Thursday, March 31, 2011

Language Cop

You know when you see this title and picture that I'm getting on my soapbox again. But this time I'll let others do the talking.

Last night Tim Shriver, CEO of the Special Olympics was on The Colbert Report stressing the importance  and humanity of eliminating the "R" Word from our language. I can't embed here, unfortunately, but I can give you the link. It's funny because Colbert is the perfect foil. There's a commercial first, I am sorry to say, but it's worth the wait!

 check out video here


Wednesday, March 30, 2011

A break from Spring break

Maggie is off school this week. It is her spring break.We planned a fun outing at least once a day in the morning before the nurse arrived. We haven't done that well. We did go shopping on Monday, we went to grandpa's house on Saturday and had a trip to the park on Sunday. Monday was just one errand in the afternoon. Tuesday we did have fun doing some shopping for the opening of baseball season - including a walk around AT&T park in Maggie's panda hat.

 (For those of you NOT SF Giants fans 1) why not? and 2) "Panda" is 3rd baseman Pablo Sandoval's nickname.)

Today was supposed to be another trip to Fisherman's wharf. The weather is fantastic and we were going to hit the wharf early. But it was not to be.

Early was redefined.

Tim arrived home at 1:00AM and the nurse told him to wake me up to come and check on Maggie. She was needing increased oxygen. I hung out for a while evaluating and basically told the nurse to marshall on. Yes. It was concerning and I needed to check in with the doctor in the AM. The nurse may have wanted more, but Maggie just wasn't sick enough to justify a trip to the ER in the middle of the night. Basically they (read "I") would have monitored her all night and I had a private nurse to do that. I went back to bed and tossed and turned until 6:30.

In the morning, Maggie looked better. The nurse left and I was in charge. She was doing ok, but I had to report this. i called the nurse practitioner. The message said she was on vacation but the other NP would be checking messages and returning emergency calls. Were we an emergency? No, not at that point. I chatted with my sister on the phone and kept an eye on Maggie. By 10:30 she was looking pretty pale. I told her O2 sat and it was alarmingly low. I put the oxygen on and decided to page the pulmonologist. (First time I have used her direct pager since she gave it to me a couple of months ago.) I was hoping we could just get an order for a chest xray and whatever labs Maggie needed. Nope. We had to go through channels. She told us to go to urgent care.

Urgent care has punted Maggie to the ER too many times for my liking. They decide based on her description alone that Maggie has to go to the ER. Maggie is not sick enough to need the ER and it is a waste of time and money to go there. I called Dr. Aicardi, her private pediatrician. As usual, they were extremely accommodating and we could be seen there at 11:30. Perfect.

We were there for an hour. Maggie had (another) breathing treatment and her numbers improved dramatically. We took a prescription along with orders for blood work and a chest xray to use if she got worse instead of better.  It could go either way. We waited for the drugs for 45 minutes and then gave up and went home, arriving around 2:00PM. By 3:00 PM I talked to the doctor and they changed the antibiotic they had just ordered. I needed to go back to Walgreen's to get the new drug. ugh.

Tonight Maggie's numbers are a bit lower again. She is a little worse, but not terribly. Still, things are not gong in the right direction. It looks like our outing tomorrow will be to the lab for the blood work and xrays.

Too bad. We had much more enjoyable things planned.

Monday, March 28, 2011

Maggie and Sophie

The blogosphere is a funny place. You write your heart out and send the words off into the void not knowing who or even if anyone is reading. Then you get a comment here or an email there and you realize people are checking in and want to know what's happening in Maggie's World.

I see the sidebar listing places where I don't know a sole, but I know I have faithful readers in Thunder Bay, Ontario and Euless, Texas, to name just a couple of places. I read other peoples blogs too, mostly about other children who live with challenges like Maggie's - or different from Maggie's. Obviously I find a lot of similarly situated families and it's easy to connect on the internet.

 Sometimes you even develop friendship with this unseen readers, like I have with Elizabeth, who authors a lovely blog about many things including her 16 year old daughter Sophie. (check out her lovely blog here). We've never met face to face, but we have formed a connection. I told my sister in law that Elizabeth was re-opening her cake business (Heavenly Cakes) and Elizabeth made the cake for my brother's surprise party last week. I recommended her without hesitation even though I've never met her and never tasted anything she's baked. Sometimes you just know.

 We wonder if we can get our girls to meet someday, but the disabilities of each make that difficult to imagine. Still, we have decided Maggie and Sophie are friends. I don't know about Sophie, but Maggie is delighted to go along with that.

Especially when GIFTS arrive in the mail from this friend.

Maggie ripped open the pretty pink tissue paper to find two scarves from The Salty Dog Cafe on Hilton Head Island. Sophie lives in Los Angeles, but has her peeps shopping all over the country! Maggie was beside herself with the two scarves and doesn't really care if this friendship was invented by their moms. She thinks Sophie is A-OK

Thanks Sophie. Maggie couldn't decide which one to put on, so she thought she'd just hold both of them. They're blurry because she is shaking them, which is what she does when she's excited. Tell your mom thanks too.

Friday, March 25, 2011

Peeking around corners

Unfortunately snapping photos of children one doesn't know is frowned upon both by society and the mothers of said children.* I wish I could, though because the kids Maggie and I see when we are out and about are hilarious. The dynavox is the draw, of course. Most have seen kids in chairs before, but they haven't seen anyone talking like Maggie does.

The best are those between the ages of about 4 and maybe 9 years old. They have to be old enough to be cognizant of Maggie's differences, but not old enough to be annoying for staring. It varies.If they are too young Maggie is just ANOTHER new thing they are seeing and if they are old enough to know better than to stare at someone in public, it is annoying and I look at them disapprovingly. Of course they never see my carefully knitted brow because they are staring at Maggie. The middle ones - perfect.

Today we were in Borders book, which is a favorite destination. We can cruise all over the store and browse the books, cd's movies and other things. I will show Maggie our friend Grace Young's cookbooks, or the Junie B Jones collection (which she owns in its entirety.) Even though we have those book in our house, she find it hilarious to see them in the store. Of course the entire time we have a running commentary going. I am talking to her and she is answering on her dynavox.

There are children all over the place looking at the toys or calendars or the piles and piles of books. Maggie's Chair fits fine in there, but sometime getting around the displays is a bit tricky. I have to slow way down to navigate her chair. This is when I notice the kids most. They are holding an open book, but staring at Maggie. One kid saw me look at him and buried his head back in the book, only to lower it below his eyes. Another was looking through the shelves in a display case and a third glancing around a pole.  It was all I could do not to laugh. It is natural for them to be curious. If I meet their eye (which is rare) I say hello and tell them Maggie's name. Most are too shy to do anything.

Sometimes their mom/dad/whoever pulls them away to teach them not to stare. I can see the kid listening to the parent while keeping a watchful eye on Maggie. Other times there are older siblings trying to corral the younger ones. When i say something the older ones start asking questions. They are fascinated, know they shouldn't stare and use their younger sibling(s) to get themselves in a position to ask questions. I love those clever kids with the guts to speak up.

Ir's funny, but the same behavior from grownups or even older kids is not cute at all. It feels creepy. I don't know where that line is but I know when it's been crossed.  Until it's crossed, though, I think its delightful.

Just so you know, there's no harm in just saying hello. Even if you are over 9. Maggie would love the break from my incessant chattering I'm sure

* I did not take this picture, just found it on the internet. Some other stranger likely did it.

Thursday, March 24, 2011

Sweet 16

Mr. David, one of the paraprofessionals in Maggie's classroom recently traveled to Austin, Texas  to participate in South by Southwest, the music extravaganza. He kindly brought back a gift for everyone in the class from someplace enroute to or from Austin. Very thoughtful and very generous.  Maggie got this shirt from Arizona.

The timing is perfect. Two of Maggie's cousins are University of Arizona folk, Pete already graduated and Leigh is a sophomore. Tonight Arizona faces Duke in the Sweet 16 round of the NCAA tournament. Maggie is all ready.  She has another cousin who went to UCONN and they are in this round too, but, alas, Connecticut is not between here and Austin. (Besides, they're playing San Diego State......who wouldn't love to see the mighty huskies fall to SDSU ... sorry Kevin)

Thanks Mr. David. And GO Wildcats!

Wednesday, March 23, 2011

Emmit's fix it shop

.Tomorrow is Maggie's the last day of school before Spring Break. The vacation is set for next week, but Friday is another furlough day in the San Francisco Unified School District. Furlough days for those of you who live in financially viable states, are days that have been cut because of budgetary problems. There are several this year. Teachers and staff are not paid, and students are not taught. It's a lose lose situation. But I digress.

When Maggie does not go to school it is up to me to entertain her. We go out somewhere every single day, even if it's only a shopping trip. She loves to go out and has a great time no matter what we do. When she's not out, she is using her dynavox to chat with everyone or to request what she wants. Her most frequent request if for me to play her music, which I happily do. That communication device is her life line.

And, just because she will be all mine to entertain, the device is acting up. Arrgh. It will be a loooong week without it. Maggie operates her dynavox by hitting two switches on her tray. The switches allow her to navigate around the device. Right now the receptors on the side where the switches plug in are very loose. The plugs won't stay in one place and the device won't respond when she hits her switch.

Hopefully Tammy,Maggie's AAC (adaptive and augmentative communication) guru, can work some magic tomorrow or even get us a loaner while this one is repaired. For now, however, we are using the low tech repair method - rubber bands. This very expensive machine is literally being help together (or at least the switches are being held on) with rubber bands.

I feel like Emmit from Mayberry RFD. He ran the local fix-it shop. Hmm, I wonder if he worked on communication devices.  Maybe we can stop by his shop for one of our outings next week. I better come up with something, that's for sure. We are going to have to find a whole new way to keep Maggie entertained.

Oh well, we will figure it out. After all, my name is Necessity and this is my daughter, Invention. 

Monday, March 21, 2011

Is that a pigeon in that hole?

No one likes to be pigeonholed. It feels demeaning and dehumanizing. If we are categorized we lose our individuality. If the categorization happens to be  right, it feels creepy. If it’s wrong it’s  downright offensive. Reaching subjective conclusions  based on objective criteria omits real life and personal circumstances. It’s profiling and doing it to people strips them of the parts of them that are unique. It omits humanity.

We all do it in a general way. Advertisers target an entire demographic because percentage wise there is sufficient accuracy in these categories. Applying general conclusions to general groups of people is fine.  Applying general  conclusions to a specific person is not.It just does not work for everyone. You are a white, middle aged, professional female; hence you love Volvos and sushi. What? No I don’t? (OK, I do like Volvos, but it’s very difficult to get a wheelchair in one.) You are teenage African American male, hence you are into hip hop and sagging pants (are those still in?). The dapper African American high school student who plays classical piano might take exception to that. 

The more unusual the objective criteria, the more likely you are to be wrong.  It is one thing to be wrong about the type of car I might like and quite another to express conclusions about someone’s life. It happens to Maggie all the time. People see her disabilities and assume she has a miserable life.  They impose their own value judgments on her and decide what her life is like. Perhaps, they think if that were me I would be miserable, hence she must be miserable.   Newsflash – she’s not.  If you’ve ever read anything in this blog or ever spent more than 30 seconds with Maggie you know that.

Doctors – who dedicate their lives to curing others - cannot cure her disabilities. They can cure her illnesses but not her disabilities.  Perhaps because they can’t “fix” her, some (not all) assume her life is  terrible.  Some refer to her poor quality of life.  They are wrong, but they are powerful and in a position to apply those judgments in dangerous ways.  I quickly remind them that her life is different, and we think the quality is quite good. I ask them to give me the medical information and let us decide the quality of life issues. That tends to stop them cold. They may think I’m crazy. I really don’t care. My job is to protect her, even from those who will help her.

Don’t misunderstand or think me naive. I completely understand that Maggie got a raw deal in life. I know that better than anyone. But Maggie is almost constantly happy. Things you wouldn’t even notice absolutely delight her. She is smiling or laughing more often than not, because she finds her life just delightful. That to me demonstrates a pretty good quality of life.

I pity the fool who tries pigeonhole Maggie. If they can get past their own bias, she will surprise them every time.

And her crazy mother will throw sushi at them from her Volvo.

Sunday, March 20, 2011

For teachers

Yay for teachers. I just love this guy and his rant. Sorry it's directed at a lawyer

Thursday, March 17, 2011

Top of the Morning

 Back in the day - like the 1920s to the 1940s - Mission High was mostly Irish. I can safely say that is no longer the case. In fact my daughter is certainly the only one I know of . She is the Irish standard bearer  at Mission High School and she takes that responsibility very seriously. We brought in some Irish Soda Bread and various trinkets for the class in case anyone forgot to wear green. Maggie enough green to cover the entire class if necessary.

It is a grand day to have a name like Mary Margaret McDonald.

Wishing you all a grand day as well.

Beannachtaí na Féile Pádraig!  
(Bann-uhck-tee nuh Fay-luh Pawd-rig) Blessings on the Feast of St. Patrick

Tuesday, March 15, 2011


I received an email from Maggie's teacher advising me about a video made by Mission High students about the kids in Maggie's class.  It make me tear up - it is so sweet.

if you want to see it follow the instructions below. You can see Tanya Derkash, Maggie's wonderful teacher. Her classmate and friend Juan is also featured as is Lepa, who is something of a mentor to Maggie and her classmates.Just so you know, you have to watch the principal do his thing, but that's cool too. You will see Maggie at the computer a couple of times,but Juan and Lepa are the stars of this show, as are the typical students giving their input.

 The link is and it is the video that presents on the home page called MYTV.

The part in question starts at 2:50. I'm going to try to embed it

Rest in Peace, little one

I just read a story about a little girl named Laila who died over the weekend. She was just 8 years old and from all accounts was the apple of her mother’s eye. Laila had severe cerebral palsy and unspecified mental disabilities, but she always looked like a princess.   According to neighbors, her mom went beyond any normal parent in making a good life for Laila.

Mom did go beyond any normal parent. She hooked the tailpipe exhaust to run into the car, put Laila in and got in herself. The caregiver found them when she arrived to help care for Laila. Mom is going to recover, and she will be charged with murder. Laila is gone.

What causes a parent to do such a thing? It Is unfathomable to me. There will be theories, I’m sure. People will blame the amount of care that Laila required. People will blame the system that does not work. People will blame mom for not being stronger and tougher and for not seeking help when things became too much for her to handle.  People will blame society that has no place for the Lailas of the world. 

Every theory will be correct to some degree.

I do not have answers. I wish I did. Some families simply cannot handle the stress and they snap under the pressure.  Obviously I am not condoning or excusing the mothers actions in any way. She killed her daughter and she must pay for that crime.

It just makes me profoundly sad.

Rest in peace Laila.

Saturday, March 12, 2011

Of all the gin joints in all the world...

Long long ago, in the time before Maggie, I had two active little boys and worked full time as an attorney. Life was just as crazy then as it is now, but for completely different reasons. Any working parent with two little kids knows what I mean. Your are running in five directions all the time.  You want to find way to spend as much time as you can with the kids because you are gone so much. That means your social life consists of play dates and kids entertainment. It was great, but we really looked for things that would entertain us and the boys at the same time. Sesame Street got old fast.

The first thing we found that we enjoyed together was a short lived television show called The Adventures of Brisco County Jr. It aired on Fox in 1993 and 1994; as a matter of fact, it ended just as Maggie was born.
Eddie was five and Tim was three when it was on the air. Brisco County Jr. was a bounty hunter in the old west, but there was a sci fi element to it, too. The show was hilarious. It was action packed and full of unexplained anachonisms. For example, I recall a sheriff in one of the towns was an Elvis impersonator. I still laugh when I think about that.  The boys loved the action and we loved the humor. Or was it the other way around? No matter.  It was something we all enjoyed together.  It was short lived, though. If my family likes a television show, you can almost put money on the fact that it will be cancelled. I guess we are just not mainstream enough.

Brisco County Jr had a huge impact on our family. If the name is familiar to you and you never heard of the show, you are not going crazy. That's our dog's full name, we call him Brisco for short. (We only use the full name when he's in trouble.)   He is named after the title character of that show, even though Brisco (the dog) didn't enter our family until 1998, four years after the show ended.. Most people mistakenly call him Frisco and I have to correct them. Once in a great while someone will ask, like Brisco County Jr.? And I reply, "precisely, " knowing that if they get that reference they very cool indeed.

  Tim, now approaching 21 years old, said he doesn't actually remember watching the show, but he knows he wore cowboy boots for five years because of Brisco County Jr. When his boots got too small he took over Eddie's.He ALWAYS wore them. ALWAYS. In fact here he is in shortly before his 4th birthday in the Spring of 1994 visiting Maggie in the Newborn Intensive care unit. We always had to scrub in and wear a hospital gown when we entered the unit.  Tim was rocking that look wearing the hospital gown and his cowboy boots.

Brisco County Jr. was played by Bruce Campbell, (pictured above) who is currently starring in Burn Notice. He is one of those actors you see all the time. He's always working. He tends to be one everyone recognizes but can't say from where.  That is not true in this house because -- uhhhh well, he was Brisco County Jr. Hello! Are you paying attention. Also, as noted above, we might not be the average American family.

 Tim was sitting in his speech class the other day. He had already made his tribute speech and was  listening to a classmate make hers.  Tim immediately perked up when she referred to Burn Notice because she was talking about the guy who played Brisco County Jr. (Sorry, Mr. Campbell, but it's all about  Brisco) Tim listened with interest not believing someone else was sharing one of our family heroes. What were the chances that someone else shared our fascination with this guy.

Pretty good as it turns out.

Tim was sitting up straight in his chair, looking forward to telling her how much he loved this guy. He didn't get the chance.

As she wrapped up her speech she said,  "that's why I am paying tribute to MY DAD, Bruce Campbell."

Tim's jaw dropped (as did mine when he told me the story). He was so floored she got away before he could say anything. But he will see her in class on Monday. I wonder how often she has to deal with guys who have idolized her dad since before they can remember, who named their dog after his character and dressed like him as a kid.

It probably happens all the time.

Friday, March 11, 2011

Nature and decency

Ahhh, just when you think it's safe to go back in the water......

There's a tsunami.

There actually WAS a tsunami here today, an after effect of the horrific earthquake in Japan. All good thoughts and prayers for the people in Japan most directly effected by this nightmare. There was no damage in San Francisco, but coastal communities north and south of us sustained significant damage to their ports and the boats moored there. Wild. The earthquake causes an upwelling that races across the Pacific Ocean at 500 miles an hour and rips boats from their moorings thousands of miles away. It's destructive and sad, but it's an  awesome display of Mother Nature's power. As the saying goes, nature bats last.

Everything else seems small and insignificant in comparison.  

Oh, and speaking of small and insignificant, a state legislator in New Hampshire had some choice opinions to share about individuals with various types of disabilities. I saw this on the Facebook page of "Spread the Word to end the Word":   

Barrington Republican Martin Harty told Sharon Omand, a Strafford resident who manages a community mental health program, that \"the world is too populated\" and there are \"too many defective people,\" according to an e-mail account of the conversation by Omand. Asked what he meant, she said Harty clarified, \"You know the mentally ill, the retarded, people with physical disabilities and drug addictions - the defective people society would be better off without.\" Harty confirmed to the Monitor that he made the comments to Omand. Harty told the Monitor the world population has increased dramatically, and \"it\'s a very dangerous situation if it doubles again.\" Asked about people who are mentally ill, he asked, apparently referring to a lack of financial resources, \"Can we afford to bring them through?\"

This does not even bear any commentary at all. None. OK, just this: The scariest thing to me is that this guy is saying what many others think and are afraid to say. 

Maybe decency can also bat last.

It's time for a walk off home run.

Addendum: I just learned in a comment from Elizabeth that Rep Marty is a 91 year old freshman republican. Wow! I checked that out and it's true. Wow Wow! He says he was kidding with these comments and they just got away from him, but WOW again.  I generally give a wide berth to the elderly whose viewpoints are outdated, but sorry, when a person is an elected official that wide berth narrows considerably..

Thursday, March 10, 2011

Speaks Latin, my Satin Doll.....

 I learned in 9th grade Latin class that the suffix -logy comes form the Laitn  (or Greek) word "logia" which means "study." In English it is widely used to describe scientific pursuits,  e.g. geology or neurology. Not sure why, but it seems to be limited to science. Scientists and doctors are geologists and pulmonologists; but teachers are not called educationologists, and lawyers are not legalologists. I guess the sciences are a little more serious and the usage of Latin has a bit more gravitas (also Latin)*.

Maggie has more than her share of   "ology" and "-ologists "in her life. We are seeing a few today. At 1PM Maggie has an appointment with urology, which is something we have to do every couple of years.  Of course, she is having some problems with her trach again, so I called pulmonology yesterday. The pulmonologist wants us to stop by and see her too. She thought I was going to GI (gastrointerology) but I told her no, urology. She said oh, they're right here, just tell neurology that you're coming to see us too. Me, no, it's UROLOGY, not NEUROLOGY and they're on a different floor. I'm supposed to check in there on the 6th floor and come down to pulmonology while I'm waiting to be seen in urology - there's generally a long wait.

That will be my second trip to UCSF today. I am sitting on a panel this morning to discuss our experiences there. I would have said not to this one but I heard it was a presentation for newly hired nurses. They need to hear the family perspective. I love nurses and would do anything to help them; but selfishly, I am excited to get my words in their heads while they're fresh and new. I have to be there at 11:00 AM, leave at noon, pick up Maggie from school at 12:30 and be back for the 1:00 appointment(s)

So, I have no idea how this will all work, but Maggie will be seeing various ologists on various floors at the same time. I wish I knew horology** so I could figure out how to do all these things at the same time

*Latin - it's not just for crossword puzzles anymore.

**study of time. admittedly and purposefully misused...

Wednesday, March 9, 2011

No friends like old friends

If there are no friends like old friends, then I am a very lucky woman because I have a lot of old friends. I am spending this Sunday night with my three friends I've had since childhood.  I have another group of girl friends from a job I had 20 years ago that I see regularly.  Over the past few weeks I  have reconnected with other folks from various parts of my past and it has been great. 

First on the hit parade was my college roommate Clare and her lovely daughter Anne Marie. I do not get to see them often enough, even though they only live in Stockton, about 1.5 hours from here. They drove over to spend the afternoon with us a couple of weeks ago. It was great and I'm hoping to see them more often in the coming months. Clare and I were roommates for 2.5 years during our days at UCLA.We were both English majors and had an IMPRESSIVE collection of Cliff's notes between us. She and I know a lot of each others secrets, so it's important to stay on good terms. I'm kidding about that. It's easy to stay on good terms with her, she is hilarious. 

Last Friday we had some friends to dinner that I haven't seen in several years. I used to work with Richard. His wife and Steve worked at a similar (but separate) firms, so we all knew each other. Richard and I both left that firm about 20 years ago and and connections were more tenuous. Each of us were raising kids and all that. I kept in touch with him and ran into his wife once or twice, but we never seemed to get together. Not only did they come over, but he COOKED dinner and we laughed ourselves silly. Maggie told a few jokes to keep everyone entertained. 

The very next night has to be the corker, though. I went to a reunion of my grammar school class. Not high school, GRAMMAR SCHOOL, meaning I was connecting with the people with whom I spent my childhood. St. Stephens grammar school is a K-8 school. I graduated in 1970. That's 41 years ago! It was impressive, out of 41surviving classmates, 19 showed up, the brave ones actually bringing their spouses along. There were about 30 people there.   Two of my former classmates organized it with a lot of help from Facebook. (saving Egypt and connecting long lost friends and acquaintances.)  Someone would say something from that era and it would spark 10 other memories. 

Of the 19 classmates there, only three of us still live in the City, but most are in the surrounding communities. Two actually traveled to attend this function - using the opportunity to visit family at the same time.  It was amazing to see the grown ups we have all become. The kids I last saw at age 14 are now lawyers, teachers, firemen, contractors, butchers, television producers, and professionals of all types. Several are looking at retirement and some are grandparents.  It was wild.

It's good to remember all the facets of your life. When I get bogged down in ordering Maggie's supplies or waiting for doctors or prescriptions or anything else, I just have to remember all the people I have encountered in this life that helped me get to this point. You have to smile. 

In fact, here are a few of them from 1970:

Can you find me? 

Monday, March 7, 2011

10-4(0) over and out!

Like every other good American, I am getting ready to file my income tax return. Of course before I can send it to the accountant to figure out, I have to do all the grunt work of going through the receipts etc to determine our deductions.

Because of Maggie's extreme medical situation, the medical decuctions are always the biggest part of everything. I generally keep every receipt throw it in a file and this time every year I regret not being more organized. I know there are better and neater ways to do this, but I'm still patting myself on the back for saving stuff.

Right now there are piles all over the dining room. I have the doctors and hosptials separated from the dentists and supplies. Once everything is separated, I make an excel spread sheet so that it makes sense to someone other than me.  If the spreadhseet is set up right, I can input the stuff easily into the accountant's form.

The single biggest pile is from Walgreens Drug Store. Maggie has a lot of prescriptions - I mean a LOT. I counted 166 prescription receipts, and a ton of others for supplies. I'll bet 162/166 of those are Maggie's. The rest of us might have the occasional prescription, but nothing ongoing.  I am also willing to bet there are other receipts in bags and pockets that never made it to my high tech filing system.

I can show you the Walgreens' pile because it's by itself on a sideboard. I can't possibly capture the rest of the medical and charitable stuff spread out all over the table. This doesn't even include most of the supplies which are delivered by other companies.

Don't be jealous.

 Oh and don't drop by for the next day or so either.

Saturday, March 5, 2011

maggie's party

Im trying this again because one of you told me this didn't work. After I put up the link I switched things around and forgot to change things on the blog. This should work now, but if it doesn't you can check all the pictures out at the shutterfly share site 

You will see a large cut out - it's Justin Bieber with Juan's face pasted over Mr. Bieber's That was a huge hit with everyone. As were the Maggie Masks, of course. 

It was a joyous party. Anyone who feels sorry for "those poor kids" should spend some time at a party like this. You would lose whatever pity you harbored and  find yourself smiling!

Friday, March 4, 2011

Quick recap

Maggie's birthday party was fantastic. The Mardi Gras theme was great, but it really doesn't matter what theme you use. The classroom and the people in it is such a positive place any party wold be a success. If any of you are feeling down, I suggest you spend 10 minutes in Maggies class. The joy is infectious.

I am off to an all day class today, Taxation issues in Estate Planning. THAT will bring me right back to earth.  I will post a link to all the party pictures over the weekend. But I have to leave you with one. The class made Mardi Gras Masks using Maggie's face. They were a HUGE hit.

Thursday, March 3, 2011

Wednesday, March 2, 2011

Language Cop

Today is March 2. It is my sister Mary's birthday. It is also my niece Mary Clare's birthday (named after her aunt) and I wish them both a wonderful day. Tomorrow is Maggie's birthday, so I have a ton of things to do to get ready for her Mardi Gras party.

In addition to the celebrations and preparations, though March 2 is something else. It is the national day of action in the campaign to end the "R" word.  It is "Spread the Word to End the Word" and it is a cause I wholly support. This has been the subject of previous blog posts and because there's nothing like repetition, I am simply going to recycle what I've said before.  It is symbolic, not lazy. The message is so simple, but people need to hear it over and over again. There's nothing new to say, so here's what I said in November 2008 and a few times since.(see language cop tag). Join in.  Go to and take the pledge to end the R word.

Monday, November 10, 2008

Warning: I’m going to play language cop. And just to irritate you further, I’m going to make some sweeping generalizations while I do.

Over the past generation, there has been a marked decline in the use of many ugly words in the English language. Well, at least from the language of decent people. Racial and ethnic pejoratives are no longer the norm, or at least not in public places. Some people call it political correctness others call it common decency. Either way, significant progress has been made. Certainly, there is a long way to go; but we have learned as a culture that these words are hateful and hurtful. Admittedly, many individuals have not yet learned this, but overall the collective consciousness has been raised and good people refrain from using them.

Middle schoolers and those of similar developmental maturity still use the word “gay” to describe things; and generally it has nothing to do with sexual orientation. “That jacket is ‘gay’” simply doesn’t make sense. Of course, that term or others like it are still used to tease, judge and hurt. Culturally, we have farther to go in this area, but hopefully this too is waning.

One word that is equally hurtful, but has not seemed to resonate with the cultural language cops is: “retard”.

For some reason using this word hasn’t come under the same microscope and remains acceptable even among the decent folk who would never consider using racial, ethnic or cultural pejoratives.

It needs to go.

Describing someone as a retard is …. Well …. no, I won’t say it.

Presumably, the use of the word is meant to imply that someone is stupid or unable to do a simple task. Of course, that has nothing to do with actual intellectual disabilities, which is an innate disability over which the person has no control. Equating that disability with stupidity is ignorant. Using the term in an effort to be funny is anything but.

The term is in the same class as the racial, ethnic and sexual orientation pejoratives. Though it may not be intended as such, using it in that way is equally hateful and hurtful. We need a collective cringe

When my boys were younger they knew not to use that word in my presence. When their friends were in my house or my car and used that word, they were immediately lectured. Several people have learned not to say that word – or at least not to say it around me. I can remember one friend of #1 son saying that in the back of the car and I looked in the rearview in time to see #1 sock him in the leg and say, “Don’t get my mom started.” I just smiled. To quote George W. “mission accomplished.” I didn’t have to say anything.

I do not suggest we start beating each other up to eliminate the word, but I would hope everyone will try to refrain from using it and be aware when you hear it that it is just not “ok” anymore.

I have spent every day for the past 14.5 years dealing with disability. My daughter’s disabilities are profound, and mental retardation is not even one of them. I have seen so many children work as hard as they possibly can to overcome some disabilities and/or to adapt to others. Every minute of every day for these kids is hard work. Some of them do have intellectual disabilities, but I have yet to meet one who is stupid.

Don’t equate the two. Eliminate that word from your vocabulary. Do it just for me.

At the very least, don’t use it around me.

Tuesday, March 1, 2011

Memorable Statue

We spend many a weekend in Golden Gate Park.  We almost always end up in the concourse a few blocks away. That’s where the bandshell , the DeYoung Museam, the Academy of Sciences and the Japanese Tea Garden are located. If we have the dog with us,  we hang out by the fountains and keep walking around. If we don’t, we generally head into either the museum or the Academy of Sciences, which houses the Aquarium.  

This statue of a man working a grape press is perched along the concourse and we walk by it every time. I remember seeing this statue when I was a little girl going to the park with my grandmother. It is just part of the backdrop of many of the days of my life. One day it took center stage. Steve didn’t know that or the feeling I get every time I pass that statue, until I told him on Sunday.

It goes back to 2007. That was a terrible year for us. My dad died in January and Maggie got very very sick in March.  We did not know if she was going to make it and they ultimately had to put the trach in. For the first several months following the trach placement, things were very very rocky for Maggie health wise.  We have only had to contact paramedics twice in Maggie life and both times were in the months after she received the trach.  

One of those 911 calls was when Maggie stopped breathing. It was the middle of the night and the nurse was yelling. We came running to find Maggie struggling. The trach was clogged. She stopped breathing. I changed the trach as fast as my fingers would allow and she still wasn’t breathing. Steve was on the phone to 911 and I was doing everything I knew how to bring her back. I quickly considered mouth to mouth, but I though no – that won’t work because of the trach. I just blew into the trach and after what seemed like a terrible delay, Maggie’s body responded like an engine sputtering to life.  

The paramedics arrived. In my state of confusion and eerie calm I told them it was ok now, she was breathing. I apologized for making them come. They were so young and so professional. The  paramedic  asked how long she was "down" and I said about 2 minutes.  He knelt next to me (I was sitting in the chair holding Maggie and holding her trach in place) looked me in the eye, and said, “you can’t just stop breathing and not check it out, we should take her to the hospital.” I was like a child being led through the darkness.  I just looked at him and nodded.  I said we have to tie the trach on first and tried to do it but my hands were shaking so badly I couldn’t make it work.  I remember being surprised at my shaking hands because I felt so completely calm. It was as though I was watching myself in a nightmare.

We got in the ambulance and the paramedic driving (who didn’t look old enough to have a drivers’ license) said.  “We are going in Code 1 but don’t let that worry you”. I told him I didn’t know what that meant and he said, “it means we are going lights and sirens.”  I nodded again.  They were taking care of me and Maggie at the same time.

It was a beautiful night with a full moon.  The hospital is just across Golden Gate Park.  I sat in the front of that ambulance. We went through the concourse and that statue was glimmering in the light of the moon, and then it turned red when the ambulance light fell on it.  I remember looking at the statue and feeling grounded. He was still working that press, turning that wheel as hard as ever.  If that statue was there this was real. But it felt surreal.  Everything was exactly where it’s supposed to be, everything looked amazingly  beautiful and I was sitting in the front of an ambulance not knowing if Maggie is going to be ok.  I was completely in the moment and it was a terrible moment.

Maggie  was ok, eventually. She had to stay in the hospital about two weeks after that. It was part of that terrible year and terrible time in her health history. I think, though it was also the turning point for her. She started getting stronger after that.  There are still setbacks, and there always will be, but I think the nightmare started wrapping up after that episode.

Even though I relive that terrible memory when I see that statue, it is ok.  I like that statue.  I feel like it brought me back to earth in a moment that could have gone either way.

 The irony that the man in the statue is making wine is not lost on me either. I raise a glass to him regularly.