Holiday wrap up

This bust of Giovanna Sposa is at my mother's house. She is always decked out for Christmas. 

It's been a wild week around here. Grandma, aunt uncle and a cousin were here with Maggie's brothers and grandpa on Christmas Eve and then we headed over the river and through the woods to grandmothers house (about 4 miles) and visited with more cousins aunts and uncles there on Christmas Day. Maggie got time with Steve's Dad and with my mom as well as many of the cousins.

This week was the first time both my boys were home at the same time in over a year. I finally got a picture just as Eddie and Grace were leaving on Sunday.

Tim and Maggie shot off some nerf rockets while Eddie loaded his car. That was hilarious. 

 

Maggie was sad that Eddie was leaving until I reminded her that Ms Emily was visiting from Poland, so we had some yucks on Sunday night. 

All this and I've been sick since Christmas Eve. Not flat out in bed sick but the kind where you still do everything but you drag all day and cough all night. It's exhausting.That's nothing compared to health issues other family members are facing. All in all it's been a wild ride.  I'm hoping 2014 starts out healthier for everyone.

And now it's New Year's Eve. Wow. The holidays are drawing to a close. Maggie and I wish everyone a very Happy New Year. I hope 2014 is as good a year for Maggie as this one has been. And I hope it's good for all of you as well. 

Happy Day!

Picture of Maggie and Grandma is on the other camera. I will add it.

Just a normal Wednesday

Over the past year or so I have been taking note of more and more things. Things that are not earthshaking, but "normal." It's true, in the abnormal world in which I live, there are days that are unbelievably normal.  Perhaps after so many years without normal days, I learned to appreciate and even celebrate the normal things.

Today is one of those days. 

I sent Maggie off to school looking great with her hair nicely brushed and everything where it should be. Today, Maggie is having her graduation picture taken. That's a very normal thing. 

And one I never ever thought she would experience.

Today is a good day. 

maggie's party

Click here to view these pictures larger

Im trying this again because one of you told me this didn't work. After I put up the link I switched things around and forgot to change things on the blog. This should work now, but if it doesn't you can check all the pictures out at the shutterfly share site maggiesmardigras@shutterfly.com 

You will see a large cut out - it's Justin Bieber with Juan's face pasted over Mr. Bieber's That was a huge hit with everyone. As were the Maggie Masks, of course. 

It was a joyous party. Anyone who feels sorry for "those poor kids" should spend some time at a party like this. You would lose whatever pity you harbored and  find yourself smiling!

Say Cheese

Maggie's school picture arrived yesterday. It's "ok" not great. Capturing Maggie in a bright moment without her face in a grimace can be difficult. This is exacerbated by her trepidation in front of all the equipment and the stranger telling her to smile. Despite this, there have been some excellent ones over the years, but there have also been some very bad ones. One was so bad that I let the company have it for even printing it. Why would any parent accept that? They refunded my money. Last year's picture was very good indeed, but I forgot to sent the money in so we never got any photos, just the student body card.  Between her facial movements and my forgetfulness, getting a good school picture of her is s a crapshoot.

Everybody has good ones and bad school photos.  My son Eddie used to take some doozies, but he had good ones too. I don't remember any terrible ones of Tim. My own history was spotty though. In a couple of years early in grammar school I decided to set my own hair. Wow! Those are some wild shots.

With pictures everywhere now, the annual school picture has lost a bit of its importance. Still, this will be your face in the class picture for all your classmates to see and pull out of dusty boxes 20 years from now. You just want to look good.

This picture of Maggie isn't perfect, but it definitely catches her wild side a little bit. I guess it's a keeper

Practical Fashion

Occasionally a woman has a fashion accessory that defines her.  Queen Elizabeth and the Royal women of England wear hats, Elizabeth Taylor has diamonds, and Paris Hilton has her little Chihuahua. Not to be outdone, Maggie McDonald has her scarves.

You may have noticed in all of the posted pictures, Maggie is wearing a cotton scarf around her neck. It has a practical basis – that is to catch all the secretions from her trach – but it has become a fashion statement.  We take care to either match or compliment her scarf with whatever outfit Maggie is wearing. We have amassed several over the three years she has had the trach and the scarves have become Maggie’s signature. When I was folding the laundry yesterday I counted 30 of them in the basket. Those are pictured below. There are at least another 20 either in the drawer or in the hamper. We need a bunch of them because Maggie goes through at least 10 a day.  .

Maggie’s scarf collection includes every color of the rainbow and several different types of designs. The only requirement is that the scarves be cotton (the understanding that “cotton breathes” is highly significant in this case) and big enough to go around her neck without strangling her. The most common is the “kerchief” style. Whenever I see them, I buy a few, especially if they are available in interesting colors. Some of her best scarves were presents from my brother Pat and his wife Julie. They gave her a Ferrari scarf from Italy, a fish scarf from Tahoe and a scarf with survival tips on it just before she started high school. Our friend Lexi gave her a couple with topographical maps of Yellowstone National park. Her teacher Ms. Taylor dyed and 

embellished a couple of them to match her prom dress and the formality of the evening.

I am always interested in growing the collection or replacing those worn out soldiers who have given all of their fibers in the interest of fashion and health. If you know of interesting cotton scarves available, please send me a link. The kerchief are available everywhere, I’m looking for the more unusual scarves so that Maggie can set herself apart from the normal scarf wearing teenager.

 Maggie is not the only one sporting a scarf in this house. Recently we added a scarf to another member of the family. We have a "guard duck" named Shirley.  She is made of stone and guards our front door. Shirley the duck has been on our huge front porch for 24 years. (That's the "porch" in the picture She was a wedding present for Steve and I from a woman named Shirley, so naturally we named the duck after her.  Age and weather are taking their toll on Shirley the duck. A piece of her neck simply fell off her and onto the front porch. Steve glued it, but it did not look good.  No problem. I grabbed one of Maggie scarves and tied it around her neck. Now she guards and looks fashionable.

Prom Report

Maggie had a BLAST at her prom. I was a doubting Thomas throughout the process. I thought the crowd would scare her, I though the music would scare her, I thought she would be too tired on a Friday night, I thought she would last about 30 minutes tops. If Maggie had the motor skills, she would roll her eyes at me. I was wrong wrong wrong.


But let’s start at the beginning. You will recall the vote on the appropriate wrap for the prom. Maggie kept changing her own vote but we ultimately opted for the blue sweater. The overwhelming majority, including me, voted for the white. However, I noticed that everyone who works with kids, and all the kids themselves, voted for the blue one. In addition, those within San Francisco voted for the blue 10-1. San Francisco voting results never correlates with state or national votes, so this is nothing new, but I have to listen to our peeps. She looked fabulous.

Prom day started in the classroom after lunch when they had a “beauty day.” Maggie and her only female classmate, Cui Peng, were pampered. They had their nails done and hair adorned. Cui Peng also got dressed up at school and was all ready to go.

Maggie got all dressed and ready at home. It was the first time she ever wore stockings (other than tights) and she could not stop rubbing her legs and laughing. We arrived at the prom about 45 minutes after it started (you do not want to be the first one there.) All but one of her friends had already arrived. In a very sad twist, Maggie’s girlfriend Cui Peng did not get to come because the van pickup never arrived. Cui sat there dressed up for two hours and the van never came. I offered to send my husband over to get her in the van, but by that time, her mother was understandably angry and had given up. That was a dark cloud in an otherwise bright evening.

Maggie danced the night away and smiled and laughed all night long.

 

Maggie really the dancing and the music and her beau Juan was very attentive. They even had a formal picture taken together. (I have not seen that yet.) Juan was decked out in his suit and, as handsome as he was, he was in competition with Tyre in his suit and hat and with Robert in his Cape and Italian Flag bow tie.

The rest of the students were also resplendent. A few went a little different. I had to grab a picture of this guy who dressed as either a marching bandleader or a 1940’s theatre usher. (He was very proud of his outfit and gladly posed for the picture) Some of the young women were so beautifully dressed it astounded me. Others, however, would not have passed muster at the Catholic school my boys attended. At my sons' school, the kids could not go to the prom unless the parents attended a meeting to learn the rules of the prom and, specifically, what was and was NOT acceptable attire. I promise you some of these outfits would have made the Christian Brothers blush. YOWSA! I had to cover my eyes.

The kids were having fun, I didn't see anything that suggested any alcohol use or any trouble of any kind. If there was any, it was not evident and did not diminish the evening in any way shape or form. The teachers and administrators were present but seemed to be having fun, not patrolling. 

The best part of the rest of the attendees, however, was the lack of response to the wheelchairs or the special ed kids dancing and having fun. They special ed kids were not “tolerated”, ridiculed, or coddled. They were ignored because they were just part of the backdrop. They are nothing special. That is appropriate teenage behavior, but in this case, it is awesome because it shows how accepting the kids are to the differences.

Maggie stayed at the prom for 2.5 hours. Rather than the anticipated fear, the noise and revelry seemed to give her energy. She laughed her head off and completely enjoyed herself. We left after 10Pm and she was completely spent. It took her all weekend to recover, which is exactly what a good prom should do.

Steve and I are still recovering. If you want to feel old, I suggest you spend a few hours at a high school prom.

The music is nothing I remotely regonzized - except for one of Maggie's favorites, "Imma B." (Steve is still astounded he didn't hear "Freebird"all night.) The dancing is enough to make you blush. Despite the change in styles of music and dance, the kis are all dressed up and grinning ear to ear. that part is timeless.

Sepcial Olympics report and pitures

Special Olympics was the greatest! All the kids have such a great time and everyone works very hard to insure that.It is a very impressive effort by alot of people. cge It's like old home week. Maggie gets to see friends who have gone to other schools, old teachers, classroom aides and nurses too.

Here are a few pictures and I will post video at some future point,but for right now you can see all the still pictures at Maggie's photo share site http://sfmaggiespecialolympics.shutterfly.com/

Maggie only competed in one event - a wheelchair race/dash with folks pushing. She was lucky enough to draw a school mate who's on the track team and won her event!  I don't even know his name, but he impressed me by introducing himself to Maggie and telling her he intended to make sure she won. I loved that!

I will say Maggie was very well pleased with herself and she was very happy that my mother "Grandma Carmel" showed up to cheer her on. I had her teacher snap a quick shot of the three of us.

Maggie also got to see Teacher Joe from last year. He delighted her by saying "Having fun is ok, but WINNING is what's important" (Of course they've been hearing the opposite for weeks.) I thought she was going to blow a gasket when he said that!

Here's Maggie basking in her victory and eating lunch at the same time.

Check out the rest of the photos at http://sfmaggiespecialolympics.shutterfly.com/

Rainy Sunday

Steve and Maggie went for a walk despite the rain. Maggie is holding her own umbrella. Somehow I think she'll stay dry.

Edit: full disclosure. Maggie was NOT holding that umbrella as I thought. Turns out my clever husband attached it to the arm of the chair with bungee cords.

This little piggy went weee weee wwee wee all the way home

A certain young woman arrived from school with a broken foot plate on her wheelchair and a missing shoe and sock on the opposite foot. The shoe and sock were on the floor of the bus and the footplate was in the bag with her valentines. The screw was sheared in half. She has done this several times. I need to get a kryptonite screw to withstand the constant pressure and strength that is Maggie. I cannot even imagine how she does these things.

Here's a closeup

Unrelated photo. My son decided to take a dip in Lake Tahoe in January. That Lake is cold in the summer when you don't have to run through snow to get into it. Now the water temp has t be in the 30s, maybe 40 at most. Do you think he looks cold?

Enjoy your Friday evening folks.

Out and About from the classroom

Maggie and Juan cruising the Mission District

Young Lady, you are NOT wearing that

I have described the hectic nature of the mornings around here. I am so lucky to have the nurse here to get Maggie dressed and ready. I don’t lay out Maggie’s clothes, because I don’t really care what she wears, as long as she looks clean and neat. It may be time to switch that and decide myself what clothes she will wear. I am aware that it is important that she looks good and decently put together. People are already staring, so a touch of class is important. I did have to balk this morning when I saw Maggie sitting in her chair in THIS.

If you can’t see well, try to picture some green pants with small shamrocks all over them – Target specials for St. Patrick’s day (which was three months ago) paired with a pink and yellow paisley shirt that looks like it was designed by peter max. Ay yi yi. She was already in the chair when I caught the ensemble, I realized she was wearing that shirt, but she wasn’t all the way dressed when I said good morning. It was too involved to change her pants, I would have to unstrap her and lift her out of the chair and onto the bed and then reverse the whole thing. Instead I just left her in the chair and changed her shirt. Still not quite “classy” but at least a step in the right direction.

In another mismatched outfit – but this at the end of the day getting ready for bed Maggie sat with Tim in the big chair. He put his Irish hat on her and she loved it. I just had to add these. She stayed cool for about a minute than just cracked up.