Ac-CEN-tu-ate the positive

OK, I just re-read my last two entries and I say enough of the somber. Of course I miss Maggie and I will for the rest of my life, but even when the sadness overflows as it has been lately, I remain filled with great memories of an amazing young woman.

And her memory lives on! A few weeks ago I shared the "Remembering Maggie McDonald" team page for the UCSF Hardhat walk on September 6. Lots of folks have signed up to walk with us or just to donate in Maggie's memory. That means so much to us!

I have ordered these hats for anyone on Maggie's team who shows up to the walk and will adorn them with Maggie's picture (if I actually get that together).

If anyone wants to jump into the fun, here is the link  Maggie's hardhat walk team. Please feel free to join in. I can always order more hats. (they're plastic, so don't start planning your construction career around them)

In addition to the hard hat walk, so many people made donations after Maggie passed away that she is now on the list of donors who support the Family Resource Room at UCSF Benioff Children's Hospital. This room is for families of hospitalized children and they can just sit and have a cup of coffee, or use computers, fax and phone or get things they need that they may have forgotten from home. It was a great comfort to me throughout Maggie's hundreds of hospitalizations  The little plaque was just installed the other day and it made me cry just a little bit - in a good way - when I saw it. 

And just as I was finishing this post, I received a message from a former neighbor who reads this blog all the time. Seems her nine yer old daughter is ready for her first foray into the mall and wants to go to Stonestown, just like Maggie did. I'm not really sure Maggie can take credit for a young lady wanting to hit the mall, because it seems to be a developmental milestone, but I know Maggie was instrumental in that particular girl's choice, and that makes me happy. 

So despite my ongoing sadness, which will always be there, I have so many reasons to smile knowing Maggie is still working her magic and improving people's lives. 

She was something else. 

One step forward...sort of

There was a small breakthrough yesterday. A trifle, really, but I figured it was time to post something postive.

It will be three months tomorrow since Maggie passed away, and it's been three months and one week since I've been to Stonestown Mall.  Yes, I have been avoiding it, but in all honesty haven't really had the need to go. Yesterday I decided it was time to put my toe in the water.

I'm not much of a shopper. I wait until I need something and then I go get it. It's 90 degrees in San Francisco which is a rarity. I have about two shirts that I can wear when it's this hot and I cannot wash them every day. I knew it was time to buy a few things.  San Francisco is something of a shopping mecca, so there was no shortage of options for me. Considering, however, that I am not a tourist and have no need to purchase (or pay for) designer clothes, it makes the most sense to just head to the mall.

The Mall. The place Maggie and I went every weekend. Her favorite place in the world. She was a teenager and for the last few years of her life she LOVED to go to the mall. Even if it was just with her old mom. We would go, do a lap around the mall upstairs and down and then head home. We almost never bought anything unless there was a birthday or something. We just had to "be seen" at the mall.  I found it a bit boring, but Maggie loved it.

I boycotted the mall for a while after the broken elevaor and insensitive security guard got me riled (see Maggie World: An avoidable series of unfortunate events);  but Maggie is far more forgiving than I. Trips to other malls or shopping downtown wasn't the same. Maggie wanted to go to Stonestown mall and Maggie got what Maggie wanted. We went back.

I parked in the lot right next to a handicapped spot. Ironically, there were several handicapped spots available, which never happened when I was with Maggie. (Tuesday afternoon vs Saturday morning). I sat in the car for a few minutes debating whether or not I was ready for this, then decided I was being silly. As I approached the door to Macy's my phone rang. It was Eddie. Happily I plopped down on a bench and talked to him delaying my entry.

When the conversation was over, I took a breath and went in. I made my purchase and as I was looking for my credt card I found a $25 gift card in my wallet that I didn't even remember I had. (SCORE!). I went immediatly back to the car feeling flush with success.

It was only when I started the engine that I realized I only went to Macy's; I never actually went into the mall. Maggie would tolerate time in Macy's, but all the action was in the Mall.

Oh well, I got my toe wet. It's a start.  

Maggie and I went shopping on Saturday, as we are wont to do. I am currently boycotting Stonestown mall because of an incident a few weeks ago involving a broken elevator and a security guard who found our predicament amusing. I wrote about that here and sent them a fax describing the situation, but not even the courtesy of a reply. We will go back, eventually, but I need to be completely over it first.

Maggie kept saying on her talker "Mom I go to the mall" and I would say,"well no, we are going to go downtown. No mall Macy's for us, Mag, - we are talking 9 floors of fun!" She switched gears and tried to make a sentence that said we are going downtown, but she could not make it happen. She kept saying "Mom we are going down" and I would say "right, downtown. Do you want me to help you spell town?" She slammed her fist down which is her response for NO! She kept trying. I kept offering and she kept rejecting me. Finally I said, "you know down and town rhyme." That seemed to make it click for her.  She cleared her sentence and went back to work. My husband entered the room and she made this sentence:
y

"Dad I will go to down down Dad"

I cracked up and said Way to go Maggie. That's close enough. She was very proud. Steve was a bit perplexed for a minute, but then he got it. From here forward, we will likely refer to it as Downdown"

As we shop - or do anything -  Maggie and i keep up a running commentary. She says "Mom. can I say something please," and i say "Please do" as we peruse the goods at Macys'. Then it becomes, "Mom I want to listen to music." and I say, "there's Music playing in the store, can you hear it.?" (makes sign for) Yes. "Do you like it?" NO! Usually it's "MOM MOM MOM MOM" and I say "what what what what?" This type of banter is non stop. Others look at us quizzically, but generally smile and move on. Once in a while I get "That is amazing" and I smile and say, "Isn't it? She's smart as a whip"

Perhaps because that is the norm, I was more than taken aback by a woman who chided me for not paying attention to Maggie. I was paying for some purchases and Maggie was saying MOM MOM MOM MOM. A woman was suddenly next to me saying, "Hey, She needs you. She is trying to get your attention." I glanced at Maggie and back at this very angry woman and said calmly, "I'm on it, thanks.  She was not to be deterred. She said, SHE NEEDS SOMETHING. I looked at Maggie again who was happy as a lark but a bit wary of this strange encounter, and said evenly but a little icily, "she's fine, Thank you."  This woman just GLARED at me and then looked over at a cop who was a few feet away. This cop had opened the door for us and we exchanged pleasantries when I entered. I thought. Go ahead, Lady. Make my day. I just looked at her disapproving face and said "You really just need to mind your own business, you have no idea what's happening here." She huffed and started to walk away. 

I finished my purchase and looked at Maggie. THe lady had frightened her a little bit because she was so angry. When she heard me tell her to mind her own business, Maggie started laughing her head off. The cop, who didn't seem to notice the exchange said, "Wow, she sure is happy isn't she." 

I smiled sweetly and said, She certainly is. Maggie laughed again.

And the cop opened the door so we could leave.
 

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.

Vote with your Wheels

Maggie decided we should go to the mall today. She would not entertain any other options. The museum? NO! Target? NO! walk in the park NO NO NO! She is a mall rat. It's an age appropriate activity, even if you have to go with your old mom.

We bought some fantastic baby girl clothes for our friend's new baby, which is always fun. It's so easy to pick things out, it's just hard to stop because all of it is so cute! Once that was done I said, let's go get a card so we can wrap this up when we get home and have it all ready to give to the new mama. We went into Papyrus, which is a fancy card store. It's a tad overpriced, but it was right there.

We entered the store and one of the workers was making her way out with three large boxes on a dolly. I pushed Maggie into a side aisle so she could pass. We were cornered because I could not negotiate the tight turn. When she was done I carefully backed Maggie out to the main aisle again. The clerk told me the new baby cards were toward the back on the right. Ok. We started back. A woman was perusing cards and her stroller was blocking my path. I said, "excuse me, please."She looked up and quickly moved the stroller so we could pass.

There was a sharp right turn to navigate with displays on either side. I evaluated how to manage that. Once back to the section I needed I would not be able to reach the cards because Maggie would be blocking the way. I considered my options for a moment and then just stopped.

Why am I shopping in a store that cannot accomodate Maggie's wheelchair?  Why would I spend money on an overpriced card when this establishment makes it so difficult to bring my daughter into her store?

I said to the woman, this just isn't going to work and I started backing out. She said, very nicely, "I will be happy to hand you anything you are interested in."  I pictured myself gesturing and saying "That one, no up, ..to the right. Yes! That one."  Of course I would probably have to do that several times to get something I wanted. I just said nicely, "nope, it's just not going to work."  The woman was very nice. She offered accomodations, but the bottom line is that I could not shop the way I wanted because I had a wheelchair user with me. That just doesn't work for me.

I hope she took note. I hope other people in wheelchairs and their families don't shop at stores that don't have room for wheelchairs. Getting inside the store is not access, you have to be able to shop. Strollers and dollies have to get around too, so it's not just wheelchair users - or their mothers -  who would benefit.

There are a few individuals in wheelchairs who make a living setting up businesses for claims. I hate that. The professional litigant in the wheelchair is giving other wheelchair users a bad rap.  Those people are taking advantage of the laws to further their own interests and they are causing unnecessary grief for the small business owners. Neighborhood Businesses are closing because of this activity. I do not condone this in the least and have no intention of filing any type of complaint.

But I don't have to shop there either. We rolled out, voting with our wheels.