Now Free Delivery!

Hi friends -

Maggie World can come directly to you! I just added a new gadget to this blog. If you want to new posts emailed to you, just sign up in the indicated area on the right side of the blog. Of course I will still be here for those of you who come to the site, and you can still leave comments in either format. It's just a new toy for those who are interested.

Have a great weekend!

Watching the Royals

Maggie's night nurse Etoy wants to watch the Royal Wedding. It starts at 1:00AM here. I will be snoozing, and hopefully so will Maggie.  Maggie and I decided Etoy needed some finery to use while she watched the wedding.  I wish I thought of it earlier I could have had scones or crumpets, but tea and biscuits will have to do. 

Don't tell the Brits, but that crown is actually from the 4th of July last year. The music box globe does have a pink princess crown inside. So she's set.

She was very well pleased when she arrived for her shift.

Jolly good!

Watching Our Girlish Figures

One thing we hear a lot about these days is having a positive body image. I do, I'm positive my body image is not good. This concept is important, though, especially for teenage girls who are prone to eating disorders. That is beyond dispute. Once again, however, a truism of health and wellness does not apply to Maggie. First of all everything about Maggie's self image is positive, so that's not a problem. Also, she is so small she is not even on the charts.

When I was expecting my kids I never once considered the possibility that anyone of them would be anything less than perfect. It really ever crossed my mind that any of them would have any health or developmental issues. I had no preference for boys or girls and I just presumed they would be healthy, so what did I worry about. All I wanted was for the kids to get Steve's metabolism instead of mine. Steve is tall and very thin and has never had an issue with weight in his life. I am not, not and have always had an issue. Even then I knew it was shallow and vain, but a girl wants what a girl wants. Ahh, ignorance really is bliss.

Both the boys are big, but not over weight. They eat healthy and exercise but I wouldn't say they have Steve's metabolism. The only one that really got it was Maggie. She is like a hummingbird. She has always been so tiny that it has exacerbated her other health issues. Obviously that's not just attributable to just metabolism but also to her overall health history.

I remember a three year period from about age 4 to 7 where we could not get her weight over 25 lbs no matter how we tried. She would gain a pound or two and then get sick and lose it again. We tried different formulas, adding oil and all sorts of other tricks to put weight on her. Nothing worked until her health stabilized. Then she slowly starting putting on weight until she hit the 50lb mark. She stayed there for quite a while too. At age 13 she got the trach and suddenly wasn't using so much energy and burning so many calories just to breathe and we were finally able to increase her weight. She's still small but growing. Good.

Yesterday she had her semi annual check up at the GI clinic where they monitor her size, weight, ratio, feedings, and nutrition. Maggie is now 17 years old, weighs  75.3 lbs and is about 4'7" tall.  Not exactly statuesque, but
definitely an improvement over her past. Imagine my surprise, then, when the nurse practitioner said, "OK, it's time for a diet." My mouth fell open. I said, "WHAAAA? She's just a slip of a thing." (though I have to admit lifting her a dozen or more times a day is not fun).

The issue is not the number on the scale, but the ratio to her height. She will likely not grow anymore in stature, so the feeds have to be adjusted to keep her from gaining weight. In the past six months she's gained 5 lbs and that is just too big of a jump in a short period.

So Ms. Maggie is on a diet. She doesn't need to lose weight, we just need to slow down the pace of her gaining. This really threw me for a loop. After 17 years of doing everything possible to get every calorie into her, we have to change our thinking. And, naturally the normal rules don't apply. Instead of celery and salads, it means cutting her overnight feeds. She has feedings pumped in while she's sleeping, but we will cut those in half. Hopefully she won't even notice the change.

Hmmm. Maybe I should try that.

Clare's home!

Spring has sprung in San Francisco. It is a perfect day here today. The sun is shining, the flowers are in bloom and alls right with the world. This is the garden in front of the Conservatory of Flowers in Golden Gate Park this morning.

Things just feel good today.My niece Clare arrived home last night after spending the last year in Ireland. Everybody is so excited that she's back, especially her mother. I haven't seen Clare yet because she's checking in at the new job she starts next week but I did get a full report from my sister as we walked around the Park this morning.  We were talking about all the cousins and how things are falling into place for so many of them. There are probably 10 grandchildren in their 20s and they are finding jobs and making things happen. It's a great thing to witness.

It used to be hard for me to think like this because I know those opportunities will never be there for Maggie, but it really isn't hard anymore. Nothing has changed with Maggie - I mean she doesn't have a paper route or anything - but I no longer compare her life to others because there is simply no comparison. I realize now that Maggie is living her life and loving every minute of it. For her every day is like the day her cousin comes home after being gone for a year because she is always delighted. Just check her out with her grandpa, she can hardly contain her joy.

Coming to this realization obviously makes things a lot easier. Instead of worrying about Maggie's limitations, I often find myself a little envious of her outlook on life.

Hit the Road, Jack.

Today is a furlough day in San Francisco. The public schools are closed because of the State's budget woes. I'm sorry, but in what universe does this make sense? Not this one. Ok, enough with the rant.... just know I'm thinking it.

Because of this furlough, Maggie is home this morning. She found that quite intriguing. Of course it was not a typical Monday because Grandpa Ed was still here, and that was just a bonus for her. Maggie sat in her chair demanding breakfast and music and all sorts of things. Grandpa was laughing at her and she was enjoying the attention.

At about 7:30, Grandpa asked me if Steve had already left for work. I just laughed and said I doubt he's up yet. Steve moves verry slowly in the morning. If he doesn't have an appearance, he tends to leave for work around 8:30 or so. Maggie is long gone to school and I'm well into my day before he goes. He came downstairs all dressed up in his "lawsuit" and sat down for breakfast. He greeted Maggie, and chatted with his dad. Maggie continued her demands and various statements. "Mom, I want to go to my car." "Mom, no school." "Mom, Fely come see Maggie" (Fely is Maggie's nurse who was scheduled to arrive around nine or so). My father in law was impressed with Maggie's skill.

Things quieted down. Steve and his dad were reading the paper, I was on the computer. Quiet is not Maggie'sfavorite sound. Maggie was working away on her talker. I heard "Dad." and then "Dad. GO!" and I knew what was coming. She worked some more clicking and moving and clicking on that talker and then said

"Dad. go to work, dad."

All four of us started to laugh. Maggie was delighted. She was the center of attention once again. I had to snap a picture of the message window on the dynavox. We will just leave it at Steve's place in the morning if he's not moving fast enough. You can also see how pleased she was with herself. 

Chasing my bunny tail

We had a busy morning. I did our usual morning routine with a few extras. First of all Grandpa Ed is staying  with us this Easter weekend. We were gong to lunch at my moms with three of my sisters and some of their kids. I thought lunch was at 1:00 and had everything timed to the minute. I made the first part of my casseroles before church at 9:30 and finished when we got home. It would be done at 12:30 and we could take it over to Grandma's house hot and ready to eat. If need be I could re-warm it in her oven.

As it turns out, that really wasn't necessary. at 12:15, my sister called my cell and asked where we were. Putting on my best wise ass response I said, "I'm home, where are you? She said, "waiting for you." What? Yeah. Lunch started at 11:30. Oops. We were just sitting around but the casseroles weren't quite done. Br the time we got Maggie downstairs and into the car it was only about five minutes short. Close enough for government work.

I put them next to Tim in the car and gave him the over mitts.Everyone was already eating when we got there, but they did scarf down the food anyway. We had to leave when everyone else did because it takes three or four guys to get Maggie down the stairs. When my nephews left, we had to go too, so I barely spent any time with my mom, but that's my own fault.

Now I'm making Easter Dinner for Steve and my father in law. Maggie will be here, but doesn't eat anything but her own food. Tim went back to his apartment..

 Maggie was resplendent in her easter colors.  

Hope your Sunday was great.

 

Easter

Happy Easter to all who celebrate. Don't stuff yourself on all that candy. And to those of you that don't celebrate, happy Spring. I hope you get a little piece of chocolate today.

Maggie wanted and received an Easter dress, which she will adorn in the morning. Maggie doesn't wear dresses very often because it's hard to make them work with her wheelchair, but she was so excited I couldn't say no. I will post a picture.

In the meantime, enjoy the bunnies.

Dynamite

This video has been every where the past few days. This kid, Keenan Cahill has a number of videos and he just lip syncs and makes hilarious faces. (find his version of Teenage Dream - it's hilarious). 

This one features two of the SF Giants, Brian Wilson (fear the beard) and Cody Ross (Ross is Boss). Lou Seal, the Giants mascot is also prominently featured. They are donig a fundraiser for Keenan, who has a rare genetic disorder called Maroteaux-Lamy Syndrome, also known as MPS-VI. This disorder, which affects one in 25,000 people, has no known cure. Those with the disorder usually stop growing at about age 8 and are characterized by a shortened trunk and restricted movement.  Keenan, who's 16, is using his unusual looks to make people laugh and now he's raising money. This video has over a million hits and they just showed parts of it on national tv. 

Good for all of them. 

It's bizarre - as are all of Keenan's videos, but it makes me laugh. There's a short outtake at the end that's pretty good too. 

http://youtu.be/iwYZ3LHHERI

Good (but I've had better) Friday

Good Friday started off with the phone ringing at 4AM. My husband was still trying to figure out how to answer it when I arrived downstairs. The nurses call from their cell phone to the house phone if they need help with Maggie.

Maggie has an uncanny ability to get herself into positions that scare everyone, except her. She is lying on her back and extends her neck so that the back of her head is touching her back. I think she's trying to get more air initially but then she kind of gets stuck. It's freaky looking, and though she starts out getting more air, I believe it get more difficult to breathe when she gets into this position. Getting her out of it requires intervention, then she does it again, etc etc. By the time I got down there she looked a little glassy eyed but she was fine. I repositioned her and she gave up the fight and went to sleep. I went back to bed. But sleep was not in the cards for me after that.

I put her on the bus and started my day. When Steve scraped his spoon on the bottom of the cereal bowl I went a little crazy. That noise is always a little creepy to me, but today I jumped out of my skin. I said, "OK, I think you're done" and took it away from him. I kind of knew then that I'd better head back to sleep. Of course  I drank a boatload of coffee so I wondered if sleep was possible.

It was.

I slept for 90 minutes until my phone buzzed. It was the nurse cancelling this afternoons' shift.

Lather. Rinse.  Repeat.

Walker Texas Ranger

After an inordinate amount of time thinking about and trying things out, it looks like they've finally found a walker for Maggie. I went to school today to see her in it. I actually thought this was hers, but discovered it still hasn't even been ordered. This is a loaner.

Maggie has some ability to move it around already and you can see the determination in her eyes as she tried to get where she's going. She will figure it out, I'm sure, but she has to actually GET it first so she can use it more often.  She lasted a little more than 20 minutes and then she was exhausted, but she can build up stamina as she gets more used to it.

Where we will put this giant thing is another question entirely. It will be at school most of the time, but on breaks and long weekends, it will be great to sue in the back yard or even at the park.

Sweet Melissa

Nurse Janice called from school yesterday. Generally these calls are to discuss some troubling symptoms. Janice and I put our heads together to figure things out. Yesterday, though, Maggie was physically fine; her behavior, however was something else again. She was scratching, pulling at her trach and disrupting the class.

It seems Melissa went to school yesterday instead of Maggie. Melissa is Maggie's evil twin and she shows up every now and then. She's a pain in the rear.

I asked Janice to put the phone next to Maggie/Melissa's ear.She did and I put on my best mom voice and told her to cut the crap. Of course she can't respond to me verbally so I have no ideas how she's reacting. I just keep on lecture mode - it's second nature to me after 23 years of raising kids - and told her she would "NOT BE HAPPY if I had to come to school to get your. Do you understand me young lady?" Janice came back on the phone and said Maggie just signed "yes" with a very serious look on her face.

It's nice to know I've still got it.

When she came home from school Maggie slept for over 2 hours. Hopefully Melissa made an appearance because Maggie was so tired. We will see today. This morning Maggie had a bit of an evil grin as Janice and I discussed her behavior while we waited for the bus.

Maggie got ON the bus. Hopefully Melissa didn't get off

.

Weekend warriors

Back from Sea Ranch relaxed and refreshed. The place is beyond beautiful. It is spectacular. It is also very relaxing. We walked through the hedgerows (pictured) and along the bluff and down on the beach. We rode bicycles (my first time in 10 years) and soaked in the hot tub and I read an entire 500 page book.. 

There were bumps in the road, though. I posted on Thursday that my most reliable nurse, Josephine, hurt her back and cancelled three shifts over the weekend. I scrambled and pleaded and cajoled and moved things around and got it to work. On Saturday afternoon, between a walk on the beach and a bike ride, I received a call from an emergency room in SF. You can imagine that my heart was in my toes, but Maggie was fine. It was Lucy, another nurse who was scheduled to work Saturday night - 11PM to Sunday at 7:00AM. She was fainting and having other symptoms and was getting admitted. (She’s ok now) That meant there was no nurse to care for Maggie over night. That's never an easy shift to fill but almost impossible at the last minute.

We were both very upset because it looked like we had to leave immediately. I was cleaning up the place and throwing things in my bag as I called home and had Tim access my data base with the nurses info. It couldn’t be just anybody. It had to be someone who cold work completely on his/her own. No one would be there to show them where things were, etc. I started dialing numbers like a mad woman. No answer, left message. Not available. I called Etoy, our week night nurse who NEVER works weekends. She had already come through for me on Friday night allowing me to shift things around to fill Josephine's shifts. I told her what was going on and she said - "you stop packing this minute and have fun. I'll take care of Maggie."  I almost started to cry. 

Other than that hiccup, everything went great. Maggie had fun with Paulo and his wife Mary Jane who are both young nurses and fawned over her all day Friday Saturday and Sunday. Etoy and Fely both came through for me and worked weekend shifts after working all week. Maggie is also older now and has a better understanding that we will return and actually enjoyed the change in routine. 

But it was a lot of work.

People often tell me I need to take more breaks and get away with Steve. I appreciate the sentiment and  concern, but I hope those dispensing this advice read this. The amount of work it takes to make it happen is unbelievable. Despite weeks of preparation, things still fell apart this weekend. They came back together only because of the generosity of Etoy and Fely. I am eternally grateful to both of them, but that is not something I can exploit. It is also very expensive to hire nurses for extra shifts. Those are not included in the hours Maggie gets from the state. It is double to cost for us to do anything. Put it all together and you may start to understand why we stay home. 

This weekend was great, and I’m very glad we did it, but it will have to hold us for a couple of years.

Home again

We are back. Alive and well.

Refreshing and relaxing weekend.

Maggie was very happy to see us and visa versa.

I will post later, but wanted to do a drive by wave here!

Yes, No, Maybe so

It's been a roller coaster day. I was scheduled to be on a parent panel at UCSF today. This was a retreat for nurses. You must know by now that nurses are among my favorite people on earth. Generally I love doing these things and demonstrate our glass half full approach. That was harder today.

About 5 minutes before it started I received a phone call from Josephine one of my home nurses. She hurt her back and had to cancel her three shifts this weekend. THIS weekend. The weekend Steve and I were planning to go away to celebrate our 25th wedding anniversary. I have been setting this up for weeks getting nurses lined up and supplies stored, renting a place for us, packing, preparing etc etc etc. Steve and I have been away alone together twice in the 17years since Maggie was born. It's a big deal and it looked like it was all going to fall apart. 

I went in to the panel with my heart in my mouth wondering how I could possibly piece things together at the last minute. Ironically I was in front of a room with 60 nurses in it trying to figure out where I could find a nurse. Of course nurses are not fungible,  I had to find nurses that know Maggie, know my house  and can work on their own because I wasn't going to be here to help.

We went through the presentation and it was well received, but I was not my jolly self at all, and I feel bad about that.  I'm very glad I prepared some stuff ahead of time because I was very distracted and feeling very sorry for myself.  As the other two presenters answered question I began to formulate a plan of attack. My brain was like def con 3 - I started mentally moving things around and finding ways the puzzle could fall into place. 

The first two efforts failed and I felt more dejected, but refused to give up. About an hour ago the puzzle came together. Fely will take Saturday afternoon and Tim will be here to help Fely, who can not do things on her own. Etoy will take Paulo's night shift and Paulo will cover Friday afternoon and stay a little longer on Sunday after his 7-3 shift on Sunday. We will have to be home by 5PM on Sunday, because there won't be a nurse after that, but that is completely doable.

I wonder if I can get a do over on the presentation. I'm feeling much calmer now.

We are off on our getaway. Keep your fingers crossed that nothing else goes wrong. I'll report back next week. 

Is this my stop?

I was driving down the San Francisco Peninsula the other day and remembered something from long ago that made me laugh so it’s time for another story from the past.

Maggie was 3 and just about to start school for the first time and I was worried about everything.  Sending your child off to school is hard for every mother, but sending you helpless, medically fragile disabled child is something else entirely. She was going to pre-school in San Francisco, but I was looking ahead to kindergarten and beyond with fear.  At that time Maggie’s school program did not exist. The "involved" kids with communication needs like Maggie were sent to the Bridge School in Hillsborough,(near Burlingame on the map) which is about 10 miles south of the city.

San Francisco sits at the north end of a 50 mile long peninsula.  The Silicon Valley and San Jose are  just south of the peninsula, so you can imagine it is a very busy corridor for traffic.  I was taking the kids to visit my friend Kathleen in San Carlos, which is about 10 miles past Hillsborough. The trip to San Carlos should be 30-40 minutes.  I don’t know what happened that evening, but it took us over 90 minutes to get there. It took 45 minutes just to get out of the city. Tim and Maggie were both sound asleep in the back of the car and Eddie and I were in the front seat.

About an hour into this ride, we passed the freeway exit that led to the Bridge School. I said to Eddie, who was 8 or 9 at the time, “This is where Maggie will go to school when she’s 5.”  He looked at me in horror and said, “all the way down here? It takes so long to get here, are you going to have to drive her every day?”  I smiled at him because I appreciated his concern. He sounded just like me. I told him that it usually took about 20 minutes, not an hour and she would take the bus to school.

Eddie had never experienced a school bus because those don’t exist in the Catholic school system. A bus to him was the Muni, the San Francisco city bus system. We often took the bus or the streetcar downtown. It gets you where you are going and there is almost always something or someone outlandish while you’re riding. It’s free entertainment.

Eddie knew how worried I was about all the changes Maggie was facing. I’m sure he could not believe I was so calm about this. He looked at me like I had two heads. “SHE”LL TAKE THE BUS? How will she know where to get off.”

That image still makes me laugh, imagining my 5 year old disabled daughter on a city bus and hoping she recognized her stop and had the physical ability to pull the stop cord. I suddenly realized there were things I did NOT have to worry about.

 Trying not to laugh I just looked at him and said, “Not that kind of bus.”

Note: Maggie never did go to the Bridge school because SF Unified started her wonderful ITALC  program when she  started kindergarten. That's a story for another day.

Eddie's home!

Maggie had a surprise visitor yesterday - in fact we all did. Eddie came home!! He was in Oregon at a bike race and stopped here on his way to Monterey for the big Sea Otter Classic race.(That picture is Eddie racing at Sea Otter last year.)  It's funny, he's been competing in races like this for years, and now he goes as a representative of Felt Bicycles. I still shake my head at the rapid fire changes in his life.

Eddie told me it was possible that he would come through SF,  but I never knew for sure when it might happen and I suppose just put it out of my mind.  So I was surprised when he called Sunday afternoon and and said he was en route. I told Maggie and she started waving her arms like crazy and saying "Eddie come see Maggie' on her talker. She hasn't seen him since Christmas and was very excited..

Unfortunately he arrived at midnight on Sunday and she was sound asleep. She leaves for school at 7AM and he was snoozing. She had to wait until she arrived home from school on Monday afternoon to see him. He was working from the house. Maggie was coming into the garage when Eddie came bounding down the stairs to greet her. Her hand shot out like a rocket and she grinned from ear to ear.  It was a very heartwarming moment.

When we got her upstairs (via the very slow elevator) Eddie was waiting for her and she did the whole greeting again.  Maggie lives totally in the moment and when it's a good one, she will relive it over and over again. I wish I had that ability.

Eddie is leaving this morning, but he got up before 7 so he could say good bye to her. Her big smile faded as he said he had to go back today, but she's pretty happy she got her Eddie fix.

Be the Change and BEAT LA!

This blog is Maggie’s world and I do not usually use it for anything else, but Maggie wants a day off and there is something else on my mind.

The dreaded Dodgers come to town Monday night.  The Giants lost 3 out of 4 games to them last weekend and need to even that up with this series.  It could be a bitter battle, as it always is with these two teams.  However, that battle has to be on the field, not in the parking lot or on the street surrounding the game. The battle is between the players, not the fans.

Last weekend San Francisco Giants fan Bryan Stow was critically injured in a beating at Dodger Stadium. He was beaten by two thugs simply because he was a Giants fan.  He is still in the hospital and I hope he will make a complete recovery, but he may have life altering injuries because of brain damage sustained in the beating.  There are websites devoted to information about Bryan Stow, which I encourage you to check out. (www.support4stow.blogspot.com and http://www.support4bryanstow.com )

This is not baseball.  Baseball is fun. Baseball is wide-eyed kids watching the game while eating hot dogs and peanuts.  It is America’s pastime. It is a lazy summer evening  sitting in a bone chilling thick fog, wrapped up in a blanket while drinking hot chocolate.  (Note: That last one may be different outside of San Francisco.)

 This is criminal and if it continues, no one will want to go to baseball games.  For the safety of the fans and the good of the game, it has to change.  Ghandi said, “Be the change you want to see in the world.”  San Francisco fans can change it today and we can show the world what champions really are. You don’t want Giants fans to get beat up? Then don’t even think about revenge.  Rise above it.  Be the change.

This week San Francisco has an opportunity to show the dreaded Dodgers and those thugs what we are made of.  San Francisco is not seeking revenge or pay back for Bryan Stow. No one wearing any Dodger blue will be harmed in any way. They will be jeered and booed; insults will fly along with peanuts and beer. However, no one will be hurt because this is San Francisco and we are classier than that.  We will not stoop to that level.

I am pretty sure Ghandi HATED the Dodgers, but when he said, “beat LA” he was talking about the field.

  

Tennessee Taylor

There is an opening on Maggie’s social calendar. It seems a party planned for next week has been cancelled. The honoree left town in a hurry.  We are both happy and sad about that.

The party was for Ms. Taylor, Maggie’s former teacher. Even though she stopped being Maggie’s teacher, she was a frequent visitor to the class and volunteered to do a science project with the kids every week. Ms. Taylor left at the end of the last school year. She decided not to sign a contract to teach this year because she and her husband were going to leave San Francisco.  This City is a great place to live and it draws young people from all over the place, but when it is time to settle down and think about buying a place or having a family, many decide to go back home or somewhere where they have family.  In addition, it is just too expensive here for most.  It is unfortunate because we lose some great folks.  Ms. Taylor and her husband are two of them.

 They planned to head to Nashville where her sister lives.  Good news. Then this nasty job market interfered with their plans, neither of them could find work in Nashville. Bad news. They stayed here even though she had given up her job. Good news (for us.) Then she discovered she was pregnant. Great news!    If they got too close to June, when the baby was due, they would wait to continue the job search in Nashville.  Suddenly things started happening on the job front and her husband found the job he wanted in Nashville. Wow! Great news again.

The plan was to leave in a few weeks and get everything together. That allowed time for the kids to give her a baby shower next week. Everybody was very excited, except her doctor.  Doctor’s orders: She has to go Nashville now, get herself settled, and leave the moving to her husband.   The baby shower is off, but that's a small price to pay for a healthy baby. 

So Ms. Taylor is gone. She left yesterday and she will not be back. We will miss her. We are sorry we will not get to see her beautiful little girl who will have the beautiful name Elisabetta. However, there is facebook and blogs and we will meet her online, which is so 2011.

San Francisco, Mission High, Maggie, and her classmates say thank you and goodbye to Nikki Taylor Guerrini and her husband Richard. We wish you nothing but happiness in Nashville with your little girl.    

Frustrations a la modem

A frustrating day offline with modem problems. I can deal with the problems, it's the 5 calls to comcast, a trip to the comcast store, office max and best buy that were irritating. But we are back in business!

When I wasn't running around fetching the modem and trying to get it to work, I went to a birthday party in maggie's class. It was Tyre's birthday an the theme was Rock Star. I stopped at the Haight Ashbury T-shirt shop on the very corner of haight and Ashbury and bought a Jimi Hendrix shirt for Tyre.

 

When I arrived at school, all the kids had rock star glasses on. Maggie's were perfect with her glam rock outfit that she wore to school. 

There was karaoke, and Mr. David and his band played live music. I was a judge in the dance contest.

A busy day in which computer furstrations paled in comparison to the rock star party!

Lueza

Maggie is a huge joyful presence in our lives and the lives of many others. I always try to write about the joy or humor in Maggie life because 1) the world can always use more of that and 2) in the world of disabled children, and especially from the viewpoint of the outsider looking in, this part of life is too often overlooked.

But of course this life is not all joyful. There are some achingly sad moments as well. We are living through one now.

Yesterday I learned the Lueza passed away suddenly in the night. Lueza is a girl Maggie's age, a girl full of the same joy and light and life as Maggie. She is also a girl with cerebral palsy, a girl who needed a trach shortly after Maggie did and a girl who was in and out of the hospital all the time. She has parents who adore her and care for her lovingly. She has a sister who is devastated. All of my thoughts and prayers are with them today.

Rest well, sweet Lueza.

Giant Getaway

Maggie was a little better on Friday and Steve assured me he could handle things here, so I decided it was ok to take my 24 hour trip to Los Angeles.  I was leaving early Saturday morning. I wasn’t 100% confident about leaving Maggie.  My stomach hurt terribly from what I know was a case of the nerves.  I can be my own worst enemy.  I tried to ignore it, but it definitely made sleep difficult on Friday night. 

We went. Tim and I flew to Orange County to meet up with Eddie and his girlfriend, Grace. The four of us headed to the Giants Dodgers game at Dodger stadium. I never get to spend any time with the boys so this was very unusual.  We had a great time. Check them out in the 2d inning.

We were aware of the violent incidences at Dodger Stadium on opening night. It seems some Dodger fans do not appreciate fans of other teams – or at least Giants fans – coming to their park. One individual in Giants gear was badly beaten on Thursday night simply because he was a Giants fan. (there is a blog and facebook page to offer him well wishes or donate to help with his mounting medical bills at support4stow.blogspot.com) This wanton violence leaves a man fighting for his life and it seems a little unclear on the concept of competition to me. There are thugs everywhere, I suppose, but all he did was go to a baseball game.  We were going to a day game and certainly did not expect to witness it first hand. But we did. Nothing in comparison to the attack on this man, but violence nonetheless.

The four of us were waiting in line to enter the stadium when Tim was violently shoved by a dodger fan who said “Hey, you’re in Dodger Stadium now.”  The guy simply barreled through the line targeting Tim apparently because of his Giants shirt. He lowered his shoulder into Tim’s chest and shoved, pushing Grace out of the way in the process. Tim has both class and common sense; he refused to respond and, thanks to that, nothing happened.  In another show of class, the guy behind Tim in line just shook his head and apologized to Tim on behalf of Los Angeles. Tim’s sore chest hurt a little less with every run the Giants scored in their 10-0 rout of the Dodgers. (The only game the Giants won in a four game series).

We made it back to the car without incident. Of course there weren’t any Dodger fans to be found by then. They had all left the game several innings earlier because their team was losing.  Look at all the empty seats around us in the 7th inning. We headed back down I-5 to Orange County, went out to dinner, and went in the hot tub.

I checked in at home. Maggie was better still and saying over and over on her dynavox “Mom, come see Maggie.” 

 The stress was replaced with guilt, but  THAT I can handle. 

Cultural Exchange

We spent yesterday morning up at UCSF getting some tests done. Maggie has been having trouble keeping her oxygen levels up and i was worried about pneumonia. It looks like a slight lung collapse. She is on antibiotics and should be ok in a day or so. Hope so. I'm supposed to go to out of town tomorrow for 24 hours.  We shall see. 

We were waiting to get her meds at Walgreens. I just sat in the chair because they kept telling me it would be "just a few more minutes" (we left after 45 min). Maggie was worn out and looked quite peaked. She had the oxygen hooked up but the was still smiling and talking with her dynavox. 

A  woman went by and gave me the puppy dog eyes. and I groaned silently to myself, thinking "here we go." She walked by several times looking at Maggie, clucking and looking sad. I ignored her. She got in line to pick up meds and stared, waiting to catch my eye. Finally I looked up and smiled at her. She was well dressed and I would guess from her accent that she was  South American. She asked with a thick accent how old Maggie was. I told her, " she just turned 17". She clucked."17, ohh my"  I waited. She then asked "Is she your daughter." I smiled and said yes she is. She sighed heavily. I  knew the pity was there and she just had to express it. I waited, but not too long. She then said in the saddest possible voice, while slowly shaking her head,  "It just breaks my heart."  

There it was.

I tried to say nothing at all because it didn't really warrant a response. She was talking about herself, not Maggie. She's entitled to feel and say whatever she wants.I don't have to agree with her.But the clucking continued and  she clearly wanted me to tell her how hard Maggie's life is.  I just met her gaze, smiled thinly and said politely but with very little warmth, "You know, she's just living her life." I busied myself looking at my phone because I did not want to continue the conversation.

The woman was perfectly nice and she undoubtedly meant well, but ... please. I cannot handle pdp. (public displays of Pity). Have questions? I'm happy to answer them Want a place to dump your pity party? No thanks. There may be a cultural element at play in this particular exchange, but I cannot be responsible for that.

I suppose I COULD have said, HEY, DON'T CRY FOR ME ARGENTINA" but that might not have been appropriate. Of course I laughed at the thought of that all the way home.  

Cross your fingers that Maggie decides to get better today. 
.