Monday, March 31, 2014

Relaxing getaway or Theater of the Absurd?

Ever since Maggie passed away, Steve and I have tried to get away for a weekend. It was always so hard to do that before because of the logistics of Maggie's care, but that is no longer an issue. Still, getting away is not easy. Every weekend we have had some engagement or obligation that kept us in town. Last week we realized we had an open weekend coming up and we took advantage of it. We went to Yosemite.

Because of the 11th hour, getting a reservation in Yosemite Park itself  was impossible. We stayed in Groveland, which is about as close as you can get but is still a good 30-45 minutes away. It worked out perfectly, though and we had a great time.

There are several stories to share from this weekend, getting away on Friday, finding the charming hotel, seeing the devastation from the Rim fire, going to Yosemite Valley, Sunday in the gold country of California and more. But I'm gonig to start in the middle of the weekend. The best story comes as we were leaving Yosemite Valley on Saturday night.

 Saturday was supposed to be raining and we were lucky to get so much time in the park without dodging raindrops. The storm finally hit as we were headed back to our hotel about 8:30PM. Leaving the Valley is a climb for about 20 miles. The elevation changes rapidly from about 4000 feet to over 6000. First we hit very strange and low lying fog and then it started to rain lightly as first, then harder, then it was sleet and as we climbed and the temperature dropped it turned to snow. It was snowing hard and piling up quickly. We didn't see another car for miles, which was creepy

Steve is a good and careful snow driver, but we had his new car with which he is not completely familiar. The car has 4wheel drive, which was great, but we did not have any tire chains with us. It was hairy but we just kept moving. As we slowly worked our way down a hill, we came upon a car that had slid out. Another car was stopped as well. We asked if anyone was hurt, and thankfully the answer was no.

The driver had simply lost control of the car in the snow and could not move it. They were a family from India and they were abandoning the car right there on the side of the road. The other car had two men visiting from Texas who were trying to help. They had the two older people in their car but could not fit the remaining couple or any more of their belongings. We offered to take the other two and their things with us. The decision was to head back to Groveland. They could stay in the hotel and figure things out in the morning.

The man driving the stranded car was young, probably mid 20's. He had his wife and his parents with him. He was trying so so hard to be in charge, but he had absolutely no idea what he was doing. It took him no less than 20 minutes to get everything out of his car and into ours. The snow is getting deeper by the second.  Steve and Wes, one of the Texans, were trying to impress upon him the danger of the situation as we sat alone on a snow covered road in the mountains, but he was oblivious.

Once everything was finally in, the passengers decided they needed to be lined up differently. We ended up with both women and the Texans had both men. The younger couple spoke English and I suspect this was done so that there was one English speaker in each car. The mom wept in the back of our car. We didn't see them spin out, but she was clearly frightened by the whole thing. I tried to reassure them and made conversation here and there. I learned the son is an engineer working in the Silicon Valley and his parents had just arrived from India for a visit.

We continued our climb out of the park, leaving their rental car behind. The trip back took 90 minutes because we had to go so slowly. After hitting the summit and descending again the snow eventually turned to a hard and driving rain. That was better, but still made for hairy driving When we arrived at the hotel it took this family at least an hour to decide if they were going to stay or not. They were concerned about the price of the hotel and asked us to take them to another place. There is no cell reception and they could not call around. We were at our limit of magnanimity.This is a software engineer who rented a BMW and was trying to get to Tahoe. The hotel was moderately priced.  It was hard to buy the financial story.

We tried to impress upon them that it was now after 10PM, they were soaking wet and their car was 90 minutes away. They were somewhat choiceless. The young couple then disappeared and ran in the pouring rain  to a hotel down the road to "shop." We could not leave because all of their belongings were still in our two cars so the Texans and the non English speaking parents and us sat there and waited. Eventually they returned because no one would even open the door at the other place. He admitted they "did not have any alternative" in his lovely lilting accent. Right, that's what we told you an hour ago.

We unloaded their belongings and Steve was getting visibly agitated. Soon I saw why. Among the suitcases and other things of theirs was a set of TIRE CHAINS that had been provided with the rental car. They had chains the whole time but didn't even know what they were for or how to install them. Frankly I doubt they would have been safe with those anyway because the guy had zero experience in the snow.

Meanwhile the Texans were trying to decide what to do. They could not get to their destination the way they tried and were debating stopping for the night or backtracking and pushing on. Ultimately they decided to push on and we said our goodbyes to them with a few laughs at the absurdity of the whole thing.

Steve and I returned to our room and tried to digest the whole evening. He was stressed from driving through that storm and he was irritated with the seeming lack of gratitude by the family. I disagreed, I honestly think that kid was trying so hard to be the grown up that he was rendered useless. They were not unkind or ungrateful, just overwhelmed by the situation. Still, they probably should have said thank you at some point.

We decided it was really kind of funny. We finally manage to take a weekend to take care of ourselves and relax and recharge our drained batteries and this happens.  When we heard the family moving into a room across the hall with all their belongings, I told Steve I sure hope they keep those tire chains safe. That sent up into peals of laughter.

I said who would even believe this story? A sudden blizzard, a stranded family from India, good Samaritans from Texas, a harrowing ride through the storm and craziness when we arrived. Not exactly the relaxation we sought, but still an adventure. Steve said, "Look at it this way, we actually had an adventure with cowboys and Indians."

I can tell you that a belly laugh is pretty good medicine in its own right.

Friday, March 28, 2014

Mister Rogers Rocks

I have received so many cards and kindnesses since we lost Maggie. Everyone of them has been lovely and appreciated, and a few have really knocked our socks off, either because of who they came from or what they said or a combination of the two. I thank all of you.

Today I received a card from my friend Kathleen, and it's at least the second one she's sent. This one contained a quote from Fred Rogers, televisions' "Mr. Rogers," who I think we all appreciate a lot more in retrospect  than we did when he was on television. He was a good man with a big heart and did a lot for kids.
Often when you think you're at the end of something, you're at the beginning
 of something else. I've felt that many times. My hope for all of us is that
  "the miles we go before we sleep" will be filled with all the feelings that 
come from deep caring - delight, sadness joy, wisdom - and that in all the
 endings in our life, we will be able to see the new beginnings. 

The World According to Mister Rogers

I love this. He is right about one thing, the sadness we feel now comes from the deep love we had for Maggie. I sincerely hope he's right and there are new beginnings out there.

 I can't see them yet but I'm not sure I'm ready to look yet. Maybe I'll just go slip on an old sweater and my slippers. 

Tuesday, March 25, 2014

Miss California, with a twist.

I've been wanting to share this story, but didn't really have the energy. I think it's time now.

The month or so before Maggie passed away, she had taken to calling herself Miss California. We're really not sure where this came from but we did record her the night she decided that was her name. the video is in this post Maggie World: . Miss Congeniality - Just ask her.  As I stated in that post, Maggie was not short on self esteem.

Shortly after that night I met my friend Jennifer for coffee. Jen is a beautiful young woman who is making her mark in the world doing good works. I met her a few years ago when she worked with Ronald McDonald house and now help her out on a board for Le Donne d'Italia, a group of Italian women promoting and preserving the Italian Culture in San Francisco and especially in North Beach. North Beach is the Italian heart of San Francisco, but it seems to shrink every year as Chinatown and gentrification encroach from opposite ends. I am not Italian, but I do love North Beach, Italian food and every Italian I know and I am happy to lend my board experience (such as it is) to help Jen.

Jennifer had never actually met Maggie, but she knew all about her and always wanted to know what was happening with her. She delighted in the stories about Maggie and her antics, and really loved Maggie's attitude. When I told her about the Miss California story, Jen doubled over laughing. She said she was going to bring Maggie a sash for Miss California. I smiled, but then I remembered. Jen actually WAS Miss Italia California and she had sashes by the dozens. The smile changed to uproarious laughter.

Maggie passed away probably a week or so after that coffee date with Jennifer. Obviously I forgot all about our shared laughter as we slogged through the terrible hospitalization, the aftermath of losing Maggie and the whirlwind of planning and attending her services.

There was a reception after the Mass and I hugged hundreds of well wishers, friends and relatives. I actually had to ask my college roommate if she was there for the service because all of it is such a blur. (She was and we had a lengthy conversation...) One thing I do remember very clearly about that reception was seeing Jennifer's beautiful face and when she went to hug me, she handed me this.

It made me cry then and it does now. Maggie got her sash after all.  Though Jennifer's official reign as Miss Italia California ended a couple of years ago, she continues to do the good work.  The sash is  draped over Maggies' chair right now and will stay there.

Long may she reign.

Monday, March 24, 2014

Mixed Emotions

Never really thought about the term "Mixed Emotions" before February 15. I used the term, and really believed I understood it, but that understanding - like everything else in my life - is very different now. I know first hand that it is possible to experience several very strong emotions at once and none are particularly in control. Case in point: I thought we had the van sold over the weekend. I was sort of blindsided by the flood of emotions that raised. Literally all at once I was sad, happy, relieved, scared, angry, anxious, and sad again. The term "mixed emotions" took on a whole new layer of meaning.

As it turned out that buyer decided against the purchase so the van remains available. When that happened I was just disappointed. I want it to go, even though all of it brings up so much angst. The going will be angst ridden, but once it's gone I will be fine. I haven't pushed it very hard yet. If there is someone in this community who can make use of it, that would make me happy. I suppose those emotions will all return in a whoosh, but next time I won't be blindsided.

So if anyone needs a wheelchair van, or knows someone who does, call me! I can't be responsible for how I react, but I keep hearing tht everything is normal.

Wednesday, March 19, 2014

Treading water and making space

Day 33. Lately I feel like I'm swimming. I can't find the bottom of the lake so my feet are moving to keep me afloat. It's progress, though. For the first few weeks I was under water. Not in a gasping for air way but everything was distorted and the sounds were sort of muffled. I think my head is above water now, hopefully to stay. It will as long as I can tread water. And anyone who knew me as a kid knows I can tread water and hold my breath for a very long time. (I used to freak people out with my ability to swim underwater for a length or two of a pool.)

Meanwhile, there is visible progress being made in the basement. As I mentioned before my first order of business has been to deal with the supplies and equipment. The company came to take the oxygen tank and the mist machine. I sent the giant pulmo vest machine back to the company to be refurbished for someone else. We donated a ton of supplies to a non profit and I gave some food and other stuff to UCSF. I have a bag of brand new trach supplies to take up there today. Yesterday I brought a giant case of diapers and other supplies to the school so other kids can use them. And before Steve left for work he loaded the walker and the bath seat into the van so I can take those and other things to California Children's services and they can give it to a family who needs it. We have also made a number of trips to The Salvation Army with donations of other things.

If nothing else, that has freed up a LOT of room downstairs. So much so, in fact, there is a distinct possibility that we will be able to park a car in there by the end of the weekend. That hasn't happened in well over 10 years. This shelf is a good indicator of how things have changed. Even the plastic bins in the after picture are empty.

Of course, the biggest piece of equipment is the van. I have to sell it. Actually I WANT to sell it. it runs perfectly. Steve floated the idea of keeping it to use for transporting his dad around. But I said no. We can manage with his dad in a regular vehicle and put his wheelchair in the back. His dad can transfer in and out of a car pretty well with assistance and we don't transport him very often. But the main reason for saying no is this: The wheelchair space is so large when there is no chair in there, there is an actual hole in the van where Maggie is supposed to me. That is too much for me to bear.  Steve agreed and the van is going on craigslist just as soon as I use it to move this equipment.

If anyone out there is interested in the van, let me know. I put this on facebook yesterday and actually generated some interest. Initially, it seemed folks thought I was giving it away and were praising my generosity. I quickly corrected that notion. Make no mistake, it is for sale.  It is a great car that served us very well and will make a huge difference for another family for many years to come.

It will be hard when it actually goes, but I will just have to tread water a little faster.

Tuesday, March 18, 2014

This old dog doesn't need any new tricks

Brisco the wonder dog turned 16 last Friday. Well at least that's the day we chose for his birthday.He arrived in our home in November 1998 and the vet said he was about 8 months old, so we just counted back 8 months and assigned a day.

We had another dog for just a couple of weeks before Brisco. We adopted a sweet but very skittish stray from a family who had found her a month or so earlier and could not find the owners. That dog, Maris, was scared to death of everything and sadly, slipped her collar and was hit by a car shortly after we adopted her. It was a sad day in our house. Very sad.

Then a few weeks later Steve hears of another stray looking for a home. Needless to say,  I was hesitant. I suggested we wait for the black could to move away before getting another dog, but Steve was insistent we "just look" at him. We took the kids out to Livermore where a lovely family had taken this stray in after finding him scrounging for food at a mall. They advertised everywhere that they had found this dog and even had him neutered. After three weeks they decided to find him a home. When the rescuer heard our sad story about Maris from a co worker, she called Steve directly.

They just called him "Puppy" becasue they knew they couldn't keep him. They had a 120 lb Chocolate lab named George who was very sweet and patient with this energetic husky mix puppy, but wasn't ready to have him become part of the household. And he was energetic, but very well trained. Someone had taken good care of this dog before he got lost.

The boys were 8 and 10 years old and they were on that dog in a minute. I was still hesitant but I knew it was a losing battle. He came home with us that day. We named him Brisco after our favorite (but I believe already cancelled ) TV character, Brisco County Jr. In fact that's his full name, but we really only use it when he's in trouble.

 I told Steve, "Ok, but if this dog isn't good with Maggie he's GONE." and I meant it. Maggie was 4 and spent most of her time laying on the floor in those days. There was no way I was gong to tolerate any problems with the dog and Maggie.

I needn't have worried. Brisco was the best dog from day one. In fact, he was so good with Maggie that he quickly became her protector. When someone new came into the house, friends of the boys or therapists for Maggie etc, Brisco would station himself between Maggie and the new person. He wasn't threatening, just vigilant. If for some reason he didn't like the way this person approached Maggie, which happened occasionally, he would bark and keep them back until we gave the all clear. We didn't teach him that, he just did it on his own.

He would lie on the floor next to Maggie. She would poke his face and pull on his ears and he was so gentle with her; but he would play and rough house with the boys. We walked all over and he never needed to be on leash because he just explored and then came running back to us. But we did put him on a leash and let Maggie hold the other end and he never pulled like he did with us. (Picture at top)

 We always threatened to dress him up like a reindeer pulling Maggie's wheelchair/sled at Christmastime, but we never did it.  He played nicely with other dogs and was great with people. Well, except mailmen and UPS guys. Never much cared for men approaching our house. Handymen and husbands of nurses were also suspect. He barked at anyone who walked by our house and the entire neighborhood knew when the mail man was on the block.

One foggy night he barked and barked waking us up to tell us that there was a problem. And he was right. Our sweet elderly neighbor had wandered out of her house in her nightgown and had fallen and injured herself very badly in front of our house at 2AM. Without Brisco to wake us, she may not have survived that cold night. Her family gave him a giant bag of dog treats after that. Later he fought raccoons, and always lost.

Now he's a great old dog that rarely barks -- mostly becasue he has no clue whats going on around him. . He can't hear at all and doesn't see all that well. He is pretty agile for his age, but watching him go up and down steps is painful. He falls over periodically as his back legs don't always go where he thinks they are going to go. He doesn't care for walks anymore - if you get past the end of the block he wants to go home. He has been on a leash for the past year or so as his hearing failed and he gets panicky when he can't find us.

The night we lost Maggie he just laid at the door of her room, knowing somehow that everything was different. He made all of us feel a little better that night and many others.

So now he's 16. That's very old for any dog. He is a wonderful part of the family and we are lucky that nice family found him and then found us. Steve was right to insist we "just look" at him back in 1998.

Happy Birthday, old man.

Monday, March 17, 2014

St. Patrick's Day

I am missing my little leprechaun this morning. Maggie was always decked out for St. Patrick's Day.

ok this is actually Halloween, but she wore variations of it ever Mar 17 including below

May the Road rise to meet you, Mags.  

Thursday, March 13, 2014

Sounds of Silence

It will be four weeks on Saturday. How can that be? It seems like a moment. The numbness of the first week or so has given way to immense sadness. I miss Maggie. I have dreams in which I am searching for her and cannot find her. I feel sad all the time. Not crying and weeping, just sad.

I don't feel like I've accomplished much of anything in those 4 weeks. Oh, I've been plenty busy, but I couldn't really tell you what I've done. There are so so so many things that have to be done. I can think of about 10 ongoing projects that are all related to Maggie. I've started about 5 of them, but have completed zero.

There are so many supplies and equipment to deal with. I've been trying to find homes for a lot of stuff. If you know of anyone who needs medical equipment or supplies, let me know. There is the van, the walker, the bed, and so much more. I have ideas for some and will sell some other things, but I really do not want to throw stuff away. I did toss anything that had been used, but I have boxes and boxes of sterile supplies.  We have already donated some stuff to a non profit that has a clinic in Central America, but they couldn't use the more specialized things. In an excellent reminder of how lucky we are, the woman said to me,

"we are mostly sewing up machete wounds, we can't use the trach stuff.
 In fact, I'm not sure anyone in the entire country even has a trach."  

I can assure you there are plenty of people in any country who may need a trach, but without the ability to care for the patients, they don't get it and simply don't survive.

Maggie never would have had a chance if she wasn't born so close to excellent medical care. She would not have survived 24 hours in that Central American country or many others in the world. She would not have survived in many parts of the United States.   But she was lucky and she was born in a major city with a level three medical center close by. I can't imagine anyone reading this needs to be reminded, but I'm going to do it anyway. Maggie didn't just survive. She thrived.For close to 20 years, she laughed, she loved, she learned, she ruled the roost. She was the heart and soul of this family and she is missed every minute.

It is so so quiet in this house without her. I can hear the clock ticking and a dog barking somewhere in the neighbors back yard. The other day I listened to church bells from St. Ignatius. I could never hear those things because of the cacophony of sound to which we had grown accustomed. But now the suction machine isn't going, the nurse isn't laughing with Maggie, Maggie isn't bossing us around and the Maggie Mix isn't playing.

The silence is deafening.

Tuesday, March 11, 2014

Changed For Good

Many of you that attended Maggie's services asked about the song Grace sang at the vigil. The song was called "For Good" and it's from the Broadway musical "Wicked". (Several people thought it was the song from Frozen that just won an academy award. It wasn't, but Idina Menzel sang both songs.)

The first time I heard this song I was sitting in the audience watching the play. Immediately I thought this song is about Maggie and me. I downloaded it and listened to it a million times and it almost always made me cry. It was a given, then, that it had to be part of Maggie's memorial services. I was just going to play a recording of it, but I decided to put Grace (Eddies' girlfriend) completely on the spot and ask her to sing it. I had never even heard her sing, but I knew she was good from what Eddie had shared. Though she had never even heard the song before, and the song is actually designed to be a duet,she agreed to do it. This was Sunday and she was going to perform the song in front of hundreds of people on the following Thursday, four days later.

She did a beautiful job. Beautiful. Suffice it to say, there was not a dry eye in the house when she sang the song. It could not be more appropriate for summing up Maggie and her relationship with me and as Grace points out, pretty much anyone else who ever met her.  I am including the video of Grace singing the song,

Who can say if I've been changed for the better? Because I knew you I have been changed for good.

Wednesday, March 5, 2014

Judging a book by its cover

Everyone knows the old adage, don't judge a book by its cover. It is a great metaphor for the fact that things aren't always as they appear. Given that intro, I'll bet you think this is going to be a deep metaphorical post. It is not. I actually did judge a book by its cover and learned the hard way that adages are in our lexicon for a reason.

Just before everything happened with Maggie I started a book called Once We Were Brothers that was fairly gripping from the first page. It is about two older men who may or may not have known each other before World War II in Germany. One was a Jew, one was a Nazi. Fascinating.

Then Maggie got sick and died and I stopped reading it. I will eventually get back to it, but reading about Nazi's is not exactly the escape I need right now. Instead, I read nothing. I couldn't concentrate anyway.

Over the course of several days I saw a book lying on a table at the assisted living facility where my father in law lives. It was clearly there to be shared. I passed it by several times, but the picture of the woman in a bright red dress standing on the end of a pier on a lake was inviting. It looked light but not like a romance novel. Perhaps a New England summer mystery. Who knows? It said New York Times bestseller on the top. On approximately my fourth time passing it, I picked it up to read.

Oh. My. God. This was just about the most depressing book I have ever read in my life - yet I couldn't put it down. It was very well written. In fact, I realized just now as I was looking for the picture, it did NOT say New York Times Bestseller, it says the New York Times Bestselling author. Apparently Douglas Kennedy is an excellent writer, but he's done better with other novels.

 The book is entitled Leaving the World. (perhaps that should have been a clue). When I showed the book to my sister and asked what would you think this book is about? She guessed Suicide. Wow! How did I miss the obvious clues. I craved the seemingly carefree lady standing on the end of the pier. I don't think there was a lake in the whole damn book.

In the past few weeks I have been surrounded by friends and family who have supported and cared for us in our darkest time. The character in this book was completely opposite of me. (Spoilers here) I found myself fascinated by this brilliant woman who had no one in her life. The one joy in her life is her daughter who is then suddenly killed. WHAT?!?!?! This is the book I decide to read? Much of the book deals with her (inability to handle her) grief. WOW!

Of all the gin joints in all the world....

Still, everything happens for a reason - or so I keep hearing. I read this book from cover to cover in just a few days and realized I am really doing all right.

Perhaps I will read Mr Kennedy's best seller Pursuit of Happiness, but first I want to know how hard they have to pursue it.  But for now, I'm going back to the Nazis and Jews in World War II. It has to be lighter than what I just read.

Monday, March 3, 2014

A video tribute to Maggie

Not sure if this link will work, but this is  wonderful gift for me, especially on Maggie's birthday . Rachel Norton is a member of The San Francisco Unified School District Board of Education and she was kind enough to adjourn the school board meeting in Maggie's honor and memory. She said some lovely things about Maggie and read from Steve's eulogy. This is the video of the last few minutes of the meeting.  Note the video is in the uper left corner and you can make it full screen if you are so inclined.

 Education, Board of - Feb 26th, 2014

Thanks to Will Toomey for making this work.


Twenty years ago today our lives changed forever when Maggie entered the world. I think you already know the secret. Most of the changes were for the better.When she arrived, Everything we knew about parenting and babies and health and emergencies was turned on its ear. It took us quite a while to adapt to our new role and even longer to be comfortable in it.

But we did get comfortable.

In fact we had a blast.

Sixteen days ago, out life changed again when she left this world. Now we have to try to adjust to the world without her.

That will take longer.

Happy Birthday Maggie. It was an amazing 20 years.

                                              This is from my birthday 3 weeks ago.