Cinderella's going to the BALL!

Tonight is the PROM!!

Maggie is very excited. She has been putting it on her talker and could not sleep a wink last night. It is so sweet.

As in other years, I will accompany Maggie to this ball. Sadly, though I will be unable to dance with her. I broke my foot the other day and I am on the disabled list.

If we run out of the ball at midnight and Prince Charming finds THIS shoe, I doubt he'll come looking for me.

Prom pics to follow!

Fit for a Queen

Maggie's Prom dress is taking shape and she is beyond excited. She had a fitting this weekend with her designer and everything is looking great!

Not too many 19 year old girls have their very own dress designer, but Maggie does. I wrote before about Anne Marie who decided to design and make Maggie's prom dress for a project at her high school. (check out Maggie World: Designing Woman). She is designing the dress so that it will work with Maggie's wheelchair and straps, which is amazing. The straps come up between Maggie's legs making dresses pretty much  impossible for Maggie to wear. When she went to her earlier proms, we had matching shorts underneath to avoid exposure. That won't be necessary with Anne Marie's clever design.

Anne Marie and her mom Clare (my college roommate) arrived on Saturday afternoon with a boatload of fabric choices for Maggie. She chose a soft pink which Anne then whipped into a lovely skirt. There is a black overlay which dresses it up quite a bit. She envisions a black camisole with a sash type piece draped over it. It's quite incredible, really.

More than that, this young woman is making it from her own drawings, not from a pattern. She is able to eyeball  it and make it work for Maggie.

We put Maggie in her bed for the initial try on and Anne Marie made various measurements etc for the next phase. (Note the pink shirt is NOT part of the overall ensemble)

Then we tried it in the chair. All straps are underneath the skirt and invisible to any passer by.

Maggie also selected the fabric for the sash, which is part of Anne Marie's vision. It will be beautiful and can be the scarf over her trach for that evening and will be removable for easy care. 

This girl has it all figured out. 

We cannot wait for the finished product. Maggie would happily have taken it "as is" and dressed like a princess all day. Hey, if the tiara fits...

Personally, I remain flabbergasted at Anne Marie's generosity, skill and insight. I think there may be quite a niche market out there for this

More to come as things develop.  

Edit: I've already been asked, so let me add that Anne Marie will turn 16 next week.

Daniella

A couple of Saturdays ago I was mindlessly folding a mountain of laundry and looking out the front window. I could see a knot of very well dressed teenagers taking pictures and getting ready to pile into a car. It was my neighbor Daniella and her friends taking off for the prom. They all looked fabulous and excited and were ready for a big night. I smiled as I watched them. How could I not. No matter what heartbreak or disappointment you remember from your own experience, the prom remains one of the key rites of passage for American teenagers.

I stopped mid fold because I realized I was smiling and thoroughly enjoyed the moment. It used to be that watching Daniella do anything broke my heart just a little bit. I didn't feel that this time and that made me happy.

Daniella has been my neighbor her entire life. she was born about 6 weeks after Maggie and was typical in every way. That's what was so hard. She started to walk, and Maggie didn't. She talked, and Maggie didn't. She had her girlfriends over, and Maggie didn't. I watched her hit and surpass milestone after milestone that Maggie never met and it hurt every time for a very long time.

At some point it stopped hurting. When kids are little it's hard not to compare, but as they grow into their own people comparisons generally stop. Maggie and Daniella were completely different from the start, it just took me a while to come to grips with that reality.

Don't get me wrong. Daniella is very sweet to Maggie and to all of us, but she and Maggie are not friends or peers in any way. The only thing they have in common is their age and the street on which they live. They have lead completely different lives, attended different schools, have different abilities and different everything.

Perhaps if things had been different, they would have been close friends. Maybe they would have covered for each other as they did whatever it is teenage girls do in secret. But that was not to be. I think I mourned that for a long time. Maggie never got the chance to be "normal" and have the normal kid experiences. Watching Daniella enjoy - or even protest - those experiences was a constant reminder of that.

Saturday Daniella graduates from high school and this Fall I will watch her leave for college. (To be honest, the college thing might hurt a little.)  She is poised and beautiful. She is ready to fly and I am happy for her.

 But a couple of Saturdays ago as I watched her and her friends leave for their prom, the first thought that crossed my mind was this: Daniella is wearing the same color dress Maggie wore to her prom. Instead of watching her experience something Maggie would not, I was making a connection to a similar experience of Maggie's. Now Maggie and Daniella have their age, the street on which they live and the color of their prom dresses in common.

And that made me smile.

Prom Recap

The Prom was a rousing success. The kids looked fantastic. As "Teacher Joe" said, they really didn't look like kids at all but sophisticated folks out on the town, which is exactly what they were.

Maggie was so excited before we left I had a hard time getting her dressed. And once she was dressed, the excitement only increased.

Maggie's night had two separate and distinct parts, and each was important to the entire night. I wrote a couple of weeks ago that Maggie had an actual "date" for this prom. That was a first for her. She was excited. Tyre, who is also non verbal, had his mom call to find out if Maggie would go with him and wanted to know the color of her dress so he could match and get appropriate flowers.

But it was not to be.

Tyre had to go in the hospital and could not go to the prom. I called his mom the other day and asked if Maggie could come by on her way to the prom and take pictures with him. I didn't want to make it harder or sadder for him but I wanted him to be part of the night if his mom thought it was a good idea. She thought it was a great idea and planned to get Tyre dressed in his matching outfit for the photo shoot.

We headed up to the hospital on our way to the prom. Tyre was ready and waiting, and he looked spectacular. They both did. He had flowers all ready for Maggie, which complemented her dress perfectly.

Tyre's mom and I took a ton of pictures and the kids were getting really tired of it. Maggie finally gave her "Paparazzi, Stop" pose.

With some sadness, we left Tyre behind and headed to the prom. It was at the MoAD, Museum of the African Diaspora, which was very cool. I want to go back when it's not packed with dolled up teenagers. 

Maggie and her friends hung out together and then hit the dance floor. The dance floor was packed and everyone was having a great time. The music was pulsing, to say the least. I can assure you I never heard lyrics quite like those at St. Rose Academy. 

There weren't too many of Maggie's special ed peers there, but enough that we had a good time together. Best dressed award definitely went to Chuy.

Maggie had fun with Miss Laura, who looked beautiful and with her teacher,  Mr. G.

Maggie's oldest friend Anthony was there too and he was having a great time. They have been in the same programs and classes since infancy.  By the end of the night, he and Maggie were holding hands. 

Fickle girl, that Maggie.

 All of us are a little worn out this morning, but it was a great night.

Prom Prep

The Prom is Friday night. Maggie is excited. My friend Rose is coming over to do some alterations on the dress today and Maggie is ready to model. Maybe we'll tease with some pictures later. Stay tuned

In a sad turn of events, however, her date will not be able to go because he is stuck in the hospital. I called his mom yesterday and asked if Maggie can come by before the prom to visit. If it would make him happy, great. If it would make him sad, then we wouldn't do it. She agreed it was a great idea.

Once she is all ready to go, Maggie will stop by the hospital in her prom dress and he will be in his suit, with the shirt that matches Maggie's dress, so they can take pictures.

Maggie will love it and he will love it.

Sows ear, meet silk purse.

Prom Date!!!

The PROM is approaching!! And Maggie has a DATE!

Tyre's mom called on his behalf to ask if Maggie would accompany Tyre to the prom on May 4. I responded on her behalf that she would love to. His mom asked her dress color so Tyre could get the matching shirt and accessories and get Maggie a corsage. (I suggested she skip that as Maggie will either methodically tear it to pieces or be allergic to it.)

No, this is not Victorian England where parents are arranging suitable dates for their offspring, it's parents of two non-verbal disabled teenagers conveying messages.

Of course attending the prom with Tyre means that both of them will arrive in separate wheelchair vans driven by their respective parents, and their "dancing" will be limited to having folks move their wheelchairs in unison, but that's how things roll in Maggie's World.

Maggie is already excited. She loves the build up, she loves getting ready and then she has so much fun in the short time she actually  spends at the prom. 

Mission High School has invited the special ed kids to attend at no charge for the past couple of years. I presume that is the case again, but I'm not sure. If Maggie needs to buy a ticket, of course we will do that. This year is is taking place at the Museum of the African Diaspora, which should be pretty cool. 

I read the other day that the average amount a single high school spends on Prom is $1,078  Not per couple, mind you. Per person. Can you imagine? That staggering amount includes the dress or tux, the ticket to the dance, the limo rides, the hair, nails, makeup, shoes and jewelry etc. .

Maggie is single-handedly bringing that average waaaaay down. As noted, she likely gets to go for nothing, which is a start. Her friend Anne Marie (who also provided her beautiful birthday party dress) gave her a beautiful dress to wear. There will not be any limo or hair or nail costs. We do have to find some shoes, but considering her feet are still in baby sized shoes, that's not an outrageous expense. 

We did buy something, though. Maggie and I went out the other day to shop, thinking perhaps a nice hair ornament would work. We came up empty on that score, but we did find a "tennis bracelet that will match her dress perfectly and we went for that. Now we just needs shoes and stockings. . 

The prom is a right of passage. Everyone should get a chance to go. Although Maggie's experience is very different from those of her non disabled peers, I doubt any of them have more fun than she does. 

And if they're spending $1,078 each, this is one of those times  I am thankful Maggie is anything but "average"

A winning compliment

Growing up in a large Irish Catholic family was fun. You knew the rules and ignored  kept them (mostly). All seven of us went through 12 years of Catholic school without a thought about it. Though I was 4th in line, I was the first to venture away from Catholic schools for college. It was a bit of a revolution in my house, but you knew if there was a storm, Sally was in the center of it.

 I went to UCLA and loved it. Despite its non religious status, I did not become a heathen or fall off the end of the earth. Unlike many San Franciscans, I do not HATE Los Angeles. It's a great town with a million things to do. I always knew, though, that I wasn't going to stay there.

Perhaps because I didn't stay in LA and perhaps because I have such a tight group of friends here from growing up, I fell out of touch with almost everyone from UCLA. There are still Christmas cards and the occasional facebook comment, but other than a rare reunion, I have fallen out of touch with every one. Except Clare.

Clare was my roommate for two years. She knows all my secrets. We lived in an apartment on Barry avenue and we named it Try Barry Pie to recognize the resurgence of sororities (we did not wish to join, it was simply an homage). Our next door neighbors were two sisters about 90 years old who used to listen to Johnny Carson at full volume. Every time we heard that introductory music we would laugh our heads off. They were 90 and tuning in a show at 11:30. We were 21 and trying to sleep. We bonded and have remained close friends ever since.

Funny - though college was my Declaration of Independence and my revolution from Catholic school, my closest college friend is from a large Irish Catholic family.

Shrug. What can I say? It's part of me.

Clare teaches special education in the central valley where she lives with her daughter Anne Marie. The two of them and Clare's mom Marilyn are frequent visitors to San Francisco and they always include us in their plans. Recently Steve and I were invited to her sister Anne's 25th anniversary luncheon. That's pretty good considering Steve had never even met Anne and neither of us had met her husband. We were interlopers, and happy to be there! It was an elegant affair and a lovely afternoon. I was able to talk to Clare and two of her sisters and catch up on the news about the others.  I love this family and feel a part of it.  

At that luncheon, Anne Marie looked beautiful in a flowered print dress and I told her so. She's in high school now and looks quite grown up and lovely. She has a great sense of style.

Apparently that style is not limited to clothing.

On Thanksgiving weekend Clare and Anne Marie came to SF and we spent one morning shopping on Chestnut Street. Maggie joined us but was not her cheerful self. She was exhausted from Thanksgiving and all the activity. That did not deter any of us from having a good time. After shopping, Clare and Anne Marie came back to the house and brought  Maggie a gift. It was the flowered dress Anne was wearing at the luncheon as well as another beautiful dress and wrap.

They know Maggie goes to the prom every year and thought one of these might work. You should have seen Maggie change her demeanor.   Now Maggie's wardrobe is set for her 18th birthday bash AND her prom.

I was sorry to see them go, but I made sure to complement Clare on her car as they drove away. You never  know....

Finish the Scrubbing because it's time for the BALL

Prom day has arrived and Miss Maggie is beyond excited. She wanted to try on her dress again yesterday but I told her she had to wait . She starts working on her talker and then I hear.

"I dress up tomorrow."

I just had to go in and give her a big kiss after that. Her enthusiasm is infectious. 

The prom fantasy has captured many a young woman. Sometimes the fantasy is realized and the night is magical. Too often, though teenage girls have set their expectations unrealistically high and are extremely disappointed when the actual night roles around. I can say with certainty that will not be a problem for Maggie. There is no boy drama, no competition with the other girls, just unmitigated joy at going to a social outing with her friends. Dressing up is just the icing on the cake. 

Kindness of two friends has added to the magic of the prom week. My friend Kathleen saw the post the other day about the dress not fitting. She want to make certain that Maggie had something to wear and she knew time was of the essence. Without saying a word, she packed up a box of possible accessories and a lacy black skirt which arrived via fedex yesterday.  That was beyond thoughtful. 

And then there's Kelly. Kelly is lawyer who works with Steve. She's only met Maggie once but she always asks about her and sent home a Christmas present for her. That was nothing compared to this week. Kelly brought a package into Steve to give to Maggie. It is a tiara for her to wear to the prom. But not just any tiara, it's the one Kelly wore in her own wedding. 

It is the perfect accessory to her fancy dress. Maggie will look even more like a princess. But Maggie is not good with anything on her head and she tends to fling it off as quickly as she can. We are going to give it a try and will certainly take pictures, but the thought of Maggie hurling that wedding tiara across the room is creating a pit in my stomach.  The gesture was incredibly generous and thoughtful, I'm just not sure Maggie is princess enough to go through with it. Maggie's princess persona may be more like Princess Leia or Elvira, Princess of the Dark than Kate Middleton or Cinderella.

Have a good weekend everyone. Think of Maggie this evening as she is dancing the night away.
. 

We Have a Winner

I bought another prom dress to replace the ill fitting gown from yesterday. It took me quite a while, the dresses are quite a bit more revealing in the Junior Department. I showed this to Maggie as she got off the bus and she was chomping at the bit to try it on. The bus driver gave it a thumbs up. She will use the same burnt orange wrap I showed yesterday.To tell you the truth, if it doesn't warm up she may travel to the prom in a snuggie which we will pull off for her grand entrance.

I had to grab a quick picture of her in the dress because you have never seen anyone so happy. 

We even took off her straps and oxygen for a couple of minutes so we can see the dress. I was worried she was going to slide out of the chair without the straps, but she stayed put long enough to grab a photo. We're hoping the oxygen is completely gone  by Friday. (She's getting there)

Now to get a wheelchair accessible pumpkin.

Pushing toward Friday

Maggie continues to inch her way toward wellness, but it is excruciatingly slow. According to the doctor improvement is the key, even if it's measured in nannobytes.

The end of the year activities are coming fast and furiously. As I wrote the other day, Maggie missed Special Olympics day, which was spectacularly unfair.* Today was the picnic, and I did take her over there for a while. She still needs supplemental oxygen and does all right for a while, and then you can see her fade. It's like a curtain comes down on her energy level. Fortunately the picnic was in Golden Gate park, about 5 minutes from the house, so we could pop over and leave early without difficulty.

It's a stamina issue. I have to push her a little so she can increase her stamina, but not too much so she goes in the wrong direction. It's a balancing act.  But there is a goal. Maggie's prom is Friday night. We need her well enough to go.

This afternoon after the nurse arrived and we did all the procedures I decided it was time to plan for the positive. I bought Maggie's prom dress. It's not easy to find an appropriate dress for a variety of reasons. Maggie is very small in stature and we have to buy it in the little girls department. But her body, while small, is not that of a little girl. While she has certain physical attributes, she does not a shred of modesty. Any low cut dress or spaghetti straps are a wardrobe malfunction waiting to happen. The dress has to be malfunction proof, which means a high cut party dress..  But this is not a 8 year old birthday party, it's a high school prom. So we have to use more sophisticated  accessories. I think this just might work. Maggie perked up when she saw it and reached her hand out to feel the fabric.

Now let's hope she gets to wear it.

*quoted from Notting Hill. We've been stuck in the house watching a lot of movies.

What's Brewing?

Maggie's school year will be over by Memorial Day. That means we are down to the last couple of weeks when all the fun stuff happens. Maggie has a huge week or so scheduled. Special Olympics is on Friday. The special ed picnic is on Monday and the Prom is NEXT Friday.

And today she is getting sick.

Come ON. Don't make her miss out on this stuff. It is just not fair.

She's needed supplemental oxygen since yesterday and now she's sleepy and coughing up strange colors. I've called the doctor, but I suspect we will have to wait for this to fully rear its ugly head to deal with it. She could be brewing up another pneumonia - that seems to be her "go to" illness. And, if I'm right that will knock her out for a week or so.

I hope I'm wrong, but my antennae are up

.

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.

Prom Day!

Prom day has arrived! I will post pictures of the queen when she is ready to go.

Today at school they are having a beauty day. Maggie is getting her hair and nails done. She chose the sparkly turquoise nail polish and the feathered head band.

Her escorts will be me and dad. her brothers cannot get here on a Friday night anywhere cose to the time required. Two nephews were offered by thier respective mothers, but Maggie needs someone who knows how to suction and read her cues. Believe me, Maggie is just fine with all of it.

Excitement is in the air!