital of Milwaukee. There were four paramedics preparing her for her flight. I was just numb.

She had surgery the following Monday, two days after her birth. The surgeon cut across her chest, along the ribcage to put the bowels back in place. She put it in backwards and took out the appendix. This was because if she ever developed appendicitis, it would be on the wrong side and unless I had the appropriate medical proof that it was on the wrong side, the doctor would rule out appendicitis because of the location.

She was in PICU (pediatric intensive care unit) for about two or three weeks. She had all kinds of tubes and needles sticking into her tiny hands and feet. She had a paracentesis on the side of her chest to drain fluids out of her chest cavity.

She was moved to NICU (neonatal intensive care unit) for the last six or seven weeks of her hospital stay. Her lungs needed some time to fill up the space that was crowded when she was born. She was able to breathe on her own.

I was able to hold her then. It was a little tricky. I worried about pulling out the tubes by accident.

When we were able to take her home, she quickly caught up to her peers. She was never really behind. She didn’t roll over or sit up at the age most babies did, but she made up for lost time. She walked at 9 months. She had a slight murmur, but doctors believed that it would correct itself when she grew older. The last time it was checked, the murmur could only be detected in the supine (lying down on the back) position.

She is truly a miracle. Most babies born with this condition have more problems. Some don’t make it or they don’t breathe on their own as quickly as she did.

People were sending prayers throughout her stay in the hospital. Never underestimate the power of prayer.

My ex-brother-in-law and his wife went to a wedding one day and somehow they got to talking about babies and hospitals. The person they were talking to was a paramedic. He remembers this case. He didn’t think that my baby was going to make it. (When they told me about this, I got chills going up and down my spine.) I think she surprised everyone. To this day, she’s a normal 12 year old. All that’s left is a surgical scar across her abdomen. It’s her badge and she’s not ashamed of it. She wears two-piece swimsuits proudly.

She’s had quite a journey, even if she doesn't really remember it. She’s my miracle.

Wednesday, November 01, 2006

Being in the Spotlight

This writer* probably didn't mean any harm. It's some kind of "roast" aimed at any super-rich person. How many of us think about how the wealthy act and how they spend their money. Whether they get caught drinking and driving (i.e., Mel Gibson) or flash some skin accidently (i.e., Janet Jackson), it's big news with the media, and they love to point fingers at the rich and famous. I don't really envy them at all. Who wants to be in the spotlight and have his or her personal life displayed on the front page or in some sleazy tabloid? Everyone wants his or her privacy.

Even I can see the humor or irony of Steve Wynn's accident. I can see this writer's point of view. It's just too bad that we have to use "material" like this as a joke.

If you know or witness someone bumping into things, knocking a glass of milk or something, make it a point to see if this happens a lot (and not alcohol-related). It may be just a simple matter of getting prescription glasses, but he or she should get his or her eyes checked. If it's not a problem with the eyes, it may be neurological, muscular, or something...just the same, it should be checked.

*Footnote: Obviously, the writer's URL couldn't be found. He must have deleted this particular post. He did offer an apology dated Nov. 1, "I apologize for yesterday's remarks on Mr. Wynn. I intended no offense to anyone afflicted with retinitis pigmentosa. I was only poking fun at a billionaire as a billionaire - with all the obscene immunity from financial catastrophe which that implies - not as a visually impaired person." I will not print his name here. I guess he knew he got in over his head. Again, I can see his point of view. Many jokes were aimed at the rich and famous just because they were rich and famous.