Fin d'ete

Summer is drawing to a close. We have been trying to pack a lot of fun in to the last week or so to finish summer off with a bang.

Maggie and I are headed to the museum this morning to meet our friends Lori and Lily. We will have a quick look at the Man Ray Lee Miller exhibit. A little dose of surrealism is perfect for our particular foursome. We are two moms, two teenage girls, two wheelchairs.

Lori and I had the best of intentions as the dreaded summer vacation started. We were going to get together with our girls and see the town. Maggie and I have been over there to visit and we did grab a quick lunch at City Hall one day but this is our first actual outing together. Everyone is so busy or has various windows of available time that do not coincide. We are all girls on the go and getting together has not been easy.*

The DeYoung Museum is a regular stop for us. We live just a few blocks away and are in and out of there all the time. Last Saturday we went with my old friend Clare and her teenage daughter Anne Marie. Maggie loved that, especially because Anne Marie actually did most of the wheelchair driving. Maggie needs a break in the routine and having another driver, who was a cool teenager was excellent. (Anne Marie is the lovely young woman who outfitted Maggie for both her 18th birthday party and the prom.) We went to the Jean Paul Gaultier exhibit of outrageous fashion designs. I pointed out a few suggestions to Anne Marie for dresses she should get and hand down to Maggie. She wasn't biting.

The museum was not our only outing in the last week, though. I wrote about our trip to the playground on my last post which was great. We also had a  great time at the zoo with Maggie's friend and school mate Patrick and his mom, Carla. Here are Patrick and Maggie with their tall giraffe friend.

Carla and I also had lofty plans to do various outings with the kids, but we didn't get it together until last week. Getting the kids together is important for them and having another parent to talk to who really "gets it" is a bonus. After our zoo outing we got together for a long walk in the park and picked the only day the sun was out all week.

Another stop in the last week has been the Dahlia Garden in Golden Gate Park. We went with Clare and Anne Marie, with Patrick and Carla and even took Steve over there separately. This time of year the flowers are all in bloom and it is a spectacular display of color on these foggy gray days.

So we are off this morning for another dose of culture and fun.  We have to grab our culture quick and head home because the long awaited wheelchair repairs are happening today!! The guy is supposed to arrive in the early afternoon and will do the repairs at our house.

 Huzzah!

This will likely be our last outing with friends as school resumes Monday.

Huzzah!! Huzzah!!

* not any easier today either as I thought the exhibit was at the DeYoung when it was actually at the Palace of the Legion of Honor. A text from Lori sent me scurrying to the right museum. Great way to start a surrealist exhibit. We were a little late and then when we got there Lily was not there. She didn't feel well and begged off. We will try again on one of the several furlough days during the school year.

Back to Reality, whatever that is

Good morning. It's already Wednesday! We survived our long weekend, but just barely. It was a whirlwind.

It was great to see Eddie and Grace again. Maggie was beside herself, She just kept saying "Eddie Eddie Eddie" on her talker. He would occasionally answer with WHAT?!?! and she would laugh her head off. Maggie would then say "Eddie,  I am happy," to which he would reply/shout "Prove it!" and that would start her laughing all over again.

Dinner on Sunday turned out to be a 15 person soiree. We had to bring up a folding table from the basement to accommodate everyone. Food was delicious and company even better. There were in laws, cousins from both sides my mom and Steve's dad.   The conversation is always lively and loud punctuated with lots of laughter. On top of all that, Maggie needed suctioning almost constantly, so I would be up and down form the table suctioning her, but not missing a beat with the conversation.

 My niece brought her friend who had never met any of us. I could see she was trying to make sense of who everyone was, how they were connected and what was going on. She may be writing her own blog right about now.

While juggling all these balls in the air, I neglected to do the one thing I planned, which was to get a picture with all three of my kids. That didn't happen. Oh well. Eddie will be back in November. We'll try then.
 I did get Eddie, Tim and Grace along with Eddie's friend John just as they were heading out for a night on the town.

Everybody but my father in law was gone by Monday morning, so Maggie and I decided to take a walk in the park. As we started through the pedestrian tunnel we saw all these guys coming and I had to grab a photo.

I should be sued to seeing these segways, but when they come through in a line like that it still cracks me up. I feel like we have slipped into a cartoon or something.

 OK. Labor Day is behind us. Even though school started three weeks ago, now it's for real. In fact today is picture day and Maggie was dressed like a member of the French resistance with her black and white striped shirt and scarf around her neck. I hope they don't put a cigarette in her hand to complete the look.

Checking in to end the week

Quiet week for blogposts. I am trying to take advantage of this time that Maggie is in school to get a lot of things done. School is out next Thursday and then it will the Maggie and Mom show for four weeks until school starts again. It will be very difficult to get anything done then so I'm donig my best now.

The time approaches for our great floor sanding and refinishing extravaganza and I have been getting rid of things left and right in anticipation of our need to completely empty the first floor of the house. My office is completely out of the dining room and in a dedicated room upstairs. There is a bed in my office in case everyone is home at once, but it has officially been changed from a bedroom to an office.

This change was necessary because I am trying to do a little more (paid)  legal work and want to be up and running by the time Maggie goes back to school in Mid august.. I cannot run a practice from the dining room with Maggie and the nurse right there. I need some space.  It's nice because the room is really a sun room and it is full of light. Good thing it's so bright. I have yet to decorate. In fact the only thing on the wall is the card my husband gave me for our anniversary a few years ago. I love this picture. It's hanging just above my computer and it makes me laugh every time I look at it.

Kind of explains a lot, doesn't it.

I think Miss Maggie is ready for summer school to be over. She has been falling asleep every day. She still loves going to school, but I don't think there is enough to entertain her and she's bored. Maybe it was just too many changes with a new site and a new teacher. She adores "Mr. Kyle" but she can't seem to stay awake. And she's not sick.

I have to start planning Mom Camp II for the next four weeks. The week we spend at Uncle Pat's house will be a something very different, but it will be hard on all of us. Caring for Maggie anywhere else will be tricky but it's a great option because he has a bedroom on the ground floor and we can get Maggie in and out easily. Also it's very near the zoo, so Maggie and I can get acquainted with the apes and giraffes. She also has Girls Rock camp the first week of August, but I really have to go with her to that. I can send her nurse, but I will probably do it myself to make sure she really gets int here and takes part in everything. We will take in the Picasso exhibit at the DeYoung Museum and I'm certain have a few trips to the mall, Maggies' favorite outing in the world.

Hope everyone has a great weekend. No holidays or fireworks this weekend. But we will make our own fun.

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!

A girl and her shoes!

Keeping shoes on Maggie’s feet is a constant battle. Her movement disorder literally extends down to her toes and she is constantly wriggling out of shoes.  As we push Maggie wheelchair, there is always a bump as we run over her shoe that has fallen off her foot. When she was smaller, it was not unusual to return from an outing with one shoe missing. Now we watch closer and just keep the shoes in one of her bags as they fly off her feet.

The other day at the wedding, Maggie’s shoes were hanging on the back of her chair. They had fallen off so many times we just gave up putting them back on. A woman at our table asked who the shoes belonged to – they were clearly “little girl” shoes. When I told her they were Maggie’s, she said, wow, her feet are small. She was right. Maggie has tiny feet.  It makes sense, of course. Bones grow, in part, from use. Maggie has never walked and those bones have not borne her weight; her feet have not had any reason to grow as large as they might have.

 Maggie does not look her age, but she does not look like a toddler either. She is small all over. She weighs only 70lbs (believe me that is plenty when you have to lift her 50 times a day.) but her body is proportionally accurate except for her feet. They are proportionately even smaller than she is. She has not yet reached a size “1” – something kids hit around their 4th birthday. She is 16 years old and wears a child’s size 12. To give some contrast, when I was 16 I wore women size 9 – which is big. In fact, I probably hit that at about 13 and stayed there until a couple of years ago when I finally decided I needed a 9.5. Here is a picture of our shoes next to each other.  My feet are big, but not clown sized. Her feet are extremely small.

Finding shoes that will work for her is always a challenge. We try all sorts of different styles. Her aunt bought her some fancy Uggs, and we had to use a rubber band to keep those on her feet. We have had some success with high top tennis shoes. It takes her a while to get out of those things. On the other hand, it is very hard to get them ON her feet in the first place. Getting that heel all the way down on a kid who’s foot moves like jelly is extremely difficult.  The “dress shoes” are the worst. There is no way those will stay on her feet. I don’t even try the slip-ons that do not have a strap of some sort; and even the straps just give her something to use to balance the shoe off her toe before she flings it aside.

Getting the shoes off is something of a game for Maggie.  It is another way she can control her surroundings – or at least the people around her. She laughs her head off as we find a shoe on the ground. I put it right in her face and say, “Can you explain this, young lady?” That really sets her off. Once the shoes are off the socks are pulled off by the toes.

Her wheelchair does have straps on the footplates to keep her feet in place. They are of limited utility, however, because Maggie manages to wriggle out of her shoes. Before we gave up on those things, it was not unusual to see Maggie legs and feet flailing about while her shoes remained strapped onto the footplates.  It looked ridiculous, but there were a lot fewer “lost” shoes during that period. 

Howdy Neighbor!

I received one of “those” calls last night. Nothing major but it gets the heart beating a little faster. Seems Tim over corrected as someone turned into his block and hit his neighbor’s car. Since Tim and Eddie moved into this house on August 1, this is not a good way to meet neighbors. Still, it was minor, and no one was hurt. I like to think these little things make it less likely that something big will happen. 

I cannot get mad at him; I did something worse to one of my neighbors a few years back. (Some of you will remember this story.)

Now that there is a two hour time limit it is better, but parking on my street used to be impossible day and night.  Our street was the closest unrestricted parking to USF and the hospital up the hill and getting a spot on the street was a nightmare.  I had to use the driveway between errands. That should not be a big deal, but our driveway, like everything else about our house is narrow and there is not enough room to get the wheelchair ramp down and load Maggie into the car. Generally, what I did was bring Maggie downstairs,   “park” her where I could see her and back the car into the street, put the ramp down and load her up.

One day I did just that. Maggie was sitting in her chair just under the door. As I got into the car, Eddie arrived home from school. He said hello to Maggie and me. I got into the car to move it and he proceeded upstairs.  The button to close the garage door is at the bottom of the stairs. As Eddie walked by it, he instinctively pushed the button.  As the car slowly backed up I saw the door coming down and it was going to hit Maggie.  I JUMPED out of the car and screamed for him to stop the door. EDDIE EDDIE EDDIE EDDIE HIT THE BUTTON!  (Why didn’t I push the button in the car? I dunno. Why didn’t I just hit the door, which would have stopped it? I dunno.)  He hit the button immediately and the door stopped. Maggie was unharmed.

Crisis averted.

Or so I thought.

I turned around and the car was still in reverse and backing itself out of the driveway. I screamed again and ran to get to it before it hit the car across the street.  I tried to jump in but it was moving. Of course, the door was open and in my head I was doing some sort of mathematical analysis to figure out how I could get around the door and into the car and hit the brakes before it smashed into the parked car. I was yelling through the whole thing – which was no more than 10 seconds.  About ¾ of the way across the street, I knew it was impossible. I just threw my hands up and watched it crash into a car across the street.

Immediately some random passerby started yelling, “I saw that! You have to leave a note or it’s a hit and run.” I just looked at him dumfounded – “Buddy, I live RIGHT THERE (pointing at my house 10 yards away) where do you think I’m going to go.”

I moved the car back into the driveway and got out to find Eddie standing next to Maggie looking shocked.  We were both silent for a moment and then Eddie said, “I’m sorry mom, but that was HILARIOUS!”  He started imitating me screaming and waving my arms and then just throwing them up as it was clear I could not prevent what was going to happen. I looked at him for a ling minute but he was right and we both started laughing.  

From that day forward, Maggie has parked either in front of or behind the track of the garage door never directly underneath it.  On the upside, I did get to meet a new neighbor that day and she turned out to be very nice and understanding. And yes, I paid for the damage to her car.

All the World's a Stage

After our foray into the world of high finance on Wednesday, Maggie and I decided to stay close to home yesterday. We went for a nice long walk in Golden Gate Park. It was foggy and drippy, but we went to the Shakespeare Garden, the Rose Garden and walked by the museum and Academy of Sciences. We couldn’t go in because we had the dog.

 We did spend quite a bit of time in the concourse area. I think Maggie finally found an appropriate stage at the Bandshell in the Concourse

Today’s adventure has yet to be planned.  I am running out of ideas and energy and there’s still two weeks to go.  The weekend won’t be a problem. Maggie’s brother Eddie is coming home and that will keep her entertained.

Happy Weekend all!

9 to 5 - What a way to make a living

Steve left earlier than usual this morning because he had a meeting in Santa Cruz. Maggie was still in bed and I was doing something at the bedside. Steve bid us adieu with, “You girls have fun today.” I looked at him indignantly and said for both Maggie and I, “Fun?!? We are working today, IF you don’t mind.” He was properly apologetic.


Maggie did have to work with me today. I am the executor and trustee for my aunt and I am still dealing with some stubborn items from her estate and trust. The anniversary of her death is on Saturday so I have been doing this stuff for a year now. It has been a ton of work to get to this point. It is about 80% done. If I can get to 85% the last bit will go very quickly, but I have been stuck at this point for months. Finally, there is some movement and I had to get some paperwork done this morning. The only availability was between 9:00 AM and 11:00 AM. The nurse was not scheduled to come until 1:00PM, and Steve was working out of town, so Maggie had to come with me.

Maggie is almost NEVER in the financial district. There is just no reason for her to go. Both the streets and the sidewalks are crowded. Driving is difficult and parking is impossible or extremely expensive. That is, of course, unless you have Maggie the magic parking fairy with you. Her handicapped placard opens up all the metered spaces without having to worry about the time.

We had to make two stops about five blocks apart. I was only going to park once and walk between the two places. That gave me a range of acceptable parking; I could park near one or the other or between the two. As I drove down California Street, I was disappointed to see that almost all the metered spaces were also loading zones. Those would not work with the handicapped parking. I figured I would have to pull into an overpriced lot, but the last possible block had regular meters and there was one space open. It was right in front of one of our stops. Major score!! Maggie’s parking fairy dust never disappoints.

We got out, cleared security, went up to the 25th floor and got everything taken care of AGAIN! (I believe this is attempt #3.) We left there and started walking up the hill to the attorney’s office. I had to take Maggie’s picture as we crossed Montgomery Street, which is the heart of the financial district. (At least it was back in the day I worked down there….who knows anymore)

It is a very gentle ascent for four blocks, but the last block and one half are really a hill. They were steeper than I remember, but pushing the chair makes everything seem steeper. I was out of breath, but we arrived, delivered the golden papers and everything was taken care of. We headed back down the hill, took a break for a feeding and I asked Maggie if she was ready to go home. She slammed her fist down in her “no” response.

I figured she was due for a little fun after two boring meetings, so we did her favorite thing. We rode the glass elevators in the Hyatt Regency. Working girls have to sneak a little fun when they can!

She was laughing uproariously during that, but as we prepared to disembark from the elevators, I said, Ok, Maggie, back into the working world for us.

She put on her game face and we headed out.

Flagging Maggie (with apologies to Flogging Molly)

We went for a walk in the park this morning. Eddie is home and he joined us - but he rode his bike while we strolled. It was a good thing he was there because we were about 4 blocks from home and I went to suction Maggie and realized we forgot the suction machine. That is a first for us. Eddie zipped home on his bike and was back in about five minutes. Crises averted.

I think we were so focused on Steve lashing the American Flag to Maggie's chair that we forgot the suction machine. Her understated patriotism brought a lot of smiles to passers by. Hope everyone is enjoying their 4th of July.

sorry I just edited - I hit post instead of spell check.

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.

A Lasting Impression

At this point in my life, there are very few things that I have had since I was single. Of course, there are the mementos that have been purposefully hidden away, things I remember from my youth, which have been acquired from family members and even the odd pair of earrings that I have somehow not lost in all this time. However, after 24 years of marriage and raising kids for 22 years very few items from our single days are part of this household. If an item has survived this long, it has become part of the backdrop and I do not even notice anymore.

One of those items is a print by Camille Pissarro. If you asked me about it yesterday, I would have said, casually, "Yeah, I guess I’ve had this a long time." Today the story is different because yesterday I saw the actual painting for the first time. It was on display at the Birth of Impressionism exhibit at the deYoung Museum. (see yesterday’s post) When I saw it, I realized that this print is something I treasure. The painting is called Red Roofs and looks like this:

I received the print as a gift in 1978, when I was 22 years old, from friends returning from Paris. It was a grown up gift, a quality print. It was the very first thing I paid to have nicely framed. At that point, my life was in flux, as are the lives of many 22 year olds. In 1978, I graduated from college, left Los Angeles and returned to San Francisco. I then moved to Boston for a year and returned to San Francisco. I worked for a few years and moved a few more times. The print always came with me.

In 1982, I moved to Sacramento and started law school and the print came with me. In the fall of 1983, I lived in a terrible one bedroom furnished apartment in Sacramento. If you have ever lived in a furnished apartment, you know what I mean. Everything is functional, but nothing is aesthetically pleasing. The only thing that was “me” in that apartment was the Pissarro print hanging in the living room.

I met Steve that fall and we started “dating” (if that is what you call two law students with zero time) right around Christmas time. He came to my strange little apartment for dinner one night and went right to the print. He then asked the question that almost ended the relationship where it started.

“Did this come with the apartment?”

Uhhh, no. that is mine. (Thinking, are you KIDDING me?)

Then, in a save, he said, “I thought it was nicer than the rest of the stuff.” (I knew he was BS’ing me, but I appreciated the effort.)

From that point on, we have always referred to the print as “apartment art”

We graduated in 1985 moved back to San Francisco and married in 1986. The print was in our house on West Portal. In 1987, we bought this house and hung the print in the living room where it has been ever since. The room has been painted several times, but the print always goes back. I am not even sure when the last time I looked at it was. It is just always there.

For 32 years, it has been part of my life and I did not realize how much I loved it until yesterday.

When I returned home from the museum yesterday, I gave the print a good hard look. After seeing the original I realize how faded it is. The “Red Roofs” are no longer red. The flowerbeds on the hillside are almost indistinguishable from one another. I should probably replace it, but I doubt I will. It is my “apartment art “and it is a part of me. I have faded along with it and that is just fine.

Par-Tay

Maggie’s birthday is next Wednesday. Because I am having surgery Tuesday we will be in no shape for a proper celebration on the big day; hence we are having a party tomorrow in school.


I have to get he Maggie Mix 2010 cd prepared. Thanks to my niece Nina and from some of you (especially Elizabeth M) I have the songs, I just need to burn the cd’s. So the music will be set. You might be wondering what sort of themes we are having. Maggie and her teacher picked that out and I have to commend them on their very original choice.

Pirates? no! Surfing? No. Disco? no.

Maggie is having a pineapple party.

Yes, that’s right, pineapple.

Ms. Taylor(Maggies teacher) talked with Maggie about what she would like and this was the result. Why? you may ask. All I can say is why not? Maggie loves pineapple. She likes the sound of the word and she likes the texture and even the taste.

Even though she gets 100% of her nutrition from her gastrostomy tube,(“g-tube”) Maggie does get to taste certain things. The choices are very limited because of her severe allergies to so many things and her aversion to certain textures in her mouth. For some reason pineapple passes both tests. Pineapple is something she loves. Therefore, a pineapple party it is.

Maggie and I went to the party store over the weekend. I was thinking I would have to find Hawaiian or Tiki decorations and try to find pineapples that way. Au contraire. We found pineapple lights and many pineapple decorations and we bought ‘em all. Today I am going to make a pineapple upside down cake, buy some pineapple spears and order Hawaiian pizza for the party.

Other than her classmates and others from Mission High, just my mom is coming along with Steve and me. When I called to invite my mother, I told her about the theme and she said. “Perfect, I’ll wear m pineapple jacket.”

Of course she has a pineapple jacket. What 82-year-old mother of seven, grandmother of 20 and great grandmother of three doesn’t.

Maybe that’s where Maggie gets her joie de vivre.

Sweet Sixteen

Maggie’s 16th birthday is on March 3. 16! That is hard for me to believe.


Birthdays for her are funny. They make me very happy and very sad. It makes me happy because we made it through another year. There were many years that I did not think she would survive. Today, though it is a lot of work to keep her this way, she is healthy and stable. It makes me sad because birthdays are a reminder of the day she was born and all the terror that came with it and the very very long road we have been on ever since.

The road one has to travel with a disabled child is different from the road with typical kids. They overlap or intersect at times, but generally it is a different path altogether.  This road is filled with amazing and lovely things that others never get to see, but it is full of rocks and potholes too. That’s ok; it’s just the way it is.

Birthdays are one of the places the two roads intersect. Everybody can relate to birthdays, but for parents like me, birthdays become a very public reminder of what will never be. She is 16. That is a milestone birthday. Kids have sweet 16 parties and get drivers licenses. Not Maggie.

And that’s ok because it’s just the way it is.

When Maggie was little the boys used to ask questions about what she would and would not be able to do when she got bigger. We just answered the questions as they arose. Not because we are such excellent parents with a developmental plan, but Rather, we did not really look forward very often and the questions from the boys allowed us to deal with the future from their perspective. I specifically recall Eddie’s concern that Maggie would never have to do chores. He offered to customize her wheelchair by attaching a broom to the bottom so she could sweep the floor

Once when Maggie was about two I stopped at a store on the way home. She was still in a car seat then. Generally, I would jump out of the car, get the stroller/wheelchair set up and then grab Maggie. For some reason that day, I grabbed Maggie first. Doing anything with her in my arms was impossible. She could not even hold her head up and it took both arms to secure her safely in your arms. I had Maggie in my arms and needed to put her down to open her stroller/wheelchair. I propped her up in the driver’s seat with one hand on her and the other hand opening the chair. As I fumbled with the equipment one handed, Tim, who was about 6 or 7 looked at Maggie in the driver’s seat and asked, “Mom, will Maggie ever be able to drive?”

Of course I knew the answer was no, but that was a loaded question. It was so far away and simply telling him so could be devastating. We tended to take things as they came and this was looking way way down the line. I looked at her in the driver’s seat and looked at him and, buying time, I said, well she is awfully short, don’t you think? He laughed and said, NO, I mean when she’s bigger

I just faced the music and said, “I don’t think so Tim.” He said why not?” as if it were a challenge to me. The boys knew Maggie was going to therapists and doctors several times a week and we were all waiting to see how far she would go. By that point, I was hoping she would someday be able to sit up on her own (did not happen) but the boys were still thinking she was going to be fine. Going for the easiest answer I said, well, she doesn’t see very well and California really does not want people driving vehicles if they cannot see where they are going. “He nodded and said, “Oh, right” That totally satisfied him, but I think he had a greater understanding after that. They have always been close and that day made them a little closer. I may have posted this picture of the two of them before, but here it is again. It is one of my favorites. He's watching tv and holding her as she sleeps.

Now Maggie is there. Maggie is of “driving” age. We are all the way down that road, she is who she is, and the boys are who they are. That’s just the way it is.

 And it’s all good.

Celebrate in triplicate

Maggie’s birthday is in a couple of weeks. Birthdays are often difficult for parents of disabled children because it is like a flashing billboard reminding us of how different our kids are from their non-disabled peers. That is not so much the case with me anymore, but it was for several years. I still dislike her birthday time, for other reasons. In Maggie’s world birthdays mean more than gifts and celebrations, it is time to check in with all the service providers to renew, update tweak or even discontinue services. And Happy Birthday to you too.


This started yesterday with our visit to the doctor at California Children’s Services (CCS). This one is actually semiannual. The physical and occupational therapists give their report on Maggie’s progress toward her goals, set new goals for the next six months and recommend the frequency of service. The PT recommended cutting her therapy in half. I think that is a crock, but I did not fight it. The budget is in tatters in California and I am not sure what benefit she would get from someone who does not want to work with her.

I can accept the fiscal realities. Everybody is feeling the pinch, and Maggie is no different. What I will NOT stand for, however, is having reports contain inappropriate or incorrect information to justify cutting services. Maggie’s web of services is so complicated that a wrong piece of information at point A can be plugged in at point B and screw up more pressing services. The PT gave me his draft report and I had him change it to be accurate. If he can justify cutting services with correct information, I would not fight him. I do not agree with it, but I have to choose my battles.

Monday is Maggie’s IEP, (Individual Education Program) meeting. This is the school district’s mandated annual meeting to address Maggie’s educational needs and what services the school district will offer to meet those. For some parents this is a very contentious meeting. That has never been my experience and I do not expect it will be this time either. There may be some cuts here and there because the San Francisco Schools are B R O K E, but I am more interested in the program as a whole. There are no transitions this year, so I expect it will be fine.

After the school district, I have to meet with Golden Gate Regional Center (GGRC) for Maggie’s annual review there. I cannot remember the name of that document IPP – Individual program plan, I think. This addresses Maggie’s needs that are not school or therapy related. This agency has been reimbursing me for the nursing for the past couple of years. I do not anticipate any changes there either, but I do not think I will rest easy until I know that is the case. The budget crises looms large, but California is going to have to pay for Maggie one way or the other. It is cheaper and better for the state (and for Maggie) to stay at home than to live in an institution, so I doubt her care will be affected.

Because Maggie’s disabilities are so extreme, I do not have the same angst over these meetings that other parents have. Maggie’s needs are obvious and the services are in place. I do have to be vigilant that the reports are correct, though because undoing a mistake is very difficult. Agency B will rely upon incorrect or understated information about her medical needs from Agency A and the services adjusted accordingly. If it results in being offered a service we do not need, that’s easy; but more often it puts me in a position to fight to keep something she DOES need.

As you can imagine, all of this really kills the mood to celebrate her birthday. The real celebration comes when all this is complete.

This year, just for good measure, I am having my shoulder surgery the day before her birthday. I should be a barrel of laughs for Maggie.

enjoy this, you must

The long weekend is winding down. It was quiet, and rainy - especially Monday. Monday was ridiculous. I had to cancel a planned outing with one of Maggies' friends. It seemed irresponsible to take out two girls with fragile health condition in the middle of a deluge.


On Saturday we took Maggie to the Presidio and walked around the park that is part of the Letterman Digital Arts "Campus". It is lovely. It's hard to believe there was once a military hospital on this site. Now it's lush and elegant and very wheelchair friendly. It overlooks the Palace of Fine arts, which you can see in this picture.

Brisco, the wonder dog is not thrilled with it because they enforce the leash rules and he prefers to be free. He's always a mellow dog (except when the mailman is anywhere on the block), but he behaves extremely well when Maggie's holding the leash.

The Letterman Digital Arts center is part of George Lucas' empire. The buildings have the coolest stuff from various movies. We can't go inside, but you can see alot of cool stuff from the windows.

Or you can just hang out by the Yoda fountain and drink in his wisdom.

Glad we did this before the storm hit. Yoda's fountain may be overflowing by the time this is all over.

Feliz Cumpleanos

There was a party on Friday afternoon in Maggie’s classroom and I was invited. It was Juan’s 18th birthday. Juan is Maggie’s “boyfriend.” He has significant disabilities himself, but he uses what he has to his advantage. He is the only one in the class who can walk, so he is able to position himself next to Maggie all the time.

Juan is unable to speak and uses a dynavox as well. He does not need the buttons like Maggie does, but just uses the communication device directly. When Maggie wants to talk, she hits one switch to move the “cursor” to the thing she wants to say and, once there, uses the other switch to actually say it. When Maggie gets going, she can fly through the screens and selections to say exactly what she wants. When she is not in the mood, she just sits there smiling as if to say, “You know what I want, just do it.” Juan will have none of that. He takes her hand and hits the button with it as if to say, “C’mon, get with it.” Maggie responds to him.

Maggie did not need any prompting on Friday, though. I programmed her talker so that she could say "Happy Birthday Juan" in spanish, which is the language Juan's family speaks at home. It's simply Feliz Cumpleanos. However, that took a while becaue the dynavox doesn't recognize spanish words and I had to spell them phonetically. I believe I entered it "Felleez coompleeaanyos." He loved the message and so did his mom. (Maggie's making points with the mother.)

There are six kids in Maggie’s class and I assumed the party would be those students, the adults in the class and a couple of parents. I arranged my day to get to Juan’s party at 1:00PM, just as it was beginning. Or so I thought. When I arrived at 1:05, there were at least 25 people in the room. Juan made invitations on the computer in the classroom the day before and went all over the school distributing them. Even the principal stopped by. It was a happy group of people.

Juan was decked out in a suit and tie, and he looked marvelous. He greeted each person, including me, with a big hug. When the noise became too much for him he put on his headphones for a few minutes until he was ready to deal with it again. He is a man who knows how to handle himself.

I did get one picture of Maggie and Juan with my phone. However, I missed the best part. I received an important call and stepped out of the room for a minute. While I was gone, Juan was dancing with Maggie, holding her hand and twirling her around in the wheelchair. The teacher and nurse were looking for me, but I was in the hallway. Of course, it happens the minute I step out.


Then again, maybe it is no coincidence. Juan saw the old lady was gone and made his move.


Gratitude: I am thankful Maggie has such wonderful people around her. In all honestly, I am also thankful Maggie is not 18 yet.

Trying something new

A friend sent us a slide show on Smile box so I wanted to give it a try. Here's a photo rendition of Maggie's august. Let's see if it works

Just click on each "card". They are in order if you go clockwise on the pages, but it doesn't really matter. Enjoy!

Make a Smilebox postcard

Sunday Walk

This morning Maggie, Brisco and I walked over to Safeway to get some OJ for breakfast. I was in charge of pushing Maggie's chair and Maggie was in charge of holding Brisco's leash.

I can tell you this much. Brisco was VERY concerned when I walked three steps ahead to take these shots. He did not like me leaving my post. I'm supposed to be behind that chair steering carefully.

Zoo Landing

Maggie finally had a real outing yesterday. There was no making games out of chores, running errands or any such thing. We met Nurse Janice and her twins at the zoo. Maggie and I had a great time. The twins are two and were very sweet and entertaining. When the lion was sleeping, they just yelled GET UP. To their delight, it did.

The highlight was the feeding of the grizzly bears. We just happened to arrive at the exhibit at the perfect time. I noticed a woman placing things around the very large open space in the exhibit and said, I would not want her job. (The grizzlies were in an adjoining display and could not get to this woman.) Of course, she was putting food around and the bears find it, simulating a natural experience. The visitors stand in front of a glassed in viewing area to watch. There is a large pond in the display, one side of which is against the glass. Hence, the visitors can see under the water as well as above it.

As we arrived, I heard some children delighting in the fish swimming in the pond and overheard one docent say quietly to the other, “don’t get attached to that fish, kid.” I knew what was coming. The grizzlies came running in, started bounding around the edge of the pond and then SPLASH, in she went and grabbed that fish in her mouth. It was something to see. My adrenaline was pumping, but the kids seemed unfazed by the whole thing. They had their noses pressed up against the glass. The grizzlies were so focused on their food, nothing else mattered. It rather reminded me of dinner at our house when the boys were young teenagers.

Maggie loved it. She was cracking up the whole time. The footplate fell off her wheelchair somewhere around the penguins and she thought that was hilarious. The kids at the zoo were ignoring the animals and staring at Maggie. She did not care and neither did I. Their mothers did. I kept seeing moms scolding their kids after we walked away. I just leaned down and said to Maggie “Ooooh. He’s in truuuuuubbble.” We laughed our heads off.

All this fun was at a bargain price to boot. I think the price of the zoo was $25.50, $12 for me and $5.50 for Maggie (more if you are not a resident of San Francisco). In addition, there was an $8 parking fee. I gave the woman my credit card and she said, “Are you sure you want to charge it, it’s only $5.50.” Perplexed I said, “$5.50 TOTAL?” “Yes. She needs a companion/caregiver and there’s no charge for you and parking is free for the disabled.” Say whaaaa? Deal of the century, I do not mind telling you. I said, “Mag, I just hang out with you and stuff happens for me.”

She grinned – but I think she wants the extra $20.

Adventures Abound!

One week until school starts. I feel terrible. August was going to be the month Maggie and I had daily adventures. There have been adventures, certainly, but nothing too fun for her. Tomorrow we are heading to the zoo, though, so that will be good. In the meantime we are creating adventures wherever we find ourselves.

Maggie has been asking for various things on her talker and I am trying to comply for a couple of reasons. I want to make her happy and I want to encourage her to understand the power of communication. It's been a learning experience for both of us.

Maggie loves to "cook" as she calls it. That means she hangs out in the kitchen throwing dishtowels and lids to pots while I prepare a meal. When I asked her to point to the stove and she just looked lost. We learn through experience. Maggie sees the stove all the time and knows that I cook on it, but she didn't have any reason to connect the word "stove" to the big box on the kitchen. How often do you actually call something by its name. When I said where is it "Hot" - she pointed to the stove immediately. Of course that makes sense because I always position her where she can't reach it and tell her she can't touch that because it's "Hot".

It's time to start explaining things as I go along. I used to do that all the time when she was little, but sort of dropped the habit. Now that she has a deeper understanding of things, it's time to start again. When I made macaroni salad the other night (because Maggie kept saying "picnic") I had her put her hand in the cold water, and had her feel the macaroni before I cooked it. I told her it was going in the very hot water (which I did not let her touch, thenkyouverymuch). Then I gave her the cooked macaroni to squish in her hands. It was as thought I could see her understanding the process. She thought it was hilarious when at dinner I told Steve and Tim that we were having picnic food because Maggie requested it and that she helped make the macaroni salad. Their ooohs and ahhs were right on the mark.

Today our adventures will have to be close to home. Tim is taking the car all day, so Maggie and I will be forced to hang in the neighborhood. That's fine. Considering we had an adventure in our own kitchen, we know there are plenty of things to explore and learn right here.

We may go wild and head downstairs to the washer and dryer. It's time she started earning her keep around here.