Tuesday, April 30, 2013

Maggie's world BLOOMS!

Maggie's prom dress is featured in BLOOM today, which is a wonderful blog about parenting kids with disabilities and a great resource for many other blogs

check it out! I copied and pasted it here, but the format is different than mine. Scroll way down to see Maggie, or you will get a better view just going to the site


Fit for a queen

A mom who writes at Maggie World shared this pic of daughter Maggie, 19 (top right), in her prom dress designed by Anne Marie, 16 (top left). 

"It's very difficult for Maggie to wear dresses because the straps from her wheelchair come right up between her legs. Further, her trache tube needs some sort of covering. This daughter of my friend loves to design clothes and designed and created a dress specifically for Maggie to wear to her prom night.

"She drew the pattern, 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 trache. "It's ingenious. It's thoughtful. And it's so very generous."

I love it!

Friday, April 26, 2013

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!

Thursday, April 25, 2013

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.

Monday, April 22, 2013

Graduation Picture!!

There are few pictures more important than one's high school graduation picture. It is a formal shot taken as one stands on the threshold of adulthood. Many of us cringe when we look back at that picture because the hairstyle, glasses or (God forbid) powder blue tux are so dating, but we cannot deny the significance of the picture itself.

In Maggie's case, this picture takes on even more significance. Not a lot of people would have thought Maggie would make it to her high school graduation, but I am looking at the cap and gown sitting right here on my table. She did make it. She didn't just survive against all odds, she is living a wonderful life. Maggie is one of the lucky few who is living the best possible life she can.

This is Maggie's kindergarten picture. She was soooo cute. Of course she was wearing a hat because she was recovering from one of her dozens of shunt surgeries and had a shaved head behind those front curls. You would never know it from the grin. She enjoyed life then, just as she does now.

Now that little girl is all grown up. We received the graduation pictures upon our return from Chicago and I have to say I am very happy with it. 

Somehow I doubt Maggie will look back at this and cringe, even though one more round with the hairbrush might have been a good idea.  

Saturday, April 20, 2013

Hanging with Joni and Vince

The logistics of arranging  four days away are daunting, but doable.  It was worse last year when I was trying this for the fist time because I was convinced it could not be done. Armed with a successful trip to New York last year, I knew we could make the Chicago visit work. But it was going to take a lot of organization and luck.

The first thing is to arrange for more nursing hours while we are gone. I have to start that a few months ahead of time because without that in place the rest cannot happen. That requires making and justifying a request, waiting while the Regional Center suggests various options to consider, explaining why those won't work and then waiting for approval. It's a bureaucratic process that takes a couple of weeks, but they came through for Maggie.

Right now we have a good group of nurses, but two of them cannot lift Maggie on their own. That meant they could not do a shift while I was gone because there would not be anyone here to help. I gave them plenty of notice and shifted things around so they wouldn't lose out on shifts.

But Maggie needs someone here besides nurses. She gets too lonely and really mad otherwise.  Last year Tim was here to keep her grounded and entertained so that part was easy. This year Tim is in Chicago - in fact that's who we were going to visit. I called my sister Joni. She has two boys away at college and lives about 35 miles north of here - but she works 20 miles north. My hope was that she could do the opposite commute from here. Her husband has a territory to cover and can use pretty much anywhere as home base.  Initially she was worried because she said you have to teach me when and how to suction and all that. I assured her the nurses would do all the medical stuff and that Maggie just needed someone else around. She said "All I have to do is LOVE her? That's easy."

They all got along famously. I got pictures and texts and phone calls. I finally exhaled and figured this really was going to work. I didn't realize how well it was working until Joni sent me a text while we were at Wrigley field asking if I needed oxygen.  I thought she was referring to the game and made a wisecrack in return. She texted again - NO! The guy just called, do you need the oxygen filled? I laughed my head off at that because I realized wasn't thinking about home at all. I was actually relaxed and not worried (oh and I had the tank filled on Wednesday before I left.)

I checked in frequently. Everything was fine. Every nurse showed up when they were supposed to and Maggie was happy and well cared for. Joni and Vince enjoyed our location and took full advantage of Golden Gate Park and the other amenities of the City.  They also had a front row seat on the circus like atmosphere here. She took the dog on more walks than he's been on in a month, got to know the workmen next door and quickly picked up on the quirks of the different nurses.  Her texts were hilarious. She even sent me a video of her and Maggie hanging out.  (After I saw it I told her how to fix Maggie's headrest so her head would not be so far back. ) If you don't remember Maggie's signs - putting her had to her face is "yes" and slamming her hand down is NO! She has a rather emphatic NO in this video which makes my sister laugh..

There were a couple of  moments that caused Joni a bit of angst, though I never had a clue that there was any concern at all. She heard the nurses changing shift early in the morning and though she heard Maggie had a rough night. She said she was downstairs in a flash, but everything was fine. Also,  I told her that the school nurse would ride the bus with Maggie on Friday, but I didn't tell her she arrived separately from the bus. The bus pulled up and Joan quietly freaked out that the school nurse wasn't on the bus. She was just about to lose it when Nurse Janice walked up from her car. Obviously it wasn't a problem, but it scared the bejesus out of Joan. She didn't tell me that until I got home but she said she realized right that one little slip by any of the players screwed everything up. She said "I cannot believe how many things have to go RIGHT for things to work in Maggie's world."

The reason I have so much fodder for this blog is that things so often go wrong.But the amazing thing is that they often DO go right. It just takes a lot of organization to get the puzzle to fit and then and a lot of luck to have things go right for four days in a row.

It also takes a great and generous sister and brother in law who were the final and most entertaining piece in the puzzle.

Where to next?

Thursday, April 18, 2013

Toddlin Town

Our brief getaway to Chicago was great. The weather was cold and the wind was blowing, but we really had fun. I just wore everything I owned and kept moving.

 Of course the focus of the trip was to visit Tim, our 22 year old son who moved to Chicago in January. He lives right in the heart of Wrigleyville - just two blocks from Wrigley Field and the 10,000 bars and restaurants that surround it. We stayed in a hotel about a mile away which was a perfect location. We were close enough to walk to see Tim but away from the noise of the nightlife.

We planned to go that particular weekend because the San Francisco Giants were playing the Cubs in Chicago. Steve jumped on line to get the tickets and we were surprised how easy it was and how reasonable the price was. Then we got to the game and understood. It was freezing, it rained and the wind was howling. There just wasn't a lot of demand for these seats in mid April. At least half the stadium was empty. I bet those same seats in the summer time are a tad more expensive. There was a four game series. The Giants won 3 out of the 4 games. We went to the only won the Giants lost. That didn't stop us from having fun.

We met our Friends Austin and Dee at the game and had a quick meal with them afterward. They went home but we kept going. Tim took us to an Improv show so we could experience his comedy world. If you find yourself in Chicago on a Friday night, check out the "Improvised Shakespeare at the IO (Improv Olympics) in Wrigleyville. That was hilarious.

 We did make it to the Magnificent Mile on Saturday morning and walked around while the snow fell on out heads. The tulips are really trying to bloom but the snow and cold keep them at bay.  I understand it's flooding there today, but assuming things survive that, you can tell the City of Chicago is about to burst into spring.

We also traveled a bit North of Chicago to Austin and Dee's house to see how people lived outside of the fraternity atmosphere of Wrigleyville. It was great to catch up with them too. Steve and Austin have been friends since college days, so there were lots of laughs.

Meanwhile, back in San Francisco, Maggie was entertained by my sister Joni and her husband Vince. The nurses were here to do all the medical things Maggie needed, and Joni and Vince were here as grounding forces for Maggie. She thought that was hilarious. In fact, that really deserves its own post.

It was fun. Exhausting but fun. I told Steve the next "vacation" we take will involve a hammock, a beach, and drinks with little umbrellas.


Tuesday, April 16, 2013

The Notebook

I love The Notebook.  No, not the movie. It's an actual notebook. I think I bought it at Christmastime when I was shopping for others. That's the only time I really "shop" and find all sorts of little trinkets to buy for myself. It was pale blue and pretty and on sale and that's pretty much all I needed to know.

I started using it immediately and amazingly, I have continued lo these 4 months. Whenever I talk to someone on the phone I write down the date and any other pertinent information in this notebook.

This is a huge improvement over my former "system" which involved the backs of used envelopes or other scraps of paper near whatever phone I was using. Inevitably they would be discarded as trash when in fact they had the key to cutting through hours of bureaucracy.  No one throws away The Notebook. I have names and dates and flight numbers and all sorts of things in The Notebook.  I can easily go back and find that confirmation number, or phone number or extension or whatever I need.  It's all in one place.

Yesterday I was trying to do 50 things at once and continued an important phone call as I drove to the bank (and YES I was hands free, thank you for asking.) I brought The Notebook with me so as not to miss jotting down that number or whatever crucial information I might need. I was very pleased with myself.

Sadly, when I returned home I accidentally left The Notebook in the car. Sadder still, I did not realize this until I was on hold with the Social Security Office this morning. The Notebook is especially helpful for things like conversations with Social Security. In fact that may be its greatest strength.

I was on the house phone, not the cell, and The Notebook was in the car around the corner.  I had to make a choice. Hang up or improvise. I could not hang up, I had too much invested. It takes so long to get through the phone system there and I was getting close to a REAL PERSON!!  I had to improvise. I knew an old envelope was dangerous and I anticipated a very long call, so I needed something bigger. I spied this oversized piece of cardboard and figured it was perfect. I could transfer it to The Notebook when I was done.

I tried to position the cardboard on the overcrowded table (mail, folded laundry and all matter of other things placed there during our brief  foray out of town). It was hard to find enough room. I placed it over the top of the computer, (pictured) tried to push the computer out of the way and then closed the computer putting the precious cardboard on top so I could take notes. As I wrote the date and who I was calling at the top of the cardboard, it suddenly dawned on me ---

Rather than use the computer as a backing for my cardboard, perhaps I could just open the top and type the information right into the computer. What a concept!

I hate it when technology makes me look like a dinosaur. I dutifully took notes typing everything pertinent into my computer. It is neat and orderly and I understand I may even be able to save it in some sort of file. Wow!

Of course that won't be necessary, because as soon As I was done I ran down to the car and transcribed my notes directly into The Notebook. All is "write" with my world again.

 The pen is mightier than a lot of things.

Wednesday, April 10, 2013

Catching up and checking out.

Halloooo out there.

Sorry for the delay. All is well, it's just been CRAAAAZY busy around here.

Over the weekend Maggie's private designer, Anne Marie came with the final fitting for the prom dress. It is AMAZING, and it looks incredible on Maggie, but I'm going to make you wait until next week because it is a school project and Anne Marie wants to turn it in and let people see it in person before they see it on the internet. That's fair. Suffice it to say the Miss Maggie is over the moon excited about it. (and I may have accidentally posted a pic on a certain social media site as well...)

In other news, I started a job on Monday. Well, to be precise, I increased and existing job and have a new title. I work as a Parent Liaison at UCSF Benioff Children's hospital three days a week. I've been working in the Family Resource Room on Fridays for the past several months but the powers that be decided to increase my time and sort of formalize what I have already been doing. I have really spent an inordinate amount of time in the hospital and have a pretty good idea how things work. Now I can share that experience and knowledge with other parent and know that it was not for naught and it will be put to good use.

But the biggest news is this. I am leaving this morning for Chicago. Steve and I are going to visit Tim and watch the Giants play the Cubs at Wrigley Field on Friday. At least we hope we will. This is the forecast for the weekend in Chicago.  Steve left this morning so it includes Wednesday. FYI I talked to Steve and so far this is spot on.

Several rainy spells, possibly heavy and with the potential for thunder and even some hail, sweep the area in several clusters Wednesday.
The periods of rain are likely to be separated by precipitation-free cloudy spells. Wider coverage, more frequent downpours develop Wednesday with thunder and possible hail Wednesday night. Blustery, chilly, damp and raw through Wednesday night. Unseasonably chilly daytime highs 15-degrees below normal. Northeast winds 12 to 24 mph Wednesday increasing 13 to 28 mph with some 30+ mph gusts Wednesday night. Widespread rainfall of 1 to 3" is possible by daybreak Thursday morning.
Another cool damp day for most sections
Breezy east winds hold area temperatures in the middle to upper 40s (50s to lower 60s far south) during the day. Occasional showers and thunderstorms with some heavy downpours.
Mostly cloudy, blustery and cold with some rain or wet snow.
Quite chilly as temps remain in the 30s most of the day. Partly cloudy and cold at night. North to northeast winds 15 to 30 mph.
Partly sunny start to the day, then clouds build with a chance of brief showers.
Continued very cool with highs holding in the lower and middle 40s. An increase in high and mid-level clouds at night. Northwest winds diminish and become light variable overnight.
Thickening and lowering clouds with an increasing likelihood of showers and thunderstorms in the afternoon..
Not as cold as afternoon highs surge to the middle 50s. More showers and thunderstorms possible at night. Southerly winds 10-18 mph.

 I might accidentally get on a plane headed to Hawaii. No, what's a little weather for a California girl who owns a ton of sweaters? I am looking forward to seeing my son who left for Chicago at the beginning of the year and also catching up with friends who live there. I'm sure we can find plenty of ways to entertain ourselves if the Giants are rained - or rather snowed - out. There seems to be plenty to do.

Maggie is staying here with her nurses and my wonderful sister Joni and her husband are staying in the house while we are gone. Joni can't do any of the things Maggie needs medically and she wondered what her role would be. She asked "am I just supposed to LOVE Maggie?"

I said exactly.

See you all next week and pictures of the amazing prom dress will be unveiled.

Thursday, April 4, 2013

Muni Madness

Maggie and her classmate were unable to board the L Taraval yesterday because the driver refused to move the streetcar a few feet so that the wheelchair ramp would line up with the door to the coach.  I just wrote this letter to the San Francisco Municipal Railway (Muni)   

Dear Muni:

I need to bring a matter to your attention. On April 3, 2013 two classes from Mission High School took a field trip to the San Francisco Zoo. These were special education students, several of whom use wheelchairs. My daughter Maggie is one of the wheelchair users.  The kids, teachers, aides and nurses boarded the J Church at Mission High and transferred to the L at the Church street station and then reversed the process coming home. This group uses Muni regularly and rarely has any issue. Unfortunately, yesterday was an exception.

Because of her medical conditions, my daughter had to return to school a bit earlier than the rest of the group to receive a needed medical procedure.  She and another student (also in a wheelchair) left with two aides and a nurse shortly before noon. 

The L Taraval was sitting empty at the terminus ready to be boarded.  However, the car was pulled beyond the ramp for the wheelchairs.  One of the aides talked to the driver and asked him to either back up a few feet so the kids could board in the front door or pull up a bit so they could board through the back door and make their way up to the seating area reserved for the disabled.  To their amazement, the driver refused to do so.  

Please understand, the coach was completely empty as that is the end/beginning of the line. The driver was waiting for several minutes to leave as is the custom at that particular place. There was no hurry, and  there was no inconvenience to any other passengers. Still, he refused to move the coach so as to allow my daughter or her classmate to board the streetcar.  This is inexcusable.

 Because they could not get the two wheelchairs onto the streetcar, they had to wait for the next one. That driver too had to wait several minutes before he took off. (I presume that is for the schedule – there are always cars sitting there waiting.)  The resulting unnecessary delay make my daughter late for her scheduled procedure and quite uncomfortable, something that could have been avoided if driver #1 had shown even the slightest courtesy or concern for the passengers.   

Interestingly, by the time the second car arrived a third wheelchair user had arrived. This person was not connected with my daughters group. Driver #2 originally told him he would have to wait for the next car as there wasn’t room for three wheelchairs. His companion and the school personnel easily made all three chairs fit and everyone rode without incident.

It seems some sensitivity training is needed for driver #1 and training on the proper wheelchair capacity for all your drivers. Muni provides a crucial service for the disabled members of San Francisco who rely on public transportation. Generally Muni serves this community pretty well; but this incident shows there is more work to do.

I hope you can determine who Driver #1 was and let him know that his lack of courtesy and refusal to accommodate the needs of the disabled – when the accommodations have already been provided – could have had disastrous results for my daughter rather than simply the discomfort she had to endure. I hope too that he will be disciplined for what I can only presume was mean spirited violation of Muni’s policies. 


The website says I can expect a response in 7 days. I can't WAIT to see what they have to say. 

They really should start finding someone to abuse who has a nicer mother. 

Wednesday, April 3, 2013

Noise from the past

Hello out there. I've been buried under work and spring break and Easter and everything, but I have now come up for air. Hope all is well in your world.

Last week an old friend came over for dinner with his family. Geordie and I practiced law together 25 years ago. He moved back to Portland and other than one brief encounter about 3 years ago, I haven't seen him in probably 18 years. His son and Maggie are the same age and both were babies the last time we spent any time together. It was great to see him and his family and all those years melted away as we reminisced and bored his kids and Maggie with old stories.

Geordie was a few years behind me and I was one rung up on the food chain. For a short while,  I was kinda sorta the associate to whom he reported. He and Craig, another lawyer, were hilarious and those were some fun years. They did a video mocking my office full of books and my encouraging style of editing their work. I never realized until I saw that video that I would constantly tell them what a great piece they had written while completely changing it. The video showed only a head behind huge stack of books effusively praising the work and then handing over a legal brief with red marks and inserts completely covering the page. Made me laugh then, and still does today.

Because I was older and wiser I was the first of that group to have babies. (Babies were a sensitive subject for female attorneys when Eddie was born in 1988 and probably still is today.  That subject is for another day, however.) Geordie and Craig took it upon themselves to shower Eddie and Tim with gifts - always the noisiest gifts possible.

Before they arrived for dinner, Geordie's wife Lori was texting me about the plans to get together. She advised that Geordie was bringing a Bow and Arrow set for Tim and a drum set for Eddie. That made me remember something and I knew I had a picture. I went upstairs and stated digging through old pictures* until I found what I was looking for. Eddie holding the JACKHAMMER those guys gave him when he was about three.

You cannot imagine how loud that thing was. But my boys loved it and played with it all the time. ALL. THE. TIME. 

It was hilarious to hear Geordie and Lori tell their kids about visiting here with our two wild boys jumping on furniture and racing around while Steve and I were calm cool and collected. (Funny, I don't remember either the wildness or ever being calm.) They said we made it look easy so they figured having kids wasn't that big of a deal.

(Picture me with my head thrown back laughing wickedly.)

It was amazing to think back to those times before Maggie was born. Our life was just as crazy then as it is now, but in a more conventional way.  Maggie was not nearly as entertained as we were, though, because even if she wasn't born, she cannot imagine a time when she was not the center of the world.

*Lest you think otherwise, I did give Eddie fair warning that I was going to post this picture and he put it on facebook first.