Mini adventures

One more full week until school starts! Both Maggie and I are ready for that because we both need the structure that the school year brings. To be honest, I need it more than Maggie does. I have had a very difficult time getting anything accomplished in the past month because I don't have my required stretches of uninterrupted time.

I spend a lot more time caring for and entertaining Maggie, both of which can be quite exhausting. To make matters worse, I get a lot less sleep. I can never sneak off to bed early because there is no nurse here in the evening. They come in the morning on the days I work and in the early afternoon on the days I don't. That leaves anywhere from 3 to 6 hours in the evening for me and Maggie to further bond.  I have deal with Maggie's needs, suctioning, feeding etc until the night nurse arrives. Maggie absolutely refuses to stay in her bed even with me in the room if Dad is in the front room.(or visa versa) Often all three of us Maggie, Steve and I, are sound asleep in various chairs in the front room when the night nurse gets there. By the time I give her report and get upstairs into bed I am wide awake from the interruption. Oh well, 10 more days. We can make it.

We are trying to continue our adventures though they are limited to a few days a week now. It's just too much to try to do more than that. Two days a week is plenty for her and more than plenty for me. We are limited to short jaunts because of Maggie's constant needs but we do live in a tourist mecca, so there is no shortage of things to do.

This week we went right into the belly of the beast and headed for Union Square to go shopping. We didn't buy anything - we almost ever do - but it is fun for Maggie to be part of the action. We went through several floors of Macys and other stores and then went over to watch the cable cars go by. Maggie thought those were hilarious.

 Thursday our friend Anne Marie was visiting (of the prom dress fame!) We headed to the Asian Art museum in Civic Center. I searched for an accessible parking spot for a while, but finally gave up and went underground to the Civic Center Garage. We went down two levels to find parking, unloaded Maggie, attached her pole and her dynavox and hooked up the switches. We put her shoes back on (she kicks them off constantly) and made out way to the elevator. There for the first tie we saw the sign that read "Elevators Closed. Please use stairs. Sorry for the inconvenience."

It took a minute to compute even though an overly helpful man was offering to help with the stairs. (absolutely impossible to carry Maggie and her wheelchair full of equipment up two flights of stairs. It's well over 200 lbs) I declined his kind offer and his request/demand for $5. We drove up one  level to ask for instructions on what to do.

I told the guy at the kiosk that I had a wheelchair and he said gruffly, well there's plenty of handicapped parking. Right, say I, but how do I get her out of the lot with the elevators out of order. "Take the stairs like everyone else." Really? again, we have a wheelchair. Why don't we just walk up the car ramp "No ma'am pedestrians are not allowed on the ramp." well dude, it's either the elevator or the ramp so you are just going to have to let us. (note this whole thing took at least 20 minutes for which I had to PAY) He relented.



I pushed her up the hill to the street level, but of course there was no cut out for the wheelchair and getting her onto the very high curb wasn't going to happen. We had to walk in traffic behind a line of parked cars to reach the corner where we could get back on the sidewalk.  I was exhausted by the time we reached the museum, which is visible behind us in the picture above.

 The girls enjoyed themselves and the museum was lovely and soothing and almost made it all worthwhile.

Almost.

Throughout the visit I was worrying about getting her back DOWN the hill. Up is not nearly as bad as down. Down is scary.  We made it without incident, though.

It really is too bad we only get to do these things twice a week.

Summertime and the living is....

...regimented.

Summer is my least favorite season.

This is not historically true. When my kids were in school it was a break in the routine and we always managed a week or so away with various shorter trips thrown in for good measure. When I was college age, it was time for ROAD TRIPS! We would pick up and go at the last minute because two of us had the same days off. Didn't matter where we went, we just went. When I was a kid summer was SUMMER!! No school! no schedules!

Now with Maggie's ever increasing nursing needs, a week away is impossible and short trips are unwieldy, there are never two days off in a row. Ever. It's Oh NO, it's summer! no school and no schedule. What in the world are we gong to do to fill the time?

This reality hit home Sunday. Eddie and Grace were in Monterey with Grace's parents and Tim told us Saturday he wanted us to head down there (The boys haven't seen each other since before Christmas.)  Monterey is about 2.5 hours from here so it's doable as a day trip. Long day, but doable.

Not doable for Maggie, though. It's too much. Too much for her. Too much for me. There was a nurse scheduled to work for 8 hours, but that wasn't enough to get there and back and have any kind of visit. Steve offered to stay with Maggie so I could go, and if it were the school year I would have jumped at that. But not in the summer. I would be wrecked for Monday and I have to be ON for Miss Maggie. It was easier to just stay home.

Steve and Tim went to Monterey.
Maggie and I hit the museum.
Again.

Sunday night my sister Joan called saying she unexpectedly had Thursday and Friday off and was making an impromptu trip to Tahoe. Lake Tahoe is Summer to me. We spent every summer there when I was a kid and my parents had a house up there that we used regularly until they sold it in 1999. My sister Ellen and my brother Pat have been posting fantastic pictures of hikes they are taking together and separately in the Tahoe area. I have been drooling over those pictures.

Joan asked, Did I want to join her? A road trip? To TAHOE? Why yes! Yes I do! With every fiber of my being. The San Francisco fog is particularly thick this year and the thought of sun on my face is almost intoxicating. But...I can't. There are 8 hours in each day that don't have nursing coverage and Steve is working and Tim can't do the nursing procedures. Besides, Tim started his new job on Monday.

 So I had to pass.

I don't mean to whine, really I don't. I feel very lucky that we have so much nursing support because that's the only way Maggie can stay at home. It's the irony that summer, when most people get to enjoy a little freedom, I am the most stuck.

And what about Maggie? I worry about Maggie getting too bored. We do the same things all the time. We listen to her music. We go to the mall. We go to the museum. We go to Safeway. we go to the park. Today we are going to Best Buy AND Safeway, just to keep things interesting. Maggie needs to break up the routine as well. Camp was a great diversion, but that's done now. Of course Maggie has the uncanny ability to revel in the present. She is delighted to be wherever she is.
And she's with me.

Today is July 30. School starts August 19. It will be the Maggie and Mom show for the next 21 days.

Let us know if you need anything at the mall.

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.

Different Impressions

On Wednesday Maggie and I continued our commitment to at least one big outing a day. Her health continues to improve and I would say she is about at 98% of her baseline. (Translation: she is just about back to normal).


For our Wednesday excursion we went to the fantastic “Birth of Impressionism” exhibit at the deYoung museum (www.famsf.org). This is an exhibit from the Musee d’Orsay in Paris. We live very close to the deYoung and we walked over there in a drippy fog, hoping to beat some of the crowds. It was indeed crowded, but with our membership, we received the next viewing time, which was 4 minutes after we arrived. Perfect.

We go to the museum a lot and Maggie enjoys it, but she needs the running banter of conversation to stay involved. Because I was so enthralled with the exhibit, she was not getting enough entertainment. As I gazed upon the original of Whistlers Mother (or, La Mere de l’auteure), Maggie started using her communication device to get more attention.

Maggie, via communication device: MOM!

Me: yes Maggie I am right here, don’t you love this?

Mag: SLAM, (her fist comes down on her tray which is her “No” response.)

Me: Well that is too bad because we are here now and we are going to enjoy this.

I moved on through amazing painting from Renoir, Monet, Cezanne and, my personal favorite Pissarro. I was amazed and delighted. . Maggie? Not so much.

At one point, her chair strayed over the line on the floor, behind which the spectators were supposed to remain. The guard was on us in a moment. I apologized profusely and told Maggie to “watch it, sister” That was highly entertaining for her. However, out momentary encounter with the security guard could not sustain her interest.

As we looked at a series of Monet’s works, Maggie said, “Mom, I go home”.

I said, “sorry chicita, we are here for the duration.”

Pause. (She works on another sentence on her dynavox, which takes several moments to complete) Mom! I go my house now, mom.

Me. No dear, we are getting cultured. This is something you can always tell people you saw.

Pause. (works some more)

As she was working on, I came across a painting by Pissarro that I really love. I have had the print in my house for years, but it was the first time I ever saw the actual painting. It took my breath away. I have a separate post in the works regarding this work (I know, you cannot wait for that)

As I gazed at this lovingly, Maggie finished her sentence.

“Mom, outside, please mom”

Ok. I gave up. We were having two completely different experiences. I will go back without my teenage smarty-pants. We walked back home through the rain.

Guess what? Maggie was bummed out when we actually went home.

I told her, be careful what you wish for, smarty Marty.

Sunday in the Park

It is freezing back east. It is freezing up north. It is 70 degrees and beautiful in San Francisco. I know I know; we need rain. But it’s January 18, and it is a beautiful Sunday. We went to Golden Gate Park for a walk and a trip to the museum.

Maggie LOVES the museum. We give her the choice of the brand spanking new California Academy of Sciences with its fantastic Aquarium and its cool rain forest and albino alligator, but…nope. She always chooses the deYoung Museum. The two facilities are about 50 yards apart and both about five blocks from here. We are members of both places so it is just as easy to do one as the other. I think the huge crowds at the Academy of Sciences are a bit much for Maggie. In addition, it may be too visually stimulating with the fish tunnel and the eel cave. The museum is also crowded, but there are far fewer children running around. The museum is more sedate and cultured, just like Maggie (HA!)

To do the museum properly, you have to approach a piece of art, read the title and the author to here and then tilt her chair back a few inches and let it fall back into place. This is serious fun. She probably knows more of the artists than I do, because she listens carefully for the end when she gets a little “tippy” ride in her chair. Then she laughs her head off until we get to the next work of art. At first, other people do not know how to react, but after three or four paintings, they are cracking up too.

Walking over there and back is also entertaining. The best part of all is the area off 6th avenue where there are roller skaters and people on trick bikes. There is music blaring from a large sound system that is set up in a jogging stroller. (The skaters bring it in on their skates). There are usually about 100 people standing around watching another 20 or so do tricks, speed around and just have fun. The mix of people is hilarious. There are some families with little kids and teenagers, but it is mostly adults doing amazing feats on their skates or bikes. You will see a 40-year-old guy zoom past a four year old. There is never a collision, but I’m not sure why not. It is not a roller rink, per se, but it has evolved into a de facto skating area.

We have to walk right through there but it is never a problem. Folks zoom right by Maggie and wave at her in her chair. She laughs through the whole thing. Here she is with dad just after negotiating our way through.

Today was especially festive, and it was not just the weather. People are in a good mood and excited. The music was “Celebrate” and it was interspersed with Obama’s voice saying this is OUR TIME. It was amazing. Little kids are dancing, dogs are running around, and people are laughing and skating and riding and having fun. The energy was great.

As I said, I know we need rain, but I am glad it wasn’t today.