An avoidable series of unfortunate events

Maggie's favorite outing is a trip to the Mall. And by the Mall, Maggie means Stonestown Galleria. Not target, not Union Square, not even Westfield Mall. She loves the familiarity of Stonestown. We basically walk the length of the mall upstairs and down and then come home. Maggie looks forward to this, in fact she starts telling me Friday afternoon and doesn't let up until we actually go sometime over the weekend. If we aren't going I let her know right away to avoid a meltdown but I promise her we will go the next week  We were so busy last weekend we never got to go, so the expectations for this weekend's trip were high.

Parking is always an adventure with Maggie, but we have pretty good luck in the underground parking lot at Stonestown. This time I actually checked around outside first. I was hoping to go to Trader Joe's and wanted to avoid carrying groceries and pushing the wheelchair back through the mall. There was nothing accessible outside, so we headed down to "our spot." The wheelchair spaces are in the back row behind the entrance to the elevator. Maggie and I always seem to get the same spot and yesterday was no exception. This mall trip was looking good.

I unloaded her from the car and put the ramp back. We walked around the elevators with a nice family with three little girls in soccer uniforms. They were shyly waving at Maggie and running ahead to get the door. That's when we saw this.

 The elevator was out of service. The mom of the little girls pointed to the other entrance, but I said "you guys go, but that's an escalator and it won't work for us." The mom looked stricken, the dad was aghast. The little girls were confused. Maggie was impatient. I was angry.

The dad said, "This is terrible. What are you going to do." I appreciated that he got how screwed up the situation was and said, "if it were up to me I would just go home, but I promised her, so I guess I'm walking up the auto ramp."

This happened to us once before and I did just turn around and leave. But I couldn't do that to Maggie. I looked around for any other elevator, but found nothing. I went into the gym that opens into the garage, but they did not have an elevator. Having no choice, I started pushing Maggie up the steep auto ramp. That loaded chair is well over 200 lbs and uphill is no small feat. The car behind me must have been irritated, though not nearly as much as I was, but to his credit,  he did not honk the horn or peal around us.

Once up the ramp, we are on the far side of the parking lot away from the entrance to the mall. I pushed her back across the parking lot and had to go way past the entrance to find a curb cut. We backtracked to the entrance where I found the security guard (Paul Blart, Mall Cop). I told him our predicament and for some reason he found it amusing. I did not share his viewpoint. He laughed when I told him I came up the auto ramp saying "Ohhh you were waaaay off." REALLY, Dude? Really? He directed me to another elevator near the mall offices. I figured maybe it was time to visit the mall offices. I did suggest to him that a sign downstairs would be very helpful to others in this situation.

We went into Macy's, took their elevator upstairs and started to head to the mall offices. Oops, can't go that way, there are stairs. I went around to the ramp on the other side and doubled back. Of course, it is Saturday and the offices were closed. Again, REALLY? There are probably 5000 people in that mall and the offices are closed. The sign said we could get 24 hour security help, but I had already dealt with security. In fact he was part of the reason I was there. At least I found the freight elevator the guy told me about.

We did our thing and made our way back to that elevator. When it opened on "B" I was trying to figure out where we were. I stepped out of the elevator and the doors closed behind us. Of course we were not in the garage at all, but behind the mall in another outside parking lot/freight area. I was further from my goal than ever. We waited at least 5 minutes for the elevator to return, went back to the main area of the mall to find Paul Blart, but he was nowhere to be found. I called the number for security and a woman started to direct me to those same elevators. I told her that would not work.

At this point I am getting more than impatient. I knew I could walk back down the auto ramp, but it is just too steep and I really really did not want to do that. I became (shall we say) insistent with her. She finally realized what I was saying and said, "Oh you need Freight elevator #5." Really? There are FIVE of them?

At her direction I went into the deepest bowels of the mall and eventually found Freight elevator # 5 and proceeded downstairs to the car. To my surprise, I was only about 20 yards from the broken elevator. How could I have missed it? Maybe it was the giant sign on the door that says DO NOT ENTER. AUTHORIZED PERSONNEL ONLY. How silly of me. Why wouldn't I assume that was the way we were supposed to go.  E X H A L E.

When I got home I went on the Mall's website to give them "feedback". I wrote an impassioned letter noting how often we visit Stonestown and if we didn't know our way around who would? I mentioned that a single sign directing people could have prevented the entire series of unfortunate events. I also suggested a little sensitivity training and perhaps some mall orientation for the laughing security guard who gave us incorrect information.

The feedback did not go through because their website was not working.  REALLY? Undeterred, i googled the name of the general manager of the mall and his email popped up. I sent my letter directly to him. That email came back undeliverable.  I'm starting to understand why things are so screwed up there. I gave up and wrote this.

 I cannot wait for Maggie to ask to go back to the Mall. After a lifetime of hanging out at that Mall, I think it might be time for a change. I'm just not sure how I will convince Maggie of this.

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.

Mall withdrawal

This broken foot is really slowing me down. It hasn't really been painful so I just went about my regular activities. Perhaps walking 12 blocks on Friday wasn't that good of an idea.  I'm paying the price for that now. It's a bit painful, but mostly it is just exhausting me. I have to choose one outing and pace myself.

This morning Maggie asked if we could go to the mall. She hasn't been in nearly two weeks and she may be having mall withdrawal, a serious condition that targets teenage girls. Sadly, her condition will go untreated as the mall was not the one outing chosen for today.

The outing du jour was Costco. We  have been needing to do a Costco run for a while and I wanted to do it while Steve was available to help me. Even I have limits, and pushing Maggie's chair and pulling one of those giant carts with a broken foot is just too pathetic. When we got there Steve suggested I ride around in one of these. He even offered to rig it up so I could tow Maggie and the basket.  I politely declined. 

 Maggie wasn't buying my argument that  Costco is just a mall without walls. There was quite a bit of eye rolling by someone.

As we were finishing up, a man walked around us to get something. I was suctioning Maggie and probably blocking traffic. I saw him look back at us, but didn't really pay any attention until I heard him say "Hi Maggie, what are you doing here."  That is something that just doesn't happen very often and it surprised me.   

He turned out to be Mr. D, a teacher from Mission High.  Mr. D doesn't teach special ed, but he certainly knew Maggie. He was one of her best customers when they used to do the coffee cart on Mondays.Maggie was beside herself with joy when she realized who it was, reaching out her hand and throwing herself back in her chair laughing. 

 Mr. D's simple greeting and chat completely changed Maggie's affect. He saved me from a pouting Maggie just by saying hello.

 The mall withdrawal is in remission.   

  

Growing up and ditching mom

I had a bit of an epiphany the other day. Usually i am stressing about how tied down i am. Finally i started looking at it from another angle and i realized its Maggie that needs more freedom from me.

Maggie had the opportunity to socialize with some cool older folks who are accomplished AAC* users. It was great. Maggie was a little intimated but that was appropriate. She was younger than all of them and didn't know them very well. But there will be more opportunities and she will get more comfortable.

I know Maggie can hold her own communication wise when she's comfortable in a situation. I just received this picture from her classroom via text. It's a compound sentence she made on her dynavox. That is incredibly difficult to do and she does it with abandon.

If you can't read it, it says: Miss Laura, I am excited because it will be spring break and Josephine is coming to see me today.  (FYI - Miss Laura is a para in the classroom and both of those statements are correct.)

Maggie just needs the social confidence that she will gain by going on outings withOUT me. Maggie needs more freedom and a "voice" of her own.Hence Maggie now has her own Facebook page (Maggie McDonald). We have to start somewhere and this way so that she can communicate directly with folks. I will be her translator for a while but eventually she will get it on her own.

I may be in trouble when she figures out how to pay me back for all the pictures of her that I have posted. In fact, we ALL may be in a little bit of trouble.


*AAC is assistive and augmentative communication. Maggie's dynavox is an AAC device

No Mother, I am NOT ready for some FOOTBALL?

We are having a nice quiet weekend. Maggie is a bit under the weather, but not terribly so. Yesterday we did our weekly trip to the Mall. Maggie was trying to decide if she should get a 49er t-shirt or stick with her giants. Decisions decisions.

We  are going to walk over to Safeway in a few minutes to get food for dinner and for the afternoon of watching the 49er game. Maggie and I will be in and out of there before the rest of the crowds even wake up. The game starts at noon so we can add a walk in the park to the mix.

A walk in the park is mandatory this morning. I definitely need to do something with Maggie while I can  because Maggie will not enjoy the football game. She does not care that it's the NFC Championship game and a trip to the Superbowl is on the line. It's too long, too fast and too loud for her. She doesn't mind baseball because she can actually see what goes on. Baseball is relaxing and allows for lots of time to keep Maggie engaged. We ask her opinion on balls and strikes and she cracks up. Football is too fast for that and, worse than the pace of the game, we are less interactive with her. Football requires closer attention. That does not please Maggie who firmly believes all attention should focus on her at all times.

I've mentioned before that Maggie really doesn't watch television at all. She can SEE it, but she really cannot process the movement of the screen. Generally if we are watching it she is using her dynavox to say "I DON"T LIKE TV." And I generally give her one of the following responses. "too bad for you, we do" or "yes, you've mentioned that several times."  She laughs for a minute and then says "I DON"T LIKE TV" over and over again.

It's very relaxing.

We finally got a big flat screen TV at Christmas time. It was a gift from Steve to me. A gift I did not want because our old TV worked fine and because we could not figure out where to put it. The old cabinet that Steve handmade was not going to work because it was so deep. Where would we put it , yada yada yada.
Steve put it on the mantel, which I don't like because I think it detracts from our beautiful fireplace and it takes over the living room.

Despite my nagging and general lack of appreciation of the gift I have to admit, I really love the quality of the picture on this new set.



Even Maggie tolerates watching the new TV for a while. Because it's so clear and so big and out in the open, she can SEE it much better. The first day it was up I turned it on in the morning and Maggie sat there transfixed watching "Enchanted" and laughing at the appropriate places. That only lasted about 20 minutes, but it was a new record.

I do not expect Maggie to suddenly embrace professional football or the dreaded instant replays, but she will enjoy the cheering when they score, or intercept, or sack the quarterback. But she will only have to suffer through it for an hour because her nurse comes at 1:00 PM and Maggie will be the center of the world again and can ignore her embarrassing parents in the front room yelling at that infernal television.

So we are off to Safeway to stock up. Maggie wants earplugs.

Go Niners. 

Back at it

It is Monday following the busiest weekend in the history of San Francisco. And it's Columbus Day or Indigenous People's day. Whatever you call it, it's a day off school for Maggie so Mom is "on" for one more day.

Faboo.

We are all very tired around here. There was so much going on in the City that it was exhausting just trying to decide what to do. We had a friend staying with us so he could join in the fun too and that was great. There were several major events including the America's Cup races, the Giants and 49er games, and The Castro Street Fair - none of which we attended. It was fleet week and there were tons of military personnel walking around. and the Blue Angels screaming overhead. Everybody took part in that.

There was also the Hardly Strictly Bluegrass Festival in Golden Gate park that drew easily 200,000+ people each day for three days -- most of whom needed to park in our neighborhood. That meant we really couldn't use the car all weekend because we would never be able to park again. I skipped the festival this year but Steve and his friend Chris walked down there on Saturday and stayed for several hours. We also went down to North Beach yesterday to attend the Sts. Peter and Paul Bazaar and watch the Italian Heritage Parade, which is always a hoot. I had to grab this picture of the nuns waving at the kids who were in the parade as they passed the convent.





We walked back through Chinatown and Steve stopped to buy some fish at his favorite little market. Apparently Steve likes it because he looks like Gulliver in Lilliputian land. He was a head taller than every other shopper in there.

All of these events are too crowded, too far away, or just too much for Maggie. That meant she needed her own outings. Another of Steve's friends was coming to Breakfast on Saturday morning, and i wasn't sure how we would fit in an outing for Maggie. Killing two birds with one stone, I sent her on a walk to the grocery store with Steve and Chris to get a few last minute things on Saturday. she pinched a package if bagels and Steve had to go back and pay for them.

Sunday we all walked over to the museum and took in some Gaugin and Renoir before stopping at the now fading dahlia garden

Today Maggie and I hit the mall as she was suffering from retail withdrawal. Now I need to hit napland but alas it does not appear to be on Maggie's schedule today

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.

Finding Joy, however fleeting

This morning we went to the playground. Maggie loves to go to the playground, even though she cannot really join in on the activities. She loves to watch the kids running back and forth and listen to the squeals of the little kids. Today was even better because we went with a couple of other kids who would run and squeal and then come back to Maggie to see what she was sayingand interact with her. Maggie was in her glory.

We headed to what Eddie used to call "The Big Park," which is the children's playground in Golden Gate Park. It really is "The Big Park" compared to neighborhood playgrounds. It is huge. This park was redone about seven or eight years ago and it is even better than before. There are lots of those engineered soft surfaces instead of sand and Maggie's wheelchair can go to more places. (There is still sand in some places, just not as much). There are climbing sculptures like this one that we decided was a crashing wave. I used to think it was the spine of a buried dinosaur, but the wave makes more sense.

There is one adapted swing for disabled kids or for kids who are afraid of the regular swing, I guess. It's a seat with a back instead of a sling type seat. We asked Maggie if she wanted to try and she said yes, so we lifted her into the seat. At first she did not like it.Maggie  has little or no control of her trunk or head and really needs to be strapped in to stay upright. The seat had no straps and you could tell from Maggie's face that it was scaring her. We had to stop her from falling over several times, before we got her balanced.

Once we got her centered correctly and she knew there was a hand on her, she felt safer and actually started to enjoy herself.  It didn't last long, but it was worth it. We have learned to push through the hesitation and fear to get to the joy, even if it's fleeting.

Fleeting Joy is definitely better than no joy.

GIRLS ROCK!

Maggie is going to GIRLS ROCK! camp this week.GIRLS ROCK! takes place at (what everyone knows as) the MTU, which is the medical therapy unit of California Children's Services (CCS).

In case you haven't picked up on this before, there are a million initials in Maggie World.

California Children's Service serves low income children and those with certain "qualifying conditions." The MTU provides therapy to those with qualifying conditions. Cerebral palsy is one of those qualifying conditions and, though not the only one I suspect it is the most common. Maggie is by far the most involved camper - just as she is ALWAYS the most involved kid anywhere - but all of the campers have some level of physical involvement or they would not be at this Camp. Some of the campers really don't need to be there for themselves but they act as mentors for the others and it's a great thing.

Maggie loves this. I took this picture of her as we headed there on Day 1.

Maggie and I spend a LOT of time together and I really appreciate this opportunity for her to have some fun with other girls.  Maggie's only recreation and socialization is school and this year she had all male classmates. This is the ONLY recreational activity available for Maggie when school is out. I do act as Maggie's aide or nurse at camp, but I try to stay out of the way unless she needs suctioning or feeding or something or intervene if an activity will trip any of her dozens of allergies. That means I am about five feet away from her all the time, but believe me she having fun with the other girls.Today I have the nurse coming early so Maggie will go to camp with her. I will run errands while they are having fun and pick them up after a couple of hours.

There are about 14 campers this year. That's the most in the four or five years Maggie has been going. At first some of the girls are sort of afraid of Maggie, which is typical, but within a day or so they are including her in their activities and laughing at her antics.  Maggie may not be able to set a table but she definitely benefits from the opportunity to socialize with the other girls. 

The Camp is great. It goes for five days and each day the girls connect a little bit more. That's part of the wicked plan. These girls are often without peers to hang with socially and miss out on some of that teenage interaction. So far they have made soap, done their nails and learned to do mini facials, made tie-dyed shirts and bandanas, learned to pack a suitcase, set a table and lots of other things. There is also a ton of information and empowerment for these young women but for the most part they don't even realize it's happening. The best was a panel of CCS graduates they had the other day - but that needs a post of its own.

The camp lasts 3.5 hours, but Maggie can't quite go that long. She needs to be catheterized every 3 hours and I can comfortably stretch that to 3.5 but when we factor in travel time, we can't stay for the whole thing. I could cath her there, but there really isn't any place to do that with privacy and that's just too much information for the other campers.

GIRLS ROCK! is over tomorrow and then we have another two full weeks before school starts. I have a few things up my sleeve, including connecting with one a couple of her different friends. She will have fun, but it will be nothing like this. For one thing, I am NOT crafty at all.

I really appreciate this camp and what it gives Maggie. In this time of budget cuts and slashing of services to the disabled, the powers that be need to come and see what these dedicated therapists put together for this group. They would be amazed.

I know I am.  

Songs in the KEY of Life

I manage to get myself into the strangest situations. Or maybe the situations are run of the mill annoyances that are made extraordinary because Maggie is present. Either way, it can be head shaking.

All day yesterday I carried around a card that I was sending to a friend. I wrote it early in the morning, addressed and stamped it. I went to the post office and forgot to mail it. I went out five more times and forgot to mail it every time. Late in the afternoon I was out with Maggie and her nurse, Joy. We were in the Inner Sunset District. I remembered the note and knew the post office there picked up mail until six o'clock and it was about 5:30. I was feeling quite smug about finally remembering, even though it will take the card less time to get to its destination than it took me to remember to put it in the mail box. 

I saw a parking spot and grabbed it. It wasn't a handicapped spot, but it didn't need to be. Maggie and Joy could stay in the car while I pop my letter in the box. All I had to do was turn off the engine and run to the mailbox about 30 feet away.


The car key I was using is the spare and it is a single key without a ring. I should not be using a single key. I do have a set of key with the van key on the ring, but I grabbed the spare as we were walking out the door because Joy and Maggie were waiting for me and I didn't bother to hunt for my keys.  The spare key is broken and cannot be attached to a ring. The key works fine, just the little plastic part that allows one to attach it to a ring is broken. Considering those keys cost $200 to replace, I figure this can be a spare. 
  
I pulled my single key out of the ignition and it flew out of my hand. I saw it fall down below the raised floor below the drivers seat. Remember the van floor is lowered about 18 inches to accommodate the wheelchair, so there are large metal boxes below the two front seats so that one's feet don't dangle in the wind.  Now the key was underneath this large box in a dark abyss.

OK, this is problematic. I was finally understanding why the key had a panic button on it, but of course I could not find the key to hit the panic button.

I was very close to the car next to me and had to squeeze out of my door. I opened the sliding passenger door on the van side and knelt on the street trying to see underneath the large box for the errant key. My legs were just behind the tire of the car next to us. I told Joy to tell me if anyone got in that car because they would run right over both my legs if they backed out, and, in fairness, they would never expect someone to be back there.

Incidentally, Maggie thought this was particularly hilarious.

I could see nothing. I flailed my hands all around and felt nothing. I dumped out my purse in case the other set happened to be in there. They were  not. I was stymied.

We could have easily walked home, it was less than a mile, but I could not get Maggie out of the car. There were cars on both sides of us and  no room to lower the lift. (see picture) We were trapped.

I felt incredibly stupid and I had no choice but to call Steve to come and rescue us. Steve is used to these strange calls from me and doesn't even lecture. He was still at the office downtown, and just started gathering his things and shutting down his day. Still, by the time he went home, located my keys and came to rescue us it would be at least an hour.  I told him I would try to get a stick or a coat hanger from someone and if I succeeded I would let him know.

Meanwhile. Joy is now kneeling on the ground and reaching as far into that dark space as she could. She could see something in the same space that I could see nothing. (old eyes don't work as well). Before I hung up the phone with Steve, Joy comes up with the key.  She was definitely the hero. I took it  from her very carefully and started to get back in the car.

Joy had to remind me to mail the card.  

SFMAGGIE

Took this picture of Maggie at the DeYoung Museum yesterday. This enormous map of San Francisco is in the observation tower. I stepped back and there was SFMAGGIE in the flesh.

Or, as I said on facebook, she's the queen in her throne surveying her realm.

For those interested, I joined twitter over the weekend. So far I've retweeted one thing. I'm still learning how it all works, but if you want to find me I'm coghlanmcdonald

Weekend

Nice weekend. Yesterday Maggie and I went downtown yesterday to the Westfield Mall and San Francisco Centre, which are connected at each floor. Maggie enjoyed cruising around two separate malls without having to get back in the car. Twice the entertainment. And we still didn't buy anything.

Today we went down to the Hyde Street Pier, but Maggie slept through the entire outing. Even the Balcutha, which she usually loves (because she had a field trip there in the 5th grade) could not entertain her.

Imagine that. Taking a teenager on an outing and having them act bored or sleepy through the entire thing. Shrug.


This evening we are just hanging around. Maggie is catching up on The Economist. She finds those articles so very inciteful, even upside down.

Hope your weekend was good.

Grouchy Camper, Grouchy Counselor

Mom Camp is almost over. Summer school starts on Monday. That's a good thing because the camp counselor is getting quite grouchy, and the camper is becoming more difficult to please. When Maggie is out of school I lose the only time I have to myself. Maggie and I have fun together, but everything becomes more difficult and more time consuming. She's bored and I'm frazzled, which is always a very helpful combination.

Yesterday we did our gardening project and everything looks lovely. Maggie was really not that interested at all, though she did enjoy watering our newly planted flowers and herbs this morning. Here are two of the five containers we planted.

We then made a quick trip to the mall, Maggie's favorite place on earth. We were shopping for Grandpa who hit the big 8-0 yesterday. A helpful clerk took us all over the store looking for shorts with elastic in the waist that were not basketball shorts.   He seemed to forget that I was pushing a huge wheelchair as her darted through racks and narrow openings. Finally Maggie and I just stopped and stayed where he could see us so we didn't get stuck somewhere.

By the way, Maggie would like everyone to know that a trip to the men's department does not really count as a trip to the mall. She was quite peeved at me.

The nurse arrived but that doesn't really give me a break because she can't do anything on her own anymore. I had to fetch all the supplies downstairs, lift Maggie and help with all the procedures. I had to time things right so I could be gone for awhile as I wanted to go to dinner with Steve and his dad for his birthday.  Steve was already in the East Bay and was going straight to his dad's so I planned to take BART out there. Before I could do that, though, I to arrange for Tim to be around to help with the next set of procedures so I could go.

When the most relaxing part of your day is a commuter train ride out to the East Bay, it may be time for a break.

The three of us went to dinner and them came back to the house for cake and pie with Steve's cousin Jenny and her boyfriend Scott who live in the house with Grandpa Ed.  The rest of the family will celebrate this weekend at (yet another) graduation, and again in a few weeks at a family reunion; but we didn't want the actual birthday to slip by unnoticed. Ed enjoyed his day, which was the main goal.

Of course two of the three things I bought have to be returned, so Maggie gets another trip to the men's department. She's thrilled about that.

We are both ready for Summer school to start.

Changeable plans ahead!

My plan was to take Maggie on a Bay cruise today, but she's been a tad under the weather and I figured maybe rolling around on the Bay wasn't a great idea for someone with some intestinal problems. Besides, I'm not sure that's something I want to do without an extra pair of hands.

The weather looked fabulous this morning. The sky was blue and Maggie's room in the back (east side) of the house was warm and cozy. I dressed Maggie in her new halter top that we bought yesterday. She looked great. She thought it was hilarious when Dad came in and said, What are you wearing young lady? Where do you think you are, Las Vegas?"

Because of the lovely weather, Plan B was a walk along the promenade above Ocean Beach. There is a walkway that goes for about a mile or more and when it's nice it's a great place to walk. As we loaded into the car I realized it wasn't quite as warm as I thought.  We headed west for a couple of miles until we hit the beach. The wind seemed to pick up with every few blocks we traveled.  I parked, opened the door, lowed the lift and immediately closed it again. It was blowing so hard out there that sand was flying everywhere. Blowing sand is no fun for anyone, but especially not for someone with a trach. It was not exactly wheelchair friendly either; the walkway was covered with the blowing sand.
   

Time for Plan C. Maggie and I turned south and hit Home Depot in Daly City. We bought new shades for her room (she pulls and yanks on them and we have to replace them regularly) and we decided to starts a new project as well. We bought a bunch of plants, flowers, herbs, tomatoes, seeds and even some bulbs. Tomorrow morning we are going to plant them in containers on the deck so Maggie can be part of watering them and watching them grow.  Stay tuned to see if we actually get this project going.

Mom Camp goes Science!

Mama Bear, with authority

Camp Mom starts today. Maggie is finished with school and we have two weeks until Summer school starts. That means I am chief cook and bottle washer for the next two weeks. We will have an outing every day, but I have no idea what those will be. Maggie is about the easiest person in the world to entertain, she takes absolute joy in the moment and is perfectly happy with an outing to the mall.  The mall is the easiest, but it drives me to drink so we have to mix it up a bit.

Generally we just have to fill the mornings and the nurse comes around 1 or so. That way I can split up the hours. Today the nurse is not coming until 3:00PM because we need to cover the hours this evening as I have tickets to the Giants game. (Seats are non accessible, so Maggie is out for this one.)

We do, however have to be home at 1:30 as the inspector from the court is coming. I filed papers to be Maggie's conservator and the court sends someone out to determine if Maggie really needs to be conserved. The hearing is in July and the inspector has to file a report for the judge before that time.  It's a good thing that they investigate. Once someone is conserved they really lose a lot of rights. They cannot run their own affairs, handle their own money or make their own decisions. Care must be taken that there are no shenanigans going on.

In Maggie's case it is really a formality. Obviously, one who cannot care for her own physical needs must have someone looking after and advocating for her. It is also pretty clear I'm not trying to take over her life to control her vast wealth. (She has about $80.)   It is for her protection and ours. Now that she's 18, she is an adult. Without a conservatorship, people don't have to check in with me on decisions involving her.  In a worst case scenario, doctors could prevent me from making decisions or even being informed about her health status. I'm not too worried about that but it would be stupid not to be prepared.

 I will have to report to the court annually to show what we did with her money, report where she is living etc. That's totally worth it to be able to shut people up who attempt to manipulate her, or us,  in any way. If the conservatorship is granted, I will have the courts permission to continue to act as Mama Bear, without the hibernation.  I think I know how to do that job.

Off to figure out some entertainment for the morning. Too bad she's not into drinking coffee and chatting. That would be my activity of choice.

No school Monday

No school for Maggie today. There were teacher meetings or some such thing. This us the type of day off my mother used to call "janitor got a new broom day." I didn't really really get her sarcasm when I was the one with the day off.

I understand it better now.

Maggie enjoyed a fun filled morning with me. We listened to her music and then went to north beach to get Maggie's haircut. No one enjoys a haircut more than Maggie.

She enjoyed a quick  
feeding and then helped me at Safeway. She loved the pepper display I let her pick one even though nether she nor I touch the things. (she can't, I won't).

We were back here when the nurse arrived. They two of them of them are hanging out while I work.




Perhaps I should get back to that.

No Place Like Home

A frustrating morning is turning out alright.

Steve needed to bring his car to the dealer for some recall item. I laughed when I heard him make arrangements to drop it off at 7:00AM on Saturday. He's not really an early morning guy. But it made sense. He needs the car all week and dropping it off early Saturday insures it will be done today. Still 7:00AM is early for him, especially when he arrives after 11:00PM from an overnight trip to court in a distant county.

I thought what the heck, we'll make an adventure out of it. Maggie and I would pick him up at the dealer and the three of us could go out to breakfast. At 6:55 AM I had to yell at him to get out of bed and get the car down there. Maggie and I left about 15 minutes after he did and picked him up. At the last moment I took pity on the dog and invited him along. That was a tactical error because it further limited our options.  Now we needed to find a place to eat outside so the dog wouldn't freak out. But it was a little cold, so the outside patio had to be in the sunshine for Maggie and for us.

We wandered about, but many places like that cater more to the Brunch set and weren't even opened yet. We headed down by AT&T Park, because its Giants opening weekend and everything is in celebration mode. Not really many breakfast places down there - but lots of taverns. Didn't seem right for us. Maggie started coughing and as we turned to suction her, I realized I forgot the suction machine. We had to rush home. (It was just too early for me too)
 
We dropped off the dog and started out again, this time in our neighborhood. The neighborhood places are small and don't really fit Maggie's chair. I'm not making an ADA statement here. She would sort of fit and no one would turn us away, but it's not very comfortable.  Steve suggested another neighborhood across town and I said No. I'm not driving any place else. I was irked. Something as simple as breakfast out was too complicated for us.

This stuff gets old.

We gave up, went to Safeway, bough some eggs and came home. Of course I dropped the bag of groceries and lost three eggs in the crash which only added to my frustration.

When we arrived, our back deck was bathed in sunlight and protected from the cool breeze. I made scrambled eggs and toast and we found exactly what we were looking for. Dorothy was right. After all of our searching, it turns out there really is no place like home.

Maggie enjoyed that but she was ready to move on to the next adventure. She didn't have much fun riding around town in the dawn's early light either. She just worked her Dynavox until she assured Steve they needed to head to the park. They took the dog leaving me a few minutes of peace.

I'm going back out to the deck with the paper. 

Back to School

Maggie's Spring Break is over and I'm not sure who was happpier, her or me. Probably her.

She didn't get to have much fun, that's for sure. Even though we were able to get the car back on time on Friday afternoon, her wheelchair broke on Sunday meaning we couldn't really go anywhere, my excellent duct tape repair notwithstanding. It was fixed by Tuesday and then the rain started. She also spent all of Thursday morning at UCSF for a scheduled pulmonology appointment and tests. Bleak.

We did manage a trip to Macy's Union Square on Wednesday. We need a new chair for the nurses. The last one was really cheap and it didn't last at all, so we bought a nicer chair. It will arrive on Thursday. Maggie thinks watching me try out chairs is just about the funniest thing in the world, so that was a high point. Also, it is the Spring floral show at Macy's and the first floor was beautiful.

We went to the mall on Saturday and Maggie helped me shop for Sees Candy. If you have never tried Sees Candy, I can tell you you are missing something wonderful. I put this picture on facebook and about 15 people responded mentioning their favorite Sees candy. Maggie can't eat it, of course, but she had fun looking at all the beautiful selections.


Sunday the sun was out and it was a perfect day to head to the park. It was a tad chilly when you were out of the sun, but in the sunshine it was juuuuuust right.

She isn't really smiling in any of these, but she gave a HUGE grin when she saw Nurse Janice this morning. She lives for school!

Only about 8 weeks of school left, then we have to come up with more diverse outings.

Dented Door Blues

Vanless. That's my lot this week. After the great mis-merge of 2012, I had to get the van fixed. No van means no way to transport Maggie.  Come to think of it,  it wasn't a "Miss" merge at all. If I had missed her when I merged, I wouldn't have this problem.

I took the car in on Monday morning and, fingers crossed, I will have it back by Friday.  I really hope that happens because going into what promises to be a rainy weekend without any way to get Maggie places will not be fun. We are fortunate to live where there is so much to do withing walking distance, but we cannot take advantage of that if it's raining. I should hear from them today if  they are ready to paint. If they are it will be dry by Friday. Otherwise it will be Monday.

I originally took the van to the place the insurance company recommended, but that shop was crazy busy and wanted to have the van for a minimum of 6-8 working days and THEN paint. When you factor in weekends that meant two weeks without the van. Not workable.

The new place is called International Sports Motors - because my minivan is so sporty. I know Adam, one of the guys who works there, and his nephew is a peer of Maggie's and he "gets" the need to have the van back.  He actually fixed my old van when Eddie had an encounter with a wall several years ago and did a great job, so I am confident this will work out too.

Right now the sliding door won't close unless the front door is open. The damage is mostly where the two doors meet, but there is a nice scrape on the rest of the sliding door. Fortunately, I did not damage the lift in any way.

Vanless during the week is not a problem. Maggie takes the bus to and from school and she is pretty wiped out after school anyway. I can walk to the supermarket, bank and post office or hop a bus to go anywhere else in town. Better yet, I could actually clean the house and clean out drawers etc. Note: I haven't yet (and it's Wednesday) but I could. The problem is the weekend.

Steve is going away this weekend and we won't even have a backup vehicle. Not that his car would help much. But in a pinch we could put the wheelchair in the back of his car and put Maggie in a specialized car seat. I probably wouldn't try that anyway because the 100 lb wheelchair would have to be lifted in and out of the back and laid on its side. But knowing it won't be here makes me a tad nervous. Obviously in a real emergency I could and would call 911, but something less than dire is always possible in Maggie's World.

With any luck at all I will hear today that we are on schedule for Friday and can take Maggie to the mall or any number of other important places this weekend.

___________
Update - they just called and the car is being prepped for paint now and will be done be Friday, barring any earthquakes, power outages or other catastrophes. Yay!

Security, social and otherwise

You have not lived until you've spent 90+ minutes at the Social Security Office with Maggie. We went to do her intake as she is turning 18 (tomorrow!). When they gave me the appointment, I asked if it would be better to wait until after her birthday and was assured that one is eligible as an adult disabled person 90 days prior to her 18th birthday. Ok. Let's get this done.

The social security office is in a federal building, so there is a TSA like security system in place. Only less efficient. When you roll up with a wheelchair as loaded with equipment as Maggie's it takes a while. In fact it took us about 25 minutes to get through security. Again,  they were very nice and just doing their jobs, but OH. MY. GOD.

As is often the case, there is a very large man with a big booming voice doing the security. He could easily be a bouncer at a nightclub and toss people out on the street. He was kind, but he was going to be very thorough with Ms. Maggie. He'd seen her type before, she obviously looked suspicious to him. Every single piece of equipment had to be explained, examined and x-rayed. WHAT IS THIS? A suction machine. WHAT IS THIS? That's her computer that she uses to communicate? TAKE IT OUT OF THE BAG, I NEED TO SEE IT. Done. PUT IT BACK IN THE BAG. Done. WHAT IS THIS? That's the pole that we use to attach the computer to her wheelchair. WHAT IS THIS? That's her oxygen tank. WHAT IS IN THIS PINK BAG? Oh, that's a spare tracheostomy tube and supplies in case the tube in her neck falls out. (The guy looked a little queasy on that one). And WHAT IS N THIS PLASTIC BAG? Oh, that's an ambu bag in case she stops breathing. (He teetered a little bit there too). 

Everything went through xray, fine, but the guy knocked over the oxygen tank and it started to whistle. They all jumped at that noise. WHY IS THAT MAKING THAT NOISE? CAN YOU STOP THAT NOISE? I explained that the tank has to be upright and stood it up. The guy barked at me to lay it down for the xray. Ok, but it's going to whistle. When it came through the xray it was "smoking" and that freaked them out. I told them it was just leaking oxygen (which is why it needs to be upright.) 

While all this is going on scary looking guys were whisking right through security without a second look. We were just getting started. They wanded Maggie all over the place. He asked if she could put her arms out to her sides and I told him no, but she could possibly do one at a time. Up until the wanding, Maggie was amused. But when he started waving that thing in front of her she started giving him the stink eye look and I was trying not to laugh. He had no idea that she was DONE with him. 

After all that I thought we were too late for the appointment, but we made it into the building with exactly 3 seconds to spare and waited less than a minute to be called. That brief moment of efficiency was not to last, however. Even though the information I received is correct and one can apply for SS 90 days before they turn 18, the computers aren't programmed for someone to enter the system before 18. I figured that out in about 5 minutes. The person doing the intake did not want to give up, though, so we sat there for 90 minutes while he very kindly tried to make it work.I kept telling the guy we could come back and he said, you are here now, let's make it work. 

The guy was working, and checking with his supervisor, The woman at the next desk was helping him. Meanwhile Maggie was charming everyone in the place. She was laughing and reaching for me and cracking up whenever I talked to her, which was about every 30 seconds. Then she was growing weary of the waiting, though I was the only one that really realized that because her demeanor did not change. It was her words.  Maggie was using her talker. "Mom. Go to car Mom. Drive to school." Ok Mag, in a few minutes. "Mom, Saturday is my birthday mom" Yes, dear I know, that's why we're here. Mom I want to go now"

So do I, Maggie. So do I.

Finally we set up a telephone interview for Monday so the computers will recognize that she is 18. Even though I filled out a form for two hours at home, spent nearly two hours getting to and sitting through the meeting yesterday and now I have to do another 90 minutes on Monday, I jumped at the opportunity for the phone call.

Anything to avoid going through security with Maggie again. She is not to be trusted.

.