Digging out

Maggie checking out her new driver

Maggie and I are both adjusting nicely to her being back in school.

She is seeing her friends, meeting her new bus driver, getting to know her new teacher and a new aide in the classroom and learning lots of things. In fact, she informed me last night that the Quail is the State Bird of California, a fact of which I was previously unaware.

I am getting back in to the schedule that I seem to need to function. It took me a lot of years to admit that because I like to think of myself as someone who goes with the flow;  but the truth is I like a schedule, especially when it comes to Maggie. It makes everything else easier. I spent the past few days digging out from underneath the piles of paper and work that has accumulated during the past few weeks when I didn't have any time to get things done. Bills have been paid, the dog has been to the vet, the men came to change the windows etc etc.  I did get all the legal work I have to do into one organized pile, but I left Maggie within reach and she decided they would be better on the floor. And she thought that was hilarious! She is very helpful.

This afternoon after Maggie arrived home, I helped the nurse get her situated and we did the procedures together. At the same time I was trying to locate the property tax bill and finish my malpractice insurance renewal. Done and almost done. I had to stop because I had to get to the bank before it closed. Perhaps order will be restored next week.

I ran out of the house on my thrice weekly run around the neighborhood, the bank, the cleaners, the pharmacy, the supermarket etc etc. The stuff has been sitting at the cleaners for weeks.  As I was leaving the house, the nurse handed me an empty bottle of one of Maggie's prescription meds.

I brought it with me because the pharmacy was one of my stops. Most of Maggie's meds are automatically renewed and with luck, the refill would be waiting for me when I got there. As I waited for the man in front of me to finish at the window, the clerk noticed me with the empty bottle and laughed. She said I hope you got a cart.I didn't really get the joke until it was my turn. Oh yes, that med was ready and so were several others. I definitely needed the cart.

We are stocked up now, but there will be more. There is always more. 

 I will be digging out for a while yet. In fact I can only hope it will be done before Christmas vacation 

Chivalry is not dead, it's limping along nicely.

The healing process continues for my broken foot. It's been four weeks today and there is real progress. In fact, I just graduated from the ginormous boot to this very ugly sandal/shoe.

It was really time too. The boot was squeaking and making scraping velcro noise with every step. In fact we arrived at a wedding the other day just as the bride was about to walk down the aisle. We waited for her to enter and then slipped in the side door. Unfortunately she arrived at the altar and the music stopped and, in the sudden quiet, the church echoed with the squeaks and scrapes of my boot as we made our way to our seats. I felt like doing the homecoming queen wave and saying, "Yes we're here and sorry we're late."

Though it lacks in aesthetic value, this shoe is a whole lot easier to deal with than the boot. It's not nearly as tiring for one thing. I can move about much easier. The foot is still a bit tender and I have to get off of it, but things are definitely easier.

This morning I was taking the streetcar to the hospital. I saw it coming when I was still a half a block from the stop. I tried to run, but that just wasn't happening. I'm certain I looked ridiculous, but I was bound and determined to make that streetcar. I did, but had a more pronounced limp when I got there.

The streetcar was crowded, not packed but standing room only. To my delight and surprise a man in about his 30's stood up to offer me his seat. I politely waved him off because I wasn't going very far. Still it impressed me. I took up a position by the door and pulled my book out of my bag. I saw a younger man looking at me and to be honest, I made sure my purse was closed. Nice of me, no? I felt especially guilty when he too stood up and offered me his seat. I thanked him but said I was just going a few blocks.

To those who scoff at chivalry as anti feminist I say simply pshaw. It was a very kind offer from not one, but two different gentlemen, one of whom I had pegged as a thief. They had more class than I did. They saw a person who they thought needed assistance and they offered it.

I figured I must really look like I need help today and imagined what they saw if they were looking out the window as I hobbled to the train. That make me smile to myself.

Then it hit me: Maybe it wasn't my foot at all.

Maybe it was my AGE.

I stopped smiling.

Ahhhh, Monday

No one ever says "Yay! It's Monday. 

Except perhaps for mothers sending their children back to school after a wild weekend.

I do look forward to Monday morning because when Maggie gets on that bus I can restore some order to my day. When she is home, whether the nurse is here or not, I am constantly on call and have one ear perked for the way she coughs, etc in case something is amiss. I honestly look forward to the mental and physical break. 

Of course I didn't get it today because Maggie is sick. She has a fever, which would ordinarily freak me out a little bit, but not this time. Tim had a fever and slept all weekend and Steve doesn't feel well either, so Maggie is just catching the virus that is making the loop around this house. So far, the only one untouched by fever is me, but I stayed in all day yesterday with a stomach issue. Don't know if that was my version of the same thing or not. Hope so, because I already feel better. 


The weekend would have been terrible if not for the kindness and generosity of Maggie's bus driver. Maggie arrived a bit late on Friday  like 3:50 instead of 3:30. She was tired but happy. I waited for her to get home to run some errands and because of the delay I left as soon as the nurse took her upstairs. I returned home right around 5:00. When I came in the nurse asked me where Maggie's tray was. I hadn't even noticed that she didn't have it when she got off the bus. The tray is essential because she cannot "talk" without it. The switches for her talker are on the tray. Now it's 5PM on Friday and we don't have a tray. The weekend was looking mighty bleak. 

I frantically called the bus company but they said they didn't have it. I texted the nurse who apologetically told me she slipped it right behind the bus drivers seat. I called again and told the bus company that and said tell me where to go to get it. I will drive to wherever he is to get it. The bus yard is across town, but I didn't care. We HAVE to have that tray. Just tell me where to meet him and I will go.  She called back a few minutes later and said, "Carlos said it's on the bus and he is bringing it to your house, he just left the yard." 

I was floored. He did NOT have to do that but at the end of his work week he drove that bus all the way across town to deliver that tray to Maggie. That was probably an extra 45 minutes at the end of a Friday afternoon. Talk about going above and beyond! I was quite impressed and let him know that. Carlos just shrugged it off because he is such a nice guy. 

It was a great start to a weekend. Now if we could just get this week going.

Sing it with me!

It's the MOST wonderful time of the year!!

School begins today in San Francisco, California.

Rejoice and be glad!

One student in this house is very excited.  She is ready to be a senior in high school. She is excited that she will have another girl in her class this year. (Maggie has been the lone girl for two years.) She is ready to be out of this house and busy all day long. Maggie has been making sentences about it all weekend. All day yesterday I heard,

"Mom, I am excited to go to school tomorrow on Monday, Mom."

"Yes, dear, so am I. This is what you call a win win situation."

Here's the Happiest student in the world ready to begin Senior year. I hope she doesn't torment the freshman.

And for nostalgia, here's the Staples commercial that I miss so very much this time of year.

Get off the computer, Mom.

I may have just set the record for how many tasks one can do at a time.

This morning I got up very early and decided to go online. I know better than  to sit at the computer for even one second before I have Maggie all ready to go. It's so easy to flit away a few minutes and then a few more. That wasn't going to happen to me today, though. I had plenty of time. I got up and filled the oxygen tank and I programmed Maggie's dynavox while the computer was starting. Very organized and efficient.

That gave me a false sense of time security.

Suddenly I had about two minutes before the bus and 10 minutes of things to do. I quickly fed Maggie, put her jacket halfway on, put the tray outside and told the school nurse, who was already outside, that I was coming as fast as I could, put Maggie in the chair with just the leg straps and headed out the back door to the elevator.

I had the hairbrush and her trach scarf in my hand and the IPOD shuffle in my mouth. My plan was to brush her hair and tie the scarf during the 90 second ride downstairs. Of course I would have to do both with one hand because the elevator requires one to hold the button in place to keep it moving. No problem, I've done that before.

Just as we started down, Maggie did one of those coughs really needed to be suctioned. The Ipod, hairbrush and scarf moved to the same hand I was using for the elevator button and  I reached for the suction. Good thing I moved the IPOD, because I needed my mouth again. The tip of the suction was inside a glove for cleanliness, but it was stuck on the glove material. I pulled the glove off with my teeth. Not so sure about the cleanliness now, but I only bit the outside of the glove and managed to suction her while we were descending. I also managed to get her hair brushed before we arrived at the ground floor. .

The dog was barking furiously, which means the bus is outside. I opened the garage door, quickly tied her scarf and put the IPOD with the player. Nurse Janice, who had already retrieved the tray from the front porch, put Maggie's other arm in the jacket and together we did the chest and waist straps. The bus driver just grinned at the flurry of activity kindly dismissing my apologies.

As he loaded Maggie onto the bus, the driver said, "Now you have plenty of time." I just looked at him and said, "Now I don't need it. My work is done."

Hurry up and wait

Getting Maggie out the door for the bus for summer school is proving to be a challenge. The morning routine has always been ridiculous but now it's besting me. The bus is scheduled to come at 7:32 but every morning when I get downstairs, he is already waiting. It's uncanny. Every bus in Maggie's 15 year scholastic career has arrived on time or late. Maggie is the last one picked up but still the bus is early. It's like Magic.

I am consistent about getting everything ready the night before. I program the talker, program the coffee pot and charge everything that needs charging. Some things have to wait for the morning. I cannot fill the oxygen tank the night before or it will be empty again in the morning. The last thing I do in the morning is feed Maggie so she can head off to school with a full stomach and be on schedule for the rest of her feedings at school.

This morning I was bound and determined to be ready. I plopped Maggie in her chair, filled the oxygen, unplugged the fully charged and already programmed dynavox and the suction machine and packed them onto the back of the chair. I brushed Maggie's hair and put on a scarf. I put the tray on the front porch for easy retrieval from the front and headed down the elevator. I put Maggie's music and a bottle of water and added the diapers and case of food she needed  The clock said 7:15. I still had to feed her, but I could do that downstairs.

Feeling quite smug that on Day 7 I finally beat the bus I opened the garage door and the bus pulled up that instant. Arrrgh. I still needed to feed her. The school nurse was there and said don't worry about it, he's early. Still. it's a thing with me. I don't like to keep folks waiting. Janice told me that she would feed Maggie when they arrived at school  I learned that because they arrive so early arriving, the driver cannot unload the kids. There are no teachers or anyone else there to meet them.

WHAT?!?!?! I'm busting my butt to get downstairs so that Maggie can sit on the bus for 10 or 15 minutes when she arrives too early at school??!!??

Tomorrow I will be downstairs ready to go at 7:32 and not a moment earlier.

Aftermath

I learned more about Maggie's wheelchair falling over when she came home from school. Apparently it wasn't such a slow fall*, but a crash and she landed a little to her side. The driver stopped the bus on the hill in the middle of traffic to fix things. Her nurse said Maggie was shaking with fear, but physically unhurt.

I called the classroom to check on her before I went to the dentist because I knew I would be out of touch for a while. The teacher said she was working and happy so I didn't worry. I knew, though that there would be more when she came home. And there was.

Her physical therapist comes on Tuesdays to work with Maggie in the walker. This is very difficult for Maggie. She is never upright and it's a bit scary.  I'm sure you can figure out what happened. As soon as we put her in the walker she started to melt down. This has happened before, but this time it was different. Maggie was inconsolable. We immediately took her out and put her in the chair, but she could not stop crying. After a few minutes I took her out of the chair and sat with her on the couch while she just cried out all her fear.

It would have broken your heart. She was so sad and so frightened and all the hugs and kisses and reassurance could not make it go away. It was the exact same reaction she had when her wheelchair fell over in middle school. She waited until she got home to mom and then completely fell apart. She finally recovered after about 45 minutes of solid crying. By then she was exhausted. So was I.

When her bus arrived this morning her regular driver was back (that was a sub yesterday.) He knew what happened and took no offense when I said, Please use the tie downs.

They got to school without incident.

--------------
*no one told me it went over slowly, I think I just saw it that way in my mind and wanted to believe it.

Great start to a Tuesday

Maggie is out the door and onto the bus and I come back inside to begin my routine of ignoring everything I need to do so I can read the paper, check facebook, etc.

About 10 minutes after they leave I get  phone call from the nurse. Maggie's wheelchair tipped over backwards on the bus as it was chugging up Fulton Street.  Maggie stayed in the chair as it went over. She has seven buckles keeping her in that chair and all were secure. Seems the substitute driver didn't completely secure the tie downs.

Maggie is fine and safe, though a bit frightened.

 I, however, have an incredible stomach ache.

Morning was Broken

The title is a take off of an old Cat Stevens song, Morning Has Broken.  It was a lovely song about a lovely morning in Spring and recognizing the beauty of all of it. Well, it ain't Spring and everything I recognized today warranted a different kind of song. It was a comedy of errors this morning.

Maggie was really frantic about something and I don't know what. She was freaking out in her bed, but nothing seemed to hurt or anything. I proceeded to program her dynavox for the day and fill the oxygen tank while trying to calm her down. Nothing was helping.

She still needed to be fed but she was so upset, there was no way the food would go in. I just kept getting her ready. She ripped her diaper but there was no time to change it, so I just taped it back together. I tried to put her in her chair for but she was arching and really upset. Occasionally I called for Steve to help me. He couldn't hear me and I would just keep trying. Finally after about 10 minutes of wrestling with her I thought I was going to drop her and I REALLY YELLED and he came running. I have never had to call for help to get her in her chair before. It is disconcerting.

Time was passing and I needed to get her downstairs. I decided to feed her downstairs while we waited for the bus, but I glanced at the clock and wondered if we would have time. Just then the doorbell rang and there was Nurse Janice coming up to tell us the bus was already here. Of COURSE they were here already.

Maggie was now safely in her chair and no longer crying, but she looked completely worn out and mad. (This picture is actually from the other day, there was no time for pics today, but you never get to see her mad face.) We got into the elevator for our  S L O W ride down and I realized I hadn't combed her hair or put a scarf over her trach. And she still hadn't eaten. She was only half ready.

It is really foggy and drippy today.When we arrived in the backyard, the door to the basement was swollen shut from all the dampness and we were locked in the yard for a moment. Steve had opened the garage door and Janice could see us trying to get in the back door. She was pushing from her end and it was not moving. I told her to yell for Steve. He came down to the basement and just then I got it opened.

I handed Maggie over to Janice and grabbed a couple of scarves off the top of the dryer. I told Janice what happened and that Maggie did not get her feeding. All the while Ms. Maggie scowled at us. Janice just said "Oh my." in her very sweet way. The bus driver was great, he graciously said he was early, which he might have been, but I think he saw my face and figured I had enough for one morning.

Not sure what all that was about and I half expect a call from school today.

The bus pulled away and I had to leave immediately for my physical therapy appointment.  The therapist asked how I was doing and I told her that my bad shoulder was really getting better, but for some reason it really hurt after this morning.

I cannot imaging what's causing that.

Is this my stop?

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

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

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

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

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

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

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

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

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

Road Warrior

I received this email from Heather, who was Maggie's school nurse for a while. She loved my story from yesterday about Maggie telling me "this is bunk."   2009 was Heather's last summer working in the schools and Maggie was her patient. She is now a nurse practitioner. 

Two things for context:, 1. the school nurse rides on the bus with Maggie because she needs constant suctioning and there are some good hills on the ride and  2) Maggie says yes by bringing her hand up to her mouth. 


 I smiled so big after reading your blog. Did I tell you the story of one of our entertaining drives to school in the summer of 09? So Maggie and I had just left your house in the school bus. We were at the light getting ready to turn up the hill on Stanyan when Maggie started to cough. I flipped around, looked at her, and realized in was suction time. Well....just as I stood up, the bus driver hit the accelerator. I started to stumble, which Maggie thought was the funniest thing ever (it kinda was actually). I walked over and said, "Ay Ay Ay, that was a close one" as she kept laughing. I suctioned her and went back to my seat. As soon as I sat down she started hacking again. This time, I got up and as I was walking to the back of the bus, the bus driver hit the breaks. I stumbled again. She was hysterical. I started to laugh and said, "Maggie, are you just pretending to cough so that I get up and stumble all the way to the back of the bus?" Her answer...an emphatic (at least it seemed to be by the swipe of her hand), "YES!" Cracks me up to this day. What a great summer!
Maggie has always had excellent people working with her. It's good to be reminded of that. This is a very typical Maggie story because that girl loves to laugh. She's choking and laughing. Of course, who doesn't?.

I'll take the blahs, thank you.

This getting up and ready in the middle of the night is for the birds. (Owls, I guess). It is so dark in the morning that I feel out of sync all day.

Once I get Maggie all prepped and ready to go in the morning, we roll the chair out onto the deck and get in the elevator in the dark of night. I have to grope for the light in the basement to find my way to the front of the house and it is still dark when we're outside waiting for the bus. It gets light pretty quickly once we're out there. The whole process will definitely be easier after the time changes. (Of course then I'll be complaining that it's dark too early in the evening.)

The dark mornings make it hard for me to start my day and the mid afternoon blahs are quite present. Yesterday was no exception. The afternoon nurse arrived just ahead of the scheduled time for the bus. I was working and trying to stay awake. That's when the phone rang. I saw it was the school nurse and thought, oh, the bus is going to be late, maybe I can sneak in a 15 minute nap. I was half right. The bus was going to be late, all right, but I was snapped out of the blahs by the rest of her news. The bus was in an accident.

WHAT!?!?! She assured me that everyone was fine and that the accident was minor. They were only a block away from the school. The bus was stopped at a light and was rear ended by the vehicle behind them. There was a very loud crash that scared all the kids (and the adults) on board, but there was no damage to the bus and no injuries. The car behind them didn't fare as well there was front end damage to his car.

Suddenly I went from "I need a cup of coffee to stay awake" to "I need a cup of tea to calm down." My initial plan was to head down there and get Maggie home as quickly as possible. But there are protocols and procedures to follow. They wouldn't let anyone off the bus until the supervisor arrived and the reports were done.  I understand that completely, but it was difficult to just sit here and wait. I didn't think I could add anything positive to the scene and would only complicate things by bringing my van to the congested area. So I waited. Maggie arrived 45 minutes later not any worse for the wear.

I asked her about it and she gave me a sad face, so it clearly scared her, but she's fine. It scared me too. I know how precarious Maggie's well being is, but I feel like she should be immune from the regular dangers and perils of life.

If you are suffering from the mid afternoon blahs, enjoy them. They definitely beat the alternative.

Hot-tober

It is hot here. I believe the temperature hit 90 in San Francisco yesterday and it will be about 85 today. Whew! As you might imagine, Maggie and the high temperatures are not compatible. She wilts like a flower and we need to keep the fluids moving for her. She was tired before the day started and the heat really did not help.

Maggie may have had too much weekend. The weather was nice over the weekend. Not hot by normal standards, but a little warm for Maggie. We went to the Columbus Day Parade in North Beach parade on Sunday and  Maggie posed with some of the Knights of Columbus in full regalia.

We also stopped in at the Bazaar at Sts. Peter and Paul. Maggie posed We had to visit the miniature golf course that Steve and Rob made when the boys were in school there 7 or 8 years ago.We were delighted to see that there was a sign calling it the McDonald/Pinotti golf course.  It is a classic, all the "holes" are San Francisco landmarks. You can see the Golden Gate Bridge, Coit Tower and a Cable Car in this picture if you look closely. It remains a huge hit with the little kids.

I tried to keep Maggie in the shade while we were there, but the bazaar is in the open school yeard and there is not shade to be found. We didn't stay too long down there because Maggie just doesn't have the stamina and the excitement of the bazaar, and the parade and all the people along with the warm weather is just too much.. Besides, we had guests and were planning a big dinner. She and I came home after about 90 minutes and busied ourselves here.

Monday was a holiday from school and Maggie slept for four hours in the afternoon, which is very unusual for her, but given all the excitement of the weekend, not terribly surprising. Of course all that sleep during the day meant very little at night. She awoke at 2:30AM for the day. Great. With the lack of sleep and the heat she spent most of yesterday in a haze. She took a shorter nap yesterday and slept well last night, so hopefully we are back on track.  

This morning Maggie was in a good mood waiting for the bus with me and Etoy, her night nurse. This picture is from a couple of weeks ago, but here we are waiting for the bus on another beautiful October morning. It's funny, in the past few weeks it is a LOT darker in the morning. It may be 90 degrees, but it's mid October.

Stay cool out there!

The Gift of Time

We are readjusting to the school schedule. That means we are back to the morning rush of getting Miss Maggie ready and out the door in time for the bus at 7:15. That is no small feat. By the time the bus pulls away, I am ready for a few minutes of down time. It is this time that I tend to read the paper (yes we still get the paper) check facebook, write, read blogs etc.

It is important to be aware of the time slipping by, however, because there is a lot to be done before that afternoon bus arrives with Maggie. There is a nurse here in the afternoon to tend to Maggie, but I have to be around to help. I can run out for a few minutes here or there, but I am on a very short leash once Maggie is home.  If I was an intelligent being, I would hit the ground running in the morning and play on the computer after 3PM, but I guess that involves too much of a change in my schedule.   

I do have actual work to do for the clients I handle. There is also the ridiculous amount of paperwork and “busywork” involved in managing Maggie’s supplies, services, nursing, life etc. Every week there is some appointment or other for Maggie, which all requires choreography as well as execution.  On top of that are the obligations that everyone has shopping, laundry, walking dog etc.  Tasks that can be done with frequent interruption I save for the afternoon.  Things that need my full attention have to happen while Maggie is gone.

Yesterday I finished something I was working on at 2:00PM. Maggie’s nurse arrives at 2:30 and her bus comes at 3:00. I needed to help my mom with something but I did not have time to get over then and back before Maggie arrived. I called and told her I would be there at 4:00PM after Maggie was settled in and the first set of procedures was done. I still had to do the shopping too. We had a friend coming for dinner so I needed to get to the store.  I knew I could do that in an hour.  I went to Safeway which is just a few blocks away. I was coming home  when I  saw a school bus. I looked at the clock  which read 2:42 and thought, that can’t be Maggie, it’s 15 minutes early. As we passed each other I tried to catch a glimpse to see if it was Maggie’s driver. I couldn’t see him but was sure it wasn’t. As I turned the corner onto my street I see Janice, the school nurse pulling out. That means Maggie was home AAACK!  She was early.  That really did not compute.

Janice stopped to give me a report on Maggie’s day. She had already spoken to Fely, the home nurse, but Maggie has been less than perky this week, so she wanted to talk to me too. She told me Fely asked “where’s mom.”  It was unthinkable that I wouldn’t be there to meet the bus. I’ve never done it without telling someone ahead of time. I lugged the groceries in and greeted the Queen and her attendant. We set about getting the procedures done. 

As I was getting ready to go to my moms, Steve called. I told him I had to dash and he said those words every busy person wants to hear. “I’m about six blocks from your mom’s house, why don’t I go fix it?” That was the gift of time. I had an hour to myself. The shopping was done. Dinner was easy and didn’t need to be started yet. I had an hour to waste if I wanted to.

I plopped in a chair and watched “Make over my Man” day on Oprah. It was decadent. And I got a few good ideas for Steve and the boys. 

Is This the Party to Whom I am Speaking?

The headline in the San Francisco Chronicle  today said “Summer is here, don’t blink. ” Very accurate reporting.  Summer arrived in San Francisco yesterday and it is supposed to last until tomorrow.  It is wonderful to see some blue sky and wear shorts, even if only for a couple of days! The world doesn’t need to see me in shorts any longer than that anyway.

I sported my shorts on an errand to the Hall of Justice yesterday. Tim was having trouble getting his traffic  school certificate accepted electronically, because, it turns out, we forgot to pay the fee that goes with it.  Mom to the rescue. Since I was going anyway, and he was nice enough to give me a ride down there, Steve asked me to get a court date for his recent ticket. (Scofflaws! All of them!)

I  told the guy at the window that I had two separate things to deal with, one for my son and one for my husband. He gave me a quizzical look. I told him they should all try to drive like me, but he didn’t seem interested. As he looked over Steve’s ticket he said, “You can’t do this for your husband. He has to come in himself or have a lawyer represent him.”  “Well,” I responded “I AM a lawyer”. He looked at my something less than professional garb and asked to see my bar card. I gave him a business card, but he didn’t look convinced. I gave him my bar number and I’m not sure if he looked me up or what, but then I was good to go.

Everything fixed, I left the Hall of Justice to find a bus home. I walked about 5 (long) blocks up 6^th Street toward Market St. Anyone familiar with San Francisco knows this is a less than desirable place for a stroll. It is (what was once known as) skid row. I just kept moving and realized when I got to Market St. I had to go further to catch one of the many busses that come into my neighborhood. Now I was well into the Tenderloin. 

If the  6^th street corridor is skid row, the Tenderloin is skid central.

I felt very conspicuous in my shorts and polka dot bag. I didn’t look like a lawyer in the Hall of Justice and I didn’t look like a bum on the corner of Junes and Turk Sts.  I just didn’t fit in anywhere.! I waited for the bus as a clearly mentally ill/drugged out woman SCREAMED at her companion.  It was lovely.

Once on the bus everything was calmer. The crazy lady decided not to board with her friend, which was fine with me. My phone rang . It was Janice, Maggie’s school nurse. She had already called once. Maggie is a bit “off” for lack of a better word. She’s not sick, but something may be brewing. When she called the second time, I became a bit concerned. However, it turned out Maggie just wanted to talk to me.

When Maggie “talks” to me on the phone, she just wants to hear my voice. She generally doesn’t use her talker in return, she just listens and responds using her  signs for “yes” and “no” as though I can see her.  I speak to her in the normal cadence of a conversation, saying something and then waiting for a response. Of course, I hear only silence, but she needs time to process whatever I say. We just “spoke” for a few minutes and then I said put Janice back on the phone.  Much to my surprise, she did. When Janice said hello, I said excitedly , “did she let you know to take the phone?” Janice said, “no, I could hear you. “  I laughed.

Of course there is zero privacy on a public bus and the man next to me was clearly curious about my phone call. I thought to myself, Boy, if he only knew there was no one responding to me, he would have thought I was the crazy woman.

Oh wait….

Gotta Fly!

While Maggie is at school, I have time to myself. This is the only time I can really get things done. Lately, for some reason, I seem to spend the morning working around the house g and then spend the last hour or so of my freedom RUSHING to get other things done before Maggie’s bus arrives at 1:30 PM. It really is astounding how much you can accomplish in an hour when you have to. It would be far more relaxing to do things the other way around, but it has become something of a game with me.


This morning I actually got a fair amount of work done. I just resolved a matter for a client and all the final paperwork had to be copied and delivered. In addition, Maggie’s recently repaired dynavox was not actually repaired and that had to be prepared for shipping back for another round. I sent faxes and prepared packages and by the time I came up for air it was after noon. From 12:15PM to 1:20 PM I was able to get to the UPS store to ship the dynavox, go to the post office to priority mail some documents and hit the bank. Unbelievably, there was no line in any of the three places and I had time to spare. A quick trip to Safeway and I was home with five minutes to spare. May be a new record.

Maggie has a nurse with her in the afternoon, but the nurse cannot do things alone and I need to be here to help her with procedures. I could let her meet the bus alone and I have done so when necessary, but I like to be here for Maggie when she gets home. Besides, once the 3PM procedures are done today,I am out of here. I am leaving at 4PM and Maggie and the nurse are on their own until Steve arrives at 6. I am going out on the town.

I am going to see Peter Pan, which is playing in a giant tent on the Embarcadero. From what I hear, it’s a spectacular show with the actors flying above the audience. (Check it out here http://peterpantheshow.com/ ) Our friends Malcolm and Lindsay have ONE extra ticket. Malcolm,, who works with Steve, went into Steve’s office and said, “you have to watch Maggie next Thursday night because we are taking Sally to Peter Pan.” Steve happily agreed and he will play backup caregiver so I can go out. He will be on his own when the nurse leaves at nine, but he can handle it.

Right now its 1:45. I still have to do a bit more legal work, shower, dress, help Maggie, walk the dog, and do a ton of other things. I’m starting on those things now. I don’t want to play the last minute game tonight. I want to be in that seat when the show starts. I am hoping to be able to learn how to fly. It will save me so much time!

Extreme Bus Rides

To protect Maggie in her wheelchair there are two belts that come up between her legs fasten on each side to keep her hips in place, and a chest harness with four buckles. Once those are secure, there is a lap belt fastens across her like a regular seat belt. Once Maggie is loaded onto the bus, the chair is strapped down to the floor of the bus and a strap is fastened around her and buckled about mid way down the wheel of her chair.


Maggie can easily remove the bottom buckles of the chest harness and the lap belt. She cannot reach the back buckles on the harness, but she is able to lift it off over her head, and does so frequently. One of the adults in her life re buckles those things about 40 times a day. She is able to but does not mess with the hip straps. I think she knows those are really holding her in place and self-preservation kicks in.

Perhaps we have been watching too much Shaun White or other daring athletes in the Olympics. Maggie is exhibiting some daredevil tactics of her own. She is extending her mastery over seatbelts to the school bus.

The driver is not amused.

She cannot reach the bus straps on the bottom of the chair, but Maggie has recently mastered the art of getting the other bus strap undone. The school nurse says that Maggie sits quietly with her hand at her side. Eventually they hear a “click”, the strap is off, and Maggie is beaming. The driver has to stop to get it back on.

Today they tried loading her on the other side of the bus because it is doubtful she could coordinate that with her right hand. Maggie is not only left handed, but, because of the nature of her cerebral palsy, the entire left side of her body is stronger than the right.

Moving her will fix it for a while, but my girlie is very persistent. And she loves to live on the edge. I guess it should not surprise me. Her brothers are involved in dangerous sports, downhill biking and rugby, respectively, and this is Maggie’s version of that.

Dude.

You are not going out like that, young lady

Brrr. It is a cold one here today. I know 38 is not cold for most of you, but for San Francisco that is cold. We just are not set up for it here. For example, the elevator we have for Maggie is outside open to the elements. We would not do that if we lived in an unfriendly climate. This morning I had to skate across the ice on the deck in order to get to the elevator. I wondered how the motor would work in the cold, but that was no problem.

The cold weather also presents some challenges for Maggie’s attire. Maggie is a snappy dresser but keeping her warm is not easy. Because of the trach, she cannot wear a turtleneck, or cover her neck in anyway, but we still need to keep her warm. She does have a cotton scarf (kerchief type) over the trach but it doesn’t really work for warmth. The only thing to do is dress her in layers. Her neck is cold, but she is not outside long.

Recently she received a jacket from her cousin Nina. It has a nice furry hood. That helps but even hoods are short lived. As soon as Maggie turns her head, she is staring at the lining of the jacket. The hood generally does not turn with her because it is held in place by the straps of the chair and the design of the headrest. Hats end up on the ground because Maggie loves to throw them. Gloves? Forget about that. With her cerebral palsy, it is difficult to get them on her fingers because she cannot move her body the way we can. Besides, her CP is just one part of the equation. She finds it hilarious to sit patiently while I work and work to get gloves or mittens on her and then immediately yank them off and throw them.

This morning I came downstairs and the night nurse had her all ready to go. She was in the jacket, all zipped up, and the nurse told me she put two shirts on Maggie. Ok, that is as good a job as we can do for her. I focused solely on warmth of her head and never considered anything else.

I took her down to the bus and the nurse went home. As I tied the scarf around her neck, I unzipped her jacket a bit. Yikes! She did have two shirts on as the nurse said. However, they were two shirts that should not have even been in the drawer at the same time, let alone on Maggie’s body at the same time. The black and gray sophisticated striped sweater/shirt combo was underneath a blue and turquoise summery shirt. She looked ridiculous. There was no time to change because the bus was coming.

The school nurse was there and I said, "I want you to know I did not dress her and please just take off the blue shirt when you get to school." However, there was more. As Maggie rode the lift up to the bus, I noticed her pants were light black cotton pants that hit her about mid-calf. Her bare legs had a nice blue tinge. I looked at the school nurse again and said. "I REALLY did not dress her this morning."

Poor Maggie is off to her inner city high school with freezing cold legs and clashing shirts. The night nurse is of a different culture and perhaps in that culture, this outfit is ok, but not in mine. I felt like a bad mother.

I can fix this. Tonight I think I will lay out the clothes I want Maggie to wear in the morning and I will get up a bit earlier in the morning to do inspection. Of course Maggie will probably start a new trend and I will embarrass her by putting her in matching clothes that actually keep her warm.

Curl Girl

I live on the West side of San Francisco. The Pacific Ocean is about 3 miles straight down the street. In many coast cities or communities, living near the water is fancy schmancy. Not in SF. This part of town is foggy and cold a lot of the time. The water is freezing and very few people swim in the Ocean. There are hearty souls that swim in the SF Bay every day, and my dad was their king. The bay has tough tides but doesn't have the crazy undertow and the crashing surf that the ocean has. Ocean Beach (clever name, I know) is generally empty save for a few dogwalkers and other scattered individuals.

But there are surfers. These folk have their wetsuits to protect them (somewhat) from the cold and their bravado to protect them from the rocks, undertow and occasional great white shark. (Ok, hardly ever with the sharks.)

Maggie has become something of a connoisseur of the waves and the surfing conditions. The bus picks Maggie up about 8:20 or so and then heads west to get another student. The driver then takes the Great Highway, which runs right along the coast, to get to the school. He listens to KPIG on the radio which has a feature "Girl in the Curl" to give the surf report. The bus driver has the kids confirm whether or not her report of the conditions is correct.

I didn't know any of this until the other day when the bus was a little late. the driver was still loading Maggie when the kids started yelling It's the Girl in the Curl! Maggie started twisting her neck to see the kids in the bus and was laughing her head off.

It's good to know she's getting an education ON THE WAY to school. That's a bonus.

Tomorrow is Valentine's Day, of course. But that's Saturday, so all the Valentine stuff had to go to school today. Maggie was dressed for the part and had her valentines all ready for all her pals and teachers. She was excited and Happy.

If the waves are good, this will be a perfect day! Gnarly dude!

Maggie says Happy Valentine's Day to everyone!!

Loading Zone

A little snafu getting on the bus today. I’m not sure what happened, but just as the lift started ascending Maggie’s face changed. The nurse and I both saw it. The driver stopped the lift so we could figure out what was wrong. Maggie’s foot was caught under a portion of her chair and her leg was twisted. I straightened it out and she was clearly in pain. She started crying big crocodile tears.

The nurse commented that she had ever seen Maggie cry. It is pretty rare. She is one tough chick. SO for something to bring her to tears, it had to be pretty painful. The driver was concerned that he had done something (he did NOT – it was a position she got herself into while her mother wasn’t paying attention). I think her hip was affected by the position of her leg and when I straightened it out it really hurt.

We made sure she was ok and they resumed loading her onto the bus. The other two boys on the bus were very concerned about Maggie because she was crying and not responding to their questions. She ALWAYS answers yes and no using her own signs. I could hear them firing questions at her and climbed onto the bus to make sure she should go to school. Just as I did, one of the boys said, “Maggie getting on the bus is a lot of DANGER!” This is something the bus driver yells out every morning as the lift is coming down just to entertain Maggie. (and it always does!) This has been going on every school day for months. (see Maggie World: Danger Will Robinson!)

Maggie started laughing through her tears and off they went.

This picture is not from today, but this is Dave, the driver, telling her how "dangerous" the lift can be. Maggie lives for that every morning. It is fitting that one of the kids knew to use that to make her laugh.

All's quiet on the western front.