Hotel California

Drive by. Haven't posted in a few days because things are so crazy around here. Everyone is fine and healthy but it's been a whirlwind of activity and I have not had two minutes to sit down and share. We've had visitors galore and outings everyday. Nothing earthshaking, just getting through the end of the Christmas vacation. Monday is back to school day. YIPPEE!

99% of the visitors we've had have been welcome friends, old and new. But there was one visitor that was a bit less than welcome. Woke up this morning and opened the door to see the nurse out. It was still dark and I thought my son had put the garbage cans out on the street but once my eyes adjusted to the dark I realized it was a shopping cart. A homeless guy decided the base of my front stairs was the perfect place for his long winters' nap. It was might cold last night and I am not unfeeling, but I really hope he finds another spot tonight. Please note, this is a first in the 26 years we have lived in this house.

This is what I saw when the nurse left. 

it was a little easier to see him when the sun came up (He slept in)

He packed up and left around 9:30, which was good. Check out time is 10AM and I didn't want to have to charge him for another day.

Never a dull moment.

Parading around the Neighborhood

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.  

  

Up the Down Staircase

I live a horizontal life in a vertical house. I need to move things around easily, store a ton of supplies for Maggie, and maneuver her wheelchair, yet I live in a house that’s 25 ft wide and three stories high. That means a lot of stairs and a lot of up and down.

 Brisco the wonder dog  and I have had quite a morning on the stairs. This dog loves to follow me up and down the stairs just in case there is a chance I will grab a leash and open the front door. You can almost hear him ohboy  ohboy ohboy ohboy. He has to follow because he is depending on his vision more and more. He can’t hear me call him when it really is time to go out. It seems Brisco’s hearing has really faded to almost nothing.

I have been up and down the stairs a lot today. There are several rugby players from the University of Nevada staying here this weekend so they can attend the Kraft Fight Hunger Bowl on Sunday. (Nevada v Boston College) We have a futon and floor space in the laundry room downstairs, but I have to get all the laundry done so a couple of guys can use that room. Every load is a trip down the stairs and Brisco follows expectantly.

In addition, Maggie's new mattress arrived and I had to get the other mattress back upstairs.I'm the only one home but I figured I could move a single bed mattress.  It was more difficult that I anticipated.; it took several tries as the staircase is rather steep. I could get it as far up as the bend on the staircase, but it would slide back down as I tried to navigate the bend. I kept stepping out of my shoes as I pushed and pulled. It did not help that Brisco was walking between the mattress and the wall pushing the mattress against me so that he could stay as close as possible.  (It’s up there now because I refused to fail.)

The best, though, was the attempt to put away Maggie’s supplies. The diapers, “chucks” (underpads for changing) catheters etc arrived in three huge boxes as they do every month. They just leave them on the front porch. I wish they would leave them in the driveway so I could eliminate some of the work of putting them away. I have to store these in the basement because there isn’t any other room. The boxes are too big to carry so I have to unload them a little at a time and bring the stuff downstairs. There are 16 packages of diapers (12 in a pack)  and 8 packages of chucks (12 in a pack) to bring down. (note this is not enough to last her the entire month, I have to buy an extra case of each.  Don’t be jealous) They’re not heavy, but bulky and I cannot carry too many at once, but I always try anyway.

I start down the stairs with some of the chucks, which for some reason are packaged in plastic bags that are open on one end. They will slide out if you pick them up from the wrong end.  Brisco waits for me to start down the stairs and then has to race me. You can imagine what happened. He brushed me as I was trying to balance too many packages at once and everything went kaplooie. I teetered but did not fall; I did, however drop the packages and there were orange chucks everywhere.  I was afraid to take a step for fear I would slip on the slick plastic so I just backed up the basement steps, went out the front door, down the front steps and into the basement form the front so I could clean up the mess safely.Here they are all stored on two shelves in the basement.

Brisco was beside himself when I went out the front door thinking for sure it was walk time. He looked at the hook where the leases are and looked back at me as if to say “WHAAAAT?” I had to laugh.

 Maybe it’s time we both went for a walk. 

Out With The Old ... as soon as I get the energy.

There is nothing quite like the post holiday quiet. All the festivities are over and everything is a mess and that's OK. Now we have to get ready for New Year's, not that we do much partying or anything. But I fully embrace the concept of "Out with the old and in with the new." I have retained the services of Tim and his truck and he will be assisting me in spending the next few days going to The Salvation Army, the dump and anywhere else that might want some of our excess.

We are extremely crowded without the Christmas decorations up and the few weeks they are out make maneuvering impossible. It's funny how fast the Christmas decorations look cluttered. My husband and I disagree on this point. If I had my way I would have taken the tree down yesterday. He prefers it stay up until the Epiphany on January 6. We compromise and take it down New Years.

 I have already packed up extraneous decorations in an effort to reclaim some space in this overcrowded house. I also managed to get rid of some decorations that we just don't use. Every year there are dozens of ornaments that do not fit on the tree and we will not longer be storing those.

I am on a tear to get rid of things. For example, Maggie received a lot of lovely new clothes for Christmas. Yesterday I cleaned out her dresser and filled up a laundry basket with old clothes that either don't fit her or that she just doesn't wear. I need to do that to every closet and drawer in the house, but that will take years.

The problem is, the exhaustion from the holiday preparation and festivities, coupled with staying up all night to care for Maggie on Christmas Eve make it difficult to sustain my desired level of decluttering frenzy. If only I got the flame thrower I asked for. Decluttering would so much easier.

As an aside, I have to tell you about my best gift.  I was surprised when my sister Kate handed me a package because my siblings and I have not exchanged gifts for years. Kate and her family were looking at me expectantly. I reached into the bag and pulled out this sweatshirt.

You realize, of course, that I AM Aunt Sally. And for those of you who don't know, "Please Excuse my dear Aunt Sally is known as "PEMDAS", a mnemonic for remembering the order of operations in solving a mathematical equation, (parenthesis, exponent, multiplication, division, addition, subtraction.) As you can imagine, this was a huge hit with the nieces and nephews. I told them I plan to wear it to every graduation, wedding or any other special moment in any of their lives and stand on a chair waving at them in front of everyone.

5 days and counting

Greeting cards have all been sent, the Christmas rush is through....

OK, not really, but I'm getting there. Most greeting cards have been sent except for the few addresses or zip codes that I need.  I have one gift left to buy and I generally know what that will be. Maggie and I will head out this morning. 95% of things are wrapped, mostly thanks to Steve.

I do  have two problems, though. One problem I cannot control and the other is something I just have to do but keep procrastinating to avoid it.

I cannot do anything about the weather, but I have a nagging concern that the boys wont's be able to make it home for Christmas. It's been storming for days and it's supposed to continue right through next weekend. The mountains have received something like 5 feet of new snow and the roads are terrible. Tim should  make it because he can just wait for a break in the weather and go, and then he will be here for a few weeks.  Eddie and Grace are coming only for a day or so because Grace has to work in Reno on the 23rd and the 26th. Then they are moving to Orange county on the 28th. A major storm could prevent the trip here. I know they can go to spend Christmas with Grace's family if need be, but I really hope they make it. I have to just let go and hope because it is completely out of my hands.

The procrastination involves the stacks of papers on the dining room table. I have whittled it down as far as possible and now have a pile that I really don't know what to do with. None fit into any categories I've created, but I can't seem to just toss them either. It's not like I can hide them anywhere, the house is full to overflowing with Christmas gifts, decorations and even extra furniture.

We borrowed the "chill out" chair for Maggie for the vacation. This chair is made entirely of foam with a deep cut out for the body, so Maggie doesn't fall out of it. (I don't leave her alone in the room, though) She can sit in something other than her wheelchair  for a break. Generally in the evening she wants to get out of her wheelchair and she ends up either laying on the floor or sitting with Steve because I really can't hold her for long anymore.

 Being on the floor often makes her cough uncontrollably so she hangs out with dad. This chair gives both of them a break and Maggie finds it very entertaining to just lounge like the teenager she is.

This chair is enormous, though and it is taking up the portion of our living room that is not overrun with wrapped gifts or Christmas decorations. When (and if) everyone arrives for Christmas, we will have to take the chill out chair downstairs.

OK, procrastination ends now. I will let Maggie help me sort the papers. THAT should take care of things.

A Breath of Fresh Air

People are often surprised when they learn Maggie’s age.  She is very small and does not look her anywhere near her age.  I am used to the shocked “16?!?!?”  when they politely inquire. I have no idea what they think her age is – I stopped trying to figure people out a long time ago.  If I get any reaction at all, its more about me than about her. I hear – “You’ve been taking care of her for 16 years?’ Wow.” (It is  nice, I suppose, though I’m never sure how I’m supposed to react to that.) I just think of her as a little girl – just as any mother would.

Recently I had the great pleasure of spending some time with a charming 6 year old girl who came to visit. Not that I ever thought it was the case, but I learned from that visit that Maggie is definitely not like a 6 year old either.  

The little girl, “Z” is the daughter of the man who painted our house last Spring. He was here to do some touch up work the day before Thanksgiving. It was a school holiday and Z was accompanying her dad. She was here only a few minutes, but she was a breath of fresh air blowing through the house. I invited her in to meet Maggie while her dad worked outside. She enthusiastically agreed and marched right in before her dad could say yes or no.  

I have to describe her outfit before I continue. Very few people could make this combination of clothing work – but she did. I’m guessing she dressed herself and that she chose her outfit with great care.   She had a red print jumper over a multi colored (no red) shirt with a completely different print, striped tights and black glittery Snow White shoes. She was absolutely adorable.

I introduced her to Maggie and Z waved and said “hello.” Slowly Maggie waved back. I started to tell Z about Maggie to eliminate any concern that Z might have. Not necessary. She was not concerned in the least, she was curious. She asked Maggie a couple of questions, and I told her what movements Maggie makes to  say “Yes” and “No”. That was highly amusing for both girls.

Z looked quizzically at Maggie for a couple of moments. I knew she wanted to ask something and I waited. Obviously, a little girl will have a lot of questions about someone as different as Maggie. I anticipated questions about her talker or how I understand her or whether Maggie hurts. What I didn’t expect was a practical question.

Z put her hands on her hips and said, “How does she get in her bed?” I stifled a laugh because the question was so innocent and so wise at the same time, and she was quite concerned.  People don’t ordinarily consider the logistics of Maggie’s life. But there was nothing ordinary about this girl. I  told her we had to put Maggie in and out of bed. That completely satisfied her.    In another minute she was telling us about a friend at school who uses a wheelchair but according to Z “she can still talk, though.” It was so matter of fact and so energizing at the same time.

Maggie laughed as Z told us about their planned trip for the Thanksgiving weekend. I told her Maggie wanted to go with her and Z was all ready to pack Maggie up for the ride. Her Dad came back in and told her it was time to go, she wanted to stay longer but cheerfully said her goodbyes to Maggie and left with her Dad.

Maggie and I laughed after she left because we haven’t had such excellent energy in this house in a long time.   I looked at Maggie and realized that despite her diminutive appearance, Maggie is  not such a little girl anymore She looked positively weathered next to Z.

I can’t even imagine what I looked like.

Rain Rain Go Away

I like rain. Really I do. California has been on the fringe of a drought for many years – never quite enough of a snowpack to give unlimited access to water. All this precipitation - rain here and snow in the mountains - means a relief from the drought and perhaps a little breathing room with the reservoir levels. The rain, therefore, is necessary and good.

Except for those people, like us, who are painting their house. The painters cannot work in the rain and the house has to dry for a day or so after it rains before they work again.

In the 22 days since the scaffolding went up, I think the painters have been here five days. They scraped and prepped and it rained. They came back several days later and put on some hideous primer (BRIGHT turquoise) and the next day it rained. The primer stayed on for a long time and neighbors were asking politely, but with concern, if this was the color we were going with. I assured them it was not. Once they heard that the relief was palpable. My friend and neighbor Debbie said she was glad, “the color was rather…Caribbean”; that made me laugh.

On the days they are here, the guys are very friendly and nice. They see Maggie’s bus coming and they scamper down the scaffolding to move ladders and drop cloths so she can get in. She waves happily at them and laughs when they are on the scaffolding. We watched three of them climb up together the other day. For some reason they go up with their back to the scaffolding, facing out onto the street. They obviously have been doing this for a long time because they can do it really fast. They look like monkeys and it is very entertaining

After a couple more days of work interrupted by rain and dry out days, the house is starting to take shape and it will look fabulous, but it HAS TO STOP RAINING. They came this morning. YAY! The skies are threatening again and rain would ruin any work they started. Nelson, the foreman, asked me if it was going to rain, and I said it is not supposed to, but it sure feels like it. I moved the nurse’s car out of the driveway and they were going to concentrate on the back of the house. Steve asked me if I was sure it was not going to rain. I just shrugged and said, “You know, I’m not God.” (He was shocked at this news.) After about ten minutes the painters left saying they were leaving to go scrape another house. It’s the right decision, but ARRRGH!

Soon the famed California sun will come out to stay. The best weather in San Francisco is generally in May and the first part of June and then again in September and October. May 1 is just around the corner and I hope to have a freshly – and completely - painted house to welcome the sunshine.

I have to go put the nurse's car back in the driveway.

Caution, Men Working!

It was supposed to rain like crazy today, but so far, it’s beautiful. Despite this, we are staying in today. Nonetheless, it’s been an exciting morning. We are getting the house painted and the job started this morning. We are literally stuck in the house for the morning, though. We can’t get out because there are workmen everywhere and getting the wheelchair by would require pulling guys off ladders and interrupting the scaffolding project.

This is something we have put off doing for a long time and can’t put off any longer. It’s been 13 years since we painted the house, and with the salt air and fog we get here that is a long time. It held up very well, but in the last year or so it’s been apparent that it needs help. Because the house is so high they are putting up scaffolding in front. (in the back there is a deck off the first floor that allows their ladders to get to the top.

This morning I pushed Maggie into the front room to watch the scaffolding go up. She cracked up when a workman walked right in front of the window. It’s one story up and we don’t usually see a person up close and personal like that. I told her he was just extremely tall but that was not amusing to her (I laughed of course) She just gave me that “Honestly Mother” look. I tried to catch a picture but I coulnd’t get her laughing and didn’t think it was appropriate to ask the guy to pose. But here is the view Maggie found so entertaining.

After this morning our ingress and egress of the house will not be impeded. In fact the scaffolding guys are already finished and gone. The painters know we have to get a wheelchair through there and promise not to leave anything in the way. I, of course will verify that with my own eyes before they leave today, but I am not too worried about it. The nurses will not be able to use the driveway for a week or so, but we will just have to do the car shuffle every couple of hours to avoid parking tickets. (fact of life here in SF)

Here are the “before” and “during” pictures with the scaffold and cover. ( It is the law in SF that the job be covered so that the lead paint being scraped doesn’t fly around the neighborhood.)

Big reveal in a week or so, weather permitting. Now that we're ready to to the storm seems to be arriving.

The Paper Chase

We continue to try to make our tall skinny house work for Maggie and her wheelchair. It is an ongoing battle and getting around requires lots of rearranging. I think nothing of stepping on the seat of the easy chair in Maggie’s room to get the back door opened or to get to the bathroom. If Maggie is sitting in her chair in her room, that is the only way to get by, unless you carefully maneuver the chair out of her room. It is faster and easier to just climb over furniture. I do not even give it a thought. The problem extends beyond Maggie’s room, though. The downstairs of the house is in constant flux to accommodate Maggie’s needs.


With the boys away at school, I have two empty (or somewhat empty) rooms upstairs in which I could work. Instead I work in a corner of the dining room just outside the door to Maggie’ room. This way I can help the nurse or tend to Maggie if the nurse is not here. The dining room is our “everything” room. We do not have a hallway leading to Maggie’s room; you have to go through the dining room. The table is off center in the room so that her chair can easily fit. We eat every meal at the dining room table (when we are not in front of the television) because what was once the breakfast room has been converted to Maggie’s room.

All the office equipment is in one corner of the dining room, and the dining room table collects everything from important papers to junk mail. Because I use it as an office, it is often spread out with my projects, nursing papers, or any number of other things.

I am buried in paper in this room and there is no escape.

Periodically I organize it all and vow not to let it get like this again. Today is that day. First, I remove the junk. Junk mail, yesterday’s newspaper, printing jobs gone awry etc. go right in the bag. You can reduce every single pile of paper by at least 1/3 by keeping a recycle bag handy. Once the obvious junk was gone, I decided to go further. I was amazed at the amount of waste we generate, and most of it is not our fault.

We receive dozens and dozens of insurance statements every week. Every doctor visit, x-ray, medical supply delivery, oxygen fill hospitalization and everything else sets off a flurry of papers. We get bills we are instructed to ignore pending the insurance companies handling. Once the insurance company pays its portion, we get another set of papers telling us so and advising what we owe, if anything. I have papers verifying that the oxygen tank is filled, and that the supplies on my shelves have been delivered. I know that. I do not need a piece of paper telling me what I already know.

Everything goes through the insurance company, whether it is covered or not. The insurance company then sends a statement telling whether or not the claim has been honored. With each claim are two pages giving instructions on coverage disputes in three languages. Sometimes they save postage and put more than one claim in an envelope, but still each claim has these two extra sheets. One I just opened had 12 pages, four were claims and eight were garbage/recycle. That means for every paper I kept I threw away/recycled three others, counting the envelope. That is an incredible waste

Every time I get a prescription filled at Walgreens, I get three receipts and a set of instruction on using the drugs. I understand the necessity of this. However, do I really need a page of instructions for 13 medications every single time I refill them? Of course not.

How can I stop this madness? We used to have the recycle bin right next to the mailbox in the basement and a lot of stuff never even made it upstairs. That worked for a while but then we had to move the recycle bin to the backyard so that we could get Maggie’s chair though the basement to the backyard where the elevator takes her upstairs. I remember long ago reading about a man in Minnesota or somewhere cold that used all of his junk mail to heat his home all winter. I would happily send this stuff to him because he is a genius, but I would rather not get it at all.

Back to the piles. Unfortunately even after culling through the junk, I actually have to do something with the stuff that is left.

Do me a favor. Do not print this.

If it an't broke, don't fix it

As we waited for the school bus this morning, Maggie and I took a good long look at the house. It needs a paint job that is for sure. We talked about how skinny and tall it is. I suddenly realized Maggie has not been in the upstairs of the house in more than two years. We used to carry her up there all the time to hang out or sleep in our room if we did not have a night nurse, but not anymore. She is too big. Maggie is limited to the four rooms downstairs because there is no access to the upstairs bedrooms.

We have loved in this house for 22 years. It was my grandmother’s house and we bought it from my dad before we had kids. It was such an enormous house when it was just the two of us. That changed as kids arrived, and got bigger and continued to accumulate “stuff.” With all Maggie’s equipment added to the mix we really are shoe horned in here now.

This house is very typical San Francisco, it goes straight up, and that makes it among the worst possible domiciles for a wheelchair. We have made adaptations to make the house work for us; we moved Maggie downstairs and converted the breakfast room into her bedroom. We remodeled to add a shower to the half bath off that room and my husband built a deck off the back. We had an elevator installed outside from the back yard up to the deck off Maggie’s room; it does not go all the way up to the bedrooms.

Most of the work was done about five years ago when Maggie was half the size she is now. She’s still very small, but as she grows, her equipment grows with her. The shower chair fills up the shower now. There is no room for Maggie to hang her legs off the end of the chair. When she gets a shower, she is wedged in there with her legs against the wall. Maneuvering her wheelchair around the four rooms downstairs takes some engineering as well.

There are many doors in this house, including French doors in the living room and into Maggie’s room. We have removed the two dispensable doors into the kitchen, but the rest of the doors are necessary. The wheelchair fits through the doorways, but often an open door from one room blocks access in another area. For example, here is the open door to Maggie’s room blocking the doorway to the kitchen. We have the same problem in the hallway. The open doors from the living room and the basement create obstacles. In order to get through you have back the wheelchair up and go around to shut the doors. Maggie helps sometimes. When we are coming out of the kitchen through the doorway pictured, she will often get her foot behind that door and use the high muscle tone in her legs to swing it closed ahead of us. It does not always work because she has to hit it just right, but

when it does, she is very proud of herself.

The large wheelchair also means our dining room table is off center. The dining room is the pass through from the front room to Maggie’s room, so we need a wide enough area to make it through with the chair. It doesn’t really matter except the chandelier always looks a bit cockeyed because it’s not centered above the table.

When you get right down to it, this house does not work for us at all. The adaptations we made are no longer effective and I am not sure what else we can do. Occasionally, I look at flat ranchers and marvel at how much easier it would be for all of us; but I know we will likely never move. Getting a house like that would likely require relocating to the suburbs, and for many reasons, I do not think that’s for us.

We are city people and we take advantage of the amenities of living where we do. Golden Gate Park is just ½ block away. Most importantly, however, all of the services Maggie receives are county based and San Francisco City and County are one and the same. Leaving the City means moving outside the county and starting everything over again. School is working, the nursing is set up, her doctors are just a few blocks away, and she is familiar and happy. In addition, Steve would have to stop riding his bike and commute which would be more time away from home and more frustration. Personally I used to be adamantly against moving to the ‘burbs, but I don’t feel that way anymore. At this point, I would probably be fine either way, but I do love living here, despite the Rubik’s cube we have to do every time we want to go from room to room.

For now, we will just ignore the hassles and the dings in the wall from repeatedly missing the tight corners while pushing the wheelchair. It may not work very well, but it ain’t broke either.