Connections and elections

It used to drive my husband and kids crazy that I would run into people I know all over the city. I told the boys if you stay in San Francisco, the same thing will happen to you. San  Francisco is a world class city, but it is not a huge place. If you grew up here and stayed here like I did, you know a lot of people, especially if you are part of a smaller community within the city. I am a part of several smaller communities including the community of disabled children and special education. I have met countless people through Maggie. But that cannot hold a candle to the San Francisco Catholic school connection. 

I went through the Catholic schools as did all six of my siblings, my parents and most of my cousins. Many people move away, but like many who stay in the City I sent my boys through them too. That just multiplies the effect as the next generation of connections is made. It is an enormous group of people but you can make a connection in less than 30 seconds. If you didn't actually go to school with them you knew their brother or lived next door to their cousin or something. Even though we move on and meet new people and socialize with friends we've met as adults, those childhood connections are strong. Even stronger if you have kids doing the same thing. We are basically raising our kids just as we were raised. 

On of those people is my friend Nancy Hayden Crowley. I have known her since I was in the 5th grade and she was in the 2nd grade. She was a hilarious kid and is a hilarious adult. As a kid she was friends with my sister Ellen, though as we got older and age differences didn't matter any more we all hung out together. She has a son Maggie's age and a daughter a bit younger, but it is not the kids that connect us. It is so many years of knowing each other so well. It takes you back.  Whenever I run into her, which is often, I instantly feel like I am wearing my middy and tie in the St. Stephen's school yard. She lives in the house she grew up in, sent her kids to St. Stephens and  remains an active member of that neighborhood and community. Now her husband FX Crowley is running for supervisor of District 7.

I drove past her house the other day and she was organizing her husbands campaign workers as they canvassed the District. I stopped and she ran over to the car to talk to me and say hello to Maggie.  She gave us campaign buttons and offered donuts, even though we live in District 1. We laughed through our entire conversation, which was only about 10 minutes because she had to get back to work. 

As I drove away I thought to myself,  I cannot pretend I am on the school yard anymore. Of course I know other people in City government but this is different. If FX Crowley wins this election Nancy will be the first lady of District 7.  I don't think San Francisco supervisors host too many State Dinners in their districts, but I would love to see Nancy presiding over one.  

Middys and ties will be de rigueur.

my 6th grade class picture from St. Stephens

NIMHS (Not in MY Handicapped Spot)

San Francisco is embroiled in yet another parking debate. It appears that we will now have to pay for meters on Sundays. People are outraged, but I'm not really sure why. It was bound to happen. Sunday is no longer the "day of rest" it once was. Stores are opened and people are out doing the same things they do on Saturdays. I don't want to pay, but I will. Or I'll get more parking tickets, because those are bound to happen too.

Of course those with handicapped placards don't have to pay for meters. Not in San Francisco or anywhere else in California. (I'm pretty sure that's the case in most if not all states, but I'm not sure of that.) If Maggie is with us, we put up the placard and we get to park for free. Some take great issue with that. To them I say: wanna trade problems?

This letter to the editor was in the Chronicle this morning:

Make everybody pay

We can open up more parking by charging a fee for disabled placards. $500 a year for a placard would make dishonest people think twice about applying. It would be small fee to pay for convenience for a truly disabled person. Nothing should be free of charge. Also, make handicapped parking available to all after 9 p.m. Kerry Mark, San Francisco Read more: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/04/04/EDC31NUNND.DTL#ixzz1rBSRC7pB  

Because people with disabilities aren't allowed out after 9?  *Shakes head*  Kerry Mark, whoever you are, you should not upset me so early in the morning. 

I just submitted this response to the Chronicle . I wonder if they will print it. 

I circle streets looking for a space that will allow room to lower my daughter’s wheelchair ramp and unload her giant wheelchair with the additional 50 lbs of medical equipment hanging off of it.  This one won’t work because there is a tree blocking the path of the ramp, that one has newspaper racks, a third would only allow the ramp to open into traffic.  Every handicapped space is filled and nearly every meter downtown has a car with a handicapped placard in the window.  Where are all these handicapped souls? They certainly don’t attend the meetings.

   

When I  witness seemingly healthy able bodied individuals bounding  out of vehicles with a handicapped placard in the window, I  try to give them the benefit of the doubt. Many disabilities are invisible; but many people use handicapped placards illegally.

Instead of Kerry Marks’ ludicrous and cold hearted suggestion that a $500 annual fee be imposed to obtain a handicapped parking placard, (letter April 5) how about some rigorous enforcement against those who obtain and use them unlawfully.  Imposing a significant fine on the scofflaws would bring in far more revenue that imposing fines on the truly disabled.  Sally Coghlan McDonald, San Francisco

I feel better already.

I Am Not a Crook

The budget crises in California is legendary. Everything has been cut to the bone and some things eliminated altogether. Things are much harder for disabled children then they were when Maggie was young, that is for sure. Parents have to fight much harder and pay much more for less services than were available to Maggie when she was young. From the sounds of it, things will get worse before -- or if – they ever get better.

It’s not only services for the disabled that are cut, of course. All services are effected, including police and fire departments.  A man was killed in Berkeley over the weekend because cops were only responding to emergency calls and the victom’s call to the police was made to the local number instead of  911. Ridiculous and tragic. A friend of ours witnessed an assault and called 911 but the police never responded.  After 30 minutes of bleeding,  the victim simply got up and walked shakily away over the protestations of our friend and another witness.  Now in addition to a crime, there is a public health situation because the man was dripping blood as he walked away.  In another instance a friend was “jumped” and dissuaded by the police from filing a report. Since she could never have identified her assailant, she went along with that.

If the police cannot respond to or don’t want to file a report in those situations,  all serious crimes,  someone has to tell me why a cop can make a u-turn across Geary Street, a six lane street, to cite my son for littering. LITTERING.  (Admittedly, he did dispose of a free sample of some drink inappropriately, as did 25 other people because the only trash can was locked.) Never mind, I already know the answer. This infraction is income generating while unsolvable assaults are not. The fine for littering is close to $500. That pays for the shift for the officer for the night.

I’m generally not so jaded, but it is difficult not to be.  Maggie’s school nurse was recently cited while parked in MY DRIVEWAY. We let her use the driveway everyday because there is two hour parking on the street and she is with Maggie at school for 7 hours. She would be ticketed every single day. She drives a van which just fits in the driveway. One day her car was less than an inch over the line and she was hit with a $100 ticket for blocking the sidewalk.

The second line is the key and her bumper is about 1 inch over it. Ironically, this line is the boundary to insure that a wheelchair can get by behind the car. She is parking there because of a wheelchair user and still gets tagged. We explained that in our letter to the Parking and Traffic department including this picture of Maggie getting by the car on the side and explaining that she could easily pass in the back.

I also explained that we have given up our driveway, that we have five or six nurses that care for Maggie and there is no pass available that can be shared among the nurses.  Result: tough bananas. The $100 fine stands because it is possible for us to purchase a pass for each nurse at a total cost of $500 or 600. This is after we have paid the city $200 ourselves for the privilege of parking on our own street for more than two hours at a time. 

I call foul.

It seems to me that the budget crises is being solved on the backs of the honest citizenry.  Crooks who assault people walk away because the cops don’t have the manpower to respond, but skirt a law that generates income for the city and they find a way to be there.

I am not a crook, and I’m paying for that.  

Be careful what you wish for....

Let's just get it out there. There is no pleasing me.

You have all read my various posts about Maggie being ignored or invisible to society. You've probably gagged over my gushing love of San Francisco's quirkiness. Both of those were turned a bit on their head on Saturday.

Part of San Francisco's quirkiness is the homeless population which contains far too many people with mental illness who wander the streets lost in their craziness. This is a population that sees Maggie very well and always stops to engage in conversation with her. It's fine, though a bit uncomfortable at times Saturday was definitely uncomfortable.

We decided to go to the main library to check out the selection of books for the "Visually Impaired and Print Disabled." Maggie's vision teacher arranged for her to get this book reader specifically designed for the visually impaired. It could be a great thing for Maggie but so far she has shown very little interest. It didn't help that the two books they sent were about George Washington Carver and Growing your own vegetables. I thought if we found some stories that interested Maggie she might really take to this medium and could get interested in all sorts of books.

The main library is in Civic Center. City Hall, the Civic Auditorium, the State Court building and the Asian Art Museum, all fantastic buildings surround Civic Center Plaza. It looks very stately. It is also a haven for the homeless, who have nowhere else to go. Generally the area is teeming with people because there is always something going on. Saturday was strangely quiet and the more colorful individuals, who are generally part of the background ambiance, were front and center.

First a woman in the library asked a ton of  too personal questions and sort of followed us around. She was harmless, but a bit intrusive and inappropriate. Later, a man in the audio books department told Maggie and I to watch a certain move so we could grow spiritually, emotionally, physically and mathematically(?) and every other way. OK. A close talker with strong opinions but still harmless. We were polite, but kept moving.

We decided to walk over to City Hall. As we approached there was a group of well dressed people with large bouquets of flowers waiting on the steps. They were kind of blocking the wheelchair ramp but before we asked them to move, Steve popped up the steps to see if the building was opened. It was not. I stopped pushing Maggie while Steve went to check. Big mistake.

In the moment he ran up the five steps, a woman standing with the group came bounding toward Maggie and I. I hadn't noticed her before, assuming she was part of that group. But she was not, and I dare say that group was probably relieved that we happened along to draw her attention away from them.

She was shoeless, though, curiously, she had on what appeared to be brand new socks that matched her pants perfectly. Both were bright orange. She was missing a few teeth and her bare arms, visible because she was wearing only a .tank top, were badly scarred as though she had been terribly burned at some point. She started talking to Maggie as though I wasn't there. She was squatted next to the chair holding onto Maggie's tray with her face very close to Maggie's. "Hi baby, how are you. you are beautiful. I like you." I was very uncomfortable and then she started stroking Maggie's arm. Steve bounded right back down the steps and we looked at each other sort of stricken. We don't want to be unkind, but touching is NOT ok.

The woman wasn't doing any harm but she was way past the boundary and she was kind of freaking us out, Maggie included.  I just started pushing the chair making goodbye sounds. She didn't want us to leave, telling us to slow down and where are you going.  Why are you walking away? What's your hurry?"

We just strolled along as though nothing untoward had happened. It was just a couple of minutes. I never moved from the back of the chair because I wanted to get out of there. I could not see Maggie face. When Steve came back down he was as horrified as I was that this stranger, of questionable hygiene, was touching Maggie. He told me later that Maggie was giving her the "stink eye."

 I felt sick to my stomach. It was disconcerting on so many levels. Steve and I were both bothered by this tremendously. It's so wrong that this woman has to live on the streets and it's not her fault.. She was clearly mentally ill and obviously had gone through a lot of things in her life. But it's still not ok and I didn't stop her and that bothers me tremendously.   She was not violent, but she could have been. She did not hurt Maggie, but she could have. I just stood there trying to be polite and wanting to get away as fast as I could.

After this I will not complain (for a while) about people who ignore Maggie. In fact, the next twenty people who ignore Maggie or treat her like she's invisible might just get a big kiss from me.

Because that's not inappropriate at all.

Where did I leave my heart?

Happy Valentines Day to all.

Maggie went off to school with chocolate hearts for all her friends and teachers. In years past we've done more elaborate valentines, but she is going for the understated and classy approach this year. That and this day sort of sneaked up on us giving us no times to prepare. Oh well. The thought is pure.

We are looking past Valentine's Day and President's Day to Maggie's upcoming 18th Birthday. We are planning a big party and all energy is focused there. Maggie thinks the priorities are just right.

If you mention her birthday she starts waiving her hand in the air. She is actually looking forward to it, which I believe is a first. Maybe she's just looking forward to being 18, so she doesn't have to live by my rules anymore.

For those of you in San Francisco, pay attention to the Tuesday noon whistle/alert today. Instead of the normal air raid sound with the unintelligible instructions you will hear "I Left My Heart in San Francisco" because today is Tony Bennett day and the 50th anniversary of that song being released.

Edit update: 12 noon has come and gone, and no Tony Bennett over the emergency system. Too bad. I plan to sing it from my beck deck for all my neighbors. It's the least I can do for all of them.

Maggie Mixes

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

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

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

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

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

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

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

San Francisco's Bravest

About four years ago we had to call 911 twice in a period of two or three weeks. It was not too long after Maggie got her trach and things were terrible. I was working frantically to get Maggie to breathe and Steve just dialed three little numbers. In a matter of minutes a truckload of firemen arrived followed closely by the paramedics. Both times Maggie was taken to by ambulance and admitted to the hospital and both times she recovered. That recovery is in large part thanks to the assistance of the San Francisco Fire Department.

It is a source of some pride to me that with all the medical emergencies we have dealt with that we have only had to call for help twice. It is also a source of great relief to me that the excellent help was so readily available. Those professionals took care of Maggie and they took care of me too. (see Maggie World: Memorable Statue).   Happily we have not needed them since, but I have rested a little easier knowing they are there if we do.

The San Francisco Fire Department, probably like fire departments all over the country, seems to be made up of men and women that you want to hang out with. They are real life heroes who just go about their business and seem to have fun in the process. They wave at kids while on their way to put out fires and respond to every possible emergency in all parts of the city.  They're as cool as cool can be. Really, who doesn't love a firefighter?

A few years ago a friend was awakened by a firefighter banging on the door telling her to get out of her apartment as the building was on fire. As she stood outside on the street in the early morning hours, she asked a firefighter if he would get her pet rabbit to safety. He went right in and pulled the frightened but unharmed bunny out, cage and all.  How sweet is that. 

In another case I witnessed a traffic accident. A little girl and her mom were in a car that was hit by a red light runner. The car was messed up and could not be driven. As the paramedics tended to (the slightly) injured in the other car, a fire fighter went to the little girls wrecked car, pulled out a wrapped birthday present, put her on the fire truck and drove her to her friend's birthday party. They turned a scary situation around for her and I'm sure she was the talk of the party when she arrived in a fire truck. 

 This week another family had to call for help as their house suddenly caught fire. The family escaped as the fire truck arrived. Without hesitation the firefighters rushed in to do their job. Two of them didn't come out. For the first time since 1946, two San Francisco Firefighters were killed in a fire. The fire department and the entire city is bereft. 

My heartfelt condolences go out to the families of  Lt. Perez and Firefighter/paramedic Valerio, and to all members of the San Francisco Fire Department. We take you all for granted far too often. I thank you for all that you do every day. 

I also feel badly for the family who called for help that day. These men were doing their job protecting that family and paid the ultimate sacrifice. I cannot imagine what they must be feeling.  But I think we all know that it could have been any of us calling for help and they would have come. 

 Because that is what they do. 

Local Yokels

San Francisco draws people from all over the world.  Most people who live here came here from somewhere else.  Those transplants are always amazed when they meet a native San Franciscan.  But there are quite a few of us around.

  I am a San Francisco native. I live four miles from my parents house where I grew up.   I haven’t gone very far. It doesn’t seem strange to me because I know so many people who are also natives and still live in the area.  One benefit of staying in the same small geographic area is the ability to stay in touch with friends and acquaintances from so many different parts of your life. For some that might be a nightmare, but I love it.  San Francisco is not a very big city and those that stay tend to see each other over and over again.

My friend Lori, who grew up in Los Angeles, is always amazed at the number of people I know . It has become something of a game to see if I will run into somebody I know when we are out. I always do. I can’t help it, I know a lot of people.   

I grew up here. I am one of seven children. I have 31 cousins, 25 of whom also grew up in San Francisco.  I attended Catholic schools where many families were the same size. That is a wide net right there.  It’s not just my old friends I see, but their siblings or friends of my own siblings.   I worked downtown before I went to law school and made friends at that time. I returned from law school and joined the legal community. I have many friends from that part of my life. I married Steve and inherited all his friends from growing up and from college.  I raised my kids here, sending the boys to the same Catholic school system I attended. I met many friends this way. When Maggie was born, I met an entirely new set of people in the world of disabled children and healthcare, several of whom I count as very close friends.  We have lived in this house for 24 years and know many people in the neighborhood as well. Now friends of my sons are out in the working world and I run into them as well.  

There is some overlap in the different groups, but not too much. For the most part the groups are distinct. That is not purposeful, just the way it works out.  Admittedly, most of these folks fall into acquaintance rather than real friend category, but there is almost a guarantee I will run into someone I know.  It used to drive the boys crazy, but now it is happening to them as well.

A lot of those acquaintances really are good friends too. They have stood by and with us since Maggie was born. Some faded away because it was too much to handle, but most have been there throughout asking what they could do to help. I don’t say it often enough, but I am so very grateful to everyone in my life who is willing to provide the support we need. It keeps us going.  

Weeks go by and we don’t get to see any one. Then there are weeks like this one in which  I have spent time with friends from several of these groups.  We laughed with friends from Steve’s high school and college days, my high school, raising the boys and my days of practicing law.  Spending time with each allows me to focus on different parts of my life. I may not have wandered very far, but I certainly have a multi faceted life.

It’s good to remember that .  In the last few years my entire life has been completely focused on Maggie’s care, which it needs to be. It can be very isolating.  But I am never alone. I draw strength and love from all these amazing people in my life.  

Know when to hold 'em, know when to fold 'em

San Francisco is a very politically correct place and I was just busted by one of the PC police. This particular PC'er is a member of a PP (politically powerful) organization, the San Francisco Bicycle Coalition and felt quite comfortable putting me in my place.

Before I continue I want you to know that I too am politically correct. I'm not rude about it, but I really do try to consider everybody before I speak or act.

It is a fantastic day here. Maggie and I went out this morning but just ran boring errands. The nurse isnt' coming until 3:00PM and we decided to take a little walk with the dog to a nearby store. We weren't going to the supermarket, mind you, just a little corner store to get some cream for the coffee. It's the type of place you run into for no more than five minutes. Mostly it was an excuse to get out again on this beautiful day and stroll through the neighborhood.

We went out the garage door, put away the compost and recycle bins (ok and the garbage too, but that's not pc) started our walk. I have both a wheelchair and a dog with me - two things that are very PC here. The dog was actually leashed for once, and I was obeying all laws.

When we arrived at the store I lashed Brisco the wonder dog to one of two poles outside the store, exchanging hellos with the guys who work there. (We are regulars) As I finished  tying the dog, a young man with  a bicycle wearing a San Francisco Bicycle Coalition T-shirt,says  "Ma'am those poles are not for dogs, they are for bikes."

Fair enough. But there was another pole three feet away.Neither had a bike on it. I looked at the pole and then at him and said, "and you want to put your bike on THIS one instead of THAT one."

"Yes," he says defiantly.   A woman was sitting at the table outside the store eating a sandwich. She was staring at the guy with her mouth hanging open. .  

My first thought was to say "call a cop", but I did not. He was technically right, but really ridiculous. One of the workers was sweeping and he started to say something but I just shook my head at him. It wasn't worth it. This 25 year old guy was going to show the middle aged lady pushing the wheelchair who was boss.

He looked like an idiot.

I simply untied the leash ignoring his suggestions I use the tree to secure the dog (also un-PC). I did not respond at all, but simply untied the dog, unlocked Maggie's brakes, turned her chair around, backed it up three feet, put the brakes on and tied the dog to the OTHER bike pole. (There was another full sized bike rack at the establishment next door and that too was completely empty.)

He was smoking (very UN-PC) and put his cigarette out on the ground. (AACK!) I was soooo tempted, but said nothing. I just looked at the cigarette on the ground and glanced at him. He was as proud as a peacock. Yeah, congratulations, buddy, you should be proud of yourself.

As we walked by him silently, Maggie said on her talker, "Mom I am happy." That is apropos of nothing, but it cracked me up.

For the record, my son Eddie is a very committed bike rider and I am very very conscious of the rights and safety of bike riders. However, there is a difference between my son and the twerp I encountered today.My son's mother taught him manners. Those are always politically correct.

Living in Wonderland

The new wheelchair van needs some tweaking. I took it over to Berkeley to have a companion seat installed so that when there is a third person in the car that person can sit next to Maggie and suction her trach, as needed, which is all the time. Right now Maggie’s wheelchair rolls into the van behind the front passenger seat. There is nothing else in the middle and a bench seat in the back.
We have been wavering about whether the extra seat is a good idea or not, but the decision was made on our recent road trip to Mendocino. That trip was our first car trip over 30 minutes since Maggie got the trach placed 18 months ago and it clarified the need for the seat. Steve was driving the curvy coast roads and I would have to undo my seatbelt and turn my body around on the front seat to reach her with the suction machine. Dangerous for all concerned. Time for the companion seat. At least I can ease up on my Olympic gymnast training to help Maggie when she needs it.
The place that works on the van is in Berkeley. It is about 30 minutes from here. However, of course once I left the car there I had to get back via public transportation. That was 90 minutes. But what an adventure. The shop is in the flats of Berkeley, a completely different part of town than the University. It is rather … seedy, at least in the industrial part I was in. Last time I tried to get a cab to pick me up there and they would not come. Does that explain it? The guy was p.o’d about work I needed done, even though I had scheduled it four separate times with his office. I figured asking for a ride to the BART station was probably not a good idea, so I just started walking.
BART – or Bay Area Rapid Transit – is a wonderful transit system for me, the occasional user. (Regular riders often have different opinions.) It goes through a tube right under the San Francisco Bay and deposits you in downtown San Francisco. Of course it was about a two-mile walk through a fairly rough area of Berkeley/Oakland to get there, but I just started hoofing is. I talked to my sister on the phone while I walked and the neighborhood got a little better with each passing block. There were a lot fewer gated windows and “Dangerous Dog” signs. Train came immediately and when we arrived in SF, I came up onto Market Street to hear a woman SCREAMING at the top of her lungs in Chinese. She may have been preaching. I do not speak Chinese so I am not sure. The best part was no one was paying any attention to her.
I still had a bus ride to get to my house and I can take any one of four bus lines. The #5 was coming, which is an electric bus, so that is what I took. The bus had a slight breakdown when the overhead electric wire came off and the driver had to get out and put it back. I was thinking I would not want his job to work with the electrical connection behind a bus stopped on the upward slope of a steep hill. The Japanese woman behind me pulled out her camera and took pictures of the driver through the back window of the bus as he replaced the connection. That was a first for me, and judging from the look on the driver’s face, a first for him as well. The man next to me conversed with his wife in Portuguese and both were getting more and more agitated about missing their stop. I gave them directions, which I’m not sure they understood, and disembarked. Steve was home with a roofer who was Latino speaking perfect English with an accent.
It was an international trek, an adventure in my own backyard. You might think it was a once in a lifetime set of circumstances, but I have to go back on Thursday to get the van. And it will probably be the same thing. I hope that Portuguese couple is not still on the bus.

Shake ups

There were two big shake ups in this house over the weekend. One was geological, the other medical.

We had an earthquake Friday night. It wasn’t big – only 4.2 – and I didn’t hear of any damage or injury. It just shook the house causing that noise. If you haven’t heard the noise, it’s hard to comprehend. The entire house sort of groans. You wonder for a moment if this is the start of a disaster or just a mild disturbance in the force. This time it was the latter. It’s almost always the latter; but that moment of wonder causes every hair on your body to stand on end. Unlike hurricanes, earthquakes hit without warning. You can’t prepare, except generally; but you don’t have the dreadful hours or days of anticipation either. It hits, last a few seconds and it’s over. Those few seconds, though, make you keenly aware of everything you have to lose.

We were watching television when it hit in two quick jolts. At the first jolt Steve and I just looked at each other as if to say, did you feel what I felt? Before the second one hit a split second later we were both heading for Maggie’s room. It’s instinct. If this is the start of a larger quake we had to be ready to grab her. It was over before we made it the 20 feet to her room. Maggie grinned at our sudden arrival. She must have felt it because she was lying in her bed, but she did not seem any worse for the experience. The nurse in her room didn’t feel the quake at all because she was in motion when it hit. Crises averted. Return to the television.

It was a reminder that things can change on a dime. Or a warning that things were about to. Maggie gave us a scare yesterday too. It’s hard to describe how volatile Maggie’s health is. She can be happy and laughing one day and in the Intensive Care unit the next. I knew something was not right by about 8 in the morning. I cancelled a planned outing to the park and watched her very carefully. She was so listless that I worried about her shunt and considered a trip to the ER. But it didn’t really seem like a shunt problem and I couldn’t quite articulate what was wrong. So I waited, which is not without risk, but I have learned when that is ok. I’m glad I did. I finally figured out what was going on in the evening.

Maggie had been given a drug that is too strong for her and she was dehydrated. This happened once before several months ago. Apparently the new chart (that I created) failed to note the previous problem. I removed that drug from her cabinet a couple of months ago, but the pharmacy sent another box to complete the Rx and I did not intercept it. Once I figured out what happened we started her on pedialyte to balance out the electrolytes and this morning she is back to her feisty ways. Well, about 80% back. In fact she just threw the pillow out of her bed because I’m on the computer and not paying attention to her.

This is why parents should not be running their own nursing agency. Maggie is too fragile. She takes something like 24 drugs – though not all of them every day. Mistakes are part of the deal. Someone qualified should be overseeing Maggie’s care. The individual nurses covering the shifts do not have the overview. And though I have become quite well versed in managing her care, I am not a nurse. It took me all day to realize what was going on and I had no one to discuss it with I did not have a nurse for yesterday’s shift and Steve was gone all day so it was just me and the parade of horrible that kept replaying in my head. It’s exhausting and scary. Like an earthquake, it shakes me to my core. And then it’s over.

Specialists

Today is doctor day. Nothing's wrong, but we have to go check under the hood and kick the tires a bit. First the ped. gastroenterologist then the ped pulmonologist.This means about three hours of hurry up and wait that results in changes and tweaks to medicines and treatments. I try to schedule a couple on the same day for efficiency sake. Next month it's a couple of other specialists. But I'm lucky, we live in the shadow of a full fleged medical center. People come from all over the county to take their kids to UCSF (Univ. of Calif, San Francisco) Children's Hospital. And I can walk there in about the same time I can find a parking place. Parking is the real mystery up there. I will still drive because here is a LARGE hill between here and there and pushing a wheelchair up that hill is very difficult and more than a little dangerous. Besides, I hav to take Maggie to school afterward - assuming we get out of there before the school day ends. Off we go. We have to leave early because the wheelchair places in the parking lot go early. It's an ugly scene in the parking structure

Clement Street

Labor Day Weekend and the sun is out again in SF. Amazing and wonderful. We went for a walk to Clement Street to buy some veggies at the one of the good Chinese markets. We loaded Maggie into her chair and started the ½ mile stroll over there. Brisco the wonder dog comes along too. Maggie holds his leash, which often makes passing drivers do a double take. He is much more compliant when Maggie’s in charge. In fact, I let him pull the wheelchair for a while. He’s part Husky, so it’s in his blood. The non Husky part of him cannot pull in a straight line, though. I can let go, but have to keep my hand about two inches above the handle for a fast override to keep them from veering into the street.

Clement Street is an international little street. There are people of every nationality, and many different languages filling the air. It is a busy place and very difficult to navigate with a wheelchair and a dog. It is crowded with people coming in and out of the many shops. The occasional bus shelter takes up precious sidewalk room too and people crowd behind it in a stream of pedestrian frenzy. Some of the shops, the vegetable store in particular, attracts customers with bins stored outside on the sidewalk, making the sidewalk narrower still for the crowds of people walking by.

There is zero room for Maggie’s wheelchair inside the store. This is not a complaint a la ADA. It’s a reality. There’s barely enough room for customers on two legs in there. Maggie, Brisco and I wait outside, and take up our own sidewalk space. If people are annoyed they don’t show it. They are too busy staring at Maggie in her wheelchair holding the dog straining to find Steve in the store, lest he fail to return.

I watch two women meticulously examining every string bean to determine which ones they will purchase. I don’t have the luxury of examining each bean and quickly throw a large handful in a bag and shout to Steve in the back of the store that he needs to add these to the basket. This brings additional stares. Mothers walk by and eye us out of the corner of their eyes; the child behind her tries to do the same thing, but he hasn’t mastered his mother’s sideways stare and just gapes open mouthed. My friendly “hellos” make then him away in embarrassment. I just laugh. I know the best is yet to come. And it does.

Maggie needs her trach suctioned. She can’t go very long without being suctioned. We always have the suction machine with us. It hangs off the back of her wheelchair when we’re out, or is next to her on the floor or in bed when we’re home. I press the button and the machine starts its annoying hum. (Think dentist chair.) Everyone just stopped. The buzz of the street was replaced by the buzz of the machine. And I had to do it about four times while we were standing there, partially blocking the busy sidewalk. The only ones unfazed were Steve, Maggie, Brisco and me. I’m not sure why this freaks people out so much. But it always does. After a while they settle down and realize it’s just the way it is, but we weren’t there long enough for that today.

Vegetables in hand, we start the walk home. The stares continue. I am used to the stares. Sometimes they really piss me off and sometimes they amuse me, but generally they don’t phase me at all. I always notice, but generally I just don’t care. Today for some reason it was amusing.

We need to take better advantage of these situations. If nothing else, we should lunge for the freshest veggies while people are reacting.