On this Saturday before Christmas. I went downtown to see Union Square, the Macy's windows and all the other decorations. I was with my sister Mary and we were not trying to buy anything, we were just enjoying the Holiday energy all around us. We walked over to the Westfield Mall to get a look at the dome from the old Emporium store remembering it from our childhood.
As we approached the dome, I heard a woman ask a question from my right side. I didn't even see her because I was looking at Mary who was off to my left. But I heard four little words that I haven't heard in so many months and knew she was talking to me. She asked,
"Are you Maggie's mom?"
I turned and looked at her, she was smiling and friendly looking and looked like any number of women I know. but I didn't recognize her. I simply said, "Yes, I am. Do I know you?" She introduced herself to me as a reader of this blog and recognized me from the pictures?!?!?! Her name is Marilyn and I cannot begin to tell you how much she made my day. I am always glad to know people are reading this, but to hear that question again was amazing. (And my sister thinks I'm famous!)
In my many years on this planet, I've been many things, daughter, sister, friend, niece, aunt, godmother, wife, mother, lawyer, chief cook and bottle washer and so many other things. The one role that defines me above all others, though is being "Maggie's Mom."
This does not in any way diminish my role as mom to Eddie and Tim, and they know that. People don't address me as "Eddie's mom" or "Tim's mom"; but being "Maggie's Mom" is something else. It describes a role I had to invent and reinvent over and over again. It describes the hardest and best job I ever had and one the I miss every single day.
At an event last year I was being introduced someone that I knew before but didn't remember from where. The person introducing us wasn't helping us make the connection and we fumbled through the first part of the conversation. When I realized who she was I said, "Oh, I remember you, I'm Maggie's mom." And THEN she knew who I was. The person making the connection said, "Oh, I wasn't sure if I could still call you that." I didn't say anything at the time, but I'm not gonna lie, that one hurt a bit. I simply said "that doesn't change. I'm still her mom and that's how people know me. Maggie was a superstar and I am her mom."
And today a lady name Marilyn recognized me, and remembered my superstar and said those four little words I love to hear. Thanks Marilyn, you made my day and my Christmas.
The answer is Yes. I am Maggie's mom. Now and always.
It's Monday morning. It's a holiday for some - Maggie for one - but it still feels like Monday. There is a malaise in the air which is due in part to the sad finish to the 49ers season yesterday. We will marshall on. It's what we do.
We had an extremely busy weekend mostly dealing with issues involving Steve's Dad. Lots of logistics at play there. Last weekend was the same and though I promised Maggie a trip to the mall, it never materialized. That meant we HAD to go this weekend. Maggie really doesn't ask for much in the way of outings, so it's the least I can do. Saturday afternoon we were going to be moving my father in law's stuff, Sunday was the game (I didn't realize it started so late). If we were going to get a mall visit in, it had to be Saturday morning. One problem. Steve was using the van to take his dad out. We cannot fit two wheelchairs in the van. What to do?
I know. Easy peasy. We will take the bus. Steve could drop us off downtown on his way to get his dad. Maggie and I could hit the fancy malls downtown and take the bus home. The San Francisco Municipal Railway (Muni) is handicapped accessible. We have done it several times on the metro (trains) but had never tried the bus. I've seen others in chairs on the bus and know many of the buses are equipped with lifts. We can take any of four bus lines from downtown to here and have only a two block walk. If one bus isn't accessible, the next one will be. We can do it! It will be an adventure.
It was.
We waited at a stop serviced by 3 of the 4 possible lines. (5, 21 and 31). I hoped for a 31 because it was not an electric trolley. Those trolley's are kind to the planet but are very jerky for the riders. First bus to appear was the 31. Wish granted! And it had a lift for the chair. This was going to be easy. As a bonus we had the nicest, most accommodating driver in the City. We're off!
Sort of.
The lift takes a few minutes to do and we were taking a while to get settled. I maneuvered past another wheelchair on the bus. That man was giving me directions on fitting past him. No problem. The driver had readied a spot for the chair, flipping up a seat to reveal a place to lock in. I got her chair into place and realized only then that the left brake was broken on her chair. Not GOOD. I tried to hold it in place with only one wheel locked but could not maneuver the straps. A kind passenger from the back of the bus came up and put a seat belt around her chair. I decided I would have to just stand behind her and hold the chair in place while holding on to keep from falling myself. Not good. And also not terribly effective. She wasn't rolling around the bus or anything. One wheel was locked and there was a seat belt, but she was pivoting around on the unlocked wheel with me trying to hold it steady. My wrist still hurts from that.
The driver stopped the bus and came back to lock her chair in better. I feared the broken brake would put us on the streets, but that was not a problem. There were giant tie downs, but I could not get them to move. Neither could the driver. Again, I thought we were out of luck. Another passenger, a lady with two different shoes on, started giving the driver directions. Push that BUTTON, right THERE! He listened to her and voila! the tie downs unlocked and Maggie was secure. I thanked the driver and the lady and the man in the back and I sat down wiping sweat from my brow. Now we could have the regular adventure of riding a bus across the city, which is more than enough, believe me.
The man who originally helped me got up to disembark. He was getting off the back of the bus and the driver yelled at him to come up there. I watched warily. I thought if that guy didn't pay his fare or something I was going to do it for him. If he was going to get in trouble I was going to intervene. Not to worry. I heard the driver say "Thanks for your help before" and hand him something. I don't know if it was a pass for another bus ride or what. As the guy walked past me I said "Thanks again" and he just nodded. Nice moment.
I thanked the lady with the mismatched shoes as she left too. She just waved it off. Nice people on the sometimes rough 31 Balboa on Saturday at noon.
Maggie rides buses all the time and was non plussed by the entire thing. In fact she fell asleep while I sat on the edge of my chair for the entire 20 minute ride - made 30 minutes because of us.
Finally we arrived at our stop and I could not undo the tie downs. The driver said, "this is your stop." I said "I know, but she's stuck." I thought we were going to be like Charlie on the MTA and never return. (Listen to this great song below.) The driver readied the lift and then came back to help. At first he couldn't do it either. I longed for the mismatched shoe lady, but she was long gone. Suddenly the driver got it and Maggie was free.
I went to get off, thanked everyone on the bus for their patience, thanked the driver and told him I needed a drink. He said, me too, but I can't for several hours yet. Fortunately, this is the store between the bus stop and our house. It's actually called "Drink Liquor." I didn't partake, but it's nice to know it's there.
I know I am spoiled having our van. I know there are hundreds of people who go through this every single and I am very very glad not to be one of them.
I am not used to relying on the kindness of strangers, but I had to on Saturday and the good people on Muni came through for me.
Here's Charlie and the MTA. I've been singing it all weekend.
It's hard to believe that Christmas is upon us again. It's a busy busy season that ends so peacefully. I like the busy-ness in the beginning, but long for the peaceful ending. The fact that I have to do food shopping for three big meals, and clean this cluttered house before that peace comes does not enthrall me, but it's all part of the whole Christmas gig.
Maggie thinks any season that involves a ton of shopping is a good season, no mater what your religious affiliation. We have shopped downtown, in Fishermans' Wharf, in Westlake, in Stonestown, in the neighborhood, on Clement Street and on the Embarcadero.(online too, but that does NOT count in Maggie's view.) Life is good for a shopaholic like Maggie. I have to work at the hospital this morning, but we will made one more run to the mall late this afternoon. Maggie needs to get something else for Tim. We found out yesterday someone else gave him what Maggie bought.
In addition to shopping, we do have certain traditions that go along with the Christmas season. Once is to ride the glass elevators at the Hyatt Regency. We did it every year until a couple of years ago when they decided to go all Homeland Security on us. We couldn't get in the elevator without a room key. We joined hotel guests when we could but it wasn't the same. We went this year and were able to ride again. Some floors were locked off, but we did get plenty of time in there. The hanging lights are always spectacular, especially as you ascend into them in the glass elevators.
I think you can see how very much Maggie loves it.
Just in case we don't get back here before Wednesday, I want to say how very much I appreciate you taking the time to read about Maggie's antics and adventures.
Maggie and I wish everyone a very Merry Christmas. If you don't celebrate Christmas, we wish you a very Happy Wednesday and all the Blessings of the Season, no matter how you celebrate.
Maggie had her dream weekend. We shopped both Saturday AND Sunday. Life doesn't get any better than that for her. Both days we were out early to make parking a little easier. No parking problem either day. However, there is a bit of a problem with the amount of people out and about so early. Generally when Maggie and I hit the stores early, there are very few others to get in our way. Not so in mid December.
With Christmas fast approaching, I needed to get a few things I had a specific idea in mind for somebody and we headed down to Cost Pus at Fisherman's wharf. That is a huge store full of colors and bright things that are entertaining to look at and to buy. They are also entertaining to try on. Maggie modeled several hats for the passers by.
Of course they didn't have what I was looking for, but we found something else. We put our stuff in the car and wandered around the wharf area. We stopped at Boudin to watch them make french bread and found out old friend Anna there. We say hello to her whenever we are around there. The bakery is a real working bakery, but there is a large exhibition window in the front for tourists and others to watch. Anna interacts with the people outside the window via a microphone/speaker set up. As soon as she saw us the speakers blared, "Maggie, Hello! How are you doing?" Maggie thought that was hilarious and all the tourists were trying to figure out who Maggie was. Fame! So many things to worry about.
After that we walked around the wharf for a while and admired the boats decorated for Christmas.
Sunday we returned to Stonestown for the first time since the great elevator outage of 2013. It was fine. Crowded and overwhelming, but fine. We did get a chance to try on some pink glasses, so the day wasn't a waste.
Like many malls, Stonestown has those kiosks in the middle and the sales people really hawk their wares. It is incredibly annoying. Generally you can avoid them but it was difficult maneuvering the wheelchair with the crowds. It was freaking Maggie out a little to have these sales people in our face. One guy who insisted on trying to wrap some pillow around me and them Maggie was particularly annoying. I said "No Thank you" and he tried again. I stopped, looked him in the face and said, Look Buddy, I said no thank you - now BACK OFF. Very very Christmas-y. But it definitely cheered Maggie up for a minute but then she ran out of energy pretty quickly after that happened.
We came home and caught the last quarter of the 49er game with Tim. As he often does, he grabbed Maggie out of her chair so they could sit together and watch the game. Hanging with him makes her very happy.
All in all an excellent weekend. Now it's the last week of school and then vacation.
We could shop every day.
Oh save me.
Monday, November 11, 2013
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.
This is a new computer and I am constantly surprised when I press a button and something unexpected happens. I was just about done with a post yesterday when it disappeared from my screen. It was quite frustrating, and I had to just walk away. Hopefully the computer did not decide the post was too dull and did a self edit. I am in big trouble if that happened.
I awoke early this morning and took a shower before coming downstairs, which is unusual for me. Generally the mornings are so jam packed that I have to wait to shower. It was leisurely and nice and I arrived downstairs refreshed and ready to face the day. it didn't last long.
As always I went straight to Maggie's room where I found Lucy the nurse struggling to hold a broken trach tube in place and get a new one ready. I hopped into action. It is very difficult to change a broken trach tube alone. You have to hold the old one in place and then switch it for the new one and then hold that in place while you thread the ties through. Basically you need three hands. Plus, this is all done on Maggie who cannot stay still. The trach change doesn't hurt her and she is very cooperative, but her movements are involuntary. I took over while Lucy held the tube in place and Maggie was all squared away with a nice new breathing tube.
Then I had a cup of coffee, though the caffeine jolt was unnecessary
This is the second heart rate raising incident in two days, though the other was just for a moment. On Labor Day Maggie and i went downtown to shop. We didn't buy anything, but we wandered around Union Square and hit both the San Francisco Center and Westfield mall on busy Market Street. It is a shopping mecca and Maggie loves it.
Market Street is the main artery in downtown San Francisco. it is an incredibly busy place with street cars and buses everywhere in addition to taxicabs and regular cars braving the madness.
As we wandered back toward our car, we had to cross Market. No problem, there are plenty of signals and it's pedestrian friendly. We crossed at this very intersection shown in the picture and for the first time ever, the front wheel of Maggie's wheelchair got stuck in the streetcar track. I pulled and tugged but nothing happened. Buses and streetcars were waiting for the green light to proceed. I could see the pedestrian light counting down and could feel some adrenaline starting to pump. Maggie was oblivious to this of course. She thought it was hilarious that I kept yanking on her chair I yanked again with that mom strength and out it popped. We got to the other side of the street and I saw a man and a woman with their eyes popping out watching us. The guy just said "good job there." I nodded but just kept walking, not trusting my voice yet.
There wouldn't have been any real danger, of course, Maggie was clearly visible and she would not have been hit or anything. But Maggie and I would have shut down Market street while we got her unstuck. That alone was getting my heart racing.
As we drove home, I told Maggie she was Nell and I was Dudley Doright. She was unimpressed. I think she puts me in more of a Snidley Whiplash category. After all, I'm the one who got her stuck on the tracks.
That's three very different types of technical difficulties in three days. Of the three, I'll take the computer problems. they are aggravating, but not scary.
As we often do, we hit the Mall on Saturday. Parking was without incident and we were in the mall in record time. Generally it takes us so long to get going we have to whip through so the nurse isn't locked outside waiting for us to get home. Not this time. We arrived around 11AM and the nurse was arriving at 1, so we had plenty of time to stroll.
We entered Macy's at one end of the and made out way to the middle of the mall. There Maggie chose to take the elevator UP and continue on the second floor. We went down one side all the way to Nordstrom, and started up the other side. We went all the way back to Macy's. I bought a pair of pants and as I was paying I noticed this
Maggie had lost a shoe
This is not unusual. Maggie's feet are so tiny and pliable, that it is difficult to keep shoes on her. Often once the shoe goes, the sock follows suit. Maggie looks like a small field goal kicker from a former NFL era.
The sock was still on, so the shoe could be nearby. I asked the clerk if anyone had turned in a shoe, but alas, it was not going to be that easy. We wound back through the departments we utilized, but nothing. We made our way back to the mall entrance stopping at an especially central and very busy cashier station to ask before we left the store.
I could feel the disapproval of the women in line as I interrupted the busy clerk, but that quickly changed to sweet concern. The clerk couldn't hear me at first, so I pointed to Maggie's shoeless foot and said "She dropped a shoe, did anyone turn it in here?" The ladies in line all clucked their concern but I just said airily, "Oh thanks, but don't worry. this happens all the time. She's Cinderella and she's trolling for Prince Charming." Maggie laughed uproariously at that. The ladies tittered politely.
We made our way back down the mall, looking on ledges and in corners for the errant shoe. At the food court I asked a woman if there was a lot and found because we were missing a shoe, but she didn't speak English and suggested I go to Aldo and buy Maggie some designer shoes. No. But thanks. If we are going to lose shoes, they are not going to be expensive shoes.
We continued our quest. We were getting close to the other end of the mall and I figured it was gone forever. Two women were walking in our direction talking about something that was likely stolen. Turns out they were referring to a single shoe. As they passed us the view behind them opened up and there it was.
All in all a good trip to the mall, though Prince Charming remains elusive.
I wrote most of this early this morning before putting Maggie on the bus. I noticed a familiar sight and had to grab this shot while we were downstairs waiting for the bus to arrive
Would someone kindly explain to me how Thanksgiving week arrived already? Seems like I lost a month or so somewhere along the line.
Maggie is off school on Wednesday so she and I will make the stuffing and pies and set the table together. I like to have all that stuff done by Wednesday night so Thursday is just a matter of cooking. No baking, no other prep. There's plenty to do without worrying about readying the house.
I am hoping to take Tim and pop over to my mom's to say hello to "my side" of the family, who are gathering there. We will have dinner here, but it would be nice to say hello to nieces and nephews I haven't seen for a while. Hope that works out, timing wise. We shall see.
We will be 10 this year, down from our 16 from last year.. Eddie is not coming home, he and Grace are headed up to her parents house. Steve's sister and her family are going to her mother in law's house, so its just Steve's brother and his family, my father in law and Josephine, one of Maggie's nurses who doesn't have any family here. If anyone out there needs a place to be for Thanksgiving, let me know. We have room and lots of food.
Not sure what the plans are for the weekend following. We will see Steve's family more over the weekend but schedules are conflicting. I will just wait and see what we can do. I cannot take Maggie to a lot of places and may have to miss those gatherings. I used to just drag her around and pretend it wasn't a problem, but I can't pretend anymore. It would be nice if she could be included in things, but if the destination or planned activity is too much for Maggie,we just stay back. She's always invited, but unless you are living the logistics, people don't realize what is entailed in getting her places. Doesn't matter, Maggie and I have fun no matter what we do.
I can tell you this, I will NOT be shopping on Black Friday.*shudder* I find the whole thing to be a distasteful display. Saw this picture on facebook and it cracked me up.
And now with the stores opening on Thanksgiving night, sheesh! Nothing is sacred anymore.
So, let the Holidaze begin!
I should be back before Thursday, but just in case, Happy Thanksgiving week folks.
I am grateful that you spend time reading this blog!
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.
Gung Hay Fat Choy! It is Chinese New Year and it is the Year of the Dragon, which is the Big one. I learned over the weekend that it is very desirable to have a male child in the Year of the Dragon. Eddie's a Dragon, so I nailed that one!
Maggie was born in the Year of the Dog and I was born in the Year of the Monkey. As I was looking through various things about the Lunar Calendar and the various animals etc, I checked on the compatibility of the Dog and the Monkey. This is what I found:
Dog and MONKEY Have underlying respect for each other. No clashes of wills. Good and workable relations in love and partnerships. Will cooperate well together.
No wonder Maggie and I have such fun together.
We are going to spend Chinese New Year going to the Mall because that is what the dog is demanding. In fact as I write this she is saying "Mom go to upstairs and wear clothes Mom."
I guess I better sign off. I don't need a mad dog, that's for sure.
(Oh, and lest you think I'm typing in the nude, forget it. I just need to change before we can go out.)
"Greetings cards have all been sent...the Christmas rush is through."
Except that it isn't. I did send greeting cards, but I was so disorganized that some people got two while others were overlooked. I'm still waiting for an address too, so that will be a New Years card. My house is full to bursting with gifts, food, decorations and stuff. Still more rushing to do today, but mostly it's the grocery variety. That can be the most competitive shopping of all, though.
I do have to return a space heater I bought yesterday. My father in law is here and the room he is sleeping in does not have heat. We have a space heater in Maggie's room. We do not leave the heat on at night because it gets too hot upstairs, but the nurse would freeze without some heat. I couldn't take that one.
I was sure we had one and I went downstairs to our junk/storage area to find one. Turns out one was completely broken and the other was only a fan. Hmm. I texted or called various family friends and neighbors to see about borrowing a space heater, but no one had one. So off to Walgreen's to purchase a space heater. No problem. If the one in Maggie's room breaks I will have a spare. I brought it upstairs and started to set it up and HELLO - there's a space heater in that room already. This one is going back immediately. That's ONE thing out of this house.
Maggie and I went to North Beach yesterday and bought the good stuff for Christmas Eve dinner. It's all cash and carry down there, so we hit the bank, loaded up on cash and went to the bakery to get foccacia, and to the deli to get fresh ravioli. I used to do that on the morning of Christmas Eve, but it is so ridiculously crowded, that I decided to just get it done. I have a refrigerator and a freezer. Save energy. Use the technology!
Then we passed a Chinese vegetable market with the most beautiful string beans and had to stop. The place was small and tight, but we did not let that deter us. The owner said something like "I take care of him" (meaning Maggie.) He wanted me to wander around inside the shop and leave her out on Stockton Street.
Uhhhh NO.
I didn't think he could handle a lesson in suctioning so I thanked him but said no, I will keep her with me. We maneuvered with great difficulty through the little store, annoying some very competitive vegetable shoppers, and nearly knocking over giant bins of various types of produce, but I emerged with some beautiful veggies.
The busy day was made easier by the amazing weather. I know we need rain and there's no snow in the mountains, but it's hard to argue with this kind of day.
Hope everyone has a great day. the big day is upon us. Grandpa is already here. We are anxious for the arrival of Eddie and Grace late tonight and undoubtedly Tim will pop in at some point today.
One Christmas season at least 30 years ago I went Christmas Shopping with my sister Mary. This is not earthshaking, I've done that with all of my sisters and brothers over the years. But this one trip was memorable and I am reminded of it whenever all of our Christmas crap decorations are out I remember this because I still have the Christmas mug I bought on that excursion.
Neither of us had kids then, but I think she was already married. We were in downtown San Francisco and decided our mission was to purchase something on every single floor of Macy's. I don't think we BOTH had to purchase something on every floor, but together we had to make sure we hit all of them. At that time there ware 8 floors in one building. Totally doable. Now Macys took over the IMagnin Building and there are 8 floors in two buildings and another building across the street with an additional four floors.(I think that one used to be Liberty House). Even if we were inclined to try, which we are not, I doubt we could succeed today.
It was a perfectly normal thing for us to do in those days. We were young, working and without responsibilities. A shirt for dad, on the first floor, something for mom on 4, ornaments or some such thing on 8, undoubtedly something for us on the floors with the clothes, but I don't remember .I bought the Christmas Mug in the cellar and I believe she did too.
In the years since life changed a hundred times. We have both had children, in fact each of us has a child with disabilities and our priorities changed. We went shopping one day last week and of course we went into Macy's. Mary did buy me a fishing ornament to replace Steve's cool one that was lost in the tree crash, but.I think that's the only $5 we spent in that store. We looked around and went out to lunch instead. Much more fitting. I am enjoying my coffee out of this mug right now and marveling at the number of years that have gone by, and how much life has changed. Mostly, though I'm marveling that this cup has survived 30 years of packing up the Christmas stuff and has only one little nick (visible above the handle).
Long time no post....Every time I sat down to write something I ran out of gas. I was fighting a bug all week and simply did not have any stamina. So far Maggie hasn't come down with it, and I hope it stays that way.
We had a rule in my house growing up. We were not allowed to decorate, discuss or even anticipate Christmas until after my sister Joan's birthday. That's today! I talked to her this morning and won't see her for the rest of the day, so that means I am free to acknowledge that Christmas is coming. Since I was feeling better today we headed downtown early this morning to beat the crowd and check out some of the Christmas decorations.
The best thing about getting downtown early is that it's easy to find street parking. Most of the stores weren't even opened at 9:15 when we arrived. People arriving for a day of shopping would likely not park on the street. They would have to feed the meter constantly. Carrying around all that change would deter them and likely injure their backs. We do not have that problem when Maggie is with us. We can park pretty much anywhere and put up the disabled placard and not pay a dime. Win Win!!
We checked out the puppies and Kittens in Macy's windows, went through Holiday Lane in Macy's, checked out a couple of other stores, went into the St Francis Hotel, checked out Union Square and we were back home by noon. Very efficient and very festive.
I have to say that the St Francis hotel is fantastic and beautiful, but difficult to navigate with a wheelchair. The front door is not accessible and you have to enter all the way around in the back. It's legal, but not very welcoming. In addition, the glass elevators in the St. Francis are really off limits to interlopers like us. You have to show a room key to access them. I can't really object to that, it is for the safety of the guests but Maggie missed that opportunity. It's almost like the hotels are for the guests or something.
We did experience a "first" while in Macy's. I was taking this picture of Maggie near the nutcracker. A dad was keeping his two little girls out of the shot and it was clear they were anxious to check out the nutcracker. I hurried the picture so we wouldn't hog the spot. As we finished I said, "it's all yours." One of the girls,who looked about 4 years old. was telling us something about what they were going to do. Though we couldn't quite hear/understand her Steve and I both said something like, "that sounds great, have a good time." She frowned and said more clearly "I want a turn getting a picture in the chair that moves".
Oh.
I grinned as it dawned on me. She wanted to get her picture taken while sitting in Maggie's chair. We are used to kids staring at Maggie. The wheelchair, the computer, the tray, her trach etc. It's a lot for a kid to take in. This was the first time, though, that we ever experienced a kid wanting to use it.
I just said, "Oh I'm sorry honey, she can't get out of the chair it goes with her." She was fine hearing "no." I smiled at her dad, but he did not speak any English and I'm not sure he realized what had gone on. Maggie was also oblivious.
We left. Steve and I were chuckling to ourselves and feeling a little of the magic of the Season. .
There are many people who enjoy shopping. I am not one of them. If there is something I need to buy, I will happily go to the appropriate store and buy it, but I am not interested in wandering around in a shopping mall for entertainment. My daughter, on the other hand, would like to do nothing else.
Every weekend I get, "Mom, I want to go to the mall." or "Mall, please." This generally starts around 7:00AM and doesn't let up until we go. For the first few hours I say, "Right, I know, But we have to wait for it to OPEN." That cracks her up. This past Saturday was no exception.
I decided early that I could not bear another aimless trip to Stonestown, the mall closest to us. I told her, "You want to go to a mall, I'll take you to a huge one with lots of stuff to see." We headed downtown to Bloomingdales in the Westfield Mall which is right next door and connected to the San Francisco Centre Mall. It is heaven for a mall rat like Maggie.
The big parking lot is behind these malls and you can enter from Mission Street. I will say the wheelchair entrance is about as circuitous as possible. You have to go up to the 5th floor theater level and walk through the cavernous theater lobby and then go down a separate elevator to the 4th floor get to the mall. It's accessible, but a complete pain.
Once you arrive, though you are treated to a view of the dome from the old Emporium Store. I'm so glad they saved this. It's stunning and brings back such fun memories of Downtown SF of yesteryear. (Perhaps this is the proverbial glass ceiling.)
You really cannot help but smile when you see it, whether you remember the old Emporium or not. It is just so beautiful and the area is completely filled with light. Maggie didn't react at all, at first, because her chair is designed to keep her head facing forward. She was looking at all the people, oblivious to what was above her. Steve tilted back her chair and she reacted immediately. It was great to see her appreciate the beauty.
We wandered over to the San Francisco Center with it's fabulous curved escalators. Maggie could not go on those in her chair, of course, but she thought it was pretty funny when I went up and kept waving to her. She waved back with all her might.
This is taken from the top of the escalator,. I got on right behind them and rode up
curving around in a half circle which left me right where this picture is taken.
We didn't buy anything on our shopping trip. This was just to give Maggie another experience and prevent me from going out of my mind. . I'm not sure it was a good idea, though. This may now be the expectation when she says she want to hit the Mall.
I was shopping in Target the other day loading up on all those household essentials. Somehow I'll bet my household essential are different than those of other households.
As I was passing the women's sports apparel I noted some sports bras in bright colors. These are the ones that you just pull on over your head - no clasp. I bought a couple for Maggie. While she may not be athletic, these are perfect for her. Trying to fasten a clasp on her back would be impossible.
The next section over was the baby stuff and I bought a case of diaper wipes because 1) we go through hundreds of them and 2) they are a lot cheaper if purchased in bulk.
As I put my purchases up on the conveyor belt I had to wonder how many other moms are buying bras and diaper wipes at the same time for the same person.
Maggie and I had a relaxed and fun day yesterday. She kept saying "Mom I go to mall" which is a pretty clear indication that this teenager needed to SHOP! We went to Stonestown Mall because parking is easy and there are a ton of handicapped spaces. We just cruised around enjoying the ambiance, not spending any money.
I was getting Maggie situated to take a picture when I heard a friendly voice behind me say , "I thought I smelled something rotten." Maggie and I both grinned. That could only mean one person: Sheila! She was Maggie's teacher for Kindergarten to 2d grade - which was actually 4 years because Maggie did her kindergarten year twice. Sheila was the first to call Maggie out on her behavior. I sent Maggie off to school as a completely spoiled 5 year old, sheila would say "Something smells ROTTEN in here, It must be SPOILED!" Maggie would laugh her head off. Still does.
Maggie responded very well to Sheila and all the classroom staff. When she was flailing her arms all around they would instruct her to get "classroom ready" and Maggie would still herself. It was amazing. I still use that term once in a while, but I think you have to have a teacher voice to really make it work. Mom voices are scary, but teacher voices mean business! All of Sheilas students are non verbal, or have very limited language skills. She swore if they learned to talk their first words would be "Evil Sheila". Of course the kids adored her. in fact, as we were chatting another mom approached with her son in an adapted stroller. He is a current student of Sheila's. Nice to know things continue.
I wish I thought to get a picture of Maggie and Sheila, but the conversation was too animated to stop and click a photo. Here's an old one from elementary schol graduation with the whole staff from both the K-2 and 3-5 classes. Sheila is right behind Maggie head and Emily, the 3-5 teacher is sitting at Maggie's left.
I did remember to get one of Maggie the mall rat a bit later. (If you are on my facebook you already saw this)
Later on she listened to Dad read Harry Potter. She does enjoy the various voices he used. Especially Hagrid and Dumbledore. Not sure which one is happening here, but Maggie seems pretty happy
A drippy foggy morning here in the City by the Bay. It was really wet when Maggie left on the bus this morning for day one of her last four days of summer school. I put on a hooded sweatshirt to go out and meet the bus and I haven't take it off yet.
Our weekend as busy. We had friends over on Saturday. We went to the Academy of sciences, but Maggie's suction machine was acting wonky so she and I came home pretty quickly. We stopped at Safeway to buy stuff to make lunch when they all returned to our house. I try not to buy too much when I'm walking, especially with Maggie because it is very difficult to get the groceries home. I find if I use one of those hand baskets in the store I won't buy too much. If I can't carry the hand basket I won't be able to carry the groceries the four blocks home. It worked out, but the items I bought were rather bulky and steering the chair home with that big bag of groceries was a little difficult. I kept stopping and switching arms trying to find a comfortable way to carry the groceries and push Maggie's chair in a straight line. Finally I just put Maggie to work and balanced the groceries on the back of her handle.
Worked like a charm. And she was pretty happy about it.
While I do wish Maggie could speak I am constantly blown away by her ever increasing ability to communicate with her dynavox. The progress on this device seems to come in steep inclines followed by a plateau and then another steep incline. Maggie is definitely on an incline now. She is using her device for more and more things. She stops and thinks about what she is going to say and how to get the message across. That is something I have yet to learn. Here are a couple of examples.
One past weekend, Maggie wanted to go out. Our plan was to head to the park, but it was 7AM and I intended to drink some coffee, read the paper and get dressed first. She kept saying “mom I go to park” and I would absent-mindedly respond, Yes Maggie after a while. She kept it up. Finally, I started listing off the things that had to happen before we could go. Well, Maggie I need to feed you and change you and then I need to get dressed.
There was a pause as she formulated her plan. Then she started. “Mom, I am hungry.” No response from me. “Mom I am hungry, mom water please.” I looked at her and she gave me a wicked grin. Ok, I know you are starving to death. As I am feeding her she says, “Mom, I am wet.” (meaning diaper). I said, now you are just lying, but I will change you as soon as I am done feeding you. She laughed and said, “Mom. Pants.” I laughed and said, “Right. I will get dressed too.” She knew what had to happen to get what she wanted and just started listing them off. We were in the park by 8AM that day.
She has developed other tricks too. The other day I turned on the television to watch something. Generally she just says, “I don’t like TV” in an attempt to get us to turn it off. This time she said something new. She does not have the verb “watch” on her dynavox (or if she does, neither she nor I know where it is). She thought for a moment and then said, “wash TV.” She found a word that SOUNDS like watch to convey her message. That is really amazing. I looked at her and said YOU are a SMARTY MARTY. She just grinned and said, “Mom I am smart.”
She is also able to let me know that there are things a teenage girl just has to do. This past Saturday she was not interested in the park at all. She told us on Friday night, “I want to go to mall tomorrow.” I was impressed that she found the word mall, because I had not heard that before. Maggie made sure the message was not lost in the new vocabulary though. As soon as I hooked up her dynavox on Saturday morning she said, “Mom I go to Mall” and then quickly added a please to the end. I had to take a picture.
I laughed and said and how are you going to get there. She pointed to me. Then she thought about it for a minute. She smiled and went to work on her talker and said “mom you are pretty.” We both started laughing. She has definitely learned how to use language to get what she wants, and in this case, flattery will get her everywhere. At least as far as the mall.
Mom Camp, week one was a study in retail levels, something every girl should learn. We started at the top and moved down. We had Tuesday at Tiffany's, did Wednesday at Macy's and Thursday at TJ Maxx. I really should have done things in reverse order to give Maggie a sense of accomplishment.
I'm sure this will shock you, but Tiffany's is not a normal stop for me. I've only been in there a couple of times in my life. Maggie and I popped into Tiffany's out of the rain looking quite bedraggled and unlike the typical Tiffany's customer. I left my necklace - a gift from Steve for our 25th anniversary - to be lengthened and off we went. I can't believe I didn't take Maggie's picture amongst the finery. We cruised around Union Square after that and I thought of going back for a picture, but it started to rain (again) and we were three blocks from the car. We opted for a bee line to the car instead.
We also manage to squeeze in a a trip to the pulmonologist, which is always exciting and ended the week with a ladies lunch. Maggie went to lunch with me, my sisters and my mom to celebrate Grandmas' birthday. That was fun. We went to the Spinnaker in Sausalito. The dining room, which sits over the bay, is completely made of glass. It's like a reverse aquarium, the people are sitting inside the glass watching the sailboats. Maggie thought that was great, but not as sun as pulling off her oxygen tubing about thirty times during lunch (I think she's feeling better.)
Before we went to lunch, thought we did Maggie's favorite thing. She got her summer haircut. I think she likes it.
Now I have to get cracking on activities for this week. There is always golden Gate Park, just steps from our house, but it has to STOP RAINING first. Otherwise, we'll have to do Saks 5th Ave, Nordstom and Marshalls this week.
To match the fairy tale that is her life (sarcasm), Maggie emulates Cinderella. NO, we don't make her scrub the floors or lock her in a tower and she isn't headed to the ball to meet her handsome prince. In fact, she's takes after Cinderella in only one way - she loses a single shoe all the time. Because of her dystonia and cerebral palsy, Maggie moves constantly. Her body is in motion somewhere even when she's all strapped into her chair. A lot of times she is moving her legs and feet. Her feet are very small. She is 17 years old and still in children's sizes. She wears a child's size 12 or 13 which is generally appropriate for a child about 5 or 6 years old. Her feet are little and skinny. Between the movement and the teeny feet, it is difficult to find shoes that will stay on her feet. Most styles are right out. Invariably when we go for a walk, someone tells us she's dropped a shoe. After a couple of tries putting it on again, I will give up and stick it in my purse. We have been lucky that we retrieve so many. With this new problem with her wheelchair footpad (see yesterdays post), her feet are out of sight and no one sees it drop. She lost one shoe last week while on an outing from school. They retraced their steps, but never found it. Then I lost another shoe that I tossed in the car after she dropped it. Hope springs eternal that one will still show up. Saturday morning I took Maggie to buy some new shoes. She thought that was the greatest time ever. We've done it before, but she never reacted one way or the other. That has now changed. Shoe shopping is the bomb! I let her choose between a glittery/sparkly pair of high tops and some slip ons with peace signs. My girl went for the bling, of course. We also bought the white athletic shoes from yesterdays post. When we returned to Steve, she quickly said "Dad look new shoes." She repeated it over and over again until she felt his praise was sufficient. Sunday morning came and Maggie and I were heading out to run some errands. I said, "Mag, where do you want to go today." She didn't hesitate at all. She just started making a sentence "Mom, shoe shopping please." I had to nix that idea and quick. I may have created a monster. Maggie may have feet the size of a small child, but when it comes to shopping, she definitely acts like a 17 year old.
