Tuesday, September 29, 2009

Maggie was a perfect angel while I was at school. We also discovered a likely physical reason for her acting oug. It appears she is getting a UTI, and that makes everyone uncomfortable. It's no wonder she's protesting during changing sessions.

While I was there I snapped a couple of pictures with my phone. I'm still trying to get them over to the computer. Here's Maggie and Juan with Robert in the background. Maggie and Juan use their talkers to greet each other. She must have said "juan" 20 times and he would respond "Maggie." It was hilarious. It is also hilarious and very endearing that Juan, who is latino, has a talker with a British Accent. It makes him VERY exotic.


Just a quick check in from a busy week.

Mary Margaret is in trouble. You can tell because I am calling her Mary Margaret instead of Maggie. Her “wild thing” behavior continues. Generally, she saves it for one nurse, but she is branching out. The school nurse was having a very hard time with Maggie yesterday. I have to go to the school today to act as cop and all ‘round enforcer while she’s getting changed and cathed. An extra little stop in a crazy busy day.

I am not sure my presence will help, but it cannot hurt. We want Maggie to understand this behavior is dangerous and could result in her coming home. She loves school, so that should scare her straight. Seeing me there might make that threat more real.
Ahhh, nothing like knowing you are a threat to your children. Just gives me a warm fuzzy feeling all over.

I feel bad for Maggie. She thinks this is funny, or at least seems to and that makes everyone angry. But the laughter is not mirthful. It is inappropriate, both the behavior and her reaction to it. I think she is acting out against change. The transition to high school was seamless. This may be a delayed reaction to all the change. In addition, her teacher is gone this week. That little change could have put her over the edge. I think she is afraid and that makes me feel bad.

On the other hand, she could simply be an obstinate teenager and this is all behavioral. In non-technical language that means she is just a brat. That is possible but not likely. It is more likely a combination of factors.

It is too easy for folks to diagnose and decide issues for Maggie without considering things like personality and emotions. Like everyone else, Maggie is a puzzle, and all the pieces have to be considered. Even the ones with the rough edges.

Friday, September 25, 2009

Wild thing, I think I love you

Maggie can be a wild girl at times. Yesterday was one of those times. I am never sure what sets her off, but once it starts you know you are in for a long afternoon/evening. She is not upset or anything. In fact, she thinks it is funny. It is not. She kicks, scratches and carries on when we are trying to change or feed her. Ignoring her means she will pull on her trach or, if she is lying in bed, start ripping her diaper apart. She wants attentions, but when you give it to her she scratches. It is a trying situation.

Generally, these outbursts are not directed at me. It has happened, certainly, but I do not put up with it. I just grab her hand, tell her not to scratch, finish whatever she needs and walk away. If she grabs her trach I simply hold her arm, but I do not talk to her. It is all business. She seems to respond or more likely, she just gives up because she is not eliciting the desired effect. That is not true 100% of the time, but it works a lot.

Maggie’s afternoon nurse takes a completely different tack, one that is far less successful, but rather entertaining. The nurse is in her 70’s and speaks perfect English with an accent. (She is a Filipina) She has been here since Maggie was a baby and these two love each other. This nurse is the most frequent target of this behavior. Perhaps because of the way she handles it.

I work just outside of Maggie’s room. I can hear everything that goes on in there but I do not get involved unless they need me or Maggie is actually calling me. I listen and I am aware, but I would get nothing done if I engaged with the two of them all afternoon. The nurse needs help lifting, diapering and handling Maggie, which I do. Yesterday Maggie arrived from school already worked up. In fact she was acting out at school too, something she never does.

The nurse, Fely, was scratched right away. I heard “Maggie why are you scratching me. I love you and I take care of you, it is not good behavior to scratch.” I can tell Maggie is laughing. Then, lots of kicking of the side of the bed followed by a high pitched, “Maggie, Maggie Maggie, why are you acting so. I want to take care of you but you are making this very difficult.” Maggie is still laughing.

Mom enters. “Maggie cut it out. And Fely, do not talk to her; she is playing a game with you. It is not a nice game.” Maggie is compliant for about 30 seconds. We put Maggie in the chair. Fely puts a bandage on the scratch (a bit overdramatic, but that’s cool). I sit back down. Maggie is kicking the footplates on her chair and trying to arch back, but she is laughing like crazy. I can see her from my desk. Fely starts in again. (and the accent makes it here) “Maggie I am your nurse and I want to care for you but you are having bad behavior.” Maggie reaches out to scratch her again, but fortunately hits the band aid Fely has just placed on her arm. Fely’s pitch gets even higher, “ Maggie Maggie Maggie, why are you scratching me?”

Maggie’s laugh gets louder. Mom’s patience grows thinner.

I said let’s set up her talker, She needs something to do and she will keep doing this as long as she is getting the attention she wants from it. We do that. The nurse continues the chatter. I roll my eyes. Maggie gets her talker set up and pushes several buttons to make a sentence.

“Fely, I am good”

I stifle a laugh. Fely, in her accent says “Baloney”

Maggie laughs her head off. Then “Fely I am good, Fely”

Fely: “good girls do not scratch their nurses.”

Maggie laughs again. I am not interfering but thinking “let it go, already”

Maggie clears her talker and makes a new sentence: “Fely is good.”

I look up and Maggie is beaming at Fely, who is also smiling and says. “Thank you Maggie.’

They worked it out on their own.

Wednesday, September 23, 2009

What are your intentions, young man?

There is a budding romance between Maggie and her classmate Juan. They are becoming fast friends, which is great, but according to the nurse and the teacher, it's genuine affection. Though both kids are non verbal, they manage to express their displeasure if they are not seateed next to one another. Apparently a boy from another class is intersted in learning about Maggie and Juan scowls whenever he comes into their room.

I learned of this last week and have been enjoying hearing the daily updates. Last night I told my husband about it while we were both in Maggie's room. He immediately turned into Robert Young's character from Father Knows Best, a sitcom from the 50's

He siad "WHAT?" and put his head down next to hers and said "A BOYFRIEND, WHAT IN THE WORLD?" Maggie was laughing so hard she was hardly breathing. Steve continued pressing the issue. What are his prospects, what's his family like etc etc. Maggie loved it.

When she calmed down I just paused and looked at Maggie and gave he the big news. "Guess what dad. Juan can WALK! He doesn't use a wheelchair. He's a dreamboat"

Dad said, "oh, the athletic type, eh?" That sent her over the edge again.

Juan can indeed walk, but he's not exactly going out for the football team.
He's is a little slip of a guy, the one that stole my heart on the first day. I don't know what his disability is, but it's significant.

Still, he can WALK! From where Maggie sits - and she ALWAYS sits - that is big stuff.

Can it sustain a teenage relationship? Only time will tell.

Stay tuned

Monday, September 21, 2009

Curiouser and curiouser

It?s supposed to be 90 degrees here today. I just put Maggie on the bus in her jean jacket because the fog is so thick you can cut it with a knife. It will be interesting to see if it lifts and the beautiful hot weather is hiding underneath. Stay tuned. I will be complaining about the heat in just a few hours.
Yesterday we went down to Pier 39 ? in fact check out the Smile Box gallery on the last post . It was beautiful down there, the fog was burning back and the day was warm and perfect. I stopped at a bench to feed Maggie and realized I forgot her food. I had the tube and the water, but never put the can of food in there. Ulp. I gave her some water and we started back to the car. I always have emergency supplies in there.
We get out and about early and finish our outing as many others are starting theirs. As we returned to the car, many families were passing us heading toward the wharf and Pier 39. I pressed the button and to door opened and the lift came down. Steve was rooting in the box for a can of food. Maggie was positioned to load into the car and I realized we had a fan boy. This little guy was about three and he was FASCINATED by the ramp. His mom was trying to get him to keep moving, but he had to investigate this phenomenon. He was as cute as can be.
He looked and looked at it and I smiled at him and he said ?why you have dat and why her go in dere?? I said, ?that?s where she sits, see there?s no seat there and she can just sit in her wheelchair.? He cautiously moved closer to see inside the car. His mom was looking apologetically saying he?s in ?that curious? stage. I said it was fine, we would all be better off if we stayed in that stage longer.
He came a little closer and inspected the whole setup. He was like an engineer figuring out a problem. He was still several feet away and was not bothering anyone. He was just a curious little boy who still had the innocence to ask questions.
As he peered into the car and looked at Maggie?s chair. I heooked her feeding tube to her stomach and started opening the can of food. Holy moley! If he thought the wheelchair ramp was a curiosity, you should have seen him eying this. His eyeballs almost popped out of his head. He could not bring himself to ask, though and just slowly walked over to his mom, eyes never leaving Maggie. The mom was smiling at him and Steve and I were trying not to laugh.
He walked away hand in hand with his mom, still looking back at Maggie and us. Finally he raised one hand slightly and waved. Steve and I just grinned at each other. Maggie was already grinning because she was finally getting fed.

Friday, September 18, 2009

Courtesy of my friend Sharon

One day, long, long ago, there lived a woman who did not whine, nag or bitch...
( That would be me )

But that was a long time ago and it was just that one day.

Sleepless in SF

I didn't turn out the light until midnight last night. I was relaxed and comfortable for the first time in days. That cortisone shot really did the trick. About 80% of the pain was gone within a couple of hours. Apparently I can look forward to the remaining 20% disappearing in the next 24 hours. The relief will last for weeks and, coupled with the physical therapy, may take care of the problem all together. (fingers crossed)

It appears, however, that I have a side effect from that shot. Insomnia. This is very unusual for me. Because of the lack or predictability in meeting Maggie's needs, I have trained my self to sleep any time any where for any amount of time. A 10 minute power nap is not problem for me. I can lay down and fall asleep for as long as I need it or as long as possible, depending on the situation. Not this time, though.

I slept only 3 hours, woke up ready to face my day at 3AM. I lay there thinking about the million things I have to do to today and regretted the fact the few if any could be done in the middle of the night. I lay there for about 90 minutes and then came downstairs and started my day. The nurse was snoozing in the chair and Maggie was quietly sleeping. I let them be. I didn't want to freak her out.

After a bit I heard the feeding pump alarm go off and the nurse responded immediately. I really don't care that she snoozes, everything has alarms, including the SAT monitor. which measures heart rate and oxygen levels in the bloodstream. That monitor is essential and has a loud alarm if either changes to levels outside the set parameters.

Not sure how many of the million things will happen. Once I get Maggie off to school I may try to sleep some. I'm going to a play tonight that a friend wrote so I have to get some shut eye to avoid loud snores during the performance. That would be very difficult to explain. No, Bill, really it was GOOD. Don't mind me.

Have a good Friday!

Thursday, September 17, 2009

Steroid User alert

Well it looks like my pitching career is over. No more split finger fast balls for me. I have a torn rotator cuff and capsulitis (frozen shoulder)[thank you Grace and Fiona for the diagnosis] caused by impingement of the two bones.The tear "should" heal on its own and I will go to Physical therapy for the other, which is exactly what I wanted.

He came at me with a large needle filled with cortizone and some other steroid to deal with the inlammation. That was NOT pleasant. But if that's all it takes, I can live with it. Now I'm sitting here with an ice pack on my shoulder because the novacaine is starting to wear off.

This injection will help in the short run and maybe take care of the whole thing. If it's not "continuing to improve" in six weeks I have to get an MRI and they talked about surgical interventions. I stopped him there and said, let's just wait, shall we..

He said, "try not to lift your daughter."

Ok. that's helpful.

But I will try.

Wednesday, September 16, 2009

Sticky Wicket

I'm in a bind. I have to figure out a way to stop lifting Maggie.

Whatever this injury is to my arm/shoulder/neck or whatever is getting worse every day. My doctor appointment is tomorrow, finally. I asked to be called if they had a cancellations, but it didn't happen. I have been counting the days until the appointment. Now it's less than 24 hours away - hopefully that's only one more night of not sleeping because every movement sends screaming pain down my arm.

It does not take a rocket scientist to know that I will have to stop using my arm for a while. I purchased a sling yesterday, just to keep myself from using it. I'm not sure if this is the right thing to to do or not, but it seems to help somewhat. Because I had the sling on I couldn't use my left arm to close the car door, or to release the parking brake or to shut off the alarm that the wheelchair lock makes when Maggie's not in the car. Guess what? I have ANOTHER arm that was capable of doing all those things. (Ok, I took the brake off with my foot). That was helpful. This will help me rest it for the easy things, but there are other things that I cannot avoid. Lifting Maggie is one of them.

Maggie's regular day nurse cannot lift her at all. I have to be here to get her out of the chair and onto the bed for her at least every three hours. If Tim or Steve are here they can do it, but they aren't generally around - they are either at school or work. Maggie can't wait because her medical procedures are needed and she has to be in her bed.

I had a helper in here for several months but she abruptly quit. No drama, no problem, she just stopped showing up. She didn't even say goodbye to Maggie, which is upsetting and disrespectful. Still, I'm desperate. I asked her to return for a few weeks but she declined. It seems she'd rather be unemployed than work with Maggie. Ouch! I know this woman has her issues, but I helped her out when she was down and I really wish she would extend the same courtesy. I do get tired of being used like that.

We do have a lift system in the ceiling, and I simply have to start using it more. It is cumbersome and a lift/transfer that would take a person 10 seconds will take five minutes with this thing. Further, I'm not sure it will help with resting my arm because we will have to get the sling underneath Maggie in the chair somehow, which means I need to adjust her several times to get it in place. Those adjustments will be just as difficult. We do use it to transfer her to the shower, but getting the sling under her while she's in bed is much easier and it just stays under her in the shower.

My other option is to use a different nurse for a while. And I could, but I can't. Fely has been here for 15 years. I simply cannot do that to her at this point.

I guess I'm going to try to find another person to be here in the afternoons for a while. It needs to be a female, for Maggie but even a strong high schooler will do. It's kind of a strange job, because the need is for someone for about 15 minutes - maybe 30 when she gets a shower (it takes two to make sure she doesn't fall). They can stay longer and read a story or something

Wanted: strong female to assist in the care of disabled teenager, hours 3:30 -3:45 PM Monday-Thursday. If you want to return at 6:30 - 6:45, I will pay for that too.

I'm sure the line will be up the block like the nannies in Mary Poppins.

Monday, September 14, 2009

Queries from Strangers Part III

This is an ongoing series about the stupid things people say to or about Maggie and our life. I’ve written other installments. Just click on the "stupidity" tag in the list of categories to the right and you will see those posts.

This makes it sound like I’m fending off these comments every day, and I’m really not. I still get more than my share of stupid comments, but either it has slowed down or I’ve grown immune because I don’t hear this stuff so much anymore. Nonetheless, well meaning people should understand that a lot of their comments are not welcome at all.

Some of you wanted to know how I respond to dumb remarks , and I have snappy comments for many. The subjects in this post, however, are met mostly with a stony silence. To quote an excellent phrase my brother used recently, a whisper can be louder than a shout. These categories are: 1). She is not a pet and 2) religious observations should be offered silently. (And just to be clear, I have a dog that I adore and I have a religion that works for me.)

I cannot count the number of times Maggie has been compared to someone’s cat or dog. I cannot think of a single time this wasn’t completely offensive. I realize you love your pet and that's great. Nonetheless, emergency trips to the neurosurgeon or calling 911 because Maggie isn’t breathing do not compare to taking the cat to the vet. Maggie’s often frantic emotional responses should not be likened to your dog’s fear of sirens or thunder. No disrespect to your cat, dog, horse, pig, fish or any other pet, but PUHLEASE.

The worst of it is when these comparisons are made by medical professionals. One example (of hundreds): When Maggie was little she could not tolerate riding in the car. We could go about a mile and then she would start screaming. S C R E A M I N G. And that made her turn blue. It was unnerving and did not make for safe driving. Her wheelchair needed some repairs and rather than come to San Francisco, as was the custom, the woman wanted me to drive to Stanford, about 45 minutes south of here. I simply said, “I’d rather wait for you to come to SF, I just cannot come down there. It would be unsafe because Maggie can’t tolerate it. She said, sympathetically, “my cat is the same way. I just can’t do anything because of it.’ My silence was pronounced. There was a pause and then she said, uhhhh, I guess that’s not the same thing, is it.
No. It’s not. Comparisons to healthy children are hard – appropriate, but hard. Comparisons to animals are not ok.

The Religious comments come fast and furiously. We used to go to church with Maggie all the time, but we take her only rarely now. Religious comments when we are at church are acceptable, even if they make me a bit uncomfortable. We are there; the subject is apropos. However, strangers stopping me in the park to tell me that God chose me, or Maggie, or people telling me that Maggie is an old soul and gets to enjoy this life with people caring for her, or people asking me if I thought I was interfering with God’s work by having all these surgeries (honest to God!) are not. And I REALLY resent being told that I must have done something bad because I’m being punished. Here’s news: I am not the devil and I am certainly not a saint. Neither is Maggie.

I will make a sweeping generalization here. People who are willing to share their religious views in public assume everyone agrees with them. They do not think these are "opinions" or "views," they are trying to share what they believe is the TRUTH. It may be your truth, but it may NOT be mine.

To those of you sharing applying their religious views or rules to my family, know this: Even in the event I agree with you, I will still not discuss this. The fact that my daughter has a feeding tube does not automatically dictate where I stand on end of life issues, for example, and thank you but NO! I will not discuss and will certainly not debate this with you. No one should not mistake my silence as acquiescence or agreement. My religion is private and personal to me. I wish yours was to you.

Smile at her, say hello to her. Pray for her, pray for me, send positive vibes, do whatever positive thing your religion or philosophy does. We thank you for that. But don’t come up to me in the grocery store, or in the park, and interpret my daughter’s situation from the standpoint of your religion. It makes everyone uncomfortable.

Go tell your cat or dog or fish or pig.

Friday, September 11, 2009

Weekend visitor

When Maggie gets excited about something, she pumps her left fist in a rapid-fire movement. (Think Arsenio Hall.) Ask her if she wants to go to the park, if she likes Mission High, or any other question that would give an enthusiastic YES! She answers with a big smile and a dizzying movement of her raised arm. I am not sure when this started, sometimes it takes a while before you notice a trend, but we all know it now. We can even ask what she does when she is excited and she gives a little performance. That is done with a sly grin or a bored expression that says, “I’ll do it, but I’m not your monkey.” It’s hilarious.

Last night Maggie did not want to go to sleep. She was completely exhausted when she came home from school. So much so, in fact, that she just started crying, and that is very unusual for her. She slept for about 45 minutes and was back to her happy self. Maybe that nap threw her off or something, but when the nurse arrived (late) at 11:30, Maggie was wide-awake. I tried to stay out of her room as much as possible to avoid more stimulation, but of course, I have to be close enough to suction her when she needs it. I told her she had to sleep because she has school today and because there is a surprise this weekend.

Surprise? Her eyes just opened up as wide as can be as if to say “spill it, mom.” Ok, Maggie, guess who is coming home this weekend? She sucked in some air and waited. There was really only one possibility and we both knew it. I looked at her with wide eyes and said “Yep! EDDIE is coming home.“

I had to step back to avoid getting fist pumped right in the eye. She had her whole body into it. Obviously, this was not the smartest thing to do when I was trying to get her to go to sleep, but her reaction was priceless.

Eddie is #1 son, who is a senior in college in Nevada. He lives in Nevada now, past the era of coming home for summers etc. We only see him every couple of months and even then, it’s generally a blur. This time is no exception. He is coming home because some local buddies rented a house together and are having a house warming party on Saturday night. Of course, he has a bike race on Saturday so he cannot leave until 3 or 4 in the afternoon, drive four hours, come here, shower and then go to the party. He will go back on Sunday. I will see him for all of 20 minutes because I have to meet some friends early Sunday morning. Maggie will get those 20 minutes on Saturday evening and then get to spend time with him on Sunday.

It doesn’t matter, all Maggie wants is to see him enter and say “Whassup Mags?” or simply “MAGGIE!” is his fake baritone voice. That alone would entertain her until Thanksgiving.

Maggie does not even know yet that we are all going to go to the Collegiate National Mountain Bike Races at Northstar in October to watch him compete. He will be so busy at that event (he’s in charge of coordinating A LOT of it) she may not see him at all. Further when she does see him he may look like this

I know that would get her fist pumping.

Wednesday, September 9, 2009

The Pen is Mightier than the Sword

Okay, it is a keyboard rather than a pen and I rarely use a sword so I do not have comparison data. Nonetheless, I can attest to the power of the written word. Ok, the walls of Jericho didn’t come a tumblin’ down, but it is a coup.
UCSF, like any ginormous institution, is a hierarchy of interconnected corporate departments. While the medical care is delivered in an efficient manner, the behind the scenes work of keeping the medical center operating, compliant with laws and efficient takes an army of people. Of course, changing anything or getting anything accomplished means endless meetings and justifications. Unless you get to the right people first. Two of my blog posts Maggie World: Access this! (January 9) and Maggie World: Friends in Tight Spaces (july 29) [not sure if these links are working] made their way to the right person who in turn sent them to the department heads who can make a difference. It was those department heads who came to the meeting last night. These are three corporate bigwigs wanting to hear the issues first hand.
In the beginning of the meeting, we introduced ourselves and explained our role on the council. There are both family members and staff on this council. The family members have children with a variety of issues, from the occasional hospitalization to the chronic and ongoing issues to those whose children have passed away. It is sobering for anyone to sit at the table and listen to our collective experiences. By happenstance, I was seated next to the biggest of the three wigs and was the last to introduce myself. I told them that Maggie was a frequent flyer, she had undergone more than 70 surgeries, had hundreds of admissions, and then said, and I may be the reason all of you are here tonight. I joked that I have had many wonderful experiences at UCSF too, and I have even written about those, but the bad ones make the rounds.
They listened with interest and concern to the stories several parents shared about difficulties with both access and attitude toward our kids in wheelchairs. One gave somewhat corporate answers initially, (a reflex, undoubtedly) but when called on that, started dealing with the parents on a more human level. When she spoke of the general decline in service in the world, she was reminded this is a HOSPITAL, not Exxon. People arrive at a hospital in a heightened state of emotion and the non-medical staff needs to be cognizant of that and of their role in either exacerbating or easing those emotions.
Of course, we heard of the difficulty in finding the space necessary to make everything accessible, and I completely understand that. In my own home, I have to climb over furniture to get around Maggie’s wheelchair half the time. My thought, and that of many other members of the council, is to work on the attitude of the employees while the physical/structural issues are being addressed. Can you teach manners and etiquette to adults who did not learn it from their parents? Maybe and maybe not; but they can be held accountable for job performance. Interpersonal skills should count in a service-based organization. If they did not learn them as a kid, they better learn them now, or suffer the consequences of not meeting job requirements.
Because if they don’t that one crazy lady with the blog will just write about it again. But, if writing about the bad experiences helps make changes, or even get the right people talking about it the experiences are almost worth it.

Tuesday, September 8, 2009

100 years of strong women

The long holiday weekend comes to a close just as the Bay Bridge re-opens. Hmm. The Circle of Life. (Ok, that's a stretch).

The circle of life is never far from my thoughts these days, though, as I clean out my aunt's apartment. There are so many things, most of them just the incidental items of her life; but many trigger happy memories and others are puzzle pieces of family history that need to be connected.

Yesterday I started boxing up books and rifled through the pages of each to remove any papers or identifying information. I found a bunch of pictures in a book about Hollywood, of all things. (Not sure of the significance of that, if any). Among those pictures was one of my grandmother Rose who died 20 years before I was born. There aren't very many pictures of her and I stopped and looked at it for several minutes. I can see so many of my relatives in her face, especially my cousin Moira. But I also see Maggie. They were born almost exactly 100 years apart but there is a resemblance.

That made me happy. It's important to be connected to the past even if only by the shape of your nose and some delicate features.

Friday, September 4, 2009

On the DL

I am injured. I have been ignoring the pain and discomfort for a few weeks and, surprise surprise, it is not going away. In fact, it's getting worse every day. Now I have to do something about it. Arrgh.

The injury is to my shoulder, or arm, or perhaps even my neck. The pain is in my upper left arm, maybe above the bicep, but it hurts whenever I rotate my shoulder. Guess what? I rotate my shoulder a lot. Putting a purse on my arm, putting a shirt or jacket on, reaching to close the car door, and dozens of other activities are all extremely painful. I am completely left handed so everything is done with that side.

For some reason the pain does not increase when I lift Maggie but I know that lifting her is exacerbating the problem. She weighs 66 lbs and I have to lift her dozens of time every day. In addition I have to reposition her in the wheelchair a lot and those movement are particularly difficult. Thats not going to stop, though, so I have to factor that in to the recovery.
As I sit here there is a dull pain in my shoulder and arm, but if I move into a certain position and I'm not sure exactly what it is until it happens the muscles start spasming and the pain is excruciating. That happened in the middle of the night last night and I scared the bejeebers out of my husband when I started yelling.

So today I have to find a doctor to deal with this. Ironically, my sister the nurse, works for a shoulder specialist. She is encouraging me to go up to Santa Rosa to see him, but I just don?t think that's practical. It's tempting because I know I will get attentive care, but it?s over an hour each way and who knows how often I'd have to go. I just cannot be so far away and take so much time when I can find someone locally.

Whatever I do, I have to do it soon. I cannot be on the disabled list. I am central to the team.

Thursday, September 3, 2009

Labor Day

Labor Day Weekend is here. It is the traditional end of summer. It used to be that school started the day after Labor Day, so it was important to cram as much fun as possible into the last weekend of summer. That is not as true these days because over the past several years many (if not most) schools have opened a week or so before Labor Day. Nonetheless, it is a weekend to be enjoyed.

Steve and I are going to a family party. His cousin and her husband are having a big anniversary celebration and the entire family is invited. That will be fun. This particular family has been the center of partying and fun over the past several years. They threw great weddings for each of their daughters. None of the rest of us has kids interested in or old enough for marriage. (It seems extended family gets together only at weddings and funerals. Weddings are a LOT more fun.) They live in Pleasant Hill, an aptly named suburb about 25 miles east of here, an easy jaunt over the Bay Bridge and beyond. When the invitation came for this party, I happily accepted.

That was before I realized the party was on Labor Day weekend. Especially Labor Day Weekend 2009. Getting anywhere will be a nightmare.

The San Francisco Bay Bridge, a major artery connecting the City to Oakland, Berkeley and all points east (including Pleasant Hill) is closed this weekend. The Bay Bridge, which carries over 280,000 vehicles every day, including weekends, will be closed from 8:00PM tonight to 5:00 AM Tuesday September 8. They are planning a mind-boggling feat of engineering and execution to install a stretch of roadway. (You can read about that here: http://sfgate.info/cgi-bin/article.cgi?f=/c/a/2009/08/23/MNHU198AG1.DTL) This is a big deal here. That means over a million cars that would be using this bridge over the next few days have to find another way in and out of the City. Or another way to Pleasant Hill.

There are other ways, of course, We could head north over the Golden Gate Bridge and then east over the Richmond San Rafael Bridge and then cut back south to get out to Pleasant Hill. (an extra 40 minutes) or go south to the San Mateo bridge and cut north to get there (another hour). Alternatively, we can take BART – the Bay Area Rapid Transit – and leave the car in the City. Bingo. It will still take some extra time, but it is the most efficient of the three choices and the most responsible too.

The only problem with that plan is in case of an emergency. If something happens with Maggie, we cannot get back here quickly. I am uncomfortable with that. Not so uncomfortable that I won’t go, but it will definitely be at the forefront of my mind as we board the train, as we mingle at the party and on the way home. It will likely make the evening a bit shorter because I will be anxious to get back. This may sound alarmist, but that’s just how we roll. It is actually a huge leap forward for me. Up until about a year ago, I would not even consider going at all if we did not have a car. A few years before that I would not have gone across the Bay, with or without a car, if Steve were not home with Maggie.

She is stronger and tougher than she used to be, but she does not like it when we are both gone. Spoiled? Hmmmm. Perhaps. When she gets agitated, things tend to happen. But not this time. Nothing will happen. Of course, I am going to ask Tim to stay close to home, just in case. Tim cannot really intervene the way Steve and I can, but he is pretty good.

If nothing else, his presence can keep his mother from trying to swim home.

Tuesday, September 1, 2009

High School

Maggie has been a high school student for a full week now. She loves it. She loves the kids, the noise in the hallways, the bus ride, the teacher, everything.

Except the new schedule.

The morning bus is here at 7:10 A.M. That means she has to be dressed, cathed, fed, in her chair, hair brushed, talker programmed, oxygen tank filled, suction machine charged, everything loaded onto the back of her chair, down the elevator, through the basement and out in front of the house 75 minutes earlier than last year. Most of this happens while she is asleep. I finally wake her to put her jacket on and get her into the chair. She gets on the bus half-asleep.
This ungodly hour is forcing me to get things ready at night. I have a new system. I program the talker, put it in the bag and on the chair and park the chair where it can reach the charger. Same thing with the suction machine. That way they are charged and ready to go and already loaded. I have to do the oxygen in the morning because it would just bleed out overnight. That only takes a minute, though.

Her new classroom is very different from the middle school. The setting is a very large very bright room, which is great. It is a kitchen – two actually - and hearkens back to a day of better budgets when schools offered cooking classes. Apparently, an occasional class utilizes the ovens etc, and it will be part of the curriculum for Maggie’s class. That will give Maggie and her classmates the opportunity to mingle with the typical student population on their own “turf,” which is good.

There is another distinct change this year. Maggie is not the only student with a communication device. For the last two years in middle school, she was the only one routinely using the “talker”. She received A LOT of individual attention, which was great, and she was the QUEEN BEE for sure. Now, five of the six students in her class have them and use them. Maggie will have to earn the Queen Bee role now. (I have little doubt that will happen). Instead of the individual attention, Maggie will have to keep up with the other kids and that will likely result in huge strides in her abilities to manipulate the device.

When I went into the classroom, I was greeting the students. Three of the boys I know from before. There is one other boy and a girl that I did not know. I was greeting the girl and I heard a synthesized voice say, “Hi, my name is Juan. Hi my name is Juan.” It took me a minute to realize he was talking to me. (There is LOTS of activity). I went over to him and said “Hello Juan, I’m Sally, Maggie’s mom. It’s very nice to meet you.” He shook my hand, beamed at me and stole my heart.

I hope he and Maggie go to the prom.