The Basement

Well, I am exhausted. Every muscle in my body hurts. No, I did not run a marathon, I am attempting to clean out our basement.

Hubby got me going, he started it and was doing well. He had a box for everthing so when I went down, I knew where to put the stuff. Then it came time to haul out the bags of garbage, move the boxes marked for rummage sale and put the storage boxes where they are supposed to go. You would think that would be it, but it isn't. We still have to mark the stuff for the rummage sale and then have the stinkin thing. We still have three boxes of toys to go through and we still do not have enough room for it all. I really want to stuff it all in the van and drop it off at Goodwill.

I think we will have it done by the time the kids graduate highschool. I hope I have enough energy to make it to the graduation ceremony.

What's New?

It has been an unusual summer so far, different from summers past (hence the word unusual).

!. We went on a vacation for a whole week.

2. I went to convention without a family member.

4. My daughter was gone for over two weeks.

5. Apparently I forgot how to count.

6. My son is able to feed himself and occupy himself for more than ten minutes at a time.

7. We are getting rid of a couple of monthly payments rather than adding a monthly payment (not much but every bit adds up.)

8. A lot of people I know are sick or going through some tough times.

9. We organized a closet and got some storage units for it and it is actually working out better than we expected.

10.The kids are seeing their cousins and grandparents more often (except for the ones that actually live in the same city as us...we are working on it!!!)

My friend and I are scheduled to leave on Thursday at 9:00 for a flight which will take us to Minneapolis and then to Kansas City for the FFB (Foundation for Fighting Blindness) convention. The day before, I get a call from the airline, a recorded message, saying our flight had been cancelled and we were rescheduled on a flight early Friday morning. I called my friend, who is also sight impaired, to see if she wanted to take the Friday flight but we would just barely make the first session. We decided to call the airline to see if there was another flight on Thursday we could take because we really want to get there before the convention starts.

I call and the guy I talk to says he has an earlier flight at 6:40 on Thursday we could take so I grab it even though it meant getting up at four a.m.

We make our flight, get to Minneapolis and get on a flight to KC. About 20 minutes before we are about to land, I take out my conference booklet and the woman sitting next to me asks if I have RP. I say I do and so does my friend. She says she does too and is in a clinical trial where she received an implant in one eye (and sutures in the other so she does not know which eye has the implant). She goes on to say that earlier studies have shown the implants have stopped the progression of the disease and in a SMALL number of cases, vision has improved.

I ask if this is proven successful, when could the rest of us receive this implant and she says it COULD be as early as 2009!!!!

I almost started to cry. For the past 13 years I have been going to these conferences and hearing about the animal studies and to now be in the human trials is a HUGE step forward. We will have to wait and see how these studies go, obviously, but at least it is hope and gives us something to hold on to.

I never would have met her had we been on our original flight because she went to different sessions than I did (Since I have the Ushers form of RP, I went to all the Usher sessions). So, a cancelled flight is not always a bad thing.

Overheard at the convention

I am back from my trip to KC for the Foundation for Fighting Blindness convention. THere is a lot of progress being made which I will talk about later.

While I was there, I went to a networking session where we all sit in a circle and talk about our condition and experiences. There are two sisters who always come and they are a riot. One sister said "We did not get our hearing aids until we were in high school, I don't know why..." and then the other sister said, "That was because when I was six years old, I flushed mine down the toilet, remember?"

Funny....our dog Rush ate one of mine!

RP Convention

Next week I am heading to Kansas City to attend a conference for the Foundation For Fighting Blindness. It starts on Thurs. and ends on Sun. I will be going with another woman who also has RP but who has never gone to a convention before.

The first time I went to a convention, it was 1994 in San Francisco. It really opened a whole new world for me. For years, I had been told by doctors not to go to college because I will notbe able to work, don't have kids, etc. Very hard stuff to take as a 20 year old.

But, I went to college and got a degree and was working full time and had gotten married. Now at age 28, we were talking about kids but I wanted to go to this convention first.

I was so surprised....it seemed like most people who had RP, had families, had jobs, and lived their lives. The conference had sessions where I could learn more about my specific eye disease (Ushers type 2) which also includes a hearing loss. The best part of the conference is the networking session where you get to gether with other people who have the same condition as yourself. I have gone to two more conferences and that is always the best part. We are a feisty bunch!

While in San Francisco, my husband and I stayed a few extra days for sight seeing. We went to Alcatraz and met a guy who actually stayed there and had writtan a book which I purchased. We also went to see 'The Phantom of the Opera" and took a wrong turn walking back to our hotel and met some very interesting characters.

Another thing I remember is seeing homeless people for the first time. We were sitting in a restaurant and a guy off the street came in and took food from a table where people had eaten and left.


There was one good thing that came out of this trip, nine months later our first child was born.

Not tagged by Dr. John

I have not been tagged by Dr. John.

Five songs I know all the lyrics to:
1. Twinkle Twinkle little star
2. On top of spaghetti
3. B-I-N-G-O (I had a dog....)
4. Away in the Manger
5. The Rose

Five things I will not wear again
1. My wedding dress
2. My swimsuit (I really need a new one)
3. My jeans from high school which for some reason I hang on to.
4. A raincoat I had since I was in high school and I hope my daughter can wear it
5. About three bridesmaids dresses which are in the dress up box along with the matching shoes and a prom dress.

Five things I like to eat
1. french fries
2. mini Reese peanut butter cups
3. m&m's
4. those ice cream cones that come from the freezer that have the nuts on top and the chocolate in the bottom
5. plain cheesecake

Five bad habits
1. eating too much junk food and not enough healthy food
2. being either too lazy or working too hard, there is no in-between
3. holding a grudge too long, but I am getting better
4. being cheap
5. not washing the bed sheets often enough

Five things I would do if I had a million dollars
1. Pay off our mortgage
2. Give a percentage to my mom, brother, in-laws
3. Pay off the capital fund at our church
4. Become anonymous donors and surprise people with unexpected gifts
5. College fund for the kids and our retirement

Five things I like to do
1. watch tv
2. talk to my husband about his day
3. play a game with the kids
4. take baths
5 Pet the dog

Five toys
1. my paints
2. books
3. tv
4. mp3 player
5. computer

Memory

Today is my daughter's birthday....she is twelve and having a slumber party with two of her friends. We will have pizza and cake. I am retelling my favorite memory of the day she was born.

It was just after midnight and I was restless. For the first time in our marriage, my husband was in bed before me (he had attended a paint ball session during the day and was exhausted not to mention covered in red craters all over his body from where he was hit).

I got out of bed, grabbed a book and sat down the couch to read. Two seconds later I felt a gush of water...the dog looked at me like shouldn't be in the bathroom or at least outside doing that? I called the doctor's office, explained what happened and it was five weeks too early for this to be happening. The doctor tells me to go in.

I stand at the bedroom door and call to my sound asleep husband several times before he wakes up. I tell him what happened and we have to go. I say to him that I will get there and they will for sure send me home because it is too early. Later he tells me in his mind he is thinking about the baby arriving too early and there are all sorts of machines and tubes, he expects the worst.

We get there and I go through eight hours of hard labor (intense contractions every two minutes, sometimes each one lasting that long, and finally the baby arrives..."It's a girl!" says my husband. We are so happy.

Then we go through the whole day of visitors, phone calls and check ups...the baby is fine. Finally, around eleven at night, we are alone. I am feeding her and thinking "How am I going to be able to take care of this baby with my hearing and sight impairment?" I look down at her wishing she would open her eyes because I had not seen them yet. Right at that moment, one eye opened up and peeked up at me. The eye looked me over good and then closed again as if to say, "Everything is going to be alright, mom" I felt a sense of peace and we both fell asleep.

Happy Birthday, Bree. I love you.

My daughter grew a nose!

My daughter and I play this game where we measure how tall she is by having her stand in front of me while I place my hand on top of her head to see how tall she is on my body. First she came up to my thighs, then my waist and so on. The last time we measured the top of her head came to just below my nose.

Yesterday we decided to measure after a few months of not doing it and now she is up to my eyebrows. Instead of saying she grew about three inches, we say she grew a whole nose!

Then Luke had to be measured and the dog, feeling left out, also jumped up on me and they are both about the same. I guess not everybody can grow a nose.

Comment of the Day

Yesterday I was watering my one barrel of flowers and my six year old son noticed there were a lot of bees around. He said, "Thanks for sharing your flowers with the bees, mom."

I had never thought of it that way.

People I Met

While we were on our "Vacation of a Lifetime" I met some wonderful people. First, at the airport checking our bags the guy notices my cane and says to me., "You know, my son works at the Disney theme parks and he said they are more than willing to let people in your situation go to the front of the line so you do not have to wait. Really, take advantage of it. " (Didn't happen by the way, not once, although I did have a couple people open the gate for me or ask if I needed help getting on the ride).

Since most of the planes we were on had three seats per row, Pete sat with the kids and I would sit across the aisle with strangers. In the past I would have not said a word but I am getting rather chatty in my old age. The first time there is a retired woman sitting next to me and she is from Montana going to Florida to stay with her boyfriend. He cannot come to her because he has a job which does not have retirement benefits. I resist the urge to warn about someone may be using her for her money but she is not sitting in first class so I keep quiet and wish her luck.

On another flight, I sit next to a retired couple who are from Upper Michigan but have lived in Orlando for 20 years. They are are going back to Michigan for a family reunion. I say I am from Green Bay and the guy says he worked as an electrician on the Packer Hall of Fame some 40 years ago.

Then on the short flight from Detroit to Green Bay I sit next to a stewardess who works three days a week. She works the Detroit to Tokyo flight, leaves on Monday and comes back on Wed. She is a single mom with two daughters and the older one is calling her on her cell phone every ten minutes because she wants a blackberry. The mom wants a new couch and she is getting a new couch! (The daughter has a job so she can buy her own blackberry).

Then there was the waitress at the IHOP next to our hotel and she was from Michigan as well. She knew we were from the Midwest because we did not talk with an accent. The guy I met at Discovery Cove (who goes every year with his family) was also from Michigan. He is one of those guys with the booming voices which would be great for radio. He mentions the Packers and I ask if he is a football fan and he is "big time" so we talk shop for a few minutes. (Every time I try to impress a guy with my football knowledge it turns out he is not a sports nut so now I ask).

I am starting to think we never went to Florida but ended up in Michigan!

Two Days Left

Since we did all the parks, we had two days where we could do whatever we wanted...or should I say what the kids wanted and that was spend all day in the pool. The cheap hotel with the so called "continental breakfast' did have one good thing - a junior sized olympic pool! Since it was Monday and Tuesday, we were the only people in the pool so it was great. My son finally got off the stairs and off his father to realize the vest he had on would allow him to swim without sinking.

We would swim in the morning, got eat lunch somewhere and check out a few shops, back to swimming in the afternoon before getting a late dinner and off to bed. We did visit Ripley's Believe it or Not Odditorium one day which was fun. My daughter is a big fan and now my son is a fan. Since we have been home, he and I have made a couple of our own books which include " a tomato who talks on the telephone - Believe it or Not!" or "Wow, a flying noodle!" My personal favorite is "a banana who likes to go swimming".

The flight home went fairly smooth but we had a rather long layover in Detroit which was even longer with a delay. We had a great time but we are glad to be home. Next, I will blog about some of the people we met during out trip.

Vacation Discovery Cove

It is finally here, the day I have been waiting for all my life....well since I found out they had dolphin encounters. I wake up at four a.m.! I try to go back to sleep but cannot so get up to take a bath which helps. Finally we are all set to go and wouldn't you know we get lost on they way! But, Pete gets us there in time and he and Luke go down the street to spend the day at Sea World. Bree and I go check in at Discovery Cove.

First, they give you a badge with a time on it that tells you when your encounter is...ours is at two o'clock. It is now nine. We head to pick up our wet-suit vests and snorkle with goggles and then to our locker. We already had our suits on so we put our stuff in the locker and I take the snorkle and goggles. We stop at the first "lagoon" where there are fish and stingray which you are allowed to swim with. I hear the lifeguard yell at a few people and decide I better ask what the rules are because if she yells at me, I will not understand her. She tells me the rules and I decided to go in even though the water is rather cool. My daughter wants to sit on the beach and watch me. I go in for about 20 minutes and decided to try to learn how to snorkle which I picked up on pretty quick. But, it is no fun withour my girl so I head out. We walk to the other lagoon which is beautiful...it has waterfalls and high cliffs surrounding it. I ask this lifeguard about the rules and if we are allowed to touch the fish. She says there are no fish in this pond! I rush to my daughter who was going to sit out this one as well and tell her there are no fish and she heads to the water before I can say another word. The water is so warm. She wants to try my goggles and snorkel so I let her and she picks up on it right away. I think I should go to the locker and get her set but we will come back after the dolphin encounter and I will get it then. We spend about two hours in the lake and head out to lunch. There is a guy getting ready to go in and he asks if we did the lazy river yet. We say "huh?" and he tells us all about the river that leaves this lake and goes around the park, through tunnels and waterfalls, through the bird sanctuary and brings you back to the lake. We say we are going to do that after our encounter and head to lunch where we have chicken strips, fries and cheesecake for dessert. We make a note to make sure to tell dad there was a triple layer chocolate cake there as well!

After lunch we stop at the gift store where I do not like any of the shirts. My daughter finds a stuffed dolphin and a necklace so we put those in our locker and head to the encounter. Ours is at the sand dollar cabana. There are eight people in our group. I told them I was hearing impaired so when we walked into the water, we stood shoulder to shoulder, I was in the middle and one of the trainers stood across from me, facing me. He slapped the water and our dolphin came and was right in front of the eight of us, between us and the trainer. We were all petting him as the trainer talked about him. His name is Akai and he is the alpha male of the group. We talked about the similarities between humans and dolphins and we are both mammals. The trainer asked what we have in common as mammals and someone said, "Giving birth" another said "breathing air" and I blurted out "Hair!"

"That is right!" said the trainer, "How did you know that?" I was about tell him I have been waiting to do this for 30 years along with the rest of my life story but just said I had known it for a long time. He said when dolphins are born, they have whiskers like cats and dogs. He then had Akai turn over and he has a belly button! Dolphins are also warm blooded.

The trainer taught us a few hand gestures, and we each got to feed Akai fish who had his mouth open the whole time for food even when he was on his back. (Reminded me of our dogs when we would rub their tummies and their mouths would be open with the tongues hanging out). Finally, we got our pictures taken and each one of us swam out about 30 yards and Akai brought us back to shore.

Then it was time to go....I walked out feeling satisified with the experience.

Bree and I went back to snorkeling and went down the lazy river which was a lot of fun. Soon it was time to leave and meet up with the boys. Another stop at the gift store and I decided to get large bath towels for myself and my mother. We also purchased two pictures from our dolphin encounter, one with the two of us hugging Akai and the other is Bree giving him a kiss. We wondered if the boys were going to want to leave since it was five o'clock but they had a great time at Sea World. My son talked about how he touched and fed stingrays, fed the dolphins and walked through and underwater tunnel filled with sharks (five times) and even went to see a Shamu show!

SInce it was Father's Day, Pete made reservations at a nice restaurant at the park where we could have steak and sit next to the shark tank. Afterwards, we went and saw all the places they had been. We all said it was the best day so far the only thing we wished was we could have shared it with the other two!

I thought the dolphin encounter was going to be the highlight of the day, but I think learning how to snorkel with Bree and the dinner with the family were even better.

This is the Vacation of a Lifetime!