Mini adventures

One more full week until school starts! Both Maggie and I are ready for that because we both need the structure that the school year brings. To be honest, I need it more than Maggie does. I have had a very difficult time getting anything accomplished in the past month because I don't have my required stretches of uninterrupted time.

I spend a lot more time caring for and entertaining Maggie, both of which can be quite exhausting. To make matters worse, I get a lot less sleep. I can never sneak off to bed early because there is no nurse here in the evening. They come in the morning on the days I work and in the early afternoon on the days I don't. That leaves anywhere from 3 to 6 hours in the evening for me and Maggie to further bond.  I have deal with Maggie's needs, suctioning, feeding etc until the night nurse arrives. Maggie absolutely refuses to stay in her bed even with me in the room if Dad is in the front room.(or visa versa) Often all three of us Maggie, Steve and I, are sound asleep in various chairs in the front room when the night nurse gets there. By the time I give her report and get upstairs into bed I am wide awake from the interruption. Oh well, 10 more days. We can make it.

We are trying to continue our adventures though they are limited to a few days a week now. It's just too much to try to do more than that. Two days a week is plenty for her and more than plenty for me. We are limited to short jaunts because of Maggie's constant needs but we do live in a tourist mecca, so there is no shortage of things to do.

This week we went right into the belly of the beast and headed for Union Square to go shopping. We didn't buy anything - we almost ever do - but it is fun for Maggie to be part of the action. We went through several floors of Macys and other stores and then went over to watch the cable cars go by. Maggie thought those were hilarious.

 Thursday our friend Anne Marie was visiting (of the prom dress fame!) We headed to the Asian Art museum in Civic Center. I searched for an accessible parking spot for a while, but finally gave up and went underground to the Civic Center Garage. We went down two levels to find parking, unloaded Maggie, attached her pole and her dynavox and hooked up the switches. We put her shoes back on (she kicks them off constantly) and made out way to the elevator. There for the first tie we saw the sign that read "Elevators Closed. Please use stairs. Sorry for the inconvenience."

It took a minute to compute even though an overly helpful man was offering to help with the stairs. (absolutely impossible to carry Maggie and her wheelchair full of equipment up two flights of stairs. It's well over 200 lbs) I declined his kind offer and his request/demand for $5. We drove up one  level to ask for instructions on what to do.

I told the guy at the kiosk that I had a wheelchair and he said gruffly, well there's plenty of handicapped parking. Right, say I, but how do I get her out of the lot with the elevators out of order. "Take the stairs like everyone else." Really? again, we have a wheelchair. Why don't we just walk up the car ramp "No ma'am pedestrians are not allowed on the ramp." well dude, it's either the elevator or the ramp so you are just going to have to let us. (note this whole thing took at least 20 minutes for which I had to PAY) He relented.



I pushed her up the hill to the street level, but of course there was no cut out for the wheelchair and getting her onto the very high curb wasn't going to happen. We had to walk in traffic behind a line of parked cars to reach the corner where we could get back on the sidewalk.  I was exhausted by the time we reached the museum, which is visible behind us in the picture above.

 The girls enjoyed themselves and the museum was lovely and soothing and almost made it all worthwhile.

Almost.

Throughout the visit I was worrying about getting her back DOWN the hill. Up is not nearly as bad as down. Down is scary.  We made it without incident, though.

It really is too bad we only get to do these things twice a week.

Prom dress reveal

Tomorrow night is Maggie's prom. She is beyond excited. Her personally designed new dress should come today.  This is the dress that Anne Marie Hanley made specially for Maggie so that it will work with the straps on her chair.

Anne Marie is 16 years old and this was an independent project for school. I asked her mom Clare if she received an A on the project, because she really deserved it. The project was pass/fail and she passed with flying colors. Flying colors of pink and purple and violet and black.

For those of you waiting for the great unveiling, wait no longer. These pictures are from a couple of weeks ago when the final fitting was done. I promised not to reveal it until Anne Marie turned it in for credit, which happened last Friday.

You should know this was designed and created by Anne Marie with no pattern or anything else. She drew it, let Maggie pick the fabric and then created it quite literally out of whole cloth. It is difficult to see how amazing this is because Anne Marie made it look so effortless. The straps on Maggie's chair come up through her legs but that's hidden by the design. Because it's a skirt, the straps can come through the waistband and secure her to the chair. The scarf is another amazing feature. It begins as a sash of sorts sewn to the camisole and then continues as a scarf to use for Maggie's trach.

It's ingenious. It's Thoughtful. And it's so very generous.

Keep your eyes and ears opened for Anne Marie Hanley. This girl is going places.

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.

Designing Woman

After distractions galore, I am trying to get back to normal posting. I know I said that last week but we had guests over the weekend and there was never a moment to sit down and write. And I have a lovely story to share.

I have many friends from grammar school and high school and friends that I've met through work, through Steve, the boys and Maggie, but I really have only one friend from college with whom I am in regular contact. It is my college roommate, Clare, who lives in Stockton with her teenage daughter Anne Marie. They make the two hour trek to San Francisco regularly and we always spend some time and laughs together.

Anne Marie has always referred to Maggie as her friend, and treats her as such. This is most unusual. Little kids tend to be a little afraid of Maggie and older kids are generally busy doing other things. Not Anne Marie. She was never afraid of Maggie or her equipment in the least. The two of them used to read Junie B. Jones books together and share music. As they got older, Ann Marie treated Maggie like a peer. I love that.

In addition to being a sweetheart, Anne Marie is quite artistic and has an excellent fashion sense. When I complemented her on a dress she was wearing at a party, she said she was going to give it to Maggie. That dress arrived on their next visit, along with the prom dress Maggie wore last year. Both dresses had to be altered a bit to fit Ms. Maggie's little girl frame, but they were grown up dresses and she loved both.

Now Anne Marie is in high school and she has an independent assignment for this year. She can choose to do anything that is approved, but she has to plan and execute it on her own. If it doesn't work out, that's ok because often projects don't work. The lesson is in the planning and the trying. Anne Marie contacted me to ask if it was ok if she could use Maggie for her project. When I heard what it was, I jumped at the chance.

She is going to design and make a dress for Maggie to wear to her prom this year. She wants to make sure it is something that will work for Maggie with her wheelchair and her trach and all her other bells and whistles. I was delighted and Maggie was over the moon! She loves the hand me downs, but imagine, an AMH original design!!! 

Clare and Anne Marie came over a couple of weeks ago so that Anne Marie could interview Maggie about what she wants and what special things are needed. Here they are conferring away.  Anne Marie is showing Maggie one of the several designs she had already drawn, including one with a removable scarf for Maggie's trach. I was blown away by her creativity and her thoughtfulness.

Maggie loved every single one of them and when Anne Marie asked about colors, Maggie said yes to all of them. It didn't really narrow her choices much, but it definitely demonstrated how excited Maggie is about this.  We also talked about the pesky straps that come up through Maggie's legs making dresses almost impossible to wear. (We always have matching shorts underneath) Anne Marie will take that into consideration when she finalizes her designs.  

I will keep you updated as the project moves forward. We anticipate more meetings and perhaps a fitting or two as well. 

If Anne Marie's teacher is reading this, please give her an A. She has made one girl and her mother extremely happy. And that should count for something.