Unlike a debutante being introduced to society, Maggie turned 18 this year and has been introduced to "the system." She had to meet with social security, she was called for jury service and even the military was trying to entice her. Maggie was nonplussed by all of it.
She did, however, enjoy her trip to court when we had to get her conservatorship. Though she gave him the stink eye at the time, Maggie was quite impressed with the whole courtroom thing and the judge who is not only in charge of the courtroom, but does the job sitting down. That's right in her wheelhouse.
Not only that, our friend Colm was here from Ireland a couple of months ago. He had recently been appointed to the High Court of Ireland and Maggie was enthralled at the idea that judges and barristers got to wear wigs. Accessories!
That made the costume choice relatively easy. Here come da judge! Sitting at her bench complete with hand carved gavel (attached to the "bench" with a string to avoid mishaps and lawsuits) and homemade scales of justice and of course the appropriate wig, I introduce you to the honorable Mary Margaret McDonald.
Tuesday, October 30, 2012
Anticipation mounts. I took this picture off of Maggie's dynavox. This is Maggie's sentence to Tim on Halloween Eve
No baseball, No Ann Coulter. There are more important things.
Tomorrow is Halloween!! And Maggie loves Halloween!
Maggie's costume is set, but we cannot reveal it until tomorrow. As I do every year, I will give a recap of costumes past to whet your appetite. She missed 2010 because she was in the hospital, but here are the rest of them since 2004 when we decided to get creative.
2004 Hell on Wheels
2005 Leprechaun, complete with rainbow and pot of gold
I know there are
those who believe we should be quiet and hope Ann Coulter goes away. I know there are those who say we should rise
above it, that we should not lower ourselves to her level. I know there
are those that believe giving her the attention she craves is playing into her
hand. I know also that there are those saying to stop talking about it because this
detracts from the “real issues.”
I know all of this. However, I wonder, do they know ME?
Seems doubtful; if they did, they would know that I cannot and will not be
quiet. I'm mad as hell and I'm not going to take it anymore.
First, this has nothing to do with the election. In 11 days, one of two men will be elected
President of the United States. Then the election will be over. But in 12, 13,
15 and 100 days my daughter will still be disabled and mean spirited people
will still mock her, some because Ann Coulter says it’s ok. This is as real an
issue as there can be for my daughter and her peers.
I have the same right
to freedom of speech that Ann Coulter has and, as a bonus, I happen to have manners
and decency as well. I think that gives me a slight edge and I plan to continue
to speak out against the use of this word and defend a group of people who are
not always able to defend themselves. That
is precisely the reason she picks on this particular group, she is relying on
the fact that they are powerless to rise up against her.
She is wrong. The
best response came from a John Franklin Stephens, a man with intellectual
disabilities in the form of an open letter to Ms. Coulter. To my knowledge, she has not responded directly
to this letter. In addition, those
disabled individuals who are not as articulate or able as Mr. Stephens have
brothers and sisters, mothers and father, grandparents and cousins, nieces and nephews, teachers
and classmates and friends and neighbors who will stand up and speak for them.
I am proud to count myself among them.
In the days since her infamous tweet, wherein she referred to the President of the United States as a "retard," Ann Coulter has
repeatedly defended her use of this word. Part of her rationale: she did not
use it to describe a person with “mental challenges’ (her words) rather she
used it in what she considers the proper way, which is to describe a “loser.” She
puts this word in the same category as moron or imbecile or other such words
that once had a clinical definition.
I will not stand by and allow Ann Coulter- of all people - to redefine when it is
ok to use the “R” word just so she can sell more books to other mean spirited
people who want to read what she has to say. Perhaps in 100 years this word
will be so archaic as to be acceptable, but it is not today. This word is hurtful and offensive and
everyone knows it. Even Ann Coulter knows it but she is trying to change the
conversation to make this into something other than her purposeful attempt to
insult the Office of the President of the United States and the most vulnerable
group of citizens.
She talks about
political correctness and whining. She agrees the “N” word is not okay but
dismisses any similarity to that argument. She also argues that if we keep challenging
words based on “political correctness” there will be a huge book of words we
cannot use. I have news for her, that book already exists under several names, “Good
Citizenship”,” Common Decency” or “How to get ahead using Good Manners.” I doubt she has read any of them. Further, no one is telling her she CANNOT use
it, but we can object to it and perhaps she will tire of the objections and
change her vocabulary or begin to realize how very very moronic she sounds.
Finally, to Ms. Coulter’s assertions that people representing
the disabled community are simply a bunch of whining liberals I will say this: Disability is truly equal opportunity. It knows
no political, racial, religious or any other limitations. This is not a
political issue. This is not an issue of conservative or liberal. I do not
believe for one minute that Ann Coulter speaks for my many decent friends who
happen to have a different political outlook than I do.
If you want to pick sides, identify them correctly. This is not conservative vs. liberal; this is decency
and kindness vs.callousness and greed.
Take action. Write to
your newspapers and favorite websites. Tell others to do the same. Rise up and
be heard and tell Ann Coulter to sit down and shut up. Tell the televisions shows
that pay her that you will not watch their shows if she is a part of it and
tell their sponsors you will not buy their products. Tell others to do the same. If she is impervious to
appeals to her decency, perhaps we can hurt her where she will feel it – in the
wallet.
Let her know that this vulnerable group of Americans and the people that love them are mad as hell and they won’t take it any more.
If you need some courage, watch Peter Finch in Network.
I live in many worlds. This week we get to focus on the baseball world, which is one of my favorite things. Last night baseball joined up with raising awareness about health issues and specifically targeted UCSF Benioff Children's Hospital, another world we inhabit. Worlds collided in a great way.
'I know Maggie has a couple of fans in Michigan, but I have to tell you something. We LOVED Game 1. I post of picture of Maggie in her panda hat and the Panda hits not 1, not 2, but THREE home runs! She is officially a lucky charm now.
I thought one of the most moving parts of the game was everyone hold up signs for Stand Up To Cancer (SU2C) Everyone in the stadium, the umpires, players, coaches and fans were invited to stand up and hold up a card bearing the name of someone with cancer.
It was a great moment and demonstrated how many people are touched by cancer. The cards had the names of different people or words like "my dad", which was touching. As they panned through the crowd I saw one guy holding up a sign that honored "all my friends at UCSF Benioff Children's Hospital." That made me smile because I see those kids all the time and they definitely deserve recognition and honor.
Major League Baseball (MLB) is really behind this cause. The banner waving was great and drew a lot of attention, but they do more than that. According to the clip below, MLB has donated millions of dollars to fight cancer and I know for a fact that the Giants players are very involved with the kids at UCSF. I have seen them in the hallways and see the GIANT smiles on the kids after the visits.
The current Giants player have been a little tied up the past few weeks, so the Giants sent some of their former stars up to the hospital yesterday to visit the kids. Vida Blue and Bill Laskey, and of course the Giants mascot Lou Seal were a big hit with the kids. As Kim Scurr says in the video , these visits and other things that help normalize the world for a child in the hospital are as important as the medical treatments the hospital provides.
Today we leave post about bad manners, international incidents, broken wheelchairs, and strange comments from strangers behind. Those will undoubtedly be back, But today there is something bigger.
The Giants are in the World Series and today is Game 1!!
The world stands still for the next week or so. Everything revolves around game time. All focus in this house is on baseball. Especially for Maggie, who left for school this morning decked out and ready.
(For the uninitiated, the Panda hat is for Pablo Sandoval, the Giants 3rd baseman, known as The Panda)
Maggie loves that we are all excited and focused and cheers right along with us during the games. It is the only time she doesn't complain about the TV being on. She doesn't really watch it, per se, but she watches us watch it, and that's good enough for her. She waits for the high fives or for the occasional expletive. Those really make her laugh.
Baseball is famous for the superstitions that players and fans practice. Some players won't shave or wash their socks or whatever if they think it's lucky. Fans will sit in the same seat, eat the same food and hang with the same friends for the same reason. Maggie is now part of it. During the 2010 playoffs and series, I started posting this picture of Maggie on facebook.
My cousin Dennis was the first to note the Giants successful days correlated with the days the picture was posted. He insisted I post it every day, so I did and the Giants won the World Series in 2010. I did it off and on during the playoffs this year when the Giants had their backs against the wall in the Divisional series stopped when the championship series started. Then the Giants went down 3 games to 1 in the Pennant. and couple of different friends/fans asked me to post Maggie's picture with the orange hair. So I did for the next three games and the Giants won three straight and now head to the World Series.
I assure you the picture will be posted on my facebook page about an hour or so before game time for every single world series game. Hopefully that won't be too often.
It is two weeks until the National Election. The race is
close and the insults are flying from both sides of the aisle. It is tiresome.
Apparently there are STILL undecided voters out there who can sway this
election, but how anyone could be undecided at this point is mind boggling to
me. There is a clear choice because the candidates and their visions for this
country are very distinct from one another. Pick somebody, it does not matter who you vote for, as long as
you are informed and vote.
.
Like many voters, I know who I’m voting for and really don’t
want to hear anything more from ANYBODY because it has become tiresome and
mean. No one is going to change my mind
now and I doubt there are others whose position will shift based on the
negative campaigning. Only the meanest among us are still listening to all this nonsense and
that’s simply to give their meanness
more fuel. I know I’m old, but I really don’t remember things being so mean spirited
when I was a kid.
There are times when the politics is simply an outlet for
meanness; the speaker is just a mean person and uses politics as a screen to hurl
invectives. I believe Ann Coulter falls
into that category. She is known as a “conservative
pundit.” While I agree that she is indeed conservative, I do not believe that
she speaks for anyone but mean people when she repeatedly uses the word “retard”
to describe people for whom she has no respect. She has used it to refer to people who support
President Obama and last night used it on twitter to describe the President himself. How can there be such an utter disregard for
decency by someone in a position like hers? She is unrepentant, however, tweeting later
that “only people too retarded to get it will care.”
Coulter does not speak or tweet for anyone but herself and other mean
spirited people who lack grace and decorum . Decent minded conservatives are distancing themselves from her and calling her out on the remark. Conservative
Michele Malkin from the social media
website Twitchy responded “what a shallow stupid thing to say Ann.” I cannot imagine this is something Mitt Romney’s people would endorse. I can only hope they
condemn it.
Ann Coulter is not the first famous person, or even the
first partisan person to use this word. Rahm Emanuel did so when he was
President Obama’s chief of Staff. (I wrote about that too. See this post or any of the other nine posts under the tab "Language Cop"). Sarah Palin, the
mother of a child with intellectual disabilities took great offense and
demanded that Obama fire Emanuel. I hope Sarah Palin is equally outraged now that it is coming from a conservative. (She was
strangely quiet when the word was used by a County Republican party chief in
Pennsylvania, but that was not a national stage.) I hope too that people are outraged that
someone could show such utter disregard for the office of the President of the
United States, regardless of their politics.
I have waxed poetic on this issue many times in the past. The
use of this word is mind-boggling to me. How can people call a sweater “retarded”
or refer to another person as “retarded” as a synonym for stupid. Anyone who
uses that word reveals more about themselves than anything else. They reveal
their complete lack of intellect, compassion and sensitivity. There is a
concerted effort to rid the world of this word. If you are so inclined, please
go to this website - www.r-word.org -.and take the pledge not to use it
And then take action. When you hear someone use it, educate
them. Tell them it is insensitive. Tell them it is not a synonym for “stupid”
or “dumb” or anything of the like. Most people do not even realize they say it
and as soon as they learn that they are offending people they stop. Because
most people are nice and want to do the right thing.
Before you tell me about Freedom of Speech, believe me I
know. I am not questioning her RIGHT to say it or anyone else’s right either. I
am delighted she has that right just as I have the right to say this. She has
the right to disagree with me and I with her. That is the basis of what makes
this country work. But, we all know
freedom isn’t free. There is a price for offending people with your words. There are consequences for saying certain things. Don’t believe me? ask Don Imus, the former
shock jock who disappeared from the airwaves after an especially offensive
comment in 2007. No one denied his freedom of speech – he just lost his
audience. He was completely off the air for awhile. I believe he's back now, but he's irrelevant.
My fervent hope is that the good people will stand up to the
bullies, that Ann Coulter and anyone else who thinks it’s ok and amusing to use
such a hurtful term will lose their audience. If I cannot get to her, I will get to her
audience. Do not listen to her. Do not tune in shows that give her or anyone
else who uses that term a say. Make them pay the price, make them irrelevant.
Because if a tree falls in the forest and there’s no one
there to hear it, it does not make a sound.
And in this case silence really would be golden.
________________________
Addendum 10/24- This letter/response to Ann Coulter was written by a man with Down Syndrome. Eloquence and grace exudes from every word. If you haven't read it, please click below. It would indeed be a badge of honor to be compared to you, Mr. Stephens.
First real rain of the season started lat night and continued through the night. Rain on the windows and roof is such a wonderful sound to hear when you are snuggled up in bed. But then you have to get up and get Maggie to the bus in the elevator that is open to the elements.
The elevator is slow - it takes about 90 seconds to go from the deck outside Maggie's room down to the backyard. Most days it's a pleasant minute and a half that Maggie and I are cut off from the world. We joke and laugh and have a great time during our ride to the ground level. We really don't notice how slow the lift is going because we have so much fun. When it's pouring down rain, the focus is centered on the very s l o w ride down. 90 seconds in one place during a downpour is a very very long time indeed.
I did grab an umbrella to shield us from the worst of it but it is difficult to hold the umbrella and hold the button to make the elevator go at one time. Also I have to keep shifting the umbrella to avoid getting it caught on the shaft as we descend. And there is no way to cover everything, so Maggie had a dry head and wet knees. We made it down in one piece, but Maggie was less than amused.
It didn't help that I didn't get a chance to feed her. Her nighttime feeds are turned off around 6 and I always give her a feeding in the morning before she goes to school. My plan was to feed her when we got downstairs but the bus was already there waiting for us. The school nurse promised to feed her as soon as they arrived at school, so she would only be about 30 minutes late.
Now the rain has stopped. It is supposed to shower all day today and with our luck those showers will hit just as she comes home and has to come back up the elevator. But she will survive this indignity with her usual grace and aplomb.
We just need the rain to be gone by game time. The Giants play the Cardinals in Game 7 of the NCLS today and I don't think any of us can tolerate a rain delay.
Maggie will be ready:
(Lest you think I'm neglectful, this picture was not taken this morning. She does not wear shorts when it's raining. This is from a sunny day in September.)
The rats have been racing without us and we need to get back to it.
It is a brand new day, the sun is shining, the Giants are in the NLCS and it is time for me to get back to our regularly scheduled programming. We are dipping one toe into the water of normal life - or what is normal for us.
This morning I told Maggie, "Today is Thursday, do you know what is happening tonight?" She looked at me warily. Last night we had a friend to dinner and she hung out with her nurse, Tuesday night we were at the memorial service until 10PM and saw her for only a moment before she fell asleep. A third night? What could this possibly mean. She was not anxious to hear that something else was going on to disrupt her world. She gave me the stink eye and waited for me to tell her.
I laughed and said, don't leek at me like that. Tonight we are doing NOTHING. It will be you and me and dad (ok, and the nurse). We are staying home and hanging out with YOU. That pleased her to no end. It's not call Maggie World for nothing. She is back in the center of the universe where she belongs. I think she is happy about that. Her eyes almost disappeared because her smile was so big.
As she loaded onto the bus today wearing her shorts and t-shirt on this fantastic October day, she gave ma a wild wave goodbye .Her hand is in motoin here.
Gotta go chase those rats so I can be home when Maggie gets back. We have some catching up to do. .
The following is the video of Steve's talk at The Memorial Service for Ambassador Chris Stevens. It's about 12 minutes long. I am posting this more for me than for anyone else but feel free to watch it if you are interested. He really did a wonderful job.
The service for Ambassador Stevens was lovely. His siblings told stories only siblings would know and set a very sweet tone for the event. That definitely made it easier for Steve. He did a great job with his talk.
We were in the front row along the side, which was great. I took pictures up close and personal.
But I didn't have the vantage point to get the majesty of City Hall. My Niece Colleen Toomey was in the back and took the first one and my brother in law, Pete Degolia, who was also a fraternity brother of the Ambassador, took the second one from the balcony. It was such a beautiful setting and perfectly fitting for Chris.
I was extremely proud of Steve. My son Tim was next to me and said I was completely frozen during Steve's speech but then started asking him inane questions while the Libyan Ambassador to the United States was talking. I think I was relieved that Steve had done so well and could finally relax a bit. Of course Tim was actually trying to LISTEN to the Ambassador, so that wasn't good.
Today is the Memorial Service for our friend Ambassador Chris Stevens. It is open to the public and I'm sure there will be thousands of people there. The service takes place at 4:30 this afternoon in the Rotunda of San Francisco City Hall, which is a perfect place for this ceremony. It is a gorgeous building both formal and open at the same time, very much like Chris.
I know there will be at least four speakers and one of them is my husband Steve. He has been working on his speech for days, trying to get it short enough to fit into the allotted time. It is difficult to capture the essence of a 35 year friendship in a five minute speech. Steve is extremely honored to be asked by Chris' family to speak, but he is understandably nervous about making it through the speech in one piece.
I know WHAT Steve will say, I just don't know HOW he will do it. Forget the number of people present, including various dignitaries, that's nothing; it's the emotion. Despite all the international consequences and the unfortunate attempts at politicizing this tragic event, for us it's personal. Steve lost a very dear friend in the most horrific manner and he is extremely sad. Talking about it is very difficult for him.
Chris Stevens was my friend too, if only through my connection to Steve. He was a wonderful, wonderful man who was thoughtful and kind, friendly and easy going, brilliant and down to earth. He came here for dinner whenever he was in the Bay Area and we always spent hours eating, drinking and talking - catching up on the months that had passed since our last dinner.
I've read so many things about Chris since the attack on the Consulate in Benghazi 36 days ago. All of what I read was positive and absolutely none of it surprised me. Of all the quips and stories and memories shared, one thing really stands out. A woman who knew him (and I don't remember the connection now) said, "whenever we spoke, about 90% of the conversation was about me."
I nodded as I read that because it was true for me too. Chris would ask about Maggie and how the school system worked, marveled at her ability to use her communication device and her ability to overcome her medical challenges. He'd ask about how it was to manage her care and whether I missed practicing law. He asked about the boys and their lives. He asked about Steve's work and friends we had in common. There was reminiscing and laughing at the same old jokes just as all of us do with old friends.
We would hear about his family, last year of his sister's wedding and his brother's sweet little girls. We spoke of the law and law school though it was ancient history for all of us. We would talk politics in a very general way, never anything revealing in any way, but I never felt that he was hiding anything either. He would tell us about his current post, but mostly about the way they lived, never anything about the danger or the diplomacy itself. I never really realized that until after he died because it was done so effortlessly. He was a natural diplomat and when you finished an evening with Chris, you felt like all was right in the world, He made us feel good about ourselves.
I knew more cities in the Middle East than most people because Chris had lived in nearly all of them. (I wait for a "capitals of the Middle East" category on Jeopardy.) Chis loved the Middle East and loved the people. His stories were about cab drivers and people in cafes, not Presidents and politicians.
Of course we knew his work was dangerous - or at least that it took place in a dangerous part of the world, but that was never really discussed. It was just understood. We were naive and happy to remain so. I would always tell him to be careful because I knew the possibilities, but I never in a million years really believed anything would happen to him. It just couldn't.
But it did.
And now he's gone and we have to say a formal goodbye today, which will be a difficult thing to do. I am so proud that my husband is able to get up and tell the world about his friend Chris Stevens. Because there is much to tell. And much to miss.
Maggie communicates with her Dynavox Maestro, a communication device that she operates using a two switch system. The two switches work sort of like a computer mouse. She moves through the screen with one switch and when she gets where she wants she uses the other switch to select. It's quite amazing to watch her, she can fly through the pages when she really gets going.
Maggie's abilities on the Dynavox are the result of years of hard work by numerous therapists and teachers. Professionals recognized her intellect and abilities early and started the building blocks long before I understood where it was all heading. Maggie is smart and motivated to communicate, and she had excellent instruction and support. All of that is necessary.
In addition we need the practical pieces of the puzzle or she cannot use the device. In order for Maggie to work her magic, she needs the dynavox itself to be charged and in good working order, the tray with the two switches on it so she can navigate through the pages and the pole which attaches to the chair and mounts to the dynavox. . With all the pieces she can take her dynavox anywhere and have her say. It should look like this:
When she arrived home from school on Friday she did not have the pole. Arrrgh. We were looking at an entire weekend of little or no communication which is very frustrating for her and by extension, for all of us. I will say, though, that of the three needed components, forgetting the pole is the easiest to work around. Without the device, forget it. Without the tray, she can't maneuver around the device, but we can and did MacGyver something for the pole.
We put Maggie at the dining room table and put the dynavox there. It's not perfect because the talker cannot come with her, but ti's better than nothing. We have to prop up the dynavox so she can see it. The design of the dynavox is frustratingly flawed, though, as it does not stand up by itself. (The "stand" is part of the case, but you can't use the case if there is a mount on the device for a wheelchair - it's like they forgot the users are sitting in wheelchairs). First I balanced the dynavox against a pillow. Not perfect. Not terribly steady, but serviceable. Of course the angle" wasn't right and she couldn't really see what she was doing. Maggie depends mostly on sound because of her vision, but she does look at the screen and it was bugging her that she couldn't see it right..
Steve came home and messed with it and when I looked the dynavox was sitting perfectly upright and steady. Maggie's face looked like she wasn't buying it.
Thank GOD for Giant Wine bottles! I believe that is called a jeroboam and holds (or held) the equivalent of four bottles of wine. And one dynavox.
Better, but she was still stuck at the dining room table. She couldn't use her talker in the bedroom or in the front room or anywhere else.
Steve disappeared into the basement - his workshop, his sanctuary. He can build just about anything and is at work on Maggie's Halloween get up now. After a while I asked what he was doing and he said I'm making a new pole for Maggie. I wondered what it would be. The possibilities were endless. Steve saves every thing in that shop - every scrap of wood, old toy wheels, even broomsticks, because they make good dowels. Forget the dowels, it turns out broomsticks also make excellent poles to hold a dynavox. He made it the right size to slip into the mount on the side of the wheelchair and used a screw to hand the dynavox from the broomstick. Maggie could now communicate on the move - but we had to move very slowly because it was held up by only one screw and it is an expensive thing to drop. (We didn't drop it).
Steve (visible in the background wearing his Giants hat) feels justified in his broomstick hoarding now. However, one broomstick to the rescue every 26+ years does not justify the pile we have down there. I admire his ingenuity, but it is my duty to keep up the nagging.
Maggie might have something else to say about that, though.
Friday. Garbage Day. Time to haul (roll) all three giant bins out to the curb for pickup. Black for garbage, blue for recycle and green for compost. Two different trucks come, the first for compost and the second for both garbage and recycling. The compost guy comes first and if I'm still in bed when they come down the street at around 6:30 AM, I know I am late.
The city/waste company provides everyone with the bins. They are decent size, easily large enough to collect a normal family's waste for a week, especially if they are separating it like they should. We do, religiously. We have three separate receptacles in the kitchen and separate it as we go making it simple to put things in the right bins. Apparently we are NOT a normal family, because, we had to order the larger size bins - and pay a lot for them - because we have so much waste. Even with the larger bins, we always have more waste than anyone else on the block. It's unbelievable.
This is particularly noticeable with my next door neighbors, who, like us, have four people in their house. They are very good about recycling and using green products, as are we. Perhaps, then, someone could explain why their bins look like this
You will note that they too have a larger recycle bin, but a regular sized garbage bin, while we have the larger size of BOTH and still our looks like THIS.
I get the black one and I blame a certain young woman who resides in this house. Maggie produces at least 3/4 of the garbage in this family and it is going straight into landfill. There are probably 50 diapers every week as well as all the other medical waste.
I cannot understand the difference in recycling, though. There is probably more of that because of Maggie too, though I admit we are one of the last houses in America to still get a newspaper.
We have Giants fever here. It's Orange October and we are Giants fans. I just spent the entire day watching a baseball game while (sort of) doing various paperwork for Maggie. It was quite a roller coaster ride. Tim was home today and we were watching the game together. In fact he refused to leave for his class until the game was over, so he was 30 minutes late for a 3 hour class. But he left happy.
It was nerve wracking. Game could have gone either way for most of the game and especially at the end. Maggie's bus arrived in the bottom of the 9th with two men on and the tying run at the plate. I ran down to get her and get the report from the school nurse as quickly as I could because I wanted to see what happened.
Maggie had her school pictures with her. When I saw the orange shirt in the pictures, I figured it was a good omen for the Giants. And indeed about 30 seconds after she arrived upstairs, the game ended and the Giants won the Divisional Series and now proceed to the National league championships.
In yesterdays post I mentioned that Maggie snagged a bag of bagels while shopping at Safeway with Steve and his friend Chris the other day. Steve went back and paid for them, of course. When they arrived home, we talked about all the other things we have found in Maggie's chair over the years. There have been hairbrushes, spoons, hair clips by the dozens, toys and anything else that was in reach.The bagels were in plain sight on the tray; but generally she grabs things, can't really hold onto them and they slip down into the side of her lap.
The best many years ago when we went to buy Eddie some new eye glasses. Thanks to the genes he inherited from me, Eddie has worn glasses since kindergarten. He would need a new pair every year or so and we would go pick them out and order them. When he was in about the third grade we went to try a new place on West Portal. I walked in with Eddie and Tim and had Maggie in her tiny stroller/wheelchair. The kids were probably 8, 6 and 2. The woman was waiting on someone else and made it clear from the moment we walked in that she did not like kids.
At all.
And especially not boys.
I ignored her. The boys definitely had their moments of being rambunctious, but this particular day was not one of them. They were calm and well behaved. As we waited, Eddie started trying on different pairs of glasses and carefully returning the ones he didn't like. The woman looked up and snapped, "They really shouldn't touch those." I responded, well, we're here to get him new glasses, so he has to try them on. (I pretended not to notice that Tim was also trying them on.) She went back to her customer and after about a minute looked up and said something else snotty. That was enough. If I'm going to plop down money for a product, I think someone should at least be nice to us. I said, "Clearly you do not want our business, we will go somewhere else." She started to retract, but it was too late. The four of us filed out of the store in a very dignified manner. Haughty might be the best word for it.
As we headed back to the car, the boys and I were laughing at what a grump she was. Even Eddie said, And we were being GOOD! she should see us when we're BAD. I opened the doors and the boys hopped in. Maggie was so little then that she sat in the car seat and we folded her wheelchair in the back. I opened Maggies' door, readied the car seat, undid all her straps, lifted her into the car and strapped her into the car seat. I turned to fold up the wheelchair and saw them.
A lovely set of eyeglass frames sitting on the seat.
I winced. While the grumpy lady was yelling at my perfectly behaved sons, my tiny disabled daughter was stealing her blind. I picked them up and showed the boys and their eyes bulged in surprise. I though of our dignified and haughty exit and winced again, knowing we had to return these. Being the chicken that I am, I had one of the boys do it. (I thought it was Tim, but he doesn't remember.) Either Eddie or Tim took the frames, ran the two doors up to the store where the grumpy lady was still waiting on her customer, laid the frames on the counter and said, "My sister took these. Sorry." And then ran back to the car. We laughed our heads off.
We decided to go glasses shopping another day and we all went for ice cream.
Maggie didn't get any ice cream*, but she had the total respect of her brothers, that's for sure.
*no reward for stealing, but she also happens to be deathly allergic to dairy and can't eat by mouth anyway, so not sure it would have been a reward.
Edit - I just realized I wrote this story already about a year ago. Oh well, it's worth a re-tell.
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
First we had to do the social security stuff which was an adventure. then we had to get the consesrvatorship which was a long drawn out adventure. Two weeks ago Maggie received a jury summons, which we took care of. And yesterday a new wrinkle. Maggie received a call from a military recruiter.
The phone call went as follows:
Male voice: I would like to speak to Mary Donald, please.
me:(pause): who's calling?
Male Voice: this is Joe Blow I am the military recruiter assigned to Mission High school
me (pause) First of all it's Mary MCDonald, but Listen, Sir. She's not going to...
Male Voice: (very polite but firm) Ma'am, she is over 18 isn't that right? Can I speak to her, please
Me: (no pause) No you really cannot talk to her, but it's not what you think. She won't be able to talk to you. She's non verbal and a quadriplegic.
Male Voice: I apologize ma'am, we will take her name off the list. (faint sound of the delete button in the background)
I told Steve and he noted the military provides free medical care. Tempting, but NO.
In all honesty having Maggie as a secret weapon in our military would be unfair to our enemies. .
After repeated attempts to repair the headrest on Maggie's wheelchair, we finally gave up and ordered a new one. That was in the early part of June. It arrived just before school started at the end of August. It broke the next day. We did a patch job until the guy could get to us a day or so later. He fixed it up and it worked for a week or so. We called again. We tightened the screws every 20 minutes or so. This went on for several days but we knew it was a matter of time. I called the place three times on September 19 leaving messages telling them it was going to break off. No one called back. It broke completely the next day and Maggie was trapped at school because she could not be transported safely with a bare pole sticking up where he head should go. The bus wouldn't take her and I had no way to transport her in the car. I called again. They agreed to come out the next day. I panicked thinking Maggie would have to sleep at Mission High. I went to school and retrieved the broken headrest which I took to a hardware store where a kind clerk took pity on me and helped me find a set up that would hold it together so we could get her home. I brought it back to school and Mr. David, one of the aides in Maggie's class, helped me put it back together. The wheelchair people came September 21 and worked on the chair for a long time. just the headrest. The other parts are not as important (though we've been waiting for those since June). He did some magic and came up with a new set up telling me that if this didn't work he had nothing else to offer. I looked at it and knew immediately that it would only last a short while. Today, 11 days post repair, it is in tatters and I've already tightened it twice this morning. It will hold maybe another few days. They are coming back today with the manufacturer of the headrest. It is October 2 and we've been messing with this for five months. .Maggie is very strong and throws her head back extending her body and putting a lot of force on the mechanism. Naturally, they think it's all her fault. But she is not the incredible hulk, she weighs less than 80lbs. I'm thinking maybe we should stop blaming her.
I ran away from home this weekend. Just for 24 hours. Maggie was in charge while I was gone. She runs this place like a Swiss train.
I flew down to Burbank and watched my friend Elizabeth perform in the Expressing Motherhood show at the Banshee theater. The show consisted of 12 mothers reading, or in some cases performing, a piece they wrote themselves about some aspect of motherhood. There were raucous laughs and some tears, there was unmitigated joy and seething anger just like motherhood itself. If you are in the area, the show goes again next weekend. It was a wonderful escape.
I went with my friend Janet who was already heading down there to visit her mom. We flew down at 2:30 pm leaving us about 90 minutes after we arrived before we were to meet a few others for an early dinner before the show. We went to a brand new mall that looked like Main Street in Disneyland. Dinner and the show were great, I met some new people and made instant connections and we sat together for the show. Afterward, Janet and I each headed to the homes of our respective brothers for the night. I returned by noon on Saturday. I hadn't been to my brother's house in many years and had a great visit with him and my sister in law and niece before leaving there at 10:30 am to return the rental car, get on the plane, then the shuttle, then the BART train so that Steve could pick me up at Civic Center. It was an exhausting 24 hours, but a great break.
When I returned Maggie was happy to see me, but not for the reasons you would expect. I came in and she gave me a smile and waved and then immediately pointed to her nurse and beamed. She was over tho moon because her nurse Josephine was back after a month off. Steve said when they went to the park in the morning Maggie said on her talker. "Dad I am excited. Josephine coming to see Maggie." Steve said that's right Maggie and who else is coming home?"Eventually, Maggie threw me a bone and added me at the end of the sentence. "Mom's coming."
