Monday, September 30, 2013

Two days off

I slept in today. Steve handled all the morning madness. Maggie got off to school without me. At least I hope she did. 


I don't know for sure because it's 830 am and I am 200 miles away. My mom, my sister Joan and I stole away to beautiful Lake Tahoe for two glorious days. 

The weather is cool and crisp and the wind is blowing. It feels great. We are staying at my friends house which is located right next door to to the house my parents owned for 30 years.  They sold it in about 1999 before my friends bought the place next door so it's quite a coincidence.

 Of course we had to check out the changes to the place that my mother designed. Here's what it looked like in about 1995. Maggie, the boys and I are in this picture along with my mom, my brother Pat and his family. That area of the deck is completely gone now and so is the tree that was growing through the deck just behind all of us. 

There's no one there, so we couldn't ask to go inside (and you know we would have). The house is spruced up and they changed the amazing giant deck in the back into two smaller decks. My mom did the inspecting.


There are great great memories in that house. My mom would move up here for the summer with however many kids could go with her and my dad and the rest  of the kids would come up on weekends. My dad's "weekends"often went Thursday to Tuesday in the summers. 

Joan reminded us that she and my brother Pat, the two youngest siblings were up  the longest and even went to summer school a couple of summers. She wanted us to know that time wasn't wasted. She learned to make this in Tahoe-ology. He is our mascot for these 48 hours. 

I spent a lot of time up here too but not enough to have benefitted from Tahoe ology like Joan did. By the third year of high school I always had a summer job but I came as often as I could. (Two summers I worked in my dad's office so three day weekends were a breeze)

 We came a lot when the boys are little too. We didn't come up here much after Maggie was born because she couldn't handle the altitude. My parents sold the house when Maggie was about 5.

Great memories. Great getaway. I really needed this break. I will not be returning to reality until tomorrow. 

Tuesday, September 24, 2013

Tragic to Magic

Well, it happened, just as I predicted. Disneyland has stopped - or at least changed - its policy with regard to the disabled being able to go to the front of the line. It's not terrible, but it's kind of sad.

I wrote Maggie World: Perking along a few months ago, talking about some folks who were abusing the system at Disneyland hiring disabled "guides" to assure them front of the line status at the park. IF that is true, I can only quote Daffy Duck, (a Disney competitor):

I use the word "if" on purpose. It is just a little too convenient that this horrific story with anonymous evildoers get all this press and 90 days later Disney changes its policy. Quite convenient. It sounds a little like Disney magic to me - orchestrated perfectly like everything else they do.

The changes are not horrible. One who is "deemed disabled" (whatever that means) can still avoid the lines for the most part. They will be given a reservation to come back to the ride at a certain time. It's good. Not AS good, but good. Here's the story:

I went to a conference sponsored by Disney a few years ago and they shared a slogan they use internally. When something is going wrong for a guest they just  "Change the tragic to magic." Perhaps a crowd is getting unruly because of the long lines. Before it gets out of hand,  Mickey Mouse appears. It's Magic! Everyone is happy again!

This policy change reeks of a little "tragic to magic" at work. Disney is still better than most companies when it comes to the disabled, even with these cutbacks, but it feels a bit manipulative.  Instead of just cutting back and updating their system, which would have brought many cries of FOUL! Disney blames these unidentified folks abusing the system.   Disney comes out smelling like a rose for merely cutting back on a program instead of eliminating it.

That's an E ticket I'm not buying.

And if you remember what an E ticket is, go take a nap.

Monday, September 23, 2013

Bowled over

There are very  few sporting activities in which Maggie can meaningfully take part. This is not to say that there aren't wonderful athletic opportunities for people who use wheelchairs; there are. But Maggie is at an altogether different level. Competitive basketball and other para Olympic type sports are just not going to happen for her. Even special Olympics is a horse of a different color when it comes to Maggie's participation. Generally it requires an able body person pushing her or participating "for her." Maggie loves it but she's not really doing it.

There is one sport that Maggie can actually do with a minimum of adaptation. Bowling. She gets in there and takes her licks and laughs her head off the entire time. You really haven't lived until you've been bowling with Maggie and her friends. With the use of a ramp for the ball, Maggie and her peers can send that bowling ball flying down the lane toward the waiting pins. The ramp simply allows them to set the ball in motion, it is no guarantee of success. There are gutter balls and strikes for Maggie just like everyone else. 

We went to Sea Bowl last week to bowl with Clay, Ben and Thanh. We should have been warned that this was playing for keeps when both Clay and Ben had their very own ramps. Ringers, the two of them. Not only that, Clay actually had an extra bowling ball that he gallantly allowed Maggie to use. (It was interesting to note that the ball did not have finger holes, but of course they weren't necessary for this crowd)

With the seamless help of Dustin and Bryce, the four bowlers were ready. The ball is placed at the top of the ramp and Maggie would give it a push, laughing at the noise the ball made in the lane and laughing harder when the pins were actually knocked down. This is her face after she bowled a strike. 

There were a few other issues for Maggie. She extends her leg when she's excited. Her foot and toes were directly in the path of the ball and that could have been dangerous. I would have a hard time explaining a broken foot for Maggie at the ER so I had to hold her foot down. 

Maggie was excited to get going and would push the ball the second it was in front of her. On one turn, my hand was run over by the bowling ball. I was protecting her foot, but forgot about my hand. That will teach me. I did post short videos of each of the bowlers at my YouTube channel. I happened to catch Thanh's strike. Maggie's is here for your viewing pleasure.


Maggie held her own but Clay was the high scorer for the day. But her competitive spirit awoke. I have a feeling there will be practice practice practice so Maggie can get him next time.

I just need to get some gloves. 

Tuesday, September 17, 2013

Going round in circles all the time.

Another busy week. It sees that all  do lately is run here and there to deal with something Maggie needs. This is nothing new, of course, but I'm finally getting to the point where I realize I have to get some help. The hamster wheel is going faster and faster and I am getting old and slowing down. Bad combination.

The realization hit last Thursday when a combination of events happened that had me racing north and south on the freeways. I had a meeting in San Rafael, which is 20-30 minutes north of San Francisco. I needed to be home by 3:30 to lift Maggie from her chair to the bed for some of her afternoon procedures. The meeting went long and I found myself flying down the freeway praying there wouldn't be any traffic on the Golden Gate Bridge. Fortunately there wasn't, but it was nearly 4:30 when I arrived and poor Maggie was a bit uncomfortable because of the delay. I had to be in Corte Madera for a dinner at 6, and that meant I had to turn around and head back across the Golden Gate. As a bonus,  traffic is a certainty leaving the City in the evening.

This presented a problem for the next set of procedures, which should be three hours later. I would still be at dinner and I couldn't make her wait again. The nurse and I decided to do the next set very early, like an hour later, so that Maggie wouldn't be uncomfortable. That would buy me some time on the back end. It wasn't optimal, but we had to make do.

I never have to do things like this because I generally 1)don't have meetings during the day, 2)don't have meetings or dinners out of the City, and 3)don't schedule things when Steve is out of town, which he was.The reality is that it takes two people to deal with Maggie. I depend on the nurses but I have to face facts, we need more help. Even those nurses who can lift on their own need my help to order and fetch supplies, fill prescriptions, get the laundry done and drive Maggie where ever she needs to be

As I jumped back into the car to head BACK across the Golden Gate Bridge, I thought to myself,  hmm, if I had a normal life I might have spent the last 90 minutes having a cup of coffee or wandering around a mall killing time before my dinner. Instead I spent an hour driving 25 miles south and  then another 10 miles north again so I could  help Maggie for 45 minutes. I spent time and gas going around in two huge circles.  It was ridiculous and exhausting, but I was choiceless.

Yesterday Maggie had a doctors appointment, so I drove her to school, and returned. I went to work at the hospital , ran back to school to get her so I could come right back to the hospital for her appointment. More circles.  It's time to figure out how to continue to care for Maggie and live some semblance of a life outside of this house. I can't keep doing it the way I have been.

I'm getting dizzy

Wednesday, September 11, 2013

Ambassador Chris Stevens

Everybody over the age of about 15 years old can tell you what they were doing 12 years ago this morning. September 11, 2001 is seared into our hearts and minds. It changed our country and it changed us.

Last year there was another September 11 attack killing 4 Americans, but this time it happened in Benghazi, not New York and Washington DC and in the skies over Pennsylvania. There are far fewer of us who remember that day as clearly as we do 2001. But I am one of them because one of those four Americans was our friend Ambassador J. Christopher Stevens.

Chris and my husband Steve had been friends for over 30 years since their days as roommates in college. This picture is from October 2011 when Chris came over for dinner as he did whenever he was in the Bay Area.

I went to a meeting that night and Steve called in the middle of the meeting saying something had happened in Benghazi. I told him not to worry because the Embassy is in Tripoli, not in Benghazi. I tried to concentrate on the meeting and then on the lecture I went to afterward. I apologized to my friend Mark for constantly checking my phone throughout the lecture, but I was desperate for information. There was nothing to know. Yet.

I came home and we watched the news. By then we knew there was one American dead, but we didn't know who it was. I searched Twitter and CNN and everything else I could get for breaking news. We rationalized that if the Ambassador were hurt or killed it would be all over the news and for some reason we took solace in that. I was sure he was OK, but before I went to bed I sent Chris an email because I knew at the very least, he had lost a member of his staff. I wished him well, told him we were worried  and asked him to check in when he had a minute. Of course, he never did.

I woke up early the next morning, maybe 5:30 or 6:00.  Steve was still asleep. I grabbed my kindle looking for news. It opened up to facebook and of course I was distracted. I saw a picture of Chris that someone posted and I smiled to myself. Chris had a facebook page but rarely if ever used it. It made me smile to see his picture there. I scrolled down and there was another picture. I didn't smile this time. The morning fog and distraction lifted and suddenly I knew why there were pictures of him.

My fears were confirmed instantly. I gasped and woke Steve who could tell that something was very  wrong. Steve is used to me waking him with some problem or another usually Maggie related. Those are graduated in terms of importance. Equipment malfunctions are one thing, but medical emergencies are another, He has learned to read my sense of urgency from his sleep and he knew this was bad. He turned to me and said "WHAT!?!?" I looked at him and said quietly, "It's Chris."

Steve was in complete disbelief and we looked at the kindle together as the television came on. We watched the reports in silence with wide eyes. We were hearing a major news story affecting all of America, and they were talking about our friend Chris. It was surreal.

We went about our day in a robotic fashion. I got Maggie off to school and Steve went to work. Within a couple of hours Steve was being interviewed by several different news outlets. It started local and went national by the end of the day. Steve said the weirdest was his interview with NBC nightly news. They asked him to come to the Moscone Center for the interview. NBC was already there covering the release of some new Iphone gadget. Everyone was all atwitter about that. Steve waited to be interviewed by the national news while listening to people go on about the newest toy. The disconnect was too much.

It took months for things to return to even a semblance of normal. Steve spoke at a memorial service at City Hall a
 couple of months after Chris died. We were seated next to the Libyan Ambassador to the United States and met Senator Feinstein and former Secretary of State George Schultz and many other dignitaries. To say these are not our normal circles would be a gross understatement. We had to listen as the death of our friend became a political football in the national election and beyond. Well meaning acquaintances could not help but share with us their political spin on what happened parroting either FOX news or MSNBC, neither of which had any credibility for us. For us it wasn't political, it was personal.

 Eventually, though, things calmed down and we could just grieve about losing Chris. But grieving wasn't enough. Steve needed to DO something.

Since then, Steve has worked with Chris' family finding ways to continue Chris' legacy of "people first" diplomacy. Steve and Austin, another of Chris's close friends, raised funds, rallied current and former fraternity brothers from Berkeley to contribute to the effort and to carry on Chris' good work.

Maybe we can't all be Ambassadors, but we can all try to understand one another a little better. Wouldn't the world be a better place if more people acted like Chris Stevens? Indeed it would.

Now a year later, we still miss Chris. We are still devastated by what happened. But we are looking forward. Programs are being put into place to continue his work with improving relations with the Middle East using student exchanges. The State Department has a program, the John Christopher Stevens Fund is developing programs and we are doing the same thing. The next Chris Stevens is out there, and these programs will help find him or her and nurture the interest and  natural talent they have to make a difference in the world.

 Today Steve and Austin were interviewed by Channel 5 again and they both had big smiles remembering Chris. It's hard not to. He was the most positive person in the world. The interview is here:

 If you want to know more about Chris I suggest you check out to see posts from relatives and friends from all over the world as well as from admirers who never met him.

For Chris Stevens, Sean Smith, Glen Doherty and Tyrone Woods, killed in Benghazi last year and for the 3,000 killed in America in 2001: we honor you all. You are not forgotten.  

Tuesday, September 10, 2013

No crying in Baseball, Tin Man

Days have been whizzing by so quickly lately I've barely had time to check in here. It's not a ton of drama or anything, just bad time management by me.   So I thought I'd check back in and mix my movie metaphors right off the bat.

Yesterday I had the honor of speaking briefly at a meeting to kick off the transition of UCSF Benioff Children's hospital from its current location on Parnassus to Mission Bay. The move itself won't happen until February 1, 2014 but the logistics of this move have been years in the planning.
I knew I was going to say a few words. Five of us were asked to share a few thoughts. The hospital executives need to hear from the actual patients and families periodically. It makes them remember why they do what they do.

These speaking gigs are nothing new for me. I have been participating in panels and done other speaking things many many times over the years. They do take a lot out of me, though, because I tell a room full of strangers about Maggie. It can get quite emotional. It rarely does, but it can.
And it did yesterday.

You just never know when the emotion of life is going to hit you. I know I can't control it and I really don't even try. These are honest emotions and they bubble up from time to time.  It is far easier to talk about screw ups in the hospital or terrible communication from providers. It's easy to make fun of people who have acted foolish. It is harder by far to express the depth of gratitude I feel for the work they have done. That's what got me yesterday. 

Many of the people in the audience are the doctors I routinely boss around when Maggie is hospitalized One of those docs came up to me after me little spiel. He was quite taken aback at my show of emotions. He had never seen that side of me. When he was attending in the ICU he watched me keep controlled in terrible situations. He has also seen me after days of little or no sleep, seen me lose my temper, and seen me become incredibly frustrated; but he had never seen me cry.

  He approached me with his hands out in a sort of "what gives" stance and said "There's no crying in baseball." (That made me laugh out loud for several minutes.) He said he was sitting in the back, heard them introduce me and was ready for my wise cracks. When he heard my voice cracking he said he was straining his neck to see if it was really me. It was, but a different "me" than shows up with Maggie in the hospital. 

 I had to tell him when Maggie is hospitalized I am in Mama Bear mode. I have my armor on and I'm ready to fight. I will fight for anything she needs against any opponent, as will every other mom (and dad too, but I speak from the maternal point of view.) When Maggie is not hospitalized and I need to express the fears I have experienced and the gratitude I feel, the armor is off. When the armor is off, I can become emotional quite easily. 

I told him not to worry. I will be armored up as soon as I need to be. And if you cry when wearing armor, you rust. But you can still blow off steam. Ask the Tin Man.

Because it made me laugh, and because it is such an awesome scene, I have to share the No Crying in Baseball scene from "A League of Their Own"  Enjoy

Wednesday, September 4, 2013

Technical difficulties of the third kind

This is a new computer and I am constantly surprised when I press a button and something unexpected happens. I was just about done with a post yesterday when it disappeared from my screen. It was quite frustrating, and I had to just walk away.  Hopefully the computer did not decide the post was too dull and did a self edit. I am in big trouble if that happened.

I awoke early this morning and took a shower before coming downstairs, which is unusual for me.  Generally the mornings are so jam packed that I have to wait to shower. It was leisurely and nice and I arrived downstairs refreshed and ready to face the day. it didn't last long.

 As always I went straight to Maggie's room where I found Lucy the nurse struggling to hold a broken trach tube in place and get a new one ready. I hopped into action. It is very difficult to change a broken trach tube alone. You have to hold the old one in place and then switch it for the new one and then hold that in place while you thread the ties through. Basically you need three hands. Plus, this is all done on Maggie who cannot stay still. The trach change doesn't hurt her and she is very cooperative, but her movements are involuntary.  I took over while Lucy held the tube in place and Maggie was all squared away with a nice new breathing tube.

Then I had a cup of coffee, though the caffeine jolt was unnecessary

This is the second heart rate raising incident in two days, though the other was just for a moment. On Labor Day Maggie and i went downtown to shop. We didn't buy anything, but we wandered around Union Square and hit both the San Francisco Center and Westfield mall on busy Market Street. It is a shopping mecca and Maggie loves it.

Market Street is the main artery in downtown San Francisco. it is an incredibly busy place with street cars and buses everywhere in addition to taxicabs and regular cars braving the madness.
As we wandered back toward our car, we had to cross Market. No problem, there are plenty of signals and it's pedestrian friendly. We crossed at this very intersection shown in the picture and for the first time ever, the front wheel of Maggie's wheelchair got stuck in the streetcar track. I pulled and tugged but nothing happened. Buses and streetcars were waiting for the green light to proceed.  I could see the pedestrian light counting down and could feel some adrenaline starting to pump. Maggie was oblivious to this of course. She thought it was hilarious that I kept yanking on her chair I yanked again with that mom strength and out it popped. We got to the other side of the street and I saw a man and a woman with their eyes popping out watching us. The guy just said "good job there." I nodded but just kept walking, not trusting my voice yet. 

 There wouldn't have been any real danger, of course, Maggie was clearly visible and she would not have been hit or anything. But Maggie and I would have shut down Market street while we got her unstuck.  That alone was getting my heart racing.  

As we drove home, I told Maggie she was Nell and I was Dudley Doright. She was unimpressed. I think she puts me in more of a Snidley Whiplash category. After all, I'm the one who got her stuck on the tracks. 

That's three very different types of technical difficulties in three days. Of the three, I'll take the computer problems. they are aggravating, but not scary. 

Here's to a calmer remainder of the week. 

Monday, September 2, 2013

Labor Day Redux


Last years' labor Day post recycled

Maggie World: The people who brought you weekends

I posted this on Facebook this morning and a friend let me know that Local 85 merged with  local 278 and is now local 2785. Her husband Ed Lynch is the current business agent (my great grandfather was the first) and he is reading the blog at the Local's Labor Day Picnic today. Very cool!