Maggie World

Morning was Broken

2012-01-26T10:25:00.000-08:00

The title is a take off of an old Cat Stevens song, Morning Has Broken. It was a lovely song about a lovely morning in Spring and recognizing the beauty of all of it. Well, it ain't Spring and everything I recognized today warranted a different kind of song. It was a comedy of errors this morning.

Maggie was really frantic about something and I don't know what. She was freaking out in her bed, but nothing seemed to hurt or anything. I proceeded to program her dynavox for the day and fill the oxygen tank while trying to calm her down. Nothing was helping.

She still needed to be fed but she was so upset, there was no way the food would go in. I just kept getting her ready. She ripped her diaper but there was no time to change it, so I just taped it back together. I tried to put her in her chair for but she was arching and really upset. Occasionally I called for Steve to help me. He couldn't hear me and I would just keep trying. Finally after about 10 minutes of wrestling with her I thought I was going to drop her and I REALLY YELLED and he came running. I have never had to call for help to get her in her chair before. It is disconcerting.

Time was passing and I needed to get her downstairs. I decided to feed her downstairs while we waited for the bus, but I glanced at the clock and wondered if we would have time. Just then the doorbell rang and there was Nurse Janice coming up to tell us the bus was already here. Of COURSE they were here already.

Maggie was now safely in her chair and no longer crying, but she looked completely worn out and mad. (This picture is actually from the other day, there was no time for pics today, but you never get to see her mad face.) We got into the elevator for our S L O W ride down and I realized I hadn't combed her hair or put a scarf over her trach. And she still hadn't eaten. She was only half ready.

It is really foggy and drippy today.When we arrived in the backyard, the door to the basement was swollen shut from all the dampness and we were locked in the yard for a moment. Steve had opened the garage door and Janice could see us trying to get in the back door. She was pushing from her end and it was not moving. I told her to yell for Steve. He came down to the basement and just then I got it opened.

I handed Maggie over to Janice and grabbed a couple of scarves off the top of the dryer. I told Janice what happened and that Maggie did not get her feeding. All the while Ms. Maggie scowled at us. Janice just said "Oh my." in her very sweet way. The bus driver was great, he graciously said he was early, which he might have been, but I think he saw my face and figured I had enough for one morning.

Not sure what all that was about and I half expect a call from school today.

The bus pulled away and I had to leave immediately for my physical therapy appointment. The therapist asked how I was doing and I told her that my bad shoulder was really getting better, but for some reason it really hurt after this morning.

I cannot imaging what's causing that.

Hair cut!

2012-01-25T08:53:00.000-08:00

For the past couple of weeks, Maggie was scratching her forehead like crazy. I would hold her hand to stop her especially when I saw how scratched up and injured she was from her actions.(You can see the last of it in the picture below.) We tried various creams and salves to deal with the itching. Nothing stopped it. It took me a while to realize that her hair was bugging her. I would brush her hair back in the morning, but her hair is so fine it never stays where you brush it. It was hanging over her forehead and getting in her eyes. It was past time for a haircut.

I tried to set it up for Monday when Maggie had the day off school, but it couldn't be arranged. Lisa, the lady who cuts Maggie's and my hair could take us Tuesday afternoon. Ok. Maggie gets home a bit earlier on Tuesday, so we could make that work. Maggie was excited. She started talking about it on Monday night. "Mom, my hair tomorrow on Tuesday." By the time she got home from school yesterday she was chomping at the bit to get down to North Beach to see Lisa.

Lisa's shop is a quiet little place on Columbus Avenue. There is a lot of energy on the street, cable cars and buses roll by every few minutes and the the numerous pedestrians strolling by watch you get your haircut. They were treated to a show yesterday. No one like to get their haircut more than Maggie does. She laughs through the entire process and her joy in infectious.

Lisa praises Maggie throughout the whole haircut telling her how beautiful she is. Half the time Lisa is saying it in Italian and that sends Maggie into peals of laughter. It's not easy to cut Maggie's hair becasue she moves constantly and the back of her head is covered by the headrest of the wheelchair. As a matter of fact, Maggie has a large portion of hte back of her head that's almost bald from rubbing against that headrest, but you would never know is when Lisa is done. Maggie looks stylish and trendy. Maggie very seriously checks out all the angles and admires herself in the mirror. I told Lisa that the following picture should go in one of the haircut magazines.

She went off to school today anxious to show off her new "do" to her friends and classmates. She is going to be disappointed that there is no beauty treatment planned for today. .

Making Whoopie!

2012-01-24T11:19:00.000-08:00

Sometimes it is difficult to find things to entertain Maggie. She can't see television or movies so doesn't watch either. She cannot read books, but we can read them to her., She doesn't really have toys to play with on her own. It can be difficult.

Hence we are all delighted when there is something Maggie can do pretty much on her own. Granted she needs some help in the preparation, but she is all about the whoopie cushion.

Have a great day making whoopie!

Happy New Year

2012-01-23T09:24:00.000-08:00

Gung Hay Fat Choy! It is Chinese New Year and it is the Year of the Dragon, which is the Big one. I learned over the weekend that it is very desirable to have a male child in the Year of the Dragon. Eddie's a Dragon, so I nailed that one!

Maggie was born in the Year of the Dog and I was born in the Year of the Monkey. As I was looking through various things about the Lunar Calendar and the various animals etc, I checked on the compatibility of the Dog and the Monkey. This is what I found:

Dog and MONKEY
Have underlying respect for each other. No clashes of wills. Good and workable relations in love and partnerships. Will cooperate well together.

No wonder Maggie and I have such fun together.

We are going to spend Chinese New Year going to the Mall because that is what the dog is demanding. In fact as I write this she is saying "Mom go to upstairs and wear clothes Mom."

I guess I better sign off. I don't need a mad dog, that's for sure.

(Oh, and lest you think I'm typing in the nude, forget it. I just need to change before we can go out.)

Wild weekend plans

2012-01-20T17:10:00.001-08:00

Start of another three day weekend for Ms. Maggie. The SFUSD is closed Monday for Chinese New Year. Maggie and I will have to figure out something fun to do. Maggie's class celebrated today by calling Ms. Derkash Maggie's former teacher. She now lives and teaches in China and the class made arrangements to skype her early today, which is 1 in the morning tomorrow in China. They had a great time catching up and learned how the New Year is celebrated in China. .

Have a great weekend, but be careful. It's a jungle out there

Of course zebras don't live in jungles, but saying It's a savannah out there just doesn't cut it.

We have a busy one planned - especially Sunday when we will root our 49ers to victory. Here's a shot of Coit Tower all decked out in Red and Gold to honor the Niners. Even if you don't give a hoot about the game, you have to admit this picture is pretty cool.

Here's some Reality for you

2012-01-19T11:26:00.000-08:00

I think I've found something for Maggie to do when she's out of school. She can be a reality TV star. But Maggie may be a little TOO much reality for American audiences. I'll leave it to these ladies to break the ice.

PUSH GIRLS

COMING SOON

PUSHING THE LIMITS

Facing Life Head On

In the same way "Murderball," winner of the 2005 Audience Award for Best Documentary at the Sundance Film Festival, took the lid off the competitive world of “wheelchair rugby,” Sundance Channel is bringing an unfettered, uncensored glimpse at what it means to be sexy, ambitious and living with paralysis in Hollywood with PUSH GIRLS, a new original non-fiction series from producer Gay Rosenthal ("Ruby," "Little People, Big World"). Sundance Channel has ordered 14 episodes of the half-hour long docu-series, tracing the lives of four dynamic, outspoken and beautiful women who, by accident or illness, have been paralyzed from the neck or the waist down. The announcement was made today by Sarah Barnett, Sundance Channel General Manager. The series, which is currently in production, is slated to premiere in April 2012.

"The indomitable spirit of this series will give viewers permission to stare at a world that they may previously have been too polite - or too frightened - to explore,” says Barnett. “Sundance Channel allows the 'Push Girls' to convey the stark reality of their lives, something our broadminded audience will appreciate. We are remarkably fortunate to get to work with this exceptional group of women."

Gay Rosenthal commented, "Watching the 'Push Girls' tackling life with spirit and confidence is not only inspiring but compelling. The show challenges perceptions about life in a wheelchair, giving the audience an honest, no nonsense look into their world. It's real, it's outspoken and it's from the heart. I am delighted to share their story on a network that prides itself on authentic, bold and respectful storytelling.”

Taking a matter-of-fact attitude towards their disabilities, PUSH GIRLS offers a candid view of the women as they pursue their own claims to happiness as they enter different stages of their lives. Angela is a down-to-earth, stunningly gorgeous model who has recently become separated from her husband. Auti, a dancer, rapper, actress and all-around powerhouse, is crossing her fingers that, at age 42, she can try for a baby with her husband. Reflective and pragmatic Mia is taking stock of her relationship with her able-bodied boyfriend; a onetime competitive swimmer, she is about to attempt to swim for the first time since high school. Flirty, wisecracking Tiphany is doing some deep soul-searching about her sexuality, settling down and finding her calling in life.

___________________________

I'm really not sure how I feel about this, but I had to share it.

My parents never LISTEN!

2012-01-18T09:24:00.000-08:00

Many teenagers share this lament. My parents don't understand me! My parents never listen! For most these are catch phrases for growing up and becoming independent. In Maggie's case she means it quite literally.

We all feel guilty but we have enjoyed several weeks of unbelievably nice weather. The guilt comes because we know that we need rain and snow in the mountains to avoid a drought. Still, it's hard to complain about glorious blue skies in January. Tonight, finally, it's supposed to rain.

Up until this week it was cold in the mornings but warmed up very nicely during the day. It would get up into the 60's and even hit 70 degrees one day last week, That changed on Sunday. We woke up to overcast skies and much colder temps. The 49ers played Saturday afternoon in 60 degree weather. Sunday was in the 40's. Quite a change. Still, we didn't realize how different it was until we were well into our walk and it wasn't getting any warmer.

It's one thing for Steve and I to deal with the cold. We can run around and stick our hands in our pockets etc. Maggie, however, is a sitting duck and can't do anything to make herself warmer. We always seem to forget that until it's too late. She was a trooper for a while. She pulled the string on her sweatshirt as Steve ran through the park with her.

It was a little more sheltered in the area we call "the land that time forgot" and she had a good laugh with dad.

But as we continued on she had clearly had enough. She first used her talker to say, "Mom is cold." I said, yes I am,, Maggie, but we are moving. She erased that because it was not conveying the message she wanted. We walked on. Then she said "Maggie is cold." We congratulated her on a good sentence and walked on some more. Finally when we were at least a mile from home, she just said this

If you can't see it it says "Dad, I am cold, go to home dad dad dad."

We finally got it through our thick skulls that she was uncomfortable and went home. She did not change that message on her dynavox until we were inside. Then she said it three or four more times just to scold us.

We deserved the scolding. Next time more layers and a shorter outing. And maybe we bring some listening skills.

Give a kid a chance, will ya?

2012-01-16T09:05:00.000-08:00

"In the End, we will remember not the words of our enemies, but the silence of our friends." - Martin Luther King, Jr.

There is a girl named Amelia who lives near Philadelphia and will need a kidney transplant later this year. But she may not get it. This is not a story about the difficulty of finding a match. Her family will donate the needed kidney. This story is different and more upsetting. She is being denied the transplant surgery she needs simply because she has intellectual disabilities. Doctors are denying her the transplant because of her “quality of life.”

If you have not figured it out before from reading this blog, take note: There is a very strong bias against the disabled in the medical world. This bias is generally found hiding behind the phrase “quality of life.” As soon as I hear a doctor mention Maggie’s quality of life, I start looking for the door.

Western medicine wants to “cure” illness and disease, but disability cannot be “fixed” by the curative model and it is therefore problematic to many doctors. (Not all doctors, of course.) Disability is not an illness or a disease, though. It is a reality; it comes in all shapes and sizes and it affects people without regard to race, gender, or socioeconomic status. It is true, some people with disabilities lead terrible painful lives; but others lead wonderful full lives and have adapted to the disability. The quality of their lives is quite good, despite or even because of thedisability. This is difficult for doctors who have the bias to understand and yet these very individuals are often in the position of deciding who lives and who dies.

The story about Amelia is a difficult story for me because it triggered so many things that happened with Maggie last year. Maggie, of course, is a different story because she is so very medically complicated in addition to her disabilities. Doctors have legitimate medical reasons for declining some treatments on her. Sometimes, though, legitimate reasons are used as smoke screens to cover the underlying bias and I have to delve a little deeper to find out.

Last year Maggie needed a very complex surgery, which she might not survive. Neither Steve nor I were interested in putting Maggie through that and looked for a less invasive alternative. The surgeon refused to do the complex surgery, which we understood, and told us there was no less invasive alternative available. I had already spoken with other doctors and knew the possibilities. I simply did not believe him.

I asked a hypothetical and said, Ok, what if Maggie had a less complicated issue and needed a simpler surgery. (I used a specific example – one that I knew would present no problem for Maggie.) He said NO. “She is no longer a candidate for any surgery because she is too compromised.” The smoke screen cleared. I knew then that this was not about Maggie’s medical issues at all, but about her “quality of life.” Then, just to underscore the reality, he said, “You didn’t expect her to live forever, did you?”

Well, no doctor, I suppose I did not. But I do expect her to get the same chance as other people. Oh and by the way, you are talking about my daughter.

Lest you think I am delusional, let me assure you I fully understand how compromised Maggie is. I understand the dangers and live with them every minute of every day. I also understand when someone is writing off my daughter because he does not think she is “worth” saving. We went to other surgeons who did the less invasive alternative. It was simple, but we cannot be sure it worked. We are back to waiting and hoping, but at least we know Maggie got the chance she deserved.

I hope Amelia in Philadelphia gets her chance.

You can read her story here and if you are interested sign the petition at change.org to get the hospital to reverse its decision.

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

Navigating the system

2012-01-12T14:36:00.000-08:00

I found myself downtown with an hour before a scheduled meeting and decided to put it to good use. There was a social security office near my meeting and I need to find out what to do about getting Maggie into the system. Maggie will be 18 in about six weeks and I have to figure this stuff out. My attempts to do this online or on the phone were spectacular failures. I needed face time to get questions answered. There was the office, I had a crossword puzzle, a pen and an hour.

I didn't need the crossword for a distraction though. The waiting room was hilarious. The office I went to is on the edge of the financial district right near Chinatown. I may have been the only English speaker in the room. The best part was the guy whose job it was to scream out the numbers in Chinese after the clerk called them out in English. Half the time he would just scream it in English instead of Chinese and everyone would look at him blankly. It was the theater of the absurd. Navigating this system is difficult in English. I cannot imagine trying to do it in another language.

This was the sign that greeted me at the front door. I knew navigating was hard, but generally that doesn't mean actually getting to the office. I should have known then.

It was actually a productive hour. When the eventually called my name, the information was helpful. We have to come back after Maggie's 18th birthday and they will make a determination then whether or not she qualifies as disabled. I'm honestly not going to sweat out the outcome of thier decision too much.

Best of all I get to go back WITH Maggie. That will take the theatrics to a whole new level.

Comfort Food

2012-01-10T10:57:00.000-08:00

I made a chicken pot pie the other night. Not really earth shaking news, I realize. For whatever reason, I've never made one before. I've defrosted several and I have done the Bisquick and cream of chicken soup trick, but never made one from scratch until the other night. Big mistake was starting this project at 6PM. We didn't eat until 8 and I worked pretty much that entire two hours cooking all the parts, including the topping, and putting it together. Its much more of a rainy Sunday afternoon project and I will try it again when I'm not so rushed.

It was good. Not the best I've ever had, but good.

The best I ever had was a week or so after Maggie was born. She was still in the NICU and we were reeling trying to adjust to everything while still handling two little boys. One of the moms of a kindergartner in Eddie's class organized the parents to volunteer to bring us dinners. That was a godsend. I could spend the entire day at the hospital because Eddie was in Kindergarten and Tim was in preschool. I picked them up at the end of the day and went home and didn't have to think about shopping of cooking or anything.

The organizing mom, (whose name I cannot recall because they moved away at the end of that year) was the first to bring dinner and it was a giant dish of chicken pot pie. I served some to the boys and sat down with them to eat. Steve went to the hospital after work in the evening. The first bite calmed my frayed nerves and melted in my mouth. I think that is when I fully understood the meaning of the term comfort food.

The next morning I had some more for breakfast and it had the same effect. It seemed to strengthen me for the day ahead facing medical terminology I did not yet understand and wondering if Maggie would make it another day. I ate it for every single meal until it was gone. That was nearly 18 years ago and I can still remember how good that stuff made me feel. I could feel the nourishment, the kindness and the support of people in every bite.

Maybe that's why I've never tried to make it. There is no way I could ever measure up.

Civic Minded Maggie

2012-01-09T10:12:00.000-08:00

Yesterday we joined our friends Lori and Lily at the inauguration of Ed Lee as Mayor of San Francisco Mayor. Lily is 16 and a member of the Youth commission. Lily's mom Lori told us they were going and we rode Lily's coat tails right into City Hall for a fun and different outing on a Sunday.

As we approached City Hall. I was sitting at a red light wondering where in the world I was going to park because it was gong to be crowded.(found a blue zone easily though) I looked up and saw this and I am always taken by the beauty of City Hall.

We found our friends in the North Light Court, a room just off the rotunda, and tried to find a place that two wheelchairs would not completely block traffic. (Liliy is also in a wheelchair). We couldn't have two of them in the aisle or no one would be able to get through. I started to move to the other side of the room when I was approached by a woman who said, "I am with the Mayor's Office of Disability and we have some accessible seating in the rotunda if you would like to sit there." Sure! That's where everything was happening. Lily and Lori elected to stay where they were and watch it on the screen. That may have been the smarter move.

The accessible seating was very very close to all the action which would take place at the bottom of the grand staircase; however, it was around the corner from the front of the staircase and we were looking at the wall of the staircase unable to see anything. There was a screen, so I thought we would watch it there, but the screen was simply closed captions of the speeches etc for the hearing impaired. We are about 15 feet away from the Mayor as he is taking the oath in the top picture. We could hear it and we could read it, but we could not see anything. There was plenty to look at though. Just seeing all the people lined on all the levels was great.

It was fun. A photographer for China News Services was completely fascinated by Maggie's dynavox and kept taking pictures and asking questions. For all I know, Maggie is front page news somewhere. When the dignitaries started to arrive they had to walk right in front of us to get to their seats. We saw senators, congresswomen, mayors form various cities, tones of state officials and Sana Francisco officials as well. I kept telling Maggie to wave and she did, but no one really even acknowledged her. Those politicians are something. They can move through a crowd smiling and shaking hands and never really make eye contact with anyone. They move quickly too. I managed to get a shot of Pelosi and Feinstein but the others were by us in a flash. Maggie was unimpressed by the lot of them.

The speeches went on a little long and Maggie suddenly freaked out. I had to get up and move during the actual swearing in and the mayor's speech. The people around us were incredibly accommodating and let me stand off to one side with her. (It helps that Maggie cries silently.) She calmed down and we stayed until the end of the ceremony but did not get in line to see the new mayor or anything.

Maggie was done with all the pomp and circumstance. She needed to get back to the center of the universe..

The Divine Miss Em

2012-01-07T07:45:00.000-08:00

Tuesday was a big day around here. Not only was it Maggie's first day back to school for 2012, but some special visitors arrived. Maggie's former teacher Emily, who left San Francisco to teach in an international school in Warsaw Poland, came to stay with us for a few days with her handsome Polish boyfriend Dominik. Dominik has never been to San Francisco, so he got to see the sights and we got to visit with Emily.

Other than the occasional skype call, we have not seen Emily in nearly four years. I wondered if Maggie would really remember. She did, without question. As soon as she heard Emily's voice, Maggie started pumping her arm in excitement.

Emily taught Maggie for two years, in 4th and 5th grade.That was her first job out of college. She was hired a week before summer school started, packed her bags in San Diego and headed to San Francisco not knowing a soul or having anyplace to live. She acclimated to San Francisco perfectly and stayed at least five years. Emily connected with the families of several of her students, but of course I assume we were the closest. (Probably everyone else thinks that too.) She was over here many times over the years and was like a part of the family.

Perhaps because of her youth and freshness as a teacher, or more likely because of the person she is, Emily was the MOST enthusiastic teacher you can imagine. Together with Sheila, who taught Maggie and her classmates from K-2, she had to most disabled children in her class and made sure every one of them was engaged in whatever was going on. The two of them made sure the kids were included in the larger school activities. Not "included" in a special ed way, but truly a part of every activity. For example, there was a school talent show and Emily played straight man and facilitator to Maggie's "sit down" comedy role. (Maggie repeated that gig in middle school with "Teacher Joe" playing the straight man.)

Maggie was of course the perfect student for Emily because she is also very enthusiastic. In those days, before she had the trach, Maggie used to shout with excitement all the time. There was a lot of shouting during her time with Emily. Maggie was a Diva from the beginning, and Emily encouraged that at a time in Maggie's life that really made it stick. Maggie went off to middle school confident and sassy and never wavered from that personality.

Given Emily's sense of adventure, it was no real surprise when she decided to take her show on the road. She moved to Warsaw not knowing a soul and without a place to live, just as she did when she moved here. Of course she loves it there, but Emily loves wherever she is. Even hanging out in the basement waiting for the school bus yesterday or checking out Maggie modeling her Euro Cup shirt that Emily brought her from Poland. (below)

Now we have to say goodbye again because Emily and Dominik return to Warsaw today. It won't be sad, though because we know she will be back

Good morning

2012-01-06T07:11:00.001-08:00

Maggie loves her new Mission High sweatshirt!

Chistmas all year long!

2012-01-05T11:28:00.000-08:00

I dismantled Christmas. It took a few days and some negotiation, but it's 99% done now. The negotiation stem from my husband's insistence that things should stay up until January 6th, the Feast of the Magi. As you know, I vote for taking it down December 26th at 12:01AM but, to avoid being called Grinch or Scrooge, I don't really start barking until New Years.

We had a dinner guest on the 3rd so I agreed to leave the tree up if we could take down all the other paraphernalia/decorations. Now the tree is gone too. The platform the tree was on is still in the living room, but that's going today. The Nativity scene can stay up until tomorrow so the Three Kings know we were expecting them. (I'm hoping for myrrh, but frankincense is always nice too.)

Even though the decorations are gone, the gifts just keep on coming! Yesterday we received a wonderful package of things from Vanya, one of our German exchange students. It is easier to imagine her at home with the book of pictures from her region of Germany. It looks incredibly beautiful. That was fun and Maggie loved her new scarf, which is a bit more stylish than her usual kerchief.

Later in the evening, we received another set of gifts from Emily, Maggie's former teacher who is visiting from Poland. Maggie looks cool in her new shirt for the Euro Cup (which will take place in Warsaw this summer) and I have a lovely porcelain bell.

Steve's present was the best, however. Everyone is familiar with the Russian Nesting dolls - those lovely wooden dolls that have smaller and smaller ones inside. Little did we know, however, that the Russians were such 49er fans. It cracks me up that these dolls were inspired by the San Francisco 49ers, made in Russia, purchased in Poland and traveled back overseas to San Francisco.

These will be displayed through the Superbowl. No negotiation needed. We just have to hope the real 49ers are still in the hunt.

'scuse me. I have a platform to move.

Empty Nest

2012-01-03T08:33:00.000-08:00

The school bus arrived and whisked (ok lumbered) Maggie off to school. Steve is off to Napa. The boys are at their respective homes. For the first time since December 16th, I am alone in the house.

And I am OK with that.

Out with the Old

2011-12-30T14:04:00.000-08:00

2011 definitely had some high points. Not just the Royal Wedding (which, sadly, we did not attend) but things that happened to to our family.

Certainly having our German exchange students for three weeks was one big one. It was such a pleasure to meet them and get to know them and share this experience with them. They were welcomed to California with two earthquakes. Another high point was the several days we spent in exile in the East Bay while our floors were being done. We had a pool and a beautiful garden to enjoy and came back to gleaming wood floors. My boys and husband are healthy and happy. My mom is doing well.

Maggie "married" her boyfriend on Valentine's day, had fun at her Mardi Gras Birthday party looked beautiful at the Prom, hung out in a bar, went swimming, saw Carols Santana, dressed as Cleopatra for Halloween and went on dozens of fun outings. Maggie also introduced us to her alter ego "Melissa" who has been a regular visitor around here for months. (Hopefully Melissa was just a 2011 phenomenon.) She was deemed a truant by the school district (which doesn't know which way is up sometimes) and has nearly perfected her ability to steal things out of someones pocket. She improved her skills using her dynavox tremendously and now orders us around with great ease. Maggie also had to say goodbye to both Ms. Derkash and Ms Taylor her former teachers as they left the area.

There was a big milestone too. Steve and I celebrated out 25th wedding anniversary and snuck away for a weekend. Eddie moved to Orange County and started his full time work life. Tim moved to the suburbs (but he's coming back to the City).We had kind strangers return lost cell phones and people we barely know send gifts in the mail for Maggie.

There were down points too, the biggest being Maggie's health issues that consumed most of the year. She missed special Olympics because of illness. It was exhausting and scary and I hope we don't start off 2012 the same way, though she has a slight fever as I write this. Maggie had so many medical tests this year it was ridiculous. We were at UCSF as much as were were not. That was no fun.

. Other family members faced health challenges as well. I hope 2012 is healthier for everyone.

We had multiple problems with equipment such as wheelchairs, elevators and vans - but right now everything is working. There were ongoing issues with access and attitude. There were weird strangers and people starting, but our repertoire of snappy comebacks is ever improving.

All in all the good outweighed the bad. Despite her health issues, Maggie remains the happiest person on earth. And that happy demeanor makes it so much easier care for her and to handle the harder days.

I think we are ready to take what 2012 has to offer, but I do wonder what the New year will bring. I hope its something good for you

Happy New Year!

Post Christmas Post

2011-12-28T09:05:00.000-08:00

Maggie's Christmas socks from Eddie and Grace.

Christmas has come and gone. It was lovely. Exhausting, but lovely. Maggie stayed healthy (but she's getting sick now), my boys were here. All was right with the world. Now I am fighting the urge to throw the Christmas tree out the front window so I can restore what passes for order around here.

Eddie and Grace arrived from Southern California late Friday night and stayed until Monday. My father in law arrived Thursday and was here for the whole weekend. Tim stayed here on Christmas Eve night and had to sleep on the floor because there was no room at the Inn. We tried to draw the parallels, but a pad and sleeping bag on the floor isn't quite a manger.

Here are Maggie and Tim just before we left for Church on Christmas Eve.

We stayed home for both Christmas Eve and Christmas Day. This year, for the first time I didn't even take Maggie to church with us on Christmas Eve afternoon. It's a difficult time of year for her health wise and the crowds of coughing people at church seemed like an easily avoidable risk. Besides, the stares of people in church creep all of us out. They are either fascinated or look at us doe eyed like we have given them perspective at Christmastime. Thanks, but that's not a role I care to play. Of course once there I felt tremendously guilty and sad that she wasn't with us. Can't win.

We have had a Christmas Eve dinner of cracked crab and ravioli for as many years as I can remember. This year was no exception. My mom and Steve's dad were here along with my brother and his family and all of us. My sister Joan and her family came by before dinner to visit so there were 16 people in and out of here. Christmas Day is was just the five of us and my father in law. Poor Tim had to work at noon on Christmas Day because God forbid people have to do without their Starbucks Latte for a day. That was a bummer for him, but he was here for the gift giving frenzy and came back and ate dinner here. Best of a bad situation.

Of course there was one dramatic moment after everyone left on Christmas Eve night. Steve was upstairs helping his dad get settled, the boys and Grace were in the living room talking and Maggie and I were in her room. I put her up on the bed and was changing her diaper. Maggie's room is straight back from the living room - a distance of maybe 20-25 feet through the dining room. They can see me, which turned out to be a very good thing. Maggie's muscle tone is especially tight lately (probably because she was getting sick) and changing her when she's like that is very challenging. She was in a very awkward position and suddenly did this Olympic diver twist and flew off the (very high) bed. I screeched as it happened and was able to "catch" her in mid air to break her fall, but there was NO WAY I could have held on.

I didn't have to. The boys appeared out of nowhere before she hit the ground and saved the day. They must have seen it unfolding because they were there in a flash. I didn't know either of them could move that fast. It was like they had winged feet. They said it felt like one step instead of five or six. Maggie thought it was hilarious. She already thinks of them as heroes. Right then, so did I. We were damsels in distress and they saved the day.

If that was my Christmas magic moment, I will take it happily.

Merry Christmas

2011-12-24T07:26:00.000-08:00

Christmas greetings from my family to yours.

I hope you have a wonderful Christmas. If you don't celebrate this holiday, I hope you have a wonderful weekend. We are shutting it down here until Monday.

Thank you for taking the time to catch up on Maggie's World. I feel very lucky to be able to share her amazing life with people.

Final push

2011-12-23T07:41:00.000-08:00

"Greetings cards have all been sent...the Christmas rush is through."

Except that it isn't. I did send greeting cards, but I was so disorganized that some people got two while others were overlooked. I'm still waiting for an address too, so that will be a New Years card. My house is full to bursting with gifts, food, decorations and stuff. Still more rushing to do today, but mostly it's the grocery variety. That can be the most competitive shopping of all, though.

I do have to return a space heater I bought yesterday. My father in law is here and the room he is sleeping in does not have heat. We have a space heater in Maggie's room. We do not leave the heat on at night because it gets too hot upstairs, but the nurse would freeze without some heat. I couldn't take that one.
I was sure we had one and I went downstairs to our junk/storage area to find one. Turns out one was completely broken and the other was only a fan. Hmm. I texted or called various family friends and neighbors to see about borrowing a space heater, but no one had one. So off to Walgreen's to purchase a space heater. No problem. If the one in Maggie's room breaks I will have a spare. I brought it upstairs and started to set it up and HELLO - there's a space heater in that room already. This one is going back immediately. That's ONE thing out of this house.

Maggie and I went to North Beach yesterday and bought the good stuff for Christmas Eve dinner. It's all cash and carry down there, so we hit the bank, loaded up on cash and went to the bakery to get foccacia, and to the deli to get fresh ravioli. I used to do that on the morning of Christmas Eve, but it is so ridiculously crowded, that I decided to just get it done. I have a refrigerator and a freezer. Save energy. Use the technology!

Then we passed a Chinese vegetable market with the most beautiful string beans and had to stop. The place was small and tight, but we did not let that deter us. The owner said something like "I take care of him" (meaning Maggie.) He wanted me to wander around inside the shop and leave her out on Stockton Street.

Uhhhh NO.

I didn't think he could handle a lesson in suctioning so I thanked him but said no, I will keep her with me. We maneuvered with great difficulty through the little store, annoying some very competitive vegetable shoppers, and nearly knocking over giant bins of various types of produce, but I emerged with some beautiful veggies.

The busy day was made easier by the amazing weather. I know we need rain and there's no snow in the mountains, but it's hard to argue with this kind of day.

Hope everyone has a great day. the big day is upon us. Grandpa is already here. We are anxious for the arrival of Eddie and Grace late tonight and undoubtedly Tim will pop in at some point today.

Mugging for the Camera

2011-12-21T09:07:00.000-08:00

One Christmas season at least 30 years ago I went Christmas Shopping with my sister Mary. This is not earthshaking, I've done that with all of my sisters and brothers over the years. But this one trip was memorable and I am reminded of it whenever all of our Christmas ~~crap~~ decorations are out I remember this because I still have the Christmas mug I bought on that excursion.

Neither of us had kids then, but I think she was already married. We were in downtown San Francisco and decided our mission was to purchase something on every single floor of Macy's. I don't think we BOTH had to purchase something on every floor, but together we had to make sure we hit all of them. At that time there ware 8 floors in one building. Totally doable. Now Macys took over the IMagnin Building and there are 8 floors in two buildings and another building across the street with an additional four floors.(I think that one used to be Liberty House). Even if we were inclined to try, which we are not, I doubt we could succeed today.

It was a perfectly normal thing for us to do in those days. We were young, working and without responsibilities. A shirt for dad, on the first floor, something for mom on 4, ornaments or some such thing on 8, undoubtedly something for us on the floors with the clothes, but I don't remember .I bought the Christmas Mug in the cellar and I believe she did too.

In the years since life changed a hundred times. We have both had children, in fact each of us has a child with disabilities and our priorities changed. We went shopping one day last week and of course we went into Macy's. Mary did buy me a fishing ornament to replace Steve's cool one that was lost in the tree crash, but.I think that's the only $5 we spent in that store. We looked around and went out to lunch instead. Much more fitting.

I am enjoying my coffee out of this mug right now and marveling at the number of years that have gone by, and how much life has changed. Mostly, though I'm marveling that this cup has survived 30 years of packing up the Christmas stuff and has only one little nick (visible above the handle).

Hope I haven't jinxed it by writing this..

Tannen BOMB

2011-12-20T13:46:00.000-08:00

Just two weeks ago our Christmas tree was happily growing in our backyard in the Richmond District, a place famous for its fog and lack of sunshine. Yes, that's right. We cut out tree down in our own backyard, and I'm willing to bet we are the only ones in San Francisco who can say that.

This is the same tree we used several years ago. If you cut it right, it grows back. And my husband, who still brags about his A+ in Forestry 10 that he received 30 years ago in college, apparently knows what he's doing. It didn't look like much when first cut, but once it is up and decorated it looks just like a Christmas tree should.

Of course the genesis of this tree is not the whole story. As I wrote last week, it fell over. Once it was up and decorated, it tried to make a break for the back yard, tumbling over, breaking ornaments and tangling lights. Steve put it back up on its perch and the electric train is set up around the base.

The other night Steve was reading Maggie How the Grinch Stole Christmas and noticed a similarity between the tree in Cindy Lou Hoo's House and ours. Especially at the top. Not sure if that's a result of the crash or the heavy star or just the way our little tree entered the world.

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Five days to go. It is now screwed into the platform, so it will not be falling over again, but it still looks like it's trying to get back out to the back yard.

I will set it fee next week. I promise.

Warrior Mom

2011-12-17T16:28:00.000-08:00

I have a perfect new image to use/conjure/imagine/remember whenever I have to fight insurance companies, government agencies or the medical establishment to get Maggie what she needs

It's good to Christmas shop at Scottish Import stores.

Mom, it's Friday, Mom

2011-12-16T08:15:00.000-08:00

Maggie has an annoying habit of using her talker to repeat the same sentence 10,000 times. I believe she is waiting for a specific response and just keeps saying it until someone responds the way she wants. Generally we respond the first 50 times or so and then just tune it out. Steve can be reading the paper and Maggie will say "Dad, hello" over and over and over again. He says Hello Maggie, or Good morning Maggie or How are you today Maggie and she will just keep saying "DAD, Hello."

Maggie laughs her head off when I finally get exasperated and say, "Ok, Maggie you've said that enough. Clear it and start again." She does clear the sentence and start again, but generally just changes the sentence a little bit. Dad, Hello dad might become "Dad, good morning." with an accompanying wicked grin.

When she came up with "Dad, go to work Dad" it quickly became a favorite morning comment.

There is a slight chance that she knows it drives us crazy and she gets a wee bit of enjoyment out of that.

Last night after the nurse left Maggie's sentence was, "Mom, tomorrow is Friday Mom." I replied in various ways. "it certainly is" or "right you are." Nothing. I tried "yep, last day of school" and "you have to bring these gifts for your friends and teachers." "Vacation startes tomorrow." She just kept saying it over and over. I went back to wrapping and tried different answers about every third time she said "Mom, tomorrow is Friday Mom."

Steve was sitting in the other chair doing some work. He was right next to Maggie and hearing all of this but letting me respond because it was clear she was talking to me. Finally I said, "Hey dad, do you know what day tomorrow is?" He didn't even look up but got the point. He said, "I'm not sure....Thursday?"

Maggie slammed her hand down on her tray which is her sign for NO! (and when she slams it like that it's more of a "oh HELL no.") Steve and I started to laugh and Maggie was a bit mad for a minute but even she finally started laughing. I still don't know what she wanted me to say in return, but it was good to turn the tables on her.

Still, I have a sneaking suspicion we will pay for that little trick tonight.

All's Quiet on the Western Front

2011-12-15T09:29:00.000-08:00

Our life has morethan its share of crises. In fact, we spent the entire first five years ofMaggie’s life in crisis mode. There have been hundreds of crises since thentoo, and we have fretted and cried, wondered and feared the outcome. So far, we have weathered thestorms.

We do not live in crisis mode every day anymore, which isgood. A crisis is, by definition, an emergency and it takes precedence over allother issues in your life. You just haveto get through it and hope and pray for a positive outcome and deal with the falloutlater. We see others dealing with crisis and understand the fear and exhaustion,even if the circumstances are different.

When one has experienced crisis as often as we have, youlearn to enjoy the quieter days. Our day to day life is a busy one with issuesand activities very different from those of most people. It is always differentand often difficult, but we have adapted to it well. Periodically we have to make adjustments to “normalizethe abnormal.” Sometimes those adjustments have ripple effectsfinancially, emotionally or socially. Wejust figure it out and marshal on. C’est la vie.

In times like these, when our biggest “crisis” of the weekis the Christmas tree falling over, I have to stop and be thankful for all thatis going right. It’s December 15^th,Christmas is coming, Maggie is healthy, the boys are doing well and will both be here next week..

All is calm, all is bright.

How lovely are your branches....

2011-12-13T08:48:00.000-08:00

There are some days that start badly. Today is one of those days.

I came down around 6:30. Greeted Maggie talked to the nurse about the night and started my routine. I went into the kitchen to get coffee. Retrieved my happy Christmas from the dishwasher and was taking that perfect first sip of coffee when I heard a loud crash.

The Christmas tree, which we spent the last two nights decorating fell over. Of course this year, for the first time in many many years, Steve took the time to set up the train around the base of the tree and and we put the whole thing on a platform about 12 inches off the floor. That just made for a more spectacular crash

I didn't touch it, the dog wasn't near it. It just timbered crashing ornaments and spilling water all over the newly refinished floors. I couldn't lift it by myself and the nurse was in no position to assist. (In fact she left about two minutes after the crash). I was yelling for Steve who was in the shower. He came down barefoot and had to go back to get shoes on. He righted it, but had to leave for San Jose. We had to leave it to fix tonight. I mopped up the water and folded back the wet rug.

Meanwhile Ms. Maggie was in her room alone and having NONE of that. She was pounding on the side of her bed and demanding some attention. I rushed back there and she was fine - just indignant. I rushed through her morning ritual and got down to the bus.

I like to think things are gong to get better from here. In fact, I think I will go buy a lotto ticket.

Making the switch

2011-12-12T08:59:00.000-08:00

I took the plunge yesterday and started making the switch in pharmacies. As of the firts of the year, our insurer Anthem Blue Cross and our pharmacy,Walgreens, will no longer do business together. I delayed switching over hoping these two companies would reach an agreement and my little life boat would not flip over. Seems that will not happen.

When they redid our neighborhood Safeway, they put in a pharmacy. We've never used,it, but figured that made the most sense. Maggie and I walked over to Safeway early Sunday morning. I picked that time on purpose, because I knew it would take a while and at that hour the store is not crowded and the pharmacy is practically deserted. The pharmacy department is right behind the wine section of the store, so that's a win. There was one pharmacist working alone and he came over to the window to help me. I smiled and said," I'm either going to make your day or ruin your day right now."

He was well aware of the Anthem/Walgreens issue. I gave him a list of Maggie's medications and the pharmacy slips from almost all of the drugs. (I have one or two that weren't in the pile.) He busied himself going through the paperwork listing all 14 current medications. He asked my name, Steve's name, and then stopped, eyes wide and said, "Wait, are these all for one person?" I smiled and gestured toward Maggie. Yes, they are all for her.

I brought Maggie with me on purpose thinking that might make it a little easier for them to grasp the situation if they had a visual of the patient. When I turned around to introduce her, though, Maggie was sitting in profile with her hood pulled over her face. She looked like a reclusive woman of mystery.

I said, "Oh, Sorry" and turned her around and fixed the hood. She gave this guy the biggest grin you have ever seen and, though he was flummoxed by the task I had dumped on him first thing in the morning, he smiled right back at her.

I am not looking forward to the transition, but I can see that it just might work out all right eventually. It's only a few blocks away and I'm in there all the time anyway to get groceries.

Maggie will just have to charm them one at a time.

What's UP?

2011-12-10T22:39:00.001-08:00

Tim is always quick to pull Maggie out of her chair and sit with her.

Maggie's chair holds her head in place very nicely. As soon as she gets out of her chair she tends to go into extension and her head goes straight back.

Tim just joins her and says, "What the Hell do you see up there?" That cracks Maggie up and I had to grab this shot.

Parading around the Neighborhood

2011-12-09T16:05:00.001-08:00

We live in a 90 year old house, but we are only the third owners. The first owner had it from 1922 until sometime in the early 50's when my grandparents bought it. My grandfather died in 1958, but my grandmother lived here until January 1987 when she passed away at the age of 97. That's when we bought it. Ronald Reagan was president. We were "newlyweds" (still are!), newly licensed lawyers with no children. Everything in the house needed work and we started tackling one project after another

This house was so BIG then. It was just the two of us and we had all these rooms.. Over the years it became much much smaller as we had kids who kept getting bigger and gathering more things. Then the boys moved out and it felt bigger again, but since they left most of their stuff, it has never felt as big as it first did. Also, once we moved Maggie downstairs and turned the breakfast room into her bedroom, the flow of the house has been very different.

Even though we've lived here for 25 years, we do not have "seniority" on the block. I guess there are about 40 houses on the block and I know at least 6 have residents who have been here longer than us. Another 5 have been here 20 years. That's amazing. Some of the oldest neighbors have passed away and young families have moved in just as we did 25 years ago. Those houses that were neglected came back to life right before our eyes.

People tend to stay on this block. But not everyone. This week one of the new families moved away. Hilary and Wendy had only been here a few years, but decided to move across town to cut down on commutes to school and work. We were sorry to see them go. They have three little kids, two boys and a girl, who brought such a great energy to the block. One of the boys who was only three or four had a very DEEP voice and would shout for mom, or for one of his siblings. We cracked up every time we heard him. They were always outside playing and having fun with one of the moms watching them. When I saw the "For Sale" sign on the house I was sad. I looked forward to watching the kids grow up.

Moving with three little kids is no for the feint of heart. It's a ton of work (though not having 24 years worth of crap would make it slightly easier). They worked diligently for several weeks and were ready when the moving trucks arrived last Friday. During one of the purges in preparation for the move, Hilary found a box with her kids Halloween costumes from a couple of years ago. They pounced on that box when they saw it and decided to have a parade up and down the street wearing a mish mash of too small costumes. They pulled the gay pride flag out to make it even more parade like. It was hilarious. They happily stopped for the paparazzi (me).

We will miss them and wish them well.

With them gone it will fall to us to run the parades around here. I will festoon Maggie's chair. It just won't be the same, though.

Ho Ho, Ho

2011-12-08T08:14:00.001-08:00

I love Christmas time. I really do. I love when you see the real Christmas spirit in others. I love thinking about others and coming us with the perfect gifts. I love getting cards, especially ones with pictures. I love the decorations in the stores (but not too early.) I love excited children. I love coming home weary at 6:00PM and seeing houses and trees decorated with lights. It makes me happy.

I love it. I just don't want to DO any of it.

I want to enjoy everybody else doing all the Christmas things and without having to to it myself. Scrooge? Hardly. Lazy and wary of more clutter? Guilty as charged.

I have cards here waiting to be written. I have some gifts purchased but unwrapped. I am stumped on others. Boxes of decorations are starting to make their way up from the basement thanks only to my husband. I sigh loudly in anticipation of all of it.

I was trying to convince my husband that the house looks perfect as is, but he disagrees.We just finished getting the front steps redone and the artist/contractor who did them wants them to dry for another day. I thought this was the look we should keep for the season, but apparently that's not festive enough.

We will get a tree this weekend and once its up I will be happy and I will surround myself with the joys of the season. I will write cards and bake cookies and wait for Santa. My boys will come home, Maggie will stay healthy and we will feast and share and enjoy.

And I will scoff at those who aren't as into the season as I am.

A winning compliment

2011-12-06T12:58:00.001-08:00

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....

Maggie Mixes

2011-12-05T10:48:00.001-08:00

Anyone who has read this blog at all knows about Maggie and her music. For the past several years, Maggie has been listening to pop music. Maggie demands it constantly, so the background noise in our house is Lady Gaga or Katy Perry or some other pop star. Now it seems she is refining her tastes. It's still pop music, but she is listening for different things.

This love started when she was in middle school, which is age appropriate. She had two girlfriends there who were great for Maggie socially. We had a rock star birthday party and I made a mixed CD for all the kids. that was the very first "Maggie Mix." There have been several other since then. Maggie gives them out at Girls Rock camp and to her classmates and anyone else who is interested. Mr. Bebe was a paraprofessional in her middle school class. He suggested "All the Single Ladies" by Beyonce. That is Maggie's signature song and it is on every mix. Other songs will be on a few cds but not all of them. Maggie, unlike other teenagers is not as willing to accept change, though, so a few of the songs appear on several if not all of the mixes.

I have learned to introduce new songs by placing them just after her familiar tunes. While Maggie is still glowing in the joy of "All the Single Ladies," she is not fighting a new song. This trick has saved me from going out of my mind listening to the same music constantly. Recently we made a Maggie Mix when our German exchange students left. There were the Maggie standards, which had been the background music of their entire stay, along with several songs about San Francisco to make sure they didn't forget their time here. I made an extra CD and put it in the car because I had to have a little variety.

Maggie is far more willing to accept new music if there is something in it that makes her laugh. Profanity is hilarious. Of course, all of the songs are the cleaned up versions. For example, we have C Lo Green's "Forget You" rather than the other version. You may not realize, however, that even the clean version has a couple of profane phrases, and those send Maggie over the edge.

I noticed this first with Mumford and Sons "Little Lion Man." It's an upbeat song and Maggie was tolerating it even though it was new. At one point they say "I really F'd it up this time" and Maggie started laughing her head off. I looked at her in mock horror and said Maggie where would you even HEAR words like that. (I won't tell you her response.) Now we wait for that phrase with great anticipation.

The other day she started laughing uncontrollably at another song. There was no profanity at all and I couldn't figure out what was making her laugh. The song was "Save me San Francisco" by Train. Every time they said "San Francisco" Maggie completely lost it, laughing so hard she couldn't breathe.

I think she likes it here. In fact I'd swear to it - but only to make her laugh.

Christmas is coming.

2011-12-03T14:57:00.001-08:00

Long time no post....Every time I sat down to write something I ran out of gas. I was fighting a bug all week and simply did not have any stamina. So far Maggie hasn't come down with it, and I hope it stays that way.

We had a rule in my house growing up. We were not allowed to decorate, discuss or even anticipate Christmas until after my sister Joan's birthday. That's today! I talked to her this morning and won't see her for the rest of the day, so that means I am free to acknowledge that Christmas is coming. Since I was feeling better today we headed downtown early this morning to beat the crowd and check out some of the Christmas decorations.

The best thing about getting downtown early is that it's easy to find street parking. Most of the stores weren't even opened at 9:15 when we arrived. People arriving for a day of shopping would likely not park on the street. They would have to feed the meter constantly. Carrying around all that change would deter them and likely injure their backs. We do not have that problem when Maggie is with us. We can park pretty much anywhere and put up the disabled placard and not pay a dime. Win Win!!

We checked out the puppies and Kittens in Macy's windows, went through Holiday Lane in Macy's, checked out a couple of other stores, went into the St Francis Hotel, checked out Union Square and we were back home by noon. Very efficient and very festive.

I have to say that the St Francis hotel is fantastic and beautiful, but difficult to navigate with a wheelchair. The front door is not accessible and you have to enter all the way around in the back. It's legal, but not very welcoming. In addition, the glass elevators in the St. Francis are really off limits to interlopers like us. You have to show a room key to access them. I can't really object to that, it is for the safety of the guests but Maggie missed that opportunity. It's almost like the hotels are for the guests or something.

We did experience a "first" while in Macy's. I was taking this picture of Maggie near the nutcracker. A dad was keeping his two little girls out of the shot and it was clear they were anxious to check out the nutcracker. I hurried the picture so we wouldn't hog the spot. As we finished I said, "it's all yours." One of the girls,who looked about 4 years old. was telling us something about what they were going to do. Though we couldn't quite hear/understand her Steve and I both said something like, "that sounds great, have a good time." She frowned and said more clearly "I want a turn getting a picture in the chair that moves".

Oh.

I grinned as it dawned on me. She wanted to get her picture taken while sitting in Maggie's chair. We are used to kids staring at Maggie. The wheelchair, the computer, the tray, her trach etc. It's a lot for a kid to take in. This was the first time, though, that we ever experienced a kid wanting to use it.

I just said, "Oh I'm sorry honey, she can't get out of the chair it goes with her." She was fine hearing "no." I smiled at her dad, but he did not speak any English and I'm not sure he realized what had gone on. Maggie was also oblivious.

We left. Steve and I were chuckling to ourselves and feeling a little of the magic of the Season. .

Aging Wonder Dog

2011-11-29T10:53:00.001-08:00

Brisco the Wonder dog is getting old. He doesn't really look old, but things are changing. He sleeps a lot. He is very deaf and is constantly shocked when someone approaches from out of his sight line. He doesn't hear his old nemises, the mailman, approach the house or drop the mail in the slot, but will bark wildly if he sees him pass the house. In fact, he barks at every passer by he sees out the front door or window as if to let them know he is still a force to be reckoned with.

He is still protective of Maggie. The nurses are allowed do their work in Maggie room, but as soon as they come out of her room he lets them know that they are now in his jurisdiction. This has been going on for a couple of years but now he actually has to SEE them exit the room with Maggie because he can't hear them coming.

One new behavior is to bark at me every morning as Maggie and I get in the elevator to go down to meet the bus. It's our new routine Once Maggie is all ready to go, we head out for the deck and approach the elevator. Brisco starts his incessant barking as though he's Lassie and Timmy is down a well. It's 7:30 in the morning and I'm sure the neighbors really appreciate this. I wave at him to be quiet and get into the elevator as fast as possible. He barks wildly until he remembers to run downstairs.

He's frantic as though we are in danger. I thank him for his concern and say it's an elevator, we are ok. (Because reasoning with a barking dog is always helpful.) He barks as we starts to descend and I gesture for him to run downstairs to meet us. He is always waiting at the bottom relived when we arrive. I cannot figure this one out at all. We have had the elevator for 6 or 7 years now, and we get in it every day. Interestingly, he doesn't bark when she ascends, only on the ride down. As a middle aged woman, I know gravity is the enemy, but how does the dog know that?

Of course Maggie finds this hilarious. She starts laughing,which makes her start coughing and needs suctioning. I am in the lift standing on my tiptoes to squeeze in beside Maggie's large wheelchair and all the equipment trying to free up the suction tubing with one hand and gesturing for the dog to come downstairs with the other.

Once that harrowing ride is done he is happy to see us and runs for the basement door. When he finds it closed, as he does very morning, he looks at me very concerned and starts barking again. Maggie starts laughing again, which means more suctioning. I look at the dog and even though he can't her me I tell him, "Don't worry, there's a door knob. I have opposable thumbs and I can open it." He is delighted when I open it and runs to the closed garage door and starts barking as if to say "HA! Another obstacle. Can you figure this one out too?!?!?!?"

Maggie laughs. I push the button to open the door and Brisco calmly walks out if front to sniff around and wait for the bus. To the passer by he looks like the picture of a the perfect family dog, not the nut case he has become.

Sneaking around downtown

2011-11-28T08:30:00.001-08:00

The school bus was a welcome sight this morning. Maggie has been home for five days and we both need a little change in the routine. She will have fun with others and I can get some stuff done around here.

The weekend was great but busy. We had family over Thursday and Friday and part of Saturday. We all consumed Turkey in various forms. Yesterday everyone was gone. We headed downtown early for our annual stop at the Hyatt Regency to view the Christmas decorations and ride the glass elevators. Maggie loves those elevators. They overlook the beautiful atrium lobby which is 17 stories high and adorned with lights hanging down several stories from the top.

We have done this for several years now and Maggie starts laughing as soon as we enter the building. Imagine our disappointment, then, when we discovered the Hyatt had installed security measures to keep out the riff raff (us). Now you had to have a room key to access the elevators.

We considered asking the concierge for permission because people rarely deny reasonable requests for Maggie. Of course if he said no, then where would we be. Being the criminal masterminds we are, we just waited for a guest with a key. That took all of about 30 seconds. A family arrived and were happy to oblige. Sadly they were only going to the 6th floor. However another couple boarded on the 3rd floor. They were a bit grumpy and didn't appreciate the crowded elevator. We just gave a smile and tried to look like we belonged. They put their key in for the 16th floor. SCORE!

Maggie got her elevator fix and was delighted.

We left there and checked out the Holiday Ice Rink in Justin Herman Plaza

Then we walked past the Occupy SF encampment and saw this Barbie Dream House tent.

We figured this must be the high rent district or the encampment - even the 99% has a 1%.

Maggie just wants to know if it has glass elevators.

The morning after

2011-11-25T05:45:00.001-08:00

The obligatory shot of the turkey and a picture of the colorful vegetables and sweet potatoes.

Thanksgiving was great. Family came here, which is perfect. It's just too difficult to take Maggie out of her element. I would much rather do the cooking and prep work than try to cart her off somewhere. Everything we need is here and set up for easy use. We needed it yesterday as Maggie needed an oxygen boost for a bit mid day. Not sure where that came from because she seemed healthy. Maybe something is brewing. 'Tis the season for illness as well as shopping, holidays, family, eating, etc.

Just to complicate my life, I did start the day out with an unnecessary stressor. I offered to bring the turkey over to my moms house and put it in the oven for her. The problem was that both turkeys were going to take five hours to cook and both of us were planning to eat around three. I was waking up in the night worrying about how to get it all accomplished in a short widow of time. My plan was to get mine stuffed and in the oven and then race over to my mom's house to do the same thing. That was going to take precision timing.

I made the stuffing on Wednesday - a ton of it to stuff two big turkeys. I had the potatoes peeled and boiling and the cranberry sauce all cooked by 7:45 and then had to get my turkeys.

I always order my turkeys from Arguello Super (home of the World Famous Turkey Sandwich). It's just a couple of blocks form here and the turkeys are fabulous. The best part is you can pick it up Thanksgiving morning, meaning no ridiculous overcrowding in the refrigerator Wednesday night. I arranged to pick up two turkeys, one for us and one for my mom. I was standing at the door when the store opened at 8AM. These are big birds, 21 and 22 lbs. I knew I couldn't carry them home so I brought my old lady shopping basket. I put my 43 lbs of turkey in it and wheeled it home. .

Really sorry I don't have a picture of that to share with you.

My bird was in the oven by 8:30 and I headed over to moms. Steve called while I was en route. He was exasperated. Ms. Maggie was going crazy and he couldn't get the talker to work. That was making her crazier and she was trying to pull her trach out. I tried to talk him through the fix, which I can do in my sleep, but I just know it, I can't explain it without looking. I was sitting in my mothers driveway trying to explain it and finally said, "Look, if I could hang up and get this turkey stuffed and in the oven, I could be home in 25 minutes." He basically had to sit next to her and hold her hand down until I got home. Come to think of it, that episode should have been a warning that she didn't feel well, because that is definitely not her norm.

I stuffed mom's turkey and put it in her oven, gave her a kiss and left. My sisters and brother were headed there for dinner and one of them would get it out when it was done. I was back home by 9:45, fixed the dynavox in about 30 seconds. (Steve was on the right page to fix it, but we were describing different parts of the page to one another and didn't realize we were talking about the same thing.)

The rest of the day went off without a hitch. The food and company were excellent. The dishes are done. The 49ers lost, but they are still 9-2, so even that was palatable. The nurse arrived at 11:00PM and I fell into bed. And then woke up at 4:30 AM and never went back to sleep. I got up at 5AM and had a cup of tea and said goodbye to Tim who had to go to work early. Now it's 6:30 and I'm out of gas, but the nurse leaves at 7.

The term "long weekend" is taking on new meaning. At least there are leftovers.

I need coffee.

2011-11-23T10:43:00.001-08:00

It's Thanksgiving. I will be preparing food all day today so that tomorrow is less crazy. Things are not perfect but they are good and I'm thankful for that. I wish Eddie was going to be here, but I'm thankful he and Grace will be together. I wish I could see my mom, my siblings and their families, but I am thankful to have Steve's family coming. I wish the table were already set, but I am thankful to have everything I need to set it.

I am also thankful for:
family, friends, nurses, therapists, teachers, classroom paras, bus drivers, administrators, doctors, my dog, my health, music, crisp fall weather, my city, my house and all the crap inside of it, my dream car (a wheelchair van), turkey,all the trimmings. an over sized refrigerator that is stuffed to the gills, Maggie's joy and her attempt to make noise when she laughs, the Internet, television, books, the smells the house will have all day tomorrow, good wine, average wine, leaves for the table, Thanksgiving colors, people who read my blog, my sons, Eddie's girlfriend Grace, my husband who still makes me laugh, and laughter itself.

Most of all, though I am thankful that no one at my Thanksgiving table plans to go shopping at midnight and that we won't lose one holiday preparing for the next.

Off to chop!

Do something good

2011-11-22T12:11:00.001-08:00

Why is it only the bad days that stick in our collective memory.

November 22. It's STILL one of those days. In 1963 I was in the second grade lined up (arms distance) to come in from recess at Our Lady of Mercy School when Father Power came out of the Rectory and said something to the nuns. I remember one nun started to cry. I had never seen a nun cry and was amazed by that.

We filed inside and learned the President Kennedy had been shot. We watched the television on the large rolling stand in the classroom. When they said he died, they sent us home. I remember walking home in an eerie quiet. There were no cars on Southgate Avenue, something I then thought of as a busy street. I remember thinking my dad was going to be mad about this, because when you are seven years old your entire world is your parents world.

I don't know why I was walking alone, not that I was concerned about that. It was a calmer time and seven year olds walked home alone all the time. I just wonder why my sisters weren't with me. Three of us went to the same school. Maybe they sent the little kids home first. Funny, I remember some things so crystal clear and cannot explain others.

What amazes me is that you have to be about my age to even remember that day at all. It was day that changed everything and no one under 50 could possibly remember. Weird. My parents spoke of Pearl Harbor but that was ancient history when I was a kid. Same effect here.

There have been other days. Everybody remembers where they were when the space shuttle exploded and, of course, nothing can compare to September 11. But that was 10 years ago and probably anyone under 13 doesn't remember that. Time marches on. New things happen to define our world.

Maybe the next one will be something good.

Do something good today.

Home again home again, jiggity jig

2011-11-20T11:01:00.001-08:00

Maggie is home and fine. We came home Saturday around noon. There was no reason to stay. There was really nothing from which to recover. After all that it was a bit of a non event. The highlight of the stay was a visit from Tim on Friday evening. He climbed right in bed with Maggie carefully moving tubes and wires.

For the past 18 months we have lived under a cloud. Maggie had a life threatening condition. Maybe it had been there a long time, maybe it was newly formed. It was a time bomb and was going to effect her life. It certainly explained her continuous difficulties and symptoms that would not go away. We waited and waited for something to happen, but gathering all the needed specialists took months. Finally we had a game plan, but then the surgeon declined to get involved. Back to square one, a little more bruised and frightened and more than a little angry.

We found other surgeons who proposed a minimally invasive procedure that might help. We jumped at it. We knew it might not work, but we had to give her every chance. I worried that we were going to cause more harm than good. I worried that it would not work. I worried that we would get even worse news. I worried that we were playing with fire. I fretted and wondered but decided to proceed.

Everything was arranged around this surgery. We arranged it to happen after our German visitors left because that was just too much of a cultural exchange. Once we had a date, everything was focused on the weekend. Though he has gone every year since I've known him, Steve declined tickets to the Big Game (Cal/Stanford for those of you not in the Bay Area). I declined a couple of invitations to things so we could focus on Maggie. Of course we canceled the school bus for this week so Maggie could recover from this delicate procedure.

The procedure was Friday. They went in and were done in 40 minutes. The condition did not exist. There was nothing to fix. I guess that's good news, but her symptoms will not improve because this problem is not the cause. The doctors who declined to help her any more made that decision on erroneous information. All that anguish and anger were for nothing. I am more than a little irritated.

It's Thanksgiving week and I am trying very hard to focus on the grateful part of this story. I am very grateful that Maggie does not have this condition. I am very grateful for the surgeons at Stanford who were willing to go in and try to fix it and let us know it wasn't even there. I guess I'm grateful to know who I can depend on when the going gets tough and who will walk away.

I'm also grateful that it rained so hard last night and Steve didn't mind watching the Big Game from the living room while he folded laundry. I'm grateful for the uninterrupted sleep I got Saturday afternoon and evening even though I missed the two events.. And even though it's too late to arrange for the bus this week, I am grateful that Maggie can go to school on Monday and Tuesday.

Mostly I'm grateful that it is over and Maggie is fine and that black cloud that has been hanging over her head for 18 months is finally moving on. Or was never there.

I'm grateful the worst thing to come out of this surgery is frustration.

Checking in

2011-11-18T13:21:00.001-08:00

Maggie's procedure went well. We are sharing her bed in the ICU, but she's a total bed hog. She's still a bit Dopey from the drugs, but I'm Grumpy so we complement each other nicely.

Sweet Sydney

2011-11-17T14:20:00.001-08:00

Maggie received a gift in the mail yesterday. That's a fun thing for a random Wednesday. Of course Ms. Maggie tends to receive gifts fairly often. This is her third gift in a week. Her aunt and uncle sent a t-shirt from Notre Dame University. She loves it. Over the weekend her brother Eddie gave her a cool Felt Bicycle shirt, so Maggie looks very cutting edge. All three gifts were great, but the one on Wednesday was very touching.

She received a book from her cousin Sydney.

Sydney is actually the daughter of Maggie's cousin Kelly. Kelly is the first of the 20 grandchildren and Maggie is among the last. The age spread is just about an entire generation. Sydney, the first of the NEXT generation will be 11 next month so she is much closer to Maggie's age. Sydney and her family live in Montana and we've really only met the kids, including Sydney, a couple of times. When they come to California they naturally go visit their grandparents in LA not crazy great aunts and cousins in San Francisco. I did write about a visit they made her a couple of years ago. That was a great time. (Maggie World: Big Sky Invasion)

Sydney sent Maggie a book entitled Out of My Mind by Sharon Draper. This book is a novel for kids about a girl very much like Maggie. We plan to read it to her while she recovers from her surgery tomorrow. The book itself is great, but the sentiment is even better.

Sydney wrote this inside the cover:

Dear Maggie, When I read this book I thought of you! The main character is Melody. She is sweet, kind, loving and SMART, just like you. Love Sydney.

Then she decorated the page with a Glittery version of "MAGGIE" (hard to see because it's neon green)

Maggie grinned from ear to ear when she saw it and ran her fingers across the glittery letters.

I almost started to cry. It was so heartwarming to receive this and to know it came from Syd's heart, which is obviously quite large. Maggie is very lucky to have cousins like Sydney and her sisters who don't let little things like time and distance interfere with thoughtfulness and family.

I wish I could think of a clever book to send back but I am unaware of a book with a heroine so sweet and generous and thoughtful. If Sydney is indicative of the next generation I think we can all relax a little bit about the future.

No guts, no glory

2011-11-14T22:06:00.001-08:00

I need to lighten things up. Just so you know, we are not hanging crepe around here. Life goes on just as before. We did go to a different surgeon and Maggie is indeed having surgery on Friday. We are hopeful it will fix her problem and allow her to ward off pneumonia and bronchitis this winter. Time alone will tell. We are delighted that she is getting a chance. That's all we wanted.

I am flabbergasted, disappointed and angry at the effort it took to get here. This is not a game. But now we are here and we are moving forward.

Today we met with the new surgeon. All of our questions have been answered to the extent possible. We are on some uncharted waters here. The surgery itself should not be problematic, but the success of the procedure is in question. Time will tell.

We are still the immature goofballs we always were. Take for example the way we left the exam room. We had to wait quite a while and both Steve and I were looking at the poster with the entire digestive system on it because just when you think you understand anatomy, you are wrong. We laughed at each other for being such nerds trying to figure out how our guts work.. I said, "Hey, No guts no glory."

That really sums up this whole episode and Steve liked that and decided we needed to leave the sentiment on the poster. Not defaced, mind you, just a post it note. Here's the poster and a close up.

I wonder how long it will take them to notice.

Quantifying Quality

2011-11-14T10:08:00.001-08:00

This is something I've wanted to address for a long time, it is an important issue and I'm not trying to solve it, just to address it.

(image grabbed from http://www.utoronto.ca/qol/)

Peoplecome in all shapes, sizes and colors. They have many different religiousbeliefs, political beliefs, socio-economic situations, education levels,talents and abilities. They live in cities, suburbs, small towns and ruralareas. I am an overweight middle-agedmiddle class white woman with a graduate degree living in the middle of a bigCity. Do I have the same interests as a slender young Asian male with a highschool diploma living in the suburbs? Probably not. Is my life better than his?I might say yes. He might say no. We would both be right because neither of usis in a position to judge the quality of the other person’s life.

Thequality of an individual’s life is subjective. It is unique to that person. Nevertheless,quality of life is measured all the time. These measurements use objectivecriteria and apply it generally to make a determination. We hear Magazines andsurveys rate places on their “quality of life” score. For places that seems tobe a combination of the weather and the number of universities and opera housesin the vicinity. The objective criteria, the weather and the arts – are predictorsof the quality of life, because presumably most people want nice weather andaccess to the arts. However, if you like rain and hate opera that measurement doesnot mean much to you. Maybe you choose to live in a place because you ran outof gas in that town and found a job there. Turns out the people were nice andyou made a life there. You still decide what brings quality to your life.

Applyingthe objective criteria in a magazine survey is harmless and fun to read –especially if your area makes the “best” or “worst” lists. There are otherareas, though, where it can be dangerous. When individuals or institutions decidefrom an objective standard that your quality of life is not good, and they havethe power to affect your life, the results can be disastrous. I am talking, ofcourse about healthcare.

There are legitimate “quality of life” issuesin health care. Healthcare providers and patients will address quality of life issuesin making healthcare decisions. If a treatment will take pain away a patient’squality of life may improve. It is an important factor for patients to consider in deciding whether to undergo treatment. Itis the patient’s unique life. Only the patient knows what the quality is andwhat will improve it.

Yes.Some things are obvious. Less pain will increase almost everyone’s quality oflife and it is safe to make that assumption. Many things are not so obvious.Other circumstances will have an impact. Taking the drivers license away may have lessof an impact on the quality of life of a person who lives in the city with easyaccess to public transportation than it will to a person who lives alone on afarm. It depends on the individual. Itdepends on the life they are living.

Ican safely say that most people would not want to be in Maggie’s situation. Sheis totally dependent on others for every need. For most of us that would be adevastating and unacceptable change in our quality of life. For Maggie, though,THIS IS HER LIFE. It is the only life shehas ever known; and I can tell you first hand, the quality of her life is differentfrom yours and mine, but it is great. She is happy, loved, comfortable, painfree, smart, educated, engaging and entertaining. Often times I envy her forthe joy in her heart.

Peopledo not know that to look at her. They do not see the joy (unless they wait 30seconds). They see the wheelchair. They see the trach. They do not see Maggie. Ifthey did, they would know. Maggie is joyfully living the life she was given.She is living it to its greatest potential. If that is not quality, I do notknow what is.

There have been several instances wheredoctors do not want to treat her based on her quality of life. They measureher life by their own subjective criteria and find it unacceptable. It issnobbery. It is bias. It is discrimination. Then Maggie does something tosurprise them. She smiles or makes a crack on her dynavox and they look at herfrom a different angle. Generally, ittakes them about 10 minutes to realize the mistake they have made. (The brayingmother in the background may help or hurt – never sure which)

Recentlyand for the first time one doctor did not change his mind. Maggie needs surgeryto address a life-threatening problem and he refused, requiring us to changedoctors. He decided Maggie’s quality of life was too low to try to save. Hemade a decision that Maggie is not worth it.

Heis wrong.

Welcome to adulthood. Now go away.

2011-11-12T08:07:00.001-08:00

Several things have happened over the past months that I havenot addressed because they were too raw or too unbelievable. I wanted to thinkthey were isolated incidents; or perhaps examples of extreme bad manners or lackof sensitivity or respect on the part of individuals. But they were not.

I haveto face facts. Maggie is a problem to the system and the system does not mindletting me know that.

This was summed up best by an inelegant presentation I wentto regarding transitioning care from the pediatric service to adult care.Obviously this is an issue that interests me as Maggie approaches her 18^thbirthday. The individual was speaking to a group of parents – and he KNEW hewas speaking to a group of parents. As he started his presentation he spoke ofthe disjointed way transition issues are handled now and noted:

“It’s problematic because these children are living longer.”

My head snapped up. I had been looking at his handout andthought I heard him wrong. Another mom at the table quickly called him on theremark. She said, “it is NOT problematic, it is wonderful and amazing and youare talking about OUR children.” He was unfazed by the correction.

Bending as far as I can to give him the benefit of the doubt,I believe he was trying to say there is nothing formal in place because medicaladvances outpace the infrastructure and patients (like Maggie) survive todaywhere they didn’t even 10 years ago. Withthat extremely generous interpretation I have to agree with him. But I also believehe spoke the truth. It is problematic for the system that these childrensurvive and the fact that a representative would say that to a group of parentdemonstrates the callousness of the system.

I spoke up from my end of the table because my daughter isthe oldest and perhaps most complicated (or in the eyes of the system “most expensiveand most problematic”). I told the group that I have witnessed the shift firsthand. While doctors used to marvel at Maggie’s history and her charm andintelligence, I now get lectures about quality of life*, and not in a good way.

In denying to undertake a surgical procedure* that Maggieneeds, the surgeon said to me,

“you didn’texpect her to live forever, did you?”

Well, no, I suppose I didn’t, but (demanding parent that I am) I do expect herto be given every chance to live as long as she can.

Maggie has become a burdento the very institution that saved her life over and over and over again. Medical technology and advance have been able to save thelives of these children, but cannot make them function as others do. Still,Maggie functions very well. She isliving the life they saved. Instead of patting themselves on the back as theyshould, the system is turning its back on her. Talk about problematic.

To say this makes me sad is a wild understatement.

*The concept of “Quality of life” deserves it own post andnot ALL doctors or institutions feel this way. My amazing pediatrician does notand arranged a second opinion. Maggie is having surgery next Friday. More aboutthat to follow as well.

Gratitudes

2011-11-10T08:15:00.001-08:00

There are a couple of things that have happened lately that have been rattling around in my head. They are of the deep and meaningful variety so I am trying to get to a point where I can convey them appropriately. I think I have a framework now, and will start posting about those in the next few days.

In the mean time, my promise to list my gratitudes needs a boost. Today I am grateful to all of you. I want to say thank you to all of you who read about our lives. I was just looking at the stats for this blog and there are over 50,000 page views since Blogger started tracking these in 2009. I know that's not all from my mother and I am grateful that people give us a little of their time. An old friend called me yesterday and told me that I make her laugh or cry when she reads this. I love it when I learn that someone is reading and knowing its having an effect on someone is even better.

And just so I don't forget tomorrow. Thank you to all the Veterans out there who have served and sacrificed so that I can have the freedoms I do.

2011-11-09T15:31:00.000-08:00

Today we say Auf Wiedersehen to Vanya and Betty. Their stay has come to an end and they are headed back to Germany this evening. It has been a great three weeks and I'm glad they stayed with us.

Betty asked if Maggie could come to Germany when the San Francisco kids come in May. I wish that could happen, but it's just not possible. (But I am giggling at the thought of going through TSA security with the suction machine and the cans and cans of her food pleading ,"No, really sir, she needs more than 6 ounces of liquid for the 10 hour flight." I think I would suspect us because it's too ludicrous to be true. )

The morning madness will settle back to its normal overdrive level. We have been in super duper overdrive adding lunches and a ride across town to the already unbelievable mix. The other day I was making lunches and maggie was banging on her bed which is her way of "calling" me. I said, "just one minute Maggie. you are NEXT on my list." I heard the night nurse start to laugh because Maggie made a face. The nurse said, "oh no, she did NOT like that. This girl needs to be FIRST on every list."

Other than the mornings, though this has been fairly effortless. We were lucky to get such lovely your women to join us because they made it so easy.

We will miss them and wish both young ladies well as they travel home to their families and friends. I hope they know they have a little of both right here in San Francisco if they ever want to.

Weekend update

2011-11-07T13:16:00.000-08:00

Good thing we gained an hour this weekend, because we were busy!

Any change in the schedule causes a ripple effect. When the whole country shifts back an hour it takes several days for us to catch up. Add in our busy weekend and forget about it! Maggie fell asleep an hour early last night and by the time the nurse arrived at 11 all of us were sound asleep in the living room.

My posting has been slow of late. We have been very busy entertaining Betty and Vanya. In fact I think I'm using the extra hour to write this. On Friday night we went out for Chinese food, Saturday we went to the Legion of Honor to see the Pisarro exhibit, they toured Fort Point and then we had a picnic at Crissy Field. The rain was threatening all day, but held off

Yesterday we went to Ghiradelli Square. We felt it was out obligation to show our guests the Chocolate factory, or the remnants of it. We hadn't been there is a very long time. I remembered why when we arrived. It its the LEAST accessible place in San Francisco. Multiple levels with one elevator that comes four steps above ground level - WHAT??!?!?!.You have to call a security guard to unlock a lift to get up those stairs to get to the elevator that takes you to a bunch of shops that cannot fit a wheelchair. Even in the chocolate factory itself you could not maneuver with a chair. I'm sure they don't get many in there, but I can tell you there's a reason for that. All in all a colossal fail.

We wandered around Fisherman's wharf and stopped in at Cost Plus. It's always important to take visitors to our city to a store that specializes in imports from around the world, including Germany. Oops. Still they had fun.

Maggie loves to use her dynavox to say hello to each of them and they have become very adept at responding, even when she says hello 20 times. Maggie has them well trained.

It is hard to believe they will be leaving us in a couple of days and things will go back to "normal." There are still so many sites I want to see!

P.S. I forgot my gratitude for today. I am thankful that this experience has been so positive - but I am also thankful that tomorrow is election day and all the phone calls and junk mail will stop for a while. If you are in SF., don't forget to vote tomorrow.

Too Much Reality

2011-11-03T10:00:00.000-07:00

Many years ago, a film crew was following various doctorsaround for a couple of weeks for a documentary on health care. The plan was fora two or three-part show on PBS featuring actual situations in children’shealth. I suppose it was a reality showbefore the genre existed except, of course, there were no prizes or gimmicks. One of the doctors they followed was our pediatrician,Eileen Aicardi. Since we were at least weekly visitors in those days, theyasked if we would agree to allow them to follow Maggie. That meant I agreed if anything happened theycould come and film it. I said sure, why not.

Something did happen. Maggie got very sick with pneumonia andhad to be hospitalized. Pneumonia is oneof those things that gets worse before it gets better. I thought we couldhandle things at home, and we did for a while, but they got out of controlpretty quickly. I had been up all night with her and knew I was in over myhead. I called her doctor about 6:30AMand told her we were going in. I couldnot drive her by myself because she needed hands on care. Our choices wereeither to call an ambulance or wake the boys and have Steve drive us. It was a Saturday morning, so we had to dragthe boys with us

By the time Maggiewas in her hospital room it was an “all hands on deck” situation. Maggie was in the bed, the respiratorytherapist and I were working feverishly to keep her airway cleared and keep theoxygen on her. Steve was keeping the boys in line and arranging Maggie’s equipment.The film crew arrived with the doctor and started filming everything. I reallydid not care; my focus was on Maggie. Besides, if they wanted reality, theywere getting it.

The small hospital room was very crowded. Maggie’swheelchair takes up a lot of free space and there were at least a dozen peoplein there. The boys were young and they were playing with the controls on theempty bed next to Maggie’s, oblivious to all the action. (They were already oldhands at this stuff). In addition there was the cameraman and three others fromPBS, the doctor, the RT, the nurse, the charge nurse, Steve, me and of course Maggie. We were suctioning, repositioning, fixingthe oxygen and comforting Maggie every second. It was not a pretty site.

We had been working like this for about 45 minutes when suddenlythe absurdity of the situation hit me. I was exhausted and worried and therewere cameras, strangers, and more activity than I could even process. I looked up as if I saw it all for the firsttime. The charge nurse, who I knew, caught my sudden realization. She wasbehind the camera. She grinned at me and started waving a lipstick in the airas if to tell me I had to look good for the camera. I started to laugh and hadto turn away.

When the show aired on PBS Maggie and I were left on thecutting room floor. This did not surprise me. I cannot imagine it made for goodtelevision.

If only I had grabbedthat lipstick.

Gratitude: I am grateful for the nurses who have cared formy daughter under the most extreme circumstances and cared for me in the mostunusual ways.

Gratitude

2011-11-02T08:52:00.000-07:00

November means Thanksgiving. Thanksgiving means gratitude. I think it's time for a gratitude adjustment.

I am grateful for so many things in my life large and small. I'll start with a few: my healthy sons and their sense(s) of humor, my tough and resilient daughter who amazes me every day, my husband and his creativity, my family, close and extended, especially my sister who is celebrating her birthday today, my city which is beautiful and warm as November begins, my health, my exchange students for their energy and cheerfulness, and so many other things.

So just for today no complaining about insurance companies or access or any other problems. That will resume, believe me, but it will be followed by a daily gratitude, just so I can remember to make the most of November.

War on Drugs

2011-11-01T14:50:00.000-07:00

There's a wind blowin and I live in a house of cards. The powers that be are messing with my imperfect but functional and very tenuous setup for getting Maggie what she needs. Somebody needs to FIX THIS and SOON!

About a month ago we learned that our health insurance carrier Anthem Blue Cross was Walgreens have not agreed to new contract terms and when the current contract expires on January 1, 2012 we can no longer get our prescriptions at Walgreens.

WHAT?!?!?!? This cannot be. I have been using the Walgreens at California and Spruce streets since Maggie was born over 17 years ago.( I used them before that too, but just for the occasional prescription we needed when we were a four healthy person household.) I know all the pharmacists and assistants and over the years have gone through more techs than you can count. I know that I can get a refill when I need it, even if it's impossible to get a hold of the doctor. They know all 16 of Maggie's medications and now have most on an auto-refill basis. Just this morning the night nurse told me we were out of Atravent and I said, that means there is a box sitting at Walgreens waiting for me to pick it up. And indeed there was. It works.

Walgreens is pretty much the only game in this town. San Francisco is 49 square miles and by my count there are 63 Walgreens locations. (count for yourself here). When I talked to Anthem Blue Cross about this today I asked where we are supposed to go. He suggested Target - nope there isn't a single one in SF. CVS? I know there's one downtown, but it's not realistic to drive 5 miles and pay an arm and a leg to park every time I need to get some meds because it can be three or four days a week. Anthem does have a mail order service for prescriptions, but that requires using one service for her "specialty medications", a separate service for her regular medication and a local pharmacy for her antibiotics and urgent care meds. I cannot have three separate pharmacies.It will be impossibleto keep everything straight. I already have three medical supply companies to deal with, but if somethign screws up there I can purchase most of the stuff over the counter. I can't do that with regulated medications. Wehn he asked if I was interested I said, "No. That makes my life more complicated and it's complicated enough already."

I don't know who is at fault here, but one of these two giant corporations needs to blink so I can keep things straight and get Maggie what she needs without increasing the burden. I want to continue to get her drugs from my neighborhood pharmacy, even if it is part of a giant corporation. I know all the cogs in that part of the wheel. I don't know a single cog in the Anthem wheel, which may be by design. Every single time I have to deal with them I have to re-invent the wheel. For that reason alone, I believe Anthem needs to blink. Walgreens actually provides some service to the policyholders along with the medication. That's a concept Anthem seems to have lost along the way.

This is a hassle for every anthem Policy holder that uses Walgreens and I'll bet in San Francisco that's 99% of the policy holders. FINALLY Maggie's with the majority on a health issue.

It's time to occupy someplace because we ARE the 99%.

Queen of the Nile

2011-10-31T07:41:00.000-07:00

When I was a kid, Halloween was all about the candy. Costumes were simply a vehicle to get those bags filled. For Maggie it's all about the costume.

Halloween is Maggie's favorite holiday. She cannot trick or treat because of the stairs, and even if she could get to the front doors, she could not eat the candy anyway. Still it's her favorite. Perhaps because her father is a creative genius. This year is no exception. Steve may have outdone himself this year.

Maggie is Cleopatra and her wheelchair is her throne guarded by the Falcons.

Now THIS is a costume befitting Maggie

Lest you thinks any details are missing, note the scepter and the flail as well as the Ankhs lining her tray

Vayna and Betty, the exchange students are embracing this uniquely American Holiday

And here is Gepetto, our resident toymaker, putting the finishing touches on his creation

Her teacher Mr. Garrido (center) and classroom paras (aides) Laura and Eva were ready to welcome her into class

Hope everyone has a great Halloween, candy or no.

German Invasion Day 9

2011-10-28T09:43:00.000-07:00

Our exchange students Betty and Vanya have been with us for nine days now. I believe they are enjoying themselves and getting a lot out of their visit. I KNOW we are. It's an amazing thing that in such a short amount of time these girls have become such a part of our lives.

Vanya and Betty are in a group of about 14 students who came from Germany. The kids are spread out among various host families connected with the high school. Most of the host families have students at the school. Our connection is more tenuous, my brother is a teacher there. I was glad to get two students (who are already good friends) because they don't have a host student in the house. Maggie attends a different high school and, though you may find this hard to believe, she is not that hip on the social aspects of being a San Francisco teenager.

Betty went with the rest of the visiting German students to Los Angeles for four days. Vanya stayed in San Francisco. It was interesting to watch Vanya adapt to school and to us without her friend around. Of course she did great. But when Betty returned last night, I realized how much I had missed her and saw how happy Vanya was to have her back again. It was a sweet reunion for all of us.

These girls are 16 years old and I can tell you that teenagers are teenagers regardless of their country of origin. They giggle and converse and give each other a bad time. Vanya told Betty that she (Vanya) was now our favorite daughter because she bonded with us while Betty was in Los Angeles. Betty just stuck out her lower lip in reply and we all laughed. They joke with each other and with us and even get Steve's sarcasm. It feels like the energy level in this house has increased in a very positive way.

In addition to the constancy of teenagers, there is also the constancy of parenting. Steve and I find ourselves worrying about them and wondering where to set limits. There has not been any issue whatsoever, but there is a dance at the school tonight. Also Halloween is Monday and they are invited to any number of parties. Fortunately it's a school night so they won't go too crazy.

You have to realize that the only teenager in this house now is Maggie. We have many worries about her, but heading out to dances and Halloween parties unsupervised are just NOT among them. I worried about stuff like this with my sons too, but let's face it, the issues are different with boys than with girls. Also, I had known all of their friends for many years and knew what to expect. I also knew their friends parents and could track them down with relative ease.

It's been several years since we've had to consider these issues. We will figure it out, but we are realizing that we both feel somewhat energized by the circumstances. I just have to keep Steve from roaming the streets on Halloween looking for any signs of mischief.

Talk about scary!

Red Tape for $500 Alex

2011-10-27T11:11:00.000-07:00

Medical drama for Maggie. She's fine, but she had to have a brain scan on Monday. It was clear.

I dealt with some of the best specialties available, anesthesia, post anesthesia care, neurosurgeons. But no one could help with with a HEALTH issue. Perphap medicine is a bit too specialized. No one can address the whole PATIENT. And when you have a Maggie, with multiple problems, I need someone to think about the whole person, not just their specific specialty.

Maggie had to be anesthetized for the scan because she cannot stay still. She was out for about 5 minutes, if that. Even though it was short, they had to send her to the recovery room. That was a first - generally they just let her wake up and I take her. Maybe they used different anesthesia. No one could explain the change - why would I want to know? I'm only the mother.

While in the recovery room she developed a separate, unrelated but acute and dramatic issue, one that required medical attention. Good thing I was already in the hospital, or so I thought. I quickly called the nurse who looked very alarmed and asked if this had happened before. I told her it had once before but she was already an inpatient at the time. The nurse looked through Maggie's paperwork and said "But that's not what she's here for." Right, this is a new problem. "Then I suggest you call your primary care doctor immediately."

I was dumbfounded. I'm sitting in a hospital, Maggie is bleeding from places she should not be and I can't get help.

My primary care doc is at a different location. We had an appointment with the neurosurgeons after the scan and I could deal with everything at this place. I said perhaps you should call someone who can help her now and the said I really don't know who to call. I gave her the name and department of the doctor who would handle this problem but it wasn't going to happen. I had to leave Maggie in the recovery room to go out into the hallway to call the other specialist's office to get the test ordered. (no cell reception in the recovery room). Even that office were reluctant to do it becasue they could not fit Maggiein that day and would have to charge for an office visit. I said, I have already collected the sample, I just need an order for it to go to the lab. Done - reluctantly, but done.

Now it's been 72 hours since that happened and I still haven't heard form ANYONE up there about this. I called my pediatrician (and good friend) less than 24 hours after the tests who got the results and started the antibiotic immediately. Maggie has now been on antibiotics for 48 hours, not that anyone at the hospital knows that. By the time the specialists deal with this Maggie will be an old woman. If they ever heard this story they would shrug and say , well it all worked out. Yeah - no thanks to you or anyone else up there.

I get that specialized medicine is necessary. In fact I know the specialists have saved Maggie's life on numerous occasions. But some common sense should be injected into the equation at some point. Should I have to machete my way through red tape to get Maggie what she needs?

Kissy Face

2011-10-26T15:46:00.000-07:00

Maggie has issues with anything touching her face. She can touch her face herself, but anything else makes her wince. In fact, this is the face Maggie makes whenever she gets a Kiss, even from Tim.

Believe it or not, she actually loves it, but ooooh, that face!

Carlos Santana

2011-10-25T09:33:00.000-07:00

Maggie went to an assembly at school yesterday. Yawn. Not big news. Every high school has assemblies. However, not every high school has Carlos Santana play a concert at their assembly. Very cool.

Santana graduated from Mission in 1967 and according to one news story, hasn't been back since. Yesterday he came to celebrate Mission's accomplishment of getting an 85% college acceptance rate.Mission is making great improvement in academics in recent years. (maybe since Maggie arrived?) Here is the school principal Mr. Guthertz on the school stage with Santana. (Two men I admire for completely different reasons.)

He not only played, but had the guitar Club from the school on stage with him for at least one song. Someone from the school posted this video on you tube.

Maggie and her fellow wheelchair users were right up against the stage and she loved it. We were listening to Santana all weekend in preparation. She liked the music and especially liked the fact that I LOVED the music. During the assembly itself, the nurse said Maggie was very fidgety while Santana inspired the kids with his words. He told the kids to remember they were significant and that each individual matters. (I think Maggie already knows that she matters.) She was much more into the music.

I came to pick her up early for a doctors appointment and was talking to a reporter outside (casually, not interviewed) who was waiting for a cab. He asked if I stayed for the concert and I said, "no. I figured this was for the kids and I was afraid I would embarrass myself because Santana was much more my era than theirs." He was about my age and he laughed and agreed; but he said, Santana owned that room in about 30 seconds because he related to the kids so well. His music is not generation specific at all and his personality and warmth came shining through.

Actor Edward James Olmos and director Peter Bratt were there too.

Not bad for a Monday. Wonder whats up for today?

Weekend Whirlwind

2011-10-24T10:24:00.000-07:00

This was a great weekend. the weather was perfect, both my boys were in town, we had a dinner on Saturday with my mom and my brother and sister in law and I didn't lose any exchange students.

My son Eddie and his girlfriend Grace arrived on Thursday evening about 6. We talked for a while and I told them I would introduce them to Vanya and Betty, our German exchange students, as soon as they returned from their walk. They were due back at 6:30. When they still had not arrived at 6:45 I was getting nervous. They had only been in SF for 24 hours and I let them wander around alone. Eddie was making fun of me for being worried. I tried to be cool, but by 7:00 it was pitch dark and they were no where to be found. I started looking around in the car. I wasn't worried about their safety, per se, but I feared they were lost. Eddie stayed home to let me know if they showed up. They did at 7:15. When I came home they were all apologies, but I knew it was as much (or more) on me than on them. We ate dinner and the girls turned in, still jet lagged from the trip. An hour later the second earthquake of the day jolted the house. I made the decision right then and them to buy them a go phone (pay as you go cell phone) to use while they were here. Grace and I bought in on Friday. For $25 I have the perfect solution to my anxiety. I gave them the phone Friday after school and now know I can reach them or visa versa whenever we need to.

Steve returned from his trip on Friday night to find only Maggie and I at home. The girls had gone to a high school football game with my neighbors and Eddie and Grace were out with friends. Maggie and I were holding down the fort watching chick flicks. Within a few minutes everyone else arrived and Steve was introduced to the girls and caught up with Eddie.

Maggie and I took the girls downtown on Saturday morning to meet up with one of the host students, who was going to spend the day shopping with them. I picked them up later in the afternoon, stopping in the middle of busy Market Street to retrieve them. I was urging them to jump in the car before a) I got a ticket and b) the Occupy San Francisco people enveloped us. Vanya and Betty were fascinated by the protest because they said they don't have things like this in Germany. It was a good opportunity to explain both the academic - the importance of free speech is in this country - and the practical - how you don't want to be stuck in traffic because of someone else exercising that right.

Maggie is thrilled having visitors. She is calling them by name via her dynavox. When they first heard her say, "Vanya and Betty, hello!" they were taken aback but delighted. That helped them "get" Maggie a little better. She doesn't always appear to be engaged, but she is listening and paying attention all the time.

Maggie was even more thrilled to have BOTH brothers home at the same time. Tim came by on Saturday and Sunday morning and I was able to get a picture of all of them together. This is becoming an increasingly rare occasion.

Culture!

2011-10-20T10:09:00.000-07:00

We are hosting two German highs school students for three weeks. They arrived yesterday and everything seems to be going very well. The two girls, Vanya and Betty, are already good friends in Germany, so they are very pleased to be rooming together. They are lovely, polite, speak perfect English and think everything is great. That's the kind of house guest you dream of. Here they are leaving for school this morning and saying good bye to Maggie.

We've already had our first cultural exchange. I asked if there was anything they wanted to eat or didn't want to eat so I could stock the groceries accordingly. Vanya mentioned last time she was here she had some lovely cheese from Philadelphia that was very creamy and wold love to have that again. I said, Philadelphia Cream Cheese? Yes. No problem. They had bagels and cream cheese for breakfast and Betty had never heard of them or tried them. Of course she loved it (how could you not?). I guess that's not technically MY culture but I think Bagels are assimilated enough that we can all claim them.

Maggie has had limited interaction at this point. The girls met her when they got home yesterday, but they could barely stay awake and were in bed by about 7:30. They will have plenty of time to get to know one another.

The new refrigerator arrived while I was at the airport (of course.) Thanks to the generosity of my friend Rose who waited at my house for the delivery men, it is in place and cooling food again. I tried to convince Vanya and Betty that my kitchen is not usually in such disarray, but I'm not sure I got that across. The plastic wrapping on the refrigerator helped me look a bit more credible. Of course now its a day later and the food is put away, but the disarray continues, so maybe it's not just the new refrigerator.

Have a grand day.

Big Day

2011-10-19T07:35:00.000-07:00

Maggie is about to get on the bus to go to school like most school days. But today is very different. Maggie is going to be the host student for two exchange students from Germany and they are arriving today. Our guests are two girls and they will be in the US for three weeks. They will not attend Mission High, where Maggie goes. Rather they are part of a program at ISA - International Studies Academy in Potrero Hill.

My brother is a teacher at ISA and they were a little short on host families, so we volunteered. The girls, Vanya and Betty, will be here for a week, then the group goes to Los Angeles, then back here for the third week. We are all looking forward to this new adventure.

I did let the organizers know that Maggie is not exactly a typical American High school student and wanted to make sure that the students placed here understood the realities. I certainly don't need to shock a visiting teenager. These girls know what they are walking into, so we don't have to worry about that. I received a couple of emails from Vanya, and it is clear her English is excellent, so we will all get along great, I'm sure.

I am picking them up at the airport and then taking them to their school for a reception. My brother will bring them here after school so they could arrive shortly after Maggie gets back on the bus.

Of course today is also the day that our refrigerator arrives and right now the counter is lined with non perishable items that have been in the fridge since it went out on Saturday. Think about it. What is non perishable that you keep in a refrigerator? Beer, of course. And there's also a bottle of champagne.

I really hope the new one is in place and all this put away before they get home from school. I would have their first impression to be a kitchen counter lined with alcohol. They were informed about the disabilities, not the alcohol.

Auf Wiedersehen!

Memories of the Bay Bridge Series

2011-10-17T21:42:00.000-07:00

Twenty two years ago today I was sitting at Candlestick park waiting for Game 3 of the World Series to start. The Giants were playing the Oakland A's in the "Bay Bridge Series" The Giants were down 2 games to none but this was the first home game and we were sure things were gong to turn around. The crowd was excited and anticipation was building for the game to start.

It was the first (and only) World Series game I ever attended. We had gone in on a "strip" of tickets with some guys I worked with and we were able to go to one of the playoff games and one World Series Game. If it went to 6 games we would get to go to two. The Giants had to win so we could come back again. We actually had great seats, which was funny because we were not season ticket holders. We just sort of lucked out. Section 10 under the overhang just behind third base. We met the couple next to us at the playoff game and of course they were back for the World Series. They were entertaining and hilarious and this was going to be great.

At 5:04PM I felt the place starting to shake. I grinned thinking it was the people above me stamping their feet but realized immediately that only happened in bleachers, not in concrete stadiums. What was this? My eye went to a television cameraman who was standing in a "cage" handing off the mezzanine level. It was there just for the World Series. I watched him lose his balance and hold onto that side of that cage with all his might.He looked frightened but for a split second I didn't know why. At that very moment the ground under me felt like it was undulating. I looked at Steve and we just rode that earthquake out. It was easily the biggest one I've ever felt before or since. We were experiencing the Loma Prieta earthquake which was 7.1 on the Richter scale.

Immediately after it stopped there was dead silence and then a ROAR arose from the crowd, It was really almost a cheer. I learned later that Atlee Hammaker, a pitcher for the giants said, "That was the tide turning." Everyone was still focused on the World Series. The Giants were going to turn it around for sure now. The immediate shout of relief, fear, exuberance, whatever, quickly gave way to concern. The television the guy in front of us had been watching lost its picture.

I was about 8 weeks pregnant with Tim and perhaps a teeny bit more emotional than most people there. I told Steve I wanted to go home. Eddie was 18 months old and my friend Anna was watching him. I just wanted out. Steve said we just have to wait. I begged him to move out from under the overhang. Steve said "that's reinforced steel and concrete, it's not going anywhere." Just then the picture can back on the man's tv and we were looking at pictures of the collapsed Bay Bridge. I looked at Steve and said, Oh, really? Whats THAT made out of?" We moved.

It wasn't necessary. Candlestick park was not collapsing. The game was called off, of course and we made our way back to the car. It took three hours to get home - in fact it was 1.5 hours just to get out of the parking lot. I was frantic, but outwardly calm. Everyone was. it was a beautiful day. Spectacularly clear. We could see the smoke in the Marina from the fires. We were listening to disaster reporting. That was strange. They were talking about US, but we were fine.

Power was out everywhere. It was a long slow trip home.We kept hearing the same reports over and over. There was no discussion about our neighborhood at all. I said that's probably good news - or the entire place is gone and there's no one to report it. (Still not quite as calm as I could have been.) As we drove through the Richmond District, I saw lots of damage especially at the corner houses. As we neared Anna's house I saw a crowd of people at an Irish Bar on Geary. It was powered by candles, but the place was packed. I considered this a good sign. We retrieved Eddie who told us about BIG SHAKES. (He was also mad that Anna had stolen the batteries out of his toy to use in a flashlight).

When we arrived at home my brother in law Jim was sitting on our front steps, his finger stitched up from glass falling on him. He couldn't make it across the Bay to Oakland where his wife (my sister Kate) and her (then) three kids were waiting. Somehow they had connected by phone, so each knew the other was ok. Jim said he walked to our house from downtown (probably 4 miles) because he knew it would be standing. Steve had bolted the house to the foundation a few months before. He and Steve started eating the melting ice cream and drinking the beer that was getting warm. Eddie needed to go to bed so I laid down with him and listened to my Sony Walkman for updated reports. There weren't any. It was too early.

In the light of day we learned more about he Bridge collapse and the people killed there and on the freeway in Oakland. We learned about the extent of the fire in the Marina and learned of more victims there. In our house we saw that a few things had broken - but just a few. The fish tank had sloshed over and damaged the wood floor, but that was it. We felt very very lucky.

The World Series continues a few weeks later, but nobody really cared anymore. There were bigger tings to worry about. The Giants lost the series 4-0 and didn't return until 2002 and didn't win it until 2010. I didn't even make an attempt to go to the series in 2002 or 2010. I think my one experience at a World Series game was enough

Luxuries

2011-10-17T08:14:00.000-07:00

There are so many worries when one is a parent. So many. All of us want the best for our children and all of us worry and fret over roadblocks to achieving the best. That is the same for every parent.

The difference is the measuring stick. What's best for one child and one family may be unthinkable for another. For some children there will simply never be worries about "normal" things. In fact normal worries become luxuries.

This piece in yesterday's New York Times is so elegant and eloquent that I have to share it. You can link it or read it below. My favorite line in this piece sums up everything I've tried to get across in this blog:

We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

I tip my hat to the real Dragon parents out there.

Notes From a Dragon Mom

Alexandra Huddleston for The New York Times

Emily Rapp and her son, Ronan, who has Tay-Sachs disease.

By EMILY RAPP

Published: October 15, 2011

REPRINTS

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Costume teaser

2011-10-13T07:25:00.000-07:00

Our terrible Tuesday spilled over into Wednesday a bit. Maggie went to school but she couldn't make it. I had to go get her at 11ish. I think the stress of the day before was just too much. I was worried she was really in trouble, but after a couple of hours she was back to herself again.

The trauma of the tests on Tuesday was not wasted, though. I spoke with the doctor yesterday and they obtained some good information that may end up helping Maggie. Fingers crossed. We talked about timing for scheduling the next procedure. I specifically asked if we could do things after Halloween. Maggie does Halloween in a very big way and she missed last Halloween because she was undergoing medical tests. The doctor was completely on board with that, so we have a breather for a couple of weeks.

The Halloween costume is under construction as we speak.Steve always does an elaborate decoration for her chair and this year will be no exception. You will have to wait for the big reveal. Maggie and I went to the Halloween store to focus on her costume and I think you will be wowed. As we wandered through the store I had to laugh at the political masks on the wall. Maggie fit right in.

Just to keep you entertained, I am reposting pictures of past costumes. These are all Steve's creations.

2004 Hell on Wheels

2005 Leprechaun, complete with the pot of gold at the end of the rainbow

2006 viking with her own ship

2007 Race Car Driver (and her nurse came dressed as a pit crew worker)

and the Chef in 2008, (my personal favorite). The oven door rally opened

2009 Pirate

As noted she had to skip last year but she will be all ready for 2011. This year the costume really fits the Maggie we all know and love.

Stay tuned!

What do you DO all day?

2011-10-11T17:34:00.000-07:00

For those who still ask "What do you DO all day," here's my day today.

Maggie had some medical tests today that meant she could not have any food after 8AM. We kept the night feeds going until 7 and then I fed her at 7:30. She had to go hungry until 2PM. That's a long time for Maggie who gets a feeding every two hours.

We headed downstairs and the school bus was 40 minutes late. I didn't call until it was about 25 minutes late and then they said another 10 minutes. We waited, but that definitely threw off my timing for the day. I took a shower, prepared paperwork for the afternoon appointments and waited for a contractor to come at 10 so he could take the ceiling lift back for repairs. He called at 10 and moved things to 12:30. Grr. Ok.

I head downtown to pick up the check for the nursing, which is available on the 11th of the month. Of course there was a mix up that delayed things for several minutes and I had to dash home to get there before the contractor. No time to put the check in the bank. I'll have to do it after Maggie's tests. He arrived and wanted to test the loaner machine. I was eying the clock because I had to get Maggie. He left, and I raced over to Mission high to pick her up.

I swear I missed every single light on the way back across town. When you are sitting at a light saying "Please turn green" over and over, you know you are cutting things close.

We get to the hospital at 1:45 and there is no place to park. No place for about six blocks. I went into the lot behind the nearby market and figured I would get a validation when I came back an hour later. It' s a little scammy, but I was desperate. We arrive on the stroke of 2 and the tests started right on time. They took a lot longer than I expected and one was HORRIBLE for Maggie. She was frantic and sobbing. I'm happy to be there to comfort her, but its very hard to watch and I feel like a co conspirator. We get out of there about 4:15. Maggie is fine, but still upset.

I walk back to the parking lot, buy an iced coffee I really don't want in order to get my ticket validated, load Maggie's chair into the car (right in front of the guy in the ticket booth) pull out and hand him the ticket. My two hour validation is expired. I need an extra $5 to get out. That's fine, but I cannot find my cash. I offer him the visa and he say no cash only. He tells me me there is an ATM around the block. There is NO WAY IN HELL I am going to unload Maggie again. I pull over so others can get by and search through my enormous purse because I KNOW there is cash in there somewhere. I contemplate making a run for it, but decide that's beneath me. I cannot find the cash. I was going to just give him my business card and tell him I would be back in 30 minutes with cash but I had to get her home for her treatments. Maggie is whimpering a bit but not crying any more.

I decided to calm down a little bit and look again. I put the coffee down on the seat between my knees, and calmly look in the various slots in my bag. I feel something cold and realize the coffee is all over my khaki pants. Lovely. Just then I find the cash. Who cares about he pants. Let's go HOME. I walk over and hand it to the guy who just looks at me sympathetically.

We get home and Maggie is overdue for her treatments. She is still upset by the NG Tube they had to shove up her nose. I don't blame her. I am too.

I hop in the shower for the second time today. Never did get that check to the bank. It has to clear by Thursday so I can pay the nurses. I will have to juggle some funds to make that happen. But that's tomorrows problem.

Now I have to go to a meeting at a different hospital. In fact I'm late.

I sure hope there's parking.

Five Finger Discount

2011-10-08T09:13:00.000-07:00

One day many years ago I took all three kids to the optometrist to purchase some new glasses for Eddie, who was then about 8 years old. We had to wait for the customer in front of us to finish so Eddie and Tim killed time trying on various frames and modeling them for each other. Some were contenders, others were outlandish and entertaining.

I could tell the woman in the store was annoyed, but I ignored her. The boys weren't causing any trouble.They weren't loud or annoying and they putting everything back were they found it. But she was irked and as a mom you can just tell when someone is not a kid person. She finally snapped at me, "they shouldn't touch those." I said very sweetly, "really? Because we're here to get him glasses and he's going to have to try them on to see what he wants." She relented, but I could tell she was still miffed. When it was our turn she was quite curt and I finally asked her if there was a problem. She told me she does not like children touching her stuff. I said, "Then perhaps we better go somewhere else." I wasn't mad but I certainly wasn't going to give her any business. We left in a very dignified way.

In those days Maggie sat in a car seat. I took her out of her tiny wheelchair to load her back into the car and to my embarrassment I saw that she had a pair of frames in her seat. While the woman was eyeing those evil little boys, their baby sister was stealing frames. So much for our dignity. Always the coward, I sent Eddie back onto the store with the pilfered frames. He left them on the counter and said, sorry, I guess my sister grabbed these. The boys and I laughed about that all the way home. Maggie was too little to know what had happened, but she was very entertained by our amusement.

Maybe we shouldn't have laughed so hard. Maggie turned into a little thief. There's no malice of course. It's just fun to snag things. Over the years there have been other things, such as hairbrushes, keys,etc that little Miss Hot Hands grabs out of pockets or off of any place she can reach. She used to hang out on the floor and would routinely take everything out of my purse, once ripping a $20 bill cleanly in half. If something small is missing you will likely find it her wheelchair. She grabs something and then drops it along the side of her legs where it stays until someone moves her. She finds it very entertaining when we say, "Excuse me madam, can you explain how this got here?" Mr. David, an aide in her class, snapped this shot of her holding his wallet.

Now she may be moving up to grand theft. The other day the nurse handed me a ring she found under the chair in Maggie's room and said, "Here, Sally I think you dropped your wedding ring." It is not mine, but it is definitely somebody's wedding set. At first I figured it belonged to one of the other nurses and just put it aside to ask each as their shift came around. It didn't belong to Josephine, Fely, Etoy, Lucy or Joy. I have a house keeper that comes every few weeks and she brings a helper. Surely this belonged to one of them. Nope. I asked a few friends who had been over at the house. Nope. The school nurse asked at school. Nope. I showed it to Maggie and asked if it was hers and she just grinned.

We have no idea how it got into her room or how long it had been there. Obviously it could have come from anywhere. There are a lot of people in an out of this house. But my suspicions are on Maggie, aka Baby Face Nelson, the sweet looking little girl in the wheelchair who is above suspicion.

Did she take it from somebody? I have no idea. How in the world could she get someones wedding ring without them knowing it. If it was in somebody's pocket or on a counter I could see it, but who leaves their wedding ring lying around? Who else was close enough to Maggie for this to happen? Why isn't anyone missing a ring? It is a mystery, but given Maggie's checkered past, I can't help but wonder. If you are missing your wedding rings, please let me know.

But you better hurry, Maggie keeps asking about the pawn shop on her dynavox.

Mystery Passenger

2011-10-05T17:07:00.000-07:00

Our van came equipped with privacy glass. Everything behind thedrivers area is darkened glass. We are like international men of mystery. Ifanyone is interested, the back of the van is generally filled with dog hair andmedical supplies.

The privacy glass means that people cannot see Maggie, orany passenger in the back, when we are driving or even when we’re parked. I had one lady yell at me for parking in ahandicapped zone. I didn’t respond to her at all and she looked pretty stupid when the door opened and Maggiewas sitting there in her wheelchair. (Tobe honest, I rather enjoyed watching her squirm.)

If we are driving, peoplein other cars can see that I’m talking but they cannot tell if there’s anyoneelse in the car or not unless they have their face pressed against the glass (which would be creepy). I know I look like anut case talking to myself, I can see drivers in other cars eyeing mesuspiciously, but I really don’t care.

The other day Maggieand I were riding down 19^th Avenue, is a six lane “highway” right through the city.There are lights at every corner, but they are timed and if you go 30 mph youcan generally make it ten or twelve blocks without stopping. Because everyoneis doing that, you have pretty much the same people next to you for severalmiles. You can set the tone for the rideat the first opportunity. There may be a smile or nod and there may be nothing.

Maggie was in the back slamming her hand down (her sign for no) because I didn’t haveher music playing. I told her to keep her shirt on while I remedied that situation. She started laughing asBeyonce came on. I was dancing along and putting my hands up, as Beyonceordered. I was aware of the guy next to me looking at me dancing and laughingas we sat at a red light. He was trying to make me look at him but I ignoredhim. I knew I looked ridiculous, I didn't need him to remind me.

All of a sudden Maggie started having trouble. She was laughing so hard she started to chokeand her scarf was covering her trach tube making it even harder for her to breathe. I slammed the carinto park and reached back to help her. It took only a moment and I was back ready to go before the light turnedgreen. But the laughter and dancing hadstopped for the moment.

I glanced over at the guy next to me who was staring at me completelyshocked. I smiled to myself imagining what he had just witnessed. That poor guy had absolutely no idea what had just happened. He was watchingme dance around and laugh like a goofball, then my affect changed, Idisappeared behind the privacy glass for a minute and then reappeared with aconcerned look on my face, put the car in drive and was ready to go.

I just gave him one of those nods you give another driverwhen you make eye contact, as if to say, Move along now, nothing to see here.

For some reason he did not stay next to me for long. Shrug.

Salute to Laundry

2011-10-03T11:16:00.000-07:00

You cannot imagine the amount of laundry Maggie generates. There is at least one load a day, sometimes up to three. This is of course in addition to the normal amount of household laundry. I have to stay on top of it or it swallows us. Generally I start a load every morning while we wait for Maggie's bus and then do another when the bus comes back.

A couple of days last week I didn't do that and things started to pile up. The pile gets so large the task becomes daunting I find myself delaying another day, which causes the pile to grow and so on. I realized we were running out of clean scarves and I had to get things washed to replenish the supply.

Maggie always wears a scarf around her neck over the trach tube and it is not unusual for her to through eight or ten scarves a day. Maggie has am impressive collection of scarves. They are in all colors and designs, many because people reading this sent them to her. We probably have fifty or sixty of them and use every single one. When the supply is running down, there's no more procrastination, I have to get on it.

Yesterday I devoted the day to getting caught up. There were at least seven loads down there and at least five of those were Maggie's. I folded things and put things away all day. The last of it was done last night while Steve and I were watching television. Folding laundry is mindless but necessary. Television is often mindless but entertaining. It's good to combine the two things

Steve was folding the last of the dozens of Maggie's scarves we washed yesterday. As I went to put the last of them away, I realized folding laundry may not be QUITE as mindless for Steve as it is for me. He didn't say anything, but left this for me to discover. He folded all the scarves normally - except one. The scarf in the American Flag design was afforded proper respect and folded like a flag. I could not help but laugh.

I have to wish my comedian husband a very Happy Birthday today.

Balancing Act

2011-09-30T09:01:00.000-07:00

My secret to happiness lies in the balance of thegood and bad things in my life. I write to demonstrate some of the wondrousthings that we experience with Maggie. It is a positive view of a life filledwith joy and love. Obviously there arevery difficult things that happen everyday and, while I don’t want to dwell onthem, I write about those too. Thechallenges Maggie faces and how we handle those is the interesting part of ourlives. While they do not define us, the challenges certainly shape us. Neitherthe joy nor the problems are interesting on their own. It is finding the joy inthe mist of those difficulties that makes our life interesting.

We find our balance, but it is not easy. We walka tight rope every single day. There is no net, but we are high up on that ropeinching forward all the time. We get to the other side, turn around and comeback again. We are not doing it to impress anyone; it is not for show. It isjust our life. Most people don’t evenknow we are up there because they are busy with their own lives on the groundwhere maintaining balance is a little easier.

We can stay on that tightrope only with thebalance. It is a delicate matter offinding joy in the dark, of grabbing those couple of great minutes after hoursof dealing with a problem. Perhaps I can appreciate those wonderful few minutesonly because of the hard hours that preceded them. The lows are low and the highs are high, weneed both to maintain balance. I do notexpect anyone to completely understand that, but I certainly appreciate it whenpeople respect it, which almost everyone does.

Yesterday I encountered someone whose philosophydoes not acknowledge the tightrope or the balance. She “teaches happiness” and says we can allbe happy by simply deciding to be and if we all made that decision problemswould disappear, there would be no sadness in the world and the roads would bepaved with lollipops. That is simply nottrue. I make the best of my situation every single day. I have a positiveattitude and consider myself a very happy person, but I cannot make Maggie’sproblems go away. That makes me sad and the sadness is valid. It is not that I am happy DESPITE the sadness,I think I am happy in part BECAUSE OF the sadness. I am proud of that. I was deeply offended by her simplisticoutlook, which ignored the proudest parts of our lives and the hard work we do.

She knew Iwas not buying in to her philosophy and wanted to know why. As I tried toexpress my concerns and frustrations my voice cracked. That surprised me. It hit me much harder thanI realized. I knew then I was going to lose it and I just got out of there. I’mgenerally the first one to stand and fight, but It was “fight or flight” and Iflew.

It’s backto the tightrope for me. There is a possibility that a person who leaves a"Happiness Class" in tears may be slightly out of balance. Or maybe Iwas providing the balance. Who knows?

I wouldtake a bow, but I might fall over.

Shouldering the Responsibility

2011-09-27T08:25:00.000-07:00

It may surprise you to learn that I have developed significantupper body strength. Maggie weighs just under 80 lbs of constantly moving parts and I lift her at least adozen times a day. When she is in her 105 lb wheelchair with an additional 30lbs of equipment, I am constantly wrestling it into place, pushing it up hills,ramps etc. It is a constant workout, but the benefit is limited. I am out of shape, overweight and strong asa horse.

I do not even realize it until I spend time with someone whomarvels at my strength. My friend Grace Young, aka my favorite Chinese Cookbookauthor or the wok evangelist, (check out her books here) did just that theother day.

Maggie and I accompaniedGrace to the huge Alemany Farmers Market on Saturday morning. Grace always posts the most beautiful picturesof fresh food on her facebook page and I told her next time she came to SanFrancisco we had to make a trip there. Maggie loves going there too. There is a trendier and fancier farmersmarket at the Ferry Building, but it cannot compare to this one. It is a huge farmers market with anunbelievable selection and absolutely no frills.

One “frill” that I would love to see there are curb cuts forthe wheelchair. You don’t know how much easier those little ramps make life forwheelchair users and the people who push them. A low curb is not too difficult. I just use geometry and physics; tilt,push, and the lift is minimal. When acurb is too high for this it becomes more problematic. The bolt that secures the chair into the van sticks out from the middle of the bottom of the chair. I cannot tilt that chair back farenough to clear bolt on the high curbs. I have to dead lift twice, first the front andthen the back. There were several like that at the farmers market. At the worstone, I could not do it by myself. Grace kindly offered to help.

She took the back of the chair as I manually lifted thefront. That was perfect There has to be someone backthere so that the chair does not tip over backwards. I secured the front of the chair, raced tothe back, and lifted the 200 lbs the necessary 7 or 8 inches. Grace was amazed.Apparently, she had been trying to do just that and could not even budgeit. Grace, though a heavyweight in theworld of food and wok cooking, is a 98 lb weakling. (Here she is trying to convert Maggie to the Magic of wok cooking.)

I just laughed and told her this came from years of practicebut that at our advanced age (we went to high school together so we are thesame age) it comes at a price. My shoulders are shot. In fact, after severalmonths of increasing pain in my right shoulder I was heading to the orthopedist.

In March 2010, I had surgery on my left shoulder for damagedirectly attributable to all the lifting I do. That is now doing fine, but myRIGHT shoulder has become increasingly uncomfortable over the past severalmonths. I stopped reaching for things with that hand and tried exercises, but Ineeded something else. I went to the doctor yesterday and confirmed what Ialready knew; it is the exact problem I had on the left side. As he gave me cortisone shot in my shoulder(OW!) he told me I could take comfort in knowing my body was symmetrical.

I could not behappier.

Rebel

2011-09-25T22:37:00.000-07:00

My ancestors emigrated to the United States from Ireland some 130 years ago. My great grandfather Michael Casey settled in San Francisco and rose to power in the labor movement of the early 1900's. He was a rabble rouser and bettered the lives of many people with his work. His seven children, my grandfather and his siblings, were powerful city officials in their day, but less controversial then their powerful father. They were born in San Francisco, not Ireland. Perhaps they didn't have the same need to fight. Perhaps they didn't have to because of their father's success at fighting. Perhaps the inclinations is always there but the fight changes. Perhaps it skips a few generations.

Maggie seems to have it. Her whole life is a fight and she battles every day with a giant smile on her face. Like Michael Casey, she betters the life of many many people. She has the Irish charm and the fighting spirit.

Recently our friend Kelly traveled to Ireland to visit her family. She came back with a gift for Maggie, a t shirt from County Cork, the rebel county. Though my family is not from County Cork, I do believe Maggie qualifies as a rebel. Maggie was delighted with the shirt and wears it proudly.

Maggie's rebel status may explain the official letter/notice I received on Saturday. Maggie is now an official Truant from the San Francisco Unified school district. It is curious, of course because Maggie goes to school every single day. Or at least she gets on the bus. For all I know she is leading an uprising on that bus every morning. Her great great grandfather would be so proud.

Despite the street cred this gives Maggie, I was less than pleased with this official notice and emailed the principal and the teacher on Saturday afternoon (as soon as the notice arrived) letting them know I thought this was ridiculous and asking for it to be remedied. I told them it felt a bit like someone was turning the knife. I received a response from the principal in less than an hour.That impressed me. He agreed it was ridiculous and promised to put a stop to it.

Maggie, of course would rather I left this alone. She would prefer to maintain her rebel status.

Quiet!

2011-09-23T08:47:00.000-07:00

I woke up to a strange buzzing sound this morning and it took me a minute to realize what it was because I haven't heard it in several weeks. The alarm clock! That means I actually slept all night. It's been a crazy month around here and sleep has been fleeting at best.

Wednesday night Maggie pulled out her feeding tube, the other night it was her trach tube. My injured shoulder kept me up for several nights as did listening for my father in law while he stayed with us for a few weeks. But last night all was quiet. Steve is backpacking, no one is in the spare room, all Maggie's tubes and appliances stayed where they were supposed to, the nurse didn't need any help and the motrin I took before bed kept the shoulder from throbbing. A recipe for a quiet night's sleep. If I can repeat that for another week or so I might catch up. But Steve will be back Sunday with two extra people who are staying here, so I have to make the most of this weekend.

Someone did call my cell phone at 12:30AM to cancel an appointment we had for today (Really?) but I didn't hear it. Good thing I charge my cell phone in the kitchen while I sleep upstairs. I can't be responsible for what I would have said if I rushed downstairs to answer that.

Just before I went to bed I received this picture in an email. A friend took this of Maggie the other day with a fancy camera. I stared at it for a long time because it is an excellent picture of Maggie. It really captures her - especially her joie de vivre. I put it on facebook with the question "Is there anyone in the world as happy as this girl?"

The consensus is No.

Smile!

2011-09-21T23:31:00.000-07:00

Finally a decent school picture! It was bound to happen sooner or later!

What a teenager. (She looks like she's wearing makeup)

You should know that there have been years that I sent the pictures back with the question "why would you even print this?"

Satruday at Spreckels

2011-09-19T12:58:00.000-07:00

A weekend of sun in San Francisco! Our summer arrived right on schedule, mid September. It will last until about the 6th of October. That was always so frustrating as a kid. We'd be in the fog all summer and as soon as school started the weather wold be perfect. But I'm not in school anymore. hehehhehehe

Saturday morning we went down to Spreckles Lake in Golden Gate park. There is a model boat club that uses Speckles lake for remote controlled racing, fishing, sailing and even tug boats. They are very elaborate and beautiful and it's nice to watch them. I prefer the quieter ones to the racing boats, but those tings really zip around. Generally the morning is for the power boats and the sail boats start around noon. We were there late morning and got to see both.

My father in law is visiting, and this was a great place to walk with him and with Maggie. It's flat and paved - our favorite combination! We walked slowly around the lake enjoying the boats.

It's been a long time since we spent a morning down there. We used to go with the boys all the time when they were little, but somehow got out of the habit. Now that we've done it again, we will return more often.

On Saturday night I left Maggie with the boys, Steve Grandpa, Tim and my nephew Matt. they all had dinner together and I went with my sisters and my mom to see Diana Ross. I will tell you that lady still has it. A 90 minute show with 5 different dresses, each one more fabulous than the one before and songs from every era of my life. It was a great show.

Just because I'm nice, I'm adding a video from 1979 of Ain't No Mountain High Enough. That's 32 years ago. She sang it the other night with just as much energy. Amazing!

The Language Cop Rant

2011-09-17T08:32:00.000-07:00

I went to the movies last night. Shocking, I know. I had a wild night out - but was home before 10. My girlfriend suggested Contagion and something else heavy and I gave both the thumbs down. I don't get to go to the movies very often and I want to either see an excellent drama or escape completely. I didn't get either.

She had already seen the movies I was most interested in and we settled on My Idiot Brother. I love Paul Rudd and the SF Chronicle actually gave it a good review. (That should have been my first clue.) Allow me to assist you here. Save yourself the time and money.It's a forgettable piece of junk. The movie should have been called "I'm a nice guy with three sisters who lead screwed up lives and blame me for their problems." I do still love Paul Rudd, though. In this movie his character is kind and so trusting that he's socially clueless. He speaks the truth but won't hurt anybody. There is no disability here at all, he's just sort of a true hippie out of time.

Whey then would I bother you with any information about this movie.

Because a Hollywood movie made in 2011 used the word "R" word at least twice. Really? Still? Because of his innocence and social cluelessness other characters refer to him as "retarded." At one point he smiles and nods and says "I get that a lot." I felt the hair on the back of my neck stand up. I searched through my giant bag to see if by chance I had and tomatoes I could throw at the screen but all I could find were feeding tubes.

If anyone still needs a lecture, here you go. Think before you speak folks. Think about the words that are coming out of your mouth and what effect they have on others. If you have to call somebody names, at least use words that make sense.For additional ranting by me on this subject, click on the Language Cop tab at the end of this post. Or for an official viewpoint join Spread the Word to End the Word

The R word is pejorative and hurtful. Don't use it. Correct other who use it. It is a slam against people with intellectual disabilities and puts up another wall that society has been trying to break down for many years. People who use it as a synonym for "stupid" sound ridiculous, childish and idiotic.

Because I am sounding so preachy I am just going to re post the link to Stephen Colbert's interview with Tim Shriver, the head of Special Olympics. The two of them say it so well. (I tried to embed the video, but I can't figure out how. There is a short ad first, but this is worthwhile watching. )

http://www.colbertnation.com/the-colbert-report-videos/379371/march-30-2011/tim-shriver?xrs=share_copy

Other than that, though. it was a lovely evening.

Wait here.

2011-09-16T11:56:00.000-07:00

I wonder how much of my day is spent waiting for some body or something. I wait for Maggie to wake up so I can do the last push to get her out the door in the morning. I wait for the verrry slow elevator to take us downstairs, I wait for the school bus, I'm on hold with doctors offices, supply companies, agencies, insurance companies and everything else. We wait for appointments with doctors and therapists, we wait for the night nurse to arrive, and for the meds to be ready at the pharmacy. We wait for deliveries of diapers and food and other supplies. It's time lost. I can't really do anything else but busy work because I know I will be interrupted.

I live in "The waiting place." Dr. Seuss cautioned against it in the wonderful book "Oh the Places You'll Go"

You can get so confused that you’ll start in

to race down long wiggled roads at a break-necking pace

and grind on for miles across weirdish wild space,

headed, I fear, toward a most useless place.

The Waiting Place…for people just waiting.

Waiting for a train to go or a bus to come,

or a plane to go or the mail to come,

or the rain to go or the phone to ring,

or the snow to snow

or waiting around for a Yes or No

or waiting for their hair to grow.

Everyone is just waiting.

Waiting for the fish to bite

or waiting for wind to fly a kite

or waiting around for Friday night

or waiting, perhaps, for their Uncle Jake

or a pot to boil, or a Better Break or a string of pearls,

or a pair of pants or a wig with curls,

or Another Chance.

Everyone is just waiting.

I'm in that "useless place" right now. Waiting. And it's particularly frustrating when I have to wait for something Maggie related suring the school day while she's not even with me. I had my jacket on all ready I'm ready to go out but couldn't. I'm in a holding pattern. The oxygen guy called at 10AM and said he would be here between 11-2. Hmm. Should I run out quickly and come back or wait. I can't miss him,. the tank needs to be filled. I asked him "Do you think that's closer to 11 or closer to 2." He said between 11-12. OK. I'll wait here first. I did my banking on line, started another load of wash and folded the three loads that had piled up on top of the dryer. I cleaned the kitchen and started the dishwasher. It's only 11:45.

Tap tap tap.

I could clean out my dresser or my closet, but let's not be ridiculous about this whole thing.

ahh-- doorbell.

Just Dance!

2011-09-14T15:32:00.000-07:00

A voice yelling my name at 4AM is a difficult way to start the day. Miss Maggie decided to yank out her tracheostomy tube in the middle of the night. I heard the yell and instantly bounded down the stairs, or so I thought. When I arrived I learned that the nurse had been yelling for 10 minutes. (why she didn't use the extra telephone line, I don't know). She did get the old one back in. so Maggie was safe, but she could not get the supplies she needed to replace it and tie it around her neck. I did that in about 10 minutes and went back upstairs to bed. It was hard to go back to sleep with the adrenaline pumping like that.

This is not an unusual occurrence, in fact if you've read these posts for any amount of time, you've seen the same story before. Unusual or not, it's jarring and not something you get used to. This incident and so many others are examples of Maggie's fragility and tenuous grip on health. Even when the adrenaline slows down after an incident like this, the reality of Maggie's situation creeps back into my mind.

No one in this house lives life half way, including Maggie. You have to LIVE your life. Yes, Maggie has numerous life threatening conditions, but she lives her life to its fullest potential all the time. Sometimes folks are afraid of Maggie's health issues and we try to set minds at east as much as possible without denying the reality of her situation.

Recently one of the professionals working with her expressed concern about Maggie's rapid change in status. She's right to be concerned, and we have to be wise, but I don't want fear to prevent Maggie from living her life. I turned to her and said kindly and simply, "She's dancing on the edge of a cliff. Let her dance."

I don't know where it came from, but that image has stuck with me ever since. The cliff is always there, we can't ignore it and we have to respect it, but we really can't do anything about it either. I like the image a lot. In fact as I lay awake this morning and some of that fear and dread started creeping in, the image comforted me.

Forget that hackneyed "Glass half full" analogy. I'm sticking with this one. Maggie is dancing away and we can either watch the dance or watch the edge. I'll take the dance, thank you.

I have to add this picture because after I wrote this I remembered this picture of Steve at the top of Half Dome Last year. I think this may be where I got that image. Maggie gets her dancing ability form her dad. My wildest activity is typing fast.

Truant! (I think.)

2011-09-13T13:54:00.000-07:00

Maggie is classified as "technology dependent." for some of the programs she is on. That is a reference to the machines she needs to stay alive. I cannot argue with that; she is technology dependent, but so am I and so is everyone I know. Granted the technology I depend upon doesn't keep me alive, but it certainly adds to my quality of life. Computers, smart phones, cable television even the washer and dryer are very helpful. When all of these things work as they should, it is a great thing. When they don't work it it frustrating and inconvenient.

The best way to have everything work as is should is to keep some human intellect in the mix. When technology works on its own with no one THINKING about it it can be scary. and very annoying. Stocks automatically set to sell at a certain point sent the financial world into a tizzy a few years ago. No one could stop it. If that same program had a "kill switch" that someone could throw to halt the destruction, a lot of grief would have been avoided. Circumstances are fluid and reactions cannot always be automatic.

Maggie's school uses automatic telephone calls to relay information to parents. Sometimes these calls are for everyone (e.g PTA meeting tomorrows) and sometimes they are specific to an individual student. We have been getting calls about a problem with Maggie for a few days now. I suppose that would be fine if the problem really existed. The calls I have been getting say this:

We are calling to advise that your child ...MARY... was marked absent from one or more classes today. If this is not an excused absence you will be contacted by a truancy officer."

I ignored the first one figuring it must be an error, but then I received another one today. I looked at Maggie in her wheelchair that she cannot push on her own and said, "Listen, Missy, you better not be cutting classes. Are you hanging out in the Mission District sneaking cigarettes?" Maggie thought that was hilarious. We had to turn on some of the technology she is so dependent on just to keep her breathing

Perhaps the tiniest bit of human intervention is required here. Maggie arrives in the morning in her wheelchair.. She needs adults to do everything for her. She could not cut class if she wanted. to. Nonetheless, there is a possibility of a truancy officer knocking on my door. It's hard to imagine they even HAVE truancy officers in this time of huge budget crises, but that's the threat. All I can say is I pity THAT guy if that actually happens. He will try to question Maggie and she will tell him jokes on her dynavox.

Apparently this is happening because Maggie is enrolled in a P.E. class that starts before her bus arrives at school. Technically speaking, she is missing a class. But in the world of living, breathing THINKING human beings, it all makes sense. It's just difficult to explain that to the robotic phone voice. They are working to fix that today and the phone calls should stop.

I know it's not fair. I want Maggie to be treated just like everybody else when she can, but to have her circumstances acknowledged when it's necessary. That's a fine line that can be difficult for people. It's not that hard, it requires just a little common sense and some good old fashioned human intellect.

All I know for sure is this. She cuts ONE MORE CLASS and she is grounded for life.

Grandpa Frank

2011-09-11T15:11:00.000-07:00

In my father's retirement years he was "discovered" by a talent agent while walking through a mall with my mom. He started an acting carer which consisted of occasional commercials and several "extra" roles in movies. Generally he was in the background somewhere and you never really saw him unless you knew were to look (which we ALWAYS did). There was one movie, Angels in the Outfield where he had a real role, though no speaking lines. He played the third base coach in that movie. He was visible numerous times and actually had one frame with just his face. I can tell you it is very strange to see your dad's face on a movie screen that's as big as a house.

The movie came out in 1994 (the year Maggie was born) and was filmed in The Oakland Coliseum. I remember going over there after a court appearance all dressed up like a lawyer and watching the filming for a while. It was fun for everyone, but no one more than my dad.When the movie came out on video the boys used to watch it over and over shouting "There's Grandpa" whenever his face was on the screen. They knew when it was coming and each tried to beat the other by yelling it first.

Eddie recently happened upon the movie on DVD and bought it. He watched it last night, while wearing the very same hat Grandpa wore in the movie. He kept texting me lines from the movie. I was sitting at the Giants game with Tim and Steve and we were all laughing at the lines which were especially ridiculous out of context. .

Then he must have stopped his movie to take a picture of the one shot featuring my dad's face. which he sent to my phone. The message that accompanied this picture from his television screen.

"Miss him. But he sure does look Gangster in that hat."

I laughed out loud. My dad was many things, but "gangster" was not one of them.

My dad was told to look shocked as a runner is bearing down on him. After raising seven kids, nothing really shocked him, but he pulled it off. He was a natural

Eddie said he stilled yelled "THERE'S GRANDPA!" every time he came on and wondered if that was weird. Not to me, but I know his girlfriend was a bit confused.

Eddie said in a later text that seeing Grandpa (who died in 2007) moving around on the big screen kind of bummed him out - but I told him he completely make my night. .

Timmy's pitching

2011-09-09T21:56:00.000-07:00

Maggie does not watch television. She cannot see it very well and cannot process all the moving parts. Tonight she was right next to the tv and was fascinated by the Giants game. I shot this short video because she wouldn't take her eyes from the game. Once she realized I had the camera, though, it was a different story. (Ham). We did put in her "yes" and "no" signs at the beginning so people would understand what she is saying.

Right now the Giants are down 2-1 in the bottom of the 9th. So I can't tell you for sure if her prediction came true

Going Up?

2011-09-09T08:33:00.000-07:00

This is one of those situations that is sort of embarrassing to complain about. But you know that won't stop me.

We are very fortunate to have equipment that allows us to get Maggie into and out of the house and the van. Without our outdoor lift or van adapted for her wheelchair, we would very likely not be able to keep her at home. Every day I thank my lucky stars that we put in that lift and that the van is in our lives. We press buttons and control these magic machines that give some quality to Maggie's life and ours. Sometimes, though, the magic machines control us. Today is one of those days. Really, it's been one of those weeks.

As I write this the guy is here doing the semi annual maintenance to the lift. It actually works great and has been very dependable since we got it about 5 years ago. Lately the lift seems to groan as we ascend and I had to nudge the company to get out here and check it out. It's getting old. I can relate. I groan as I ascend too. We made this appointment last week and I expect he will be done within the hour. That's a good thing, because the lift on the van is broken and I have to get it back to Berkeley as soon as this guy is done.

The van lift was acting strangely for the past month of so, but it was manageable. Once the lift fell to the ground hitting me in the back of the legs I decided we had to get it fixed, but I wanted to wait for Maggie to go back to school. I cannot be without the car when she's home all the time. As soon as she went back I called for an appointment to find out what was wrong. On my first trip they determined it needed a new motor, which came at a very hefty price (of course).They had to order the part so another trip was required. I asked that they fix the companion seat at the same time because they installed it far too low. Whoever sits in that seat cannot even see out the window. It is also terribly uncomfortable because the seat is so low your knees are up around your ears. I scheduled another appointment for the work and brought it in Tuesday.

Taking a car across the bay for repairs is a pain in the rear. I drove it over there, left it, walked 1.5 miles to the BART station, came back to the city and hopped on a bus to get home. The schlep on public transit, including the walk to the station is about 90 minutes. I called Wednesday at noon to see if it was ready. Indeed it was. I had some stuff to do and had to make the long trek back and arrived there around three. Motor is changed, seat has not been touched. One cannot help but wonder why they told me it was ready three hours earlier?

The guy removes the seat, gives me some excuse for why it wasn't done (they clearly forgot) and tells me they will call when it's ready. I am less than pleased. I drive home with my van minus one seat. Now I have to go back again to get it. As it turns out, however, another trip was going to be needed anyway. They did indeed put a new motor in, but apparently neglected to reattach the lift to one side of the mount. As I pressed the button today I noticed it was coming down at a very strange angle and reached the car in time prevent it from getting jammed into the door and wrestled it back into place. We were headed out to an appointment so I raised and lowered the lift manually to load, unload, load and unload Maggie. Let me tell you, that is one heavy sucker. My shoulder is killing me.

So I will finish this tome and head east over the San Francisco Bay Bridge, back to the flats of Berkeley and deal with all of this again for the third time this week. This time I'm not coming back into the City. I will forego the long walk to the train, the ride under the Bay and into the city and the lurching bus ride home. In stead I will sit in their greasy little waiting room with my book and make sure it is all done correctly.

At this point I feel like I am something of an elevator expert, but I really just want to get back to the place where I push a button and the magic machines do what they are supposed to do..

Back to Reality, whatever that is

2011-09-07T09:02:00.000-07:00

Good morning. It's already Wednesday! We survived our long weekend, but just barely. It was a whirlwind.

It was great to see Eddie and Grace again. Maggie was beside herself, She just kept saying "Eddie Eddie Eddie" on her talker. He would occasionally answer with WHAT?!?! and she would laugh her head off. Maggie would then say "Eddie, I am happy," to which he would reply/shout "Prove it!" and that would start her laughing all over again.

Dinner on Sunday turned out to be a 15 person soiree. We had to bring up a folding table from the basement to accommodate everyone. Food was delicious and company even better. There were in laws, cousins from both sides my mom and Steve's dad. The conversation is always lively and loud punctuated with lots of laughter. On top of all that, Maggie needed suctioning almost constantly, so I would be up and down form the table suctioning her, but not missing a beat with the conversation.

My niece brought her friend who had never met any of us. I could see she was trying to make sense of who everyone was, how they were connected and what was going on. She may be writing her own blog right about now.

While juggling all these balls in the air, I neglected to do the one thing I planned, which was to get a picture with all three of my kids. That didn't happen. Oh well. Eddie will be back in November. We'll try then.
I did get Eddie, Tim and Grace along with Eddie's friend John just as they were heading out for a night on the town.

Everybody but my father in law was gone by Monday morning, so Maggie and I decided to take a walk in the park. As we started through the pedestrian tunnel we saw all these guys coming and I had to grab a photo.

I should be sued to seeing these segways, but when they come through in a line like that it still cracks me up. I feel like we have slipped into a cartoon or something.

OK. Labor Day is behind us. Even though school started three weeks ago, now it's for real. In fact today is picture day and Maggie was dressed like a member of the French resistance with her black and white striped shirt and scarf around her neck. I hope they don't put a cigarette in her hand to complete the look.

Long Weekend

2011-09-02T08:54:00.000-07:00

Long weekend looms! My son Eddie is coming home with his girlfriend Grace. That will be great. I haven't seen him in a couple of months and Maggie hasn't seen him in about 6 months. . He was here one night during the summer on his way home from a road trip. He arrived late at night after Maggie went to sleep and she was gone to school before he woke up. By the time she got home he was GONE. I haven't seen Grace since April and Maggie hasn't seen her since Christmas. Maggie will be delighted. Mom will too. My father in law is also coming for the weekend, so we will have a houseful, which is fine with me. We are having a big dinner with my mom and other extended family members on Sunday.

In other news, my shoulder is killing me. I had surgery last year on the left shoulder which is now fine. For the past few months the RIGHT one has been giving me the same problems. Arrgh. I don't want to have surgery again and I'm trying to stop lifting so much, which is all but impossible with my lovely Maggie. The other night she was in bed and wanted to get out, but I just couldn't do it. To keep her amused I climbed in bed with her. Her bed is high - mayebe four feet off the ground, so when I say I CLIMBED, I mean it. One foot on that brown chair and then up!

Maggie has a single bed that is enclosed on all four sides like a giant crib. Steve custom made the bed for her because she falls off of anything else. There was not a lot of room for the two of us but we snuggled together. She thought that was hilarious. When Steve came back downstairs he grabbed a photo. I am literally hanging off the edge of the bed here, but Maggie is entertained.

Have a great long weekend everyone!

up up and away

2011-08-31T12:19:00.000-07:00

Caring for Maggie requires a concerted effort by a number of different individuals working separately and together. Everybody has his or her role and when everybody is in sync, amazing things can happen. I was thinking that and working on an idea for a post when I came across this picture that illustrates it perfectly.

That's Jonathan Trappe, an adventurer from North Carolina crossing the English Channel in a seat attached to a cluster of helium balloons. Every balloon had to do its job for this to work. He also needed patience to wait for the right weather conditions, safety precautions if something went wrong, and most of all, an adventurous spirit willing to break a few rules. It's also wise to avoid items with sharp edges

If a picture is worth 1000 words, you can thank Mr. Trappe for saving you from having to read those words. Well, at least today you didn't have to. Things are still rattling around in my brain.