Queen of the Nile

When I was a kid, Halloween was all about the candy. Costumes were simply a vehicle to get those bags filled. For Maggie it's all about the costume.

Halloween is Maggie's favorite holiday. She cannot trick or treat because of the stairs, and even if she could get to the front doors, she could not eat the candy anyway. Still it's her favorite. Perhaps because her father is a creative genius. This year is no exception. Steve may have outdone himself this year.

 Maggie is Cleopatra and her wheelchair is her throne guarded by the Falcons.

Now THIS is a costume befitting Maggie

 

Lest you thinks any details are missing, note the scepter and the flail as well as the Ankhs lining her tray

Vayna and Betty, the exchange students are embracing this uniquely American Holiday

And here is Gepetto, our resident toymaker, putting the finishing touches on his creation

Her teacher Mr. Garrido (center) and classroom paras (aides) Laura and Eva were ready to welcome her into class

Hope everyone has a great Halloween, candy or no.

German Invasion Day 9

Our exchange students Betty and Vanya have been with us for nine days now. I believe they are enjoying themselves and getting a lot out of their visit. I KNOW we are. It's an amazing thing that in such a short amount of time these girls have become such a part of our lives.

Vanya and Betty are in a group of about 14 students who came from Germany. The kids are spread out among various host families connected with the high school.  Most of the host families have students at the school. Our connection is more tenuous, my brother is a teacher there. I was glad to get two students (who are already good friends) because they don't have a host student in the house.  Maggie attends a different high school and, though you may find this hard to believe, she is not that hip on the social aspects of being a San Francisco teenager.

Betty went with the rest of the visiting German students to Los Angeles for four days. Vanya stayed in San Francisco. It was interesting to watch Vanya adapt to school and to us without her friend around.  Of course she did great. But when Betty returned last night, I realized how much I had missed her and saw how happy Vanya was to have her back again. It was a sweet reunion for all of us.

These girls are 16 years old and I can tell you that teenagers are teenagers regardless of their country of origin. They giggle and converse and give each other a bad time. Vanya told Betty that she (Vanya) was now our favorite daughter because she bonded with us while Betty was in Los Angeles. Betty just stuck out her lower lip in reply and we all laughed.  They joke with each other and with us and even get Steve's sarcasm. It feels like the energy level in this house has increased in a very positive way.

In addition to the constancy of teenagers, there is also the constancy of parenting. Steve and I find ourselves worrying about them and wondering where to set limits. There has not been any issue whatsoever, but there is a dance at the school tonight. Also Halloween is Monday and they are invited to any number of parties. Fortunately it's a school night so they won't go too crazy.

You have to realize that the only teenager in this house now is Maggie. We have many worries about her, but heading out to dances and Halloween parties unsupervised are just NOT among them. I worried about stuff like this with my sons too, but let's face it, the issues are different with boys than with girls. Also, I had known all of their friends for many years and knew what to expect. I also knew their friends parents and could track them down with relative ease.

It's been several years since we've had to consider these issues. We will figure it out, but we are realizing that we both feel somewhat energized by the circumstances. I just have to keep Steve from roaming the streets on Halloween looking for any signs of mischief.

Talk about scary!

Red Tape for $500 Alex

Medical drama for Maggie.  She's fine, but she had to have a brain scan on Monday. It was clear.

I dealt with some of the best specialties available, anesthesia, post anesthesia care, neurosurgeons. But no one could help with with a HEALTH issue. Perphap medicine is a bit too specialized. No one can address the whole PATIENT. And when you have a Maggie, with multiple problems, I need someone to think about the whole person, not just their specific specialty.

Maggie had to be anesthetized for the scan because she cannot stay still. She was out for about 5 minutes, if that. Even though it was short,  they had to send her to the recovery room. That was a first - generally they just let her wake up and I take her. Maybe they used different anesthesia. No one could explain the change - why would I want to know?  I'm only the mother.

While in the recovery room she developed a separate, unrelated but acute and dramatic issue, one that required medical attention. Good thing I was already in the hospital, or so I thought. I quickly called the nurse who looked very alarmed and asked if this had happened before. I told her it had once before but she was already an inpatient at the time.  The nurse looked through Maggie's paperwork and said "But that's not what she's here for." Right, this is a new problem.  "Then I suggest you call your primary care doctor immediately."

I was dumbfounded. I'm sitting in a hospital, Maggie is bleeding from places she should not be and I can't get help.

My primary care doc is at a different location. We had an appointment with the neurosurgeons after the scan and I could deal with everything at this place. I said perhaps you should call someone who can help her now  and the said I really don't know who to call. I gave her the name and department of the doctor who would handle this problem but it wasn't going to happen. I had to leave Maggie in the recovery room to go out into the hallway to call the other specialist's office to get the test ordered. (no cell reception in the recovery room). Even that office  were reluctant to do it becasue they could not fit Maggiein  that day and would have to charge for an office visit. I said, I have already collected the sample, I just need an order for it to go to the lab.  Done - reluctantly, but done.

Now it's been 72 hours since that happened and I still haven't heard form ANYONE up there about this. I called my pediatrician (and good friend) less than 24 hours after the tests who got the results and started the antibiotic immediately.  Maggie has now been on antibiotics for 48 hours, not that anyone at the hospital knows that. By the time the specialists deal with this Maggie will be an old woman. If they ever heard this story they would shrug and say , well it all worked out. Yeah - no thanks to you or anyone else up there.

I get that specialized medicine is necessary. In fact I know the specialists have saved Maggie's life on numerous occasions. But some common sense should be injected into the equation at some point. Should I have to machete my way through red tape to get Maggie what she needs? 

Kissy Face

Maggie has issues with anything touching her face. She can touch her face herself, but anything else makes her wince. In fact, this is the face Maggie makes whenever she gets a Kiss, even from Tim.

Believe it or not, she actually loves it, but ooooh, that face!

Carlos Santana

Maggie went to an assembly at school yesterday. Yawn. Not big news. Every high school has assemblies. However, not every high school has Carlos Santana play a concert at their assembly. Very cool.

 Santana graduated from Mission in 1967 and according to one news story, hasn't been back since.  Yesterday he came to celebrate Mission's accomplishment of getting an 85% college acceptance rate.Mission is making great improvement in academics in recent years. (maybe since Maggie arrived?) Here is the school principal Mr. Guthertz on the school stage with Santana. (Two men I admire for completely different reasons.)

 He not only played, but had the guitar Club from the school on stage with him for at least one song. Someone from the school posted this video on you tube.

 Maggie and her fellow wheelchair users were right up against the stage and she  loved it. We were listening to Santana all weekend in preparation.  She liked the music and especially liked the fact that I LOVED the music. During the assembly itself, the nurse said Maggie was very fidgety while Santana inspired the kids with his words. He told the kids to remember they were significant and that each individual matters. (I think Maggie already knows that she matters.) She was much more into the music.

I came to pick her up early for a doctors appointment and was talking to a reporter outside (casually, not interviewed) who  was waiting for a cab. He asked if I stayed for the concert and I said, "no. I figured this was for the kids and I was afraid I would embarrass myself because Santana was much more my era than theirs." He was about my age and he laughed and agreed; but he said, Santana owned that room in about 30 seconds because he related to the kids so well. His music is not generation specific at all and his personality and warmth came shining through.

Actor Edward James Olmos and director Peter Bratt were there too.

Not bad for a Monday. Wonder whats up for today?

Weekend Whirlwind

This was a great weekend. the weather was perfect, both my boys were in town, we had a dinner on Saturday with my mom and my brother and sister in law and I didn't lose any exchange students.


My son Eddie and his girlfriend Grace arrived on Thursday evening about 6. We talked for a while and I told them I would introduce them to Vanya and Betty, our German exchange students, as soon as they returned from their walk. They were due back at 6:30. When they still had not arrived at 6:45 I was getting nervous. They had only been in SF for 24 hours and I let them wander around alone. Eddie was making fun of me for being worried. I tried to be cool, but by 7:00 it was pitch dark and they were no where to be found. I started looking around in the car. I wasn't worried about their safety, per se, but I feared they were lost. Eddie stayed home to let me know if they showed up. They did at 7:15. When I came home they were all apologies, but I knew it was as much (or more) on me than on them. We ate dinner and the girls turned in, still jet lagged from the trip. An hour later the second earthquake of the day jolted the house. I made the decision right then and them to buy them a go phone (pay as you go cell phone) to use while they were here. Grace and I bought in on Friday. For $25 I have the perfect solution to my anxiety. I gave them the phone Friday after school and now know I can reach them or visa versa whenever we need to.

Steve returned from his trip on Friday night to find only Maggie and I at home. The girls had gone to a high school football game with my neighbors and Eddie and Grace were out with friends. Maggie and I were holding down the fort watching chick flicks. Within a few minutes everyone else arrived and Steve was introduced to the girls and caught up with Eddie.

Maggie and I took the girls downtown on Saturday morning to meet up with one of the host students, who was going to spend the day shopping with them. I picked them up later in the afternoon, stopping in the middle of busy Market Street to retrieve them. I was  urging them to jump in the car before a) I got a ticket and b) the Occupy San Francisco people enveloped us. Vanya and Betty were fascinated by the protest because they said they don't have things like this in Germany. It was a good opportunity to explain both the academic - the importance of free speech is in this country  - and the practical - how you don't want to be stuck in traffic because of someone else exercising that right.

Maggie is thrilled having visitors. She is calling them by name via her dynavox. When they first heard her say, "Vanya and Betty, hello!" they were taken aback but delighted. That helped them "get" Maggie a little better. She doesn't always appear to be engaged, but she is listening and paying attention all the time. 

Maggie was even more thrilled to have BOTH brothers home at the same time. Tim came by on Saturday and Sunday morning and I was able to get a picture of all of them together. This is becoming an increasingly  rare occasion.

Culture!

We are hosting two German highs school students for three weeks. They arrived yesterday and everything seems to be going very well. The two girls, Vanya and Betty, are already good friends in Germany, so they are very pleased to be rooming together. They are lovely, polite, speak perfect English and think everything is great. That's the kind of house guest you dream of. Here they are leaving for school this morning and saying good bye to Maggie.

We've already had our first cultural exchange. I asked if there was anything they wanted to eat or didn't want to eat so I could stock the groceries accordingly. Vanya mentioned last time she was here she had some lovely cheese from Philadelphia that was very creamy and wold love to have that again. I said, Philadelphia Cream Cheese? Yes. No problem. They had bagels and cream cheese for breakfast and Betty had never heard of them or tried them. Of course she loved it (how could you not?). I guess that's not technically MY culture but I think Bagels are assimilated enough that we can all claim them.

Maggie has had limited interaction at this point. The girls met her when they got home yesterday, but they could barely stay awake and were in bed by about 7:30. They will have plenty of time to get to know one another.

The new refrigerator arrived while I was at the airport (of course.) Thanks to the generosity of my friend Rose who waited at my house for the delivery men, it is in place and cooling food again. I tried to convince Vanya and Betty that my kitchen is not usually in such disarray, but I'm not sure I got that across. The plastic wrapping on the refrigerator helped me look a bit more credible.  Of course now its a day later and the food is put away, but the disarray continues, so maybe it's not just the new refrigerator.

Have a grand day.

Big Day

Maggie is about to get on the bus to go to school like most school days. But today is very different. Maggie is going to be the host student for two exchange students from Germany and they are arriving today. Our guests are two girls and they will be in the US for three weeks. They will not attend Mission High, where Maggie goes. Rather they are part of a program at ISA - International Studies Academy in Potrero Hill.

My brother is a teacher at ISA and they were a little short on host families, so we volunteered. The girls, Vanya and Betty, will be here for a week, then the group goes to Los Angeles, then back here for the third week. We are all looking forward to this new adventure.

I did let the organizers know that Maggie is not exactly a typical American High school student and wanted to make sure that the students placed here understood the realities. I certainly don't need to shock a visiting teenager. These girls know what they are walking into, so we don't have to worry about that. I received a couple of emails from Vanya, and it is clear her English is excellent, so we will all get along great, I'm sure.

I am picking them up at the airport and then taking them to their school for a reception. My brother will bring them here after school so they could arrive shortly after Maggie gets back on the bus.

Of course today is also the day that our refrigerator arrives and right now the counter is lined with non perishable items that have been in the fridge since it went out on Saturday. Think about it. What is non perishable that you keep in a refrigerator? Beer, of course. And there's also a bottle of champagne.

 I really hope the new one is in place and all this put away before they get home from school. I would have their first impression to be a kitchen counter lined with alcohol. They were informed about the disabilities, not the alcohol.

Auf Wiedersehen!

Memories of the Bay Bridge Series

Twenty two years ago today  I was sitting at Candlestick park waiting for Game 3 of the World Series to start. The Giants were playing the Oakland A's in the "Bay Bridge Series" The Giants were down 2 games to none but this was the first home game and we were sure things were gong to turn around. The crowd was excited and anticipation was building for the game to start.

It was the first (and only) World Series game I ever attended. We had gone in on a "strip" of tickets with some guys I worked with and we were able to go to one of the playoff games and one World Series Game. If it went to 6 games we would get to go to two. The Giants had to win so we could come back again. We actually had great seats, which was funny because we were not season ticket holders. We just sort of lucked out. Section 10 under the overhang just behind third base. We met the couple next to us at the playoff game and of course they were back for the World Series. They were entertaining and hilarious and this was going to be great.

At 5:04PM I felt the place starting to shake. I grinned thinking it was the people above me stamping their feet but realized immediately that only happened in bleachers, not in concrete stadiums. What was this? My eye went to a television cameraman who was standing in a "cage" handing off the mezzanine level. It was there just for the World Series. I watched him lose his balance and hold onto that side of that cage with all his might.He looked frightened but for a split second I didn't know why.  At that very moment the ground under me felt like it was undulating. I looked at Steve and we just rode that earthquake out. It was easily the biggest one I've ever felt before or since. We were experiencing the Loma Prieta earthquake which was 7.1 on the Richter scale.

Immediately after it stopped there was dead silence and then a ROAR arose from the crowd, It was really almost a cheer. I learned later that Atlee Hammaker, a pitcher for the giants said, "That was the tide turning." Everyone was still focused on the World Series. The Giants were going to turn it around for sure now. The immediate shout of relief, fear, exuberance, whatever, quickly gave way to concern. The television the guy in front of us had been watching lost its picture.

I was about 8 weeks pregnant with Tim and perhaps a teeny bit more emotional than most people there. I told Steve I wanted to go home. Eddie was 18 months old and my friend Anna was watching him. I just wanted out. Steve said we just have to wait. I begged him to move out from under the overhang. Steve said "that's reinforced steel and concrete, it's not going anywhere."  Just then the picture can back on the man's tv and we were looking at pictures of the collapsed Bay Bridge. I looked at Steve and said, Oh, really? Whats THAT made out of?" We moved.

It wasn't necessary. Candlestick park was not collapsing. The game was called off, of course and we made our way back to the car. It took three hours to get home  - in fact it was 1.5 hours just to get out of the parking lot. I was frantic, but outwardly calm. Everyone was. it was a beautiful day. Spectacularly clear. We could see the smoke in the Marina from  the fires. We were listening to disaster reporting. That was strange. They were talking about US, but we were fine.

Power was out everywhere. It was a long slow trip home.We kept hearing the same reports over and over. There was no discussion about our neighborhood at all. I said that's probably good news - or the entire place is gone and there's no one to report it. (Still not quite as calm as I could have been.) As we drove through the Richmond District, I saw lots of damage especially at the corner houses. As we neared Anna's house I saw a crowd of people at an Irish Bar on Geary. It was powered by candles, but the place was packed. I considered this a good sign. We retrieved Eddie who told us about BIG SHAKES. (He was also mad that Anna had stolen the batteries out of his toy to use in a flashlight).

When we arrived at home my brother in law Jim was sitting on our front steps, his finger stitched up from glass falling on him. He couldn't make it across the Bay to Oakland where his wife (my sister Kate) and her (then) three kids were waiting. Somehow they had connected by phone, so each knew the other was ok. Jim said he walked to our house from downtown (probably 4 miles) because he knew it would be standing. Steve had bolted the house to the foundation a few months before. He and Steve started eating the melting ice cream and drinking the beer that was getting warm. Eddie needed to go to bed so I laid down with him and listened to my Sony Walkman for updated reports. There weren't any. It was too early.

In the light of day we learned more about he Bridge collapse and the people killed there and on the freeway in Oakland. We learned about the extent of the fire in the Marina and learned of more victims there. In our house we saw that a few things had broken - but just a few. The fish tank had sloshed over and damaged the wood floor, but that was it. We felt very very lucky.

The World Series continues a few weeks later, but nobody really cared anymore. There were bigger tings to worry about. The Giants lost the series 4-0 and didn't return until 2002 and didn't win it until 2010. I didn't even make an attempt to go to the series in 2002 or 2010. I think my one experience at a World Series game was enough

Luxuries

There are so many worries when one is a parent. So many. All of us want the best for our children and all of us worry and fret over roadblocks to achieving the best. That is the same for every parent.

The difference is the measuring stick. What's best for one child and one family may be unthinkable for another. For some children there will simply never be worries about "normal" things. In fact normal worries become luxuries. 

This piece in yesterday's New York Times is so elegant and eloquent that I have to share it. You can link it or read it below. My favorite line in this piece sums up everything I've tried to get across in this blog: 

We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

I tip my hat to the real Dragon parents out there.

Notes From a Dragon Mom

Alexandra Huddleston for The New York Times

Emily Rapp and her son, Ronan, who has Tay-Sachs disease.

By EMILY RAPP

Published: October 15, 2011

• RECOMMEND
• TWITTER
• LINKEDIN
• E-MAIL
• PRINT
• REPRINTS
• SHARE

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design. 

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state.  He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future.  The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice.  Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now.  No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Costume teaser

Our terrible Tuesday spilled over into Wednesday a bit. Maggie went to school but she couldn't make it. I had to go get her at 11ish. I think the stress of the day before was just too much. I was worried she was really in trouble, but after a couple of hours she was back to herself again.

The trauma of the tests on Tuesday was not wasted, though. I spoke with the doctor yesterday and they obtained some good information that may end up helping Maggie. Fingers crossed. We talked about timing for scheduling the next procedure. I specifically asked if we could do things after Halloween. Maggie does Halloween in a very big way and she missed last Halloween because she was undergoing medical tests. The doctor was completely on board with that, so we have a breather for a couple of weeks.  

The Halloween costume is under construction as we speak.Steve always does an elaborate decoration for her chair and this year will be no exception. You will have to wait for the big reveal.  Maggie and I went to the Halloween store to focus on her costume and I think you will be wowed. As we wandered through the store I had to laugh at the political masks on the wall. Maggie fit right in.

Just to keep you entertained, I am reposting pictures of past costumes. These are all Steve's creations.

2004 Hell on Wheels

2005 Leprechaun, complete with the pot of gold at the end of the rainbow

2006 viking with her own ship

2007 Race Car Driver (and her nurse came dressed as a pit crew worker)

and the Chef in 2008, (my personal favorite). The oven door rally opened

2009 Pirate

As noted she had to skip last year but she will be all ready for 2011. This year the costume really fits the Maggie we all know and love. 

Stay tuned!

What do you DO all day?

For those who still ask "What do you DO all day," here's my day today.

Maggie had some medical tests today that meant she could not have any food after 8AM. We kept the night feeds going until 7 and then I fed her at 7:30. She had to go hungry until 2PM. That's a long time for Maggie who gets a feeding every two hours.

We headed downstairs and the school bus was 40 minutes late. I didn't call until it was about 25 minutes late and then they said another 10 minutes. We waited, but that definitely threw off my timing for the day. I took a shower, prepared paperwork for the afternoon appointments and waited for a contractor to come at 10 so he could take the ceiling lift back for repairs. He called at 10 and moved things to 12:30. Grr. Ok.

I head downtown to pick up the check for the nursing, which is available on the 11th of the month. Of course there was a mix up that delayed things for several minutes and  I had to dash home to get there before the contractor. No time to put the check in the bank. I'll have to do it after Maggie's tests.  He arrived and wanted to test the loaner machine. I was eying the clock because I had to get Maggie. He left, and I raced over to Mission high to pick her up.

I swear I missed every single light on the way back across town. When you are sitting at a light saying "Please turn green" over and over, you know you are cutting things close.

We get to the hospital at 1:45 and there is no place to park. No place for about six blocks. I went into the lot behind the nearby market and figured I would get a validation when I came back an hour later. It' s a little scammy, but I was desperate. We arrive on the stroke of 2 and the tests started right on time. They took a lot longer than I expected and one was HORRIBLE for Maggie. She was frantic and sobbing. I'm happy to be there to comfort her, but its very hard to watch and I feel like a co conspirator. We get out of there about 4:15. Maggie is fine, but still upset.

I walk back to the parking lot, buy an iced coffee I really don't want in order to get my ticket validated, load Maggie's chair into the car (right in front of the guy in the ticket booth) pull out and hand him the ticket. My two hour validation is expired. I need an extra $5 to get out. That's fine, but I cannot find my cash. I offer him the visa and he say no cash only. He tells me me there is an ATM around the block. There is NO WAY IN HELL I am going to unload Maggie again. I pull over so others can get by and search through my enormous purse because I KNOW there is cash in there somewhere. I contemplate making a run for it, but decide that's beneath me. I cannot find the cash.  I was going to just give him my business card and tell him I would be back in 30 minutes with cash but I had to get her home for her treatments. Maggie is whimpering a bit but not crying any more.

I decided to calm down a little bit and look again. I put the coffee down on the seat between my knees, and calmly look in the various slots in my bag. I feel something cold and realize the coffee is all over my khaki pants. Lovely. Just then I  find the cash. Who cares about he pants. Let's go HOME. I walk over and hand it to the guy who just looks at me sympathetically.

We get home and Maggie is overdue for her treatments. She is still upset by the NG Tube they had to shove up her nose. I don't blame her. I am too.

I hop in the shower for the second time today. Never did get that check to the bank. It has to clear by Thursday so I can pay the nurses. I will have to juggle some funds to make that happen. But that's tomorrows problem.

Now I have to go to a meeting at a different hospital. In fact I'm late.

I sure hope there's parking.

Five Finger Discount

One day many years ago I took all three kids to the optometrist to purchase some new glasses for Eddie, who was then about 8 years old. We had to wait for the customer in front of us to finish so Eddie and Tim killed time trying on various frames and modeling them for each other. Some were contenders, others were outlandish and entertaining.

I could tell the woman in the store was annoyed, but I ignored her. The boys weren't causing any trouble.They weren't loud or annoying and they putting everything back were they found it. But she was irked and as a mom you can just tell when someone is not a kid person. She finally snapped at me, "they shouldn't touch those." I said very sweetly, "really? Because we're here to get him glasses and he's going to have to try them on to see what he wants." She relented, but I could tell she was still miffed. When it was our turn she was quite curt and I finally asked her if there was a problem. She told me she does not like children touching her stuff. I said, "Then perhaps we better go somewhere else." I wasn't mad but I certainly wasn't going to give her any business. We left in a very dignified way.

In those days Maggie sat in a car seat. I took her out of her tiny wheelchair to load her back into the car and to my embarrassment I saw that she had a pair of frames in her seat. While the woman was eyeing those evil little boys, their baby sister was stealing frames. So much for our dignity. Always the coward, I sent Eddie back onto the store with the pilfered frames. He left them on the counter and said, sorry, I guess my sister grabbed these. The boys and I laughed about that all the way home. Maggie was too little to know what had happened, but she was very entertained by our amusement.

Maybe we shouldn't have laughed so hard. Maggie turned into a little thief. There's no malice of course. It's just fun to snag things. Over the years there have been other things, such as hairbrushes, keys,etc that little Miss Hot Hands grabs out of pockets or off of any place she can reach. She used to hang out on the floor and would routinely take everything out of my purse, once ripping a $20 bill cleanly in half. If something small is missing you will likely find it her wheelchair. She grabs something and then drops it along the side of her legs where it stays until someone moves her. She finds it very entertaining when we say, "Excuse me madam, can you explain how this got here?" Mr. David, an aide in her class, snapped this shot of her holding his wallet. 

Now she may be moving up to grand theft. The other day the nurse handed me a ring she found under the chair in Maggie's room and said, "Here, Sally I think you dropped your wedding ring."  It is not mine, but it is definitely somebody's wedding set. At first I figured it belonged to one of the other nurses and just put it aside to ask each as their shift came around. It didn't belong to Josephine, Fely, Etoy, Lucy or Joy. I have a house keeper that comes every few weeks and she brings a helper. Surely this belonged to one of them. Nope. I asked a few friends who had been over at the house. Nope. The school nurse asked at school. Nope. I showed it to Maggie and asked if it was hers and she just grinned. 

We have no idea how it got into her room or how long it had been there. Obviously it could have come from anywhere. There are a lot of people in an out of this house. But my suspicions are on Maggie, aka Baby Face Nelson, the sweet looking little girl in the wheelchair who is above suspicion.

Did she take it from somebody? I have no idea. How in the world could she get someones wedding ring without them knowing it. If it was in somebody's pocket or on a counter I could see it, but who leaves their wedding ring lying around? Who else was close enough to Maggie for this to happen? Why isn't anyone missing a ring? It is a mystery, but given Maggie's checkered past, I can't help but wonder. If you are missing your wedding rings, please let me know. 

But you better hurry, Maggie keeps asking about the pawn shop on her dynavox.

Mystery Passenger

Our van came equipped with privacy glass. Everything behind the drivers area is darkened glass. We are like international men of mystery. If anyone is interested, the back of the van is generally filled with dog hair and medical supplies.

The privacy glass means that people cannot see Maggie, or any passenger in the back, when we are driving or even when we’re parked.  I had one lady yell at me for parking in a handicapped zone. I didn’t respond to her at all and she looked  pretty stupid when the door opened and Maggie was sitting there in her wheelchair.  (To be honest, I rather enjoyed watching her squirm.)

 If we are driving, people in other cars can see that I’m talking but they cannot tell if there’s anyone else in the car or not unless they have their face pressed against the glass  (which would be creepy). I know I look like a nut case talking to myself, I can see drivers in other cars eyeing me suspiciously, but I really don’t care.   

 The other day Maggie and I were riding down 19^th Avenue,  is a six lane “highway” right through the city. There are lights at every corner, but they are timed and if you go 30 mph you can generally make it ten or twelve blocks without stopping. Because everyone is doing that, you have pretty much the same people next to you for several miles.  You can set the tone for the ride at the first opportunity. There may be a smile or nod and there may be nothing.   

Maggie was in the back slamming her hand  down (her sign for no) because I didn’t have her music playing. I told her to keep her shirt on while I remedied that situation. She started laughing as Beyonce came on. I was dancing along and putting my hands up, as Beyonce ordered. I was aware of the guy next to me looking at me dancing and laughing as we sat at a red light. He was trying to make me look at him but I ignored him. I knew I looked ridiculous, I didn't need him to remind me. 

All of a sudden Maggie started having trouble.  She was laughing so hard she started to choke and her scarf was covering her trach tube making it even harder for her to breathe. I slammed the car into park and reached back to help her.  It took only a moment and I was back ready to go before the light turned green.  But the laughter and dancing had stopped for the moment.

I glanced over at the guy next to me who was staring at me completely shocked. I smiled to myself  imagining what he had just witnessed. That poor guy had absolutely no idea what had just happened. He was watching me dance around and laugh like a goofball, then my affect changed, I disappeared behind the privacy glass for a minute and then reappeared with a concerned look on my face, put the car in drive and was ready to go.  

I just gave him one of those nods you give another driver when you make eye contact, as if to say, Move along now, nothing to see here. 

For some reason he did not stay next to me for long. Shrug.

Salute to Laundry

You cannot imagine the amount of laundry Maggie generates. There is at least one load a day, sometimes up to three. This is of course in addition to the normal amount of household laundry.  I have to stay on top of it or it swallows us. Generally I start a load every morning while we wait for Maggie's bus and then do another when the bus comes back.

A couple of days last week I didn't do that and things started to pile up. The pile gets so large the task becomes daunting I find myself delaying another day, which causes the pile to grow and so on.  I realized we were running out of clean scarves and I had to get things washed to replenish the supply. 

Maggie always wears a scarf around her neck over the trach tube and it is not unusual for her to through eight or ten scarves a day. Maggie has am impressive collection of scarves. They are in all colors and designs, many because people reading this sent them to her. We probably have fifty or sixty of them and use every single one. When the supply is running down, there's no more procrastination, I have to get on it.


Yesterday I devoted the day to getting caught up. There were at least seven loads down there and at least five of those were Maggie's. I folded things and put things away all day. The last of it was done last night while Steve and I were watching television. Folding laundry is mindless but necessary. Television is often mindless but entertaining. It's good to combine the two things

Steve was folding the last of the dozens of Maggie's scarves we washed yesterday. As I went to put the last of them away, I realized folding laundry may not be QUITE as mindless for Steve as it is for me. He didn't say anything, but left this for me to discover. He folded all the scarves normally - except one. The scarf in the American Flag design was afforded proper respect and folded like a flag. I could not help but laugh.

I have to wish my comedian husband a very Happy Birthday today.