Friday, October 31, 2008

Meals on Wheels

The waiting is over. The Maggie costume is complete and she is off to school to wow all the middle schoolers. My husband is the creative genius. I say “how about this?” And he just creates it. Maggie was very well pleased.

We call it Meals on Wheels. (with all due credit to the wonderful organization of the same name)

We had to go with the chef, since one of her favorite things to say is “Cook please!” (see entry Sept 18) She is wearing my chef’s jacket that has been altered with duct tape (amazing stuff!) and of course the hat. But the stove is the hit. Steve even made burners by cutting paper into coils and then spray painting them. The oven door even opens.
There is a question how long that door will last, Maggie’s feet are strapped in, but even with that, her extension is pretty extreme and the door was bulging before she boarded the bus. For sure, the oven will not heat evenly. Ha!

You know the bus driver and his famous Warning! Warning! Danger Will Robinson! (see entry Sept 24)as the lift comes down. (Maggie still laughs at that every day.) This morning he shouted, THE OVEN IS EXTREMELY HOT DANGER! DANGER! Maggie was hysterically laughing. She is pretty excited.

Happy Halloween Ghosts and Goblins. It is a rainy day in San Francisco. Hope it stops in time for the trick or treaters. If not I am going to have to eat a LOT of candy.

Thursday, October 30, 2008

Gotta go gotta go gotta go right now

I am blessed and cursed to have my daughter’s care handled by a top-notch medical center that is located about ½ mile from my house. Blessed, because that is what she needs and it is in my back yard. Cursed because it is an enormous place, big enough that it actually has its own zip code (true!), and it has thousands of employees who apparently never speak to one another.

Once again, I have been waiting for the doctor’s ok to renew a prescription. We have been waiting for days. This is for a drug that Maggie has been on for at least seven years and will be on for the rest of her life. However, I cannot get them to renew the Rx without weeklong delays and numerous phone calls. Arrgh. Apparently if there is any sort of issue, they just ignore the request for a refill.

When I finally reached them last month, I was told that Maggie was overdue to see them to have the tests to confirm that the condition she has had since birth (14.5 years ago) is in fact permanent. Ok. Let’s overlook how ridiculous that is for a moment. It is also untrue.

She just had the test done a few months ago when she was hospitalized and saw this doctor then. Oh, that doesn’t count, we have to do it outpatient. Um…why? Because we don’t have those records. Um… why? It’s the same medical center, it’s about 50 feet from your office. Well, we need it in our files as well. Um…why, oh never mind. Let me just made the appointment.

And I did. Or I tried. That woman did not make the appointments. It took about six more phone calls to get the right person. In addition, her voice mail was full for several days. I finally got through and the appointment is next Thursday. Only we ran out of medication yesterday. I ordered the refill last week. Now we are in the same game as last month. Only this time I will skip all the conversation and just get to the point. We are coming in next Thursday. Just give us enough to last until then.

You should know, this is not a narcotic. It is for her neurogenic bladder. There’s not exactly a hot black market call for this drug. At least not to my knowledge. I’m not sure I want to know if there are folks ready to deal on street corners for meds to calm the pressures in bladders.

I do know I would not want to hang out on such a corner unless there was a bathroom very close by.

Wednesday, October 29, 2008

Everyone Votes

Maggie had homework last night. She had to decide who she was going to vote for for President. Their class is having an election today. Maggie doesn’t really have any political leanings that I am aware of. But her homework was to learn the names of the candidates and study the pictures to figure out who was who. We didn’t study issues, just names and faces. Believe me for Maggie and her classmates, that is abstract enough. Frankly, that’s probably what 75% of voters do anyway.

We worked on the names first. I didn’t want her to just pick a face. She had to know the names too. I asked her if she was going to vote for each candidate separately. She signed an emphatic NO! to Barack Obama and YES! to John McCain, YES! To Ralph Nader and YES! Cynthia McKinney (Green).I asked her again and she reversed it.

No wonder the phone has been ringing so much around here. We have one of those undecideds right here in our own house.

We kept working on it until she had one consistent yes and several nos, rather than the other way around. Amazingly, she chose the same candidate as her Dad and I did ;-). The fact that I told her she was going to have to live at school if she chose the other one has absolutely NOTHING to do with it. No influence here.

Then we went to the pictures that the teacher had printed out for the students. I laughed out loud when I saw them. Nader was missing completely. Obama was smiling and comfortable looking – a professional shot on its own page. McKinney and McCain shared a page. But you couldn’t look at both at the same time because one shot would be upside down McKinney was smiling with an American flag behind her. John McCain was tugging at his collar, as though he was either embarrassed or really hot. I’m not sure that was intentional, but only one candidate looked presidential.
No influence there, either. Ha!

Tuesday, October 28, 2008

29 Hours

I went away. I took a break. I left Sunday morning around 11AM and returned just as Maggie was getting off her bus at 4:00PM Monday. She was very happy to see me. The other kids on the bus were excited to see me too. They were worried when I wasn’t there in the morning. A change in routine is not a welcome thing for the students on the special Ed bus.

I went away with my high school girlfriends. These women have been my friends for a very long time. One has been my best friend (BFF) since I was in the first grade. The other two since high school, but they also went to grammar school together. Actually, all of our parents knew each other, so we really go back even farther, but the friendships solidified in grammar school. This was not a reunion. It is a regular thing. We see each other a couple of times a year at least and are in touch by email or phone all the time. When you have been friends as long as we have, there are no secrets. You cannot put on airs or BS about anything. They knew me when, and I knew them. We sat in a cabin owned by the sister of one of my friends and ate junk food, drank alcohol and laughed our heads off. We did leave to go for a walk. At the very least, we had to see the River, which was about 50 yards from the house.

The three of them travel together regularly. Each of them has grown children and a lot more freedom than I do. I join in the travels when they stay close to home. Or, I join in for part. The last outing was an overnight in a hotel in Downtown SF. I could not leave Maggie overnight because I didn’t have nursing coverage in the morning. The Hubby is busy supporting the family and is not always available to be the nurse on a workday. So, I went to dinner and went home. It works out.

There are different limitations on me than on others. Do I wish that were different? Sure, sometimes. Am I sad about that? No. Not at all. Do I have to justify my life to others? ALL THE TIME. And I really do not see why.

Though they are dramatic and constant, the limitations on me are just as confining as, say, financial limitations are on another family. I bet no one would tell a single welfare mother that she needed a vacation in Hawaii. Unless they are prepared to give it to her, it would be a cruel thing to say. Obviously, she cannot afford that and it is not an option for her.

But I hear stuff like that all the time. Even a doctor told me that was what I needed. Did you have to go to medical school to figure that out? Of course I do. Who doesn’t? However, if it’s not an option, it’s not an option. Period.

No, I will not be coming to visit. I cannot get on a plane and leave. And bringing Maggie I not a realistic option. No. I will not be taking a trip to Europe, there are no vacations planned. Dinner out is a possibility if I can get someone here to help the nurse. No, I do not work outside the house because I am on call 24/7. Yes, that is frustrating after all my legal training, but that is just the way it is. We’ve come to grips with it. Why can’t everyone else?

My life is full. Very full. Maybe too full. It is stressful. It is complicated. It is scary sometimes. But guess what. It is also great. It is like a little secret among parents of disabled kids. We are members of a club that NO ONE wants to join and it’s pretty good. We get rewards that other parents don’t get.

We get to relish the little things, because there are no little things.

We get welcomed home after our mini vacation with a look of pure delight and we get the kids on the bus screaming hello because they missed us in the morning.

And sometimes we get a break. For 29 hours. And we come back refreshed and ready to do it all again 24 hours a day, 7 days a week until the next 29-hour break. Maybe next time it might even be with my husband.

A girl can dream.

Sunday, October 26, 2008

The Answer is NO

It was great to have Tim home for the weekend. Maggie was thrilled when she got off the bus on Friday and he was there. He brought her upstairs on the elevator and she just beamed at him.

We did not see him much, of course. Both nights he was out on the town. He did hang out with Maggie as much as possible, though. We walked over to the brand new California Academy of Sciences on Saturday. It was a ZOO. We went into the aquarium and could not maneuver the wheelchair because of the crowds. It is very cool but Maggie was freaking out with all the people so we just turned around and left. Good thing we are members and the admission price was not an issue. We just walked around Golden Gate Park.

As we headed for home, Maggie started signing NO! Quite emphatically. Her sign for No is putting her hand down into her lap or onto her wheelchair tray if it’s there. She has only recently started using it to initiate communication. I did not really realize that until I translated for Tim. He has only been gone two months, so this is pretty new. Maggie has been able to answer a question with her Yes! And NO! for a long time, but initiating the communication is a different matter. She started slamming her arm down into her lap. We were waiting to cross the street that takes us out of the park and Maggie was saying No! No! No!

Tim said, “Maggie what are you doing?" I said she doesn’t want to leave the park. She doesn’t want to go home. Is that right Maggie? Yes! Yes! Too bad girlie, we have to get home and feed you. She looked glum and when we turned onto our street, she started again. Tim was laughing at her and that made Maggie laugh too.
In other news, I am taking off this morning and will not be back for maybe 30 hours! Eek! I am leaving Maggie with Dad and heading off with my high school friends over night. There will be a thousand laughs about stupid things. I’m looking forward to it.
See you Tuesday!

Friday, October 24, 2008

Grab Bag

Maggie is continuing to work on her communication. She relies on her communication device, a DV4 from Dynavox. It is a voice output device; a computer-generated voice speaks the words or sentences that Maggie chooses. This machine is sweet and has more functions than a trigonometry text. It can function as an MP3 player, show pictures, make storybooks and much more. That means it is far more advanced than I am.

The technology in this area is moving so fast. Maggie’s DV4 is so 2006, it is not funny. In fact, this particular model has already been discontinued because we are on to bigger and better things. Of course, from a technology standpoint I am stuck in about 1985, so this is more than I can ever hope to learn. I’m not sure whether or how far above Maggie’s head this device is; but, because she relies on me to do the programming at home, she is forced to stay at my level.

Right now Maggie makes sentences, tells jokes, and conveys her “news.” I program in her news from home that she shares at school and the teacher programs in her news from school. Maggie navigates to her news page and keeps each side informed about the other. Her teacher is very good about including the things an 8th grade girl wants to share. I hear all about the girls who come into Maggie’s classroom and what they are into. (FYI, Jordan, Sierra and Kathleen are agog about the new High School Musical movie opening today!)

Like everyone, Maggie is working on mastering her skill at one level so she can move to the next. Jokes? Not a problem. News? Piece of cake. Sentences? Work in progress. She can do it and does it all the time, but it is very complicated. She has to scroll through numerous choices to select the noun. That means she has to first choose if it is a person, place or thing, then find it, then select it. Then she navigates to the verb page, chooses the right tense (hopefully) and then navigates to the Object page to find what she wants to say. This might mean scrolling though several pages. Now she is adding “please” a lot, which is another step.

Sentences like “mom, come here”, and “Dad, let’s read a story” are easy for her because she is conveying something she wants and has done them so many times. When she is building her own new sentence, it’s a different story.

Click, click click, “MOM”

Click click click click click, “IS”

And the anticipation builds; what will she say? If she knows we’re waiting, she’ll just laugh and make us wait longer. There are many possibilities, happy, sad, sick, smart, good, magical, stinky, mean, angry, big, etc. When she wants something, it’s always a wonderful description. When she is angry or feels neglected, she will pick something not as nice. When she is showing off, she just waits and waits. I say….”Be nice” and she laughs harder and chooses “stinky” or something similar.

Click click click, “HAPPY.”

We always respond to these sentences. Either “thank you,” or “Yes, you’re right, I am smart, brilliant, in fact.” Or, “Hey, watch yourself sister.” Communication is a two way street. The best way to make her use that dynavox in a realistic way is to show her she is communicating.
Sometimes you’ll hear something like “Mom is Tuesday.” Or, “Dad am magical”. Therefore, it is a work in progress.

The teacher has a new incentive program for Maggie. When she completes a perfect sentence she gets a sticker, and for every 10 stickers she gets to go to the grab bag and choose any gift she wants. He sets the standard for how complicated the sentences are. For example, if Maggie communicates her needs to the clerk at the local store and says thank you appropriately, she gets a sticker. Now she is working on including “and” in her sentences. So “Mom is smart and angry.” Or, “Dad is good and big” get her rewards.

She’s hit the grab bag a couple of times already. It truly is a grab bag. I have no idea where the items come from. One day last week she received a toy set of baking tools. She loves that! Yesterday she came home with a set of artificial finger nails! Ha! Just what a 14-year-old girl with limited motor coordination needs. It would take at least a week to get those on her and then she would poke her eyes out.

Maggie knew right away that was not something she wanted. Apparently, she made a sour face when she pulled it out of the bag. She decided last night that she wants to give that to one of her girlfriends.

Today she starts her quest for the grab bag all over. I think her first sentence might be, “Get some better stuff!” Perhaps mom needs to donate items for the bag.

Wednesday, October 22, 2008

The Devil You Know

I guess I am spoiled. Maggie has had the same core group of nurses caring for her for several years. When I had to make the switch to this home based system, they all came along. There are some shifts that are filled by others, but mostly it is these four. These are not young women. I would put each of them at around 70 years old. I know a couple of them are actually older than that. Because of the age and strength issues, I have to play back up a lot. To be honest, there are times that bums me out; but generally, it works out fine.

One of my “regulars”, in fact the nurse that has been with us the longest, has been out for two weeks with a shoulder injury. She did not do anything specific, but the pain was increasing all the time until it finally just required a break. This may be the beginning of the end of her time with us. She has spoken of retirement in the past and this may hasten things a bit. I have been trying out new (and younger) nurses during her absence. All I can say is I hope she wants to work another 10 years.

It is easy to find fault in people. I have been focusing on my need to be here as back up because of the lack of physical strength of the nurses. Guess what? Younger stronger nurses need back up too. And I have had more cancellations among the younger nurses who do not have the loyalty and who have conflicts because of their busy lives raising kids, etc. So, as they say, stick with the devil you know.

Last night I had to attend a meeting of a nonprofit group I work with. (Check out The nurse has been here about five or six times before. I had a helper in the house with the nurse until about 7:45 and my husband was supposed to be home by there, but often he’s a bit later. The nurse called me at 8. She had been alone with Maggie for 15 minutes. I left the meeting to talk to her. She was concerned because Maggie was “very congested.”

Before you worry, you should know Maggie is ALWAYS very congested. She needs suctioning every minute or so. That is her baseline.

I asked all the appropriate questions, most too gross to go into and included, “is my husband home yet?” “No. I think you need to come home.” I said, “Let me call him because he’s probably on his way home.” I tried his cell. No answer. I hesitated but then I went back to the meeting and everyone just stared at me. I said, “she’s fine, but the nurse is skittish. Steve will call me in a minute.” He did. He had been looking for parking when I called and was already in the house. Maggie was perfectly fine.

I am not criticizing; Maggie is a lot of work. I am just saying that my core group of nurses had better start drinking from the fountain of youth or something. Because they know Maggie so well, they have spoiled me. And they have to stay here forever.

Tuesday, October 21, 2008

Boyz on the Move

Both of my sons are on the move this weekend. The older, Eddie, is heading across the country to North Carolina to compete in the Collegiate National Mountain Bike Races. He does the downhill and double slalom events, I think. The events chage from race to race. Downhill is consistent, but others change around. Hopefully he will return to school next week with all his bones still connected and all his teeth still in his mouth. He told me he never wanted to be mentioned in this blog. Sorry, dude. This is
B I G. Good luck.

The younger son, Tim, is coming home! He has use of #1 son’s car while he is racing and he’s coming home for the weekend. That’s good. It has been two months since we’ve seen him and I know Steve and I are both looking forward to it. But that pales in comparison to Maggie’s excitement. She is very happy that he is coming back. She’s been stuck with just her old geezer parents since he left.
Maggie and Tim have a special bond. They always have. He just scoops her up out of her wheelchair or off of the floor, plops down in the chair with her, and asks about her day. He will give her the play by play of whatever game he is watching and ask her opinion on game strategy. She just laughs. I’m pretty sure he confides in her too, because she is VERY good at keeping secrets. She adores him. Don’t get me wrong, she loves both of her brothers; and Eddie is very good to her too. But there is just a connection there between Maggie and Tim that is different. It’s probably because it was just Maggie and Tim after Eddie left for school. They had to team up against the evil parents.

When Maggie is excited, she pumps her right arm really fast. It is very funny to see. Think Arsenio Hall’s “whoop” move and put it on a fast speed. She started doing that about a year ago and it’s very consistent when she’s excited. I ask her if she is looking forward to seeing Tim and then I have to get out of her way or that arm will mow me down.
Wait until Thanksgiving when she has BOTH of them here. We can harness that arm energy as an alternative fuel source.
Tim and Mag the day he left
for school

Monday, October 20, 2008

Where have you been?

Caring for Maggie is generally more work than one person can handle alone. There are moments it really takes two, but generally, it is about 1.5. That puts tremendous limitations on us and particularly on me.

We have a nurse in the house two shifts a day but I am always close by. If I do leave the house, it is between scheduled treatments and generally only for an hour or so. If I have to be somewhere for an extended period, I plan it when my husband is home to do the backup work for the nurse. It was easier before the boys moved away to college, because they could help the nurse if the need arose, but now they are gone and we have to make do.

Once in a great while we do actually go out together and leave the nurse alone with Maggie. We never leave town and we always have the car so we can be home pretty quickly if something comes up. We leave the phone number of our neighbor, another nurse, and hope for the best. I know there are those reading this saying, “take time for yourselves” and all that. However, unless you are living here, you have no idea what we are dealing with. This works for us. Not perfectly, but it works. The level of care needed places limitations on us, but it also comes with rewards.

As a result of these limitations, we have a daughter who is extremely spoiled. On the rare occasion that we do go out, she lets us know that she does not approve. And if the nurses change shift and we are not home, watch out! Saturday night was one of those nights and I had to deal with Maggie’s teenage attitude Sunday morning.

We were invited to a dinner/birthday party for Peter, an old friend of Steve’s. We haven’t seen these folks in several years because they moved far away. The party was in the home of another of Peter’s friends. It was in Marin County, across the Golden Gate Bridge at least 40 minutes away. That meant we could not get home quickly in an emergency. Steve’s brother and his family were visiting for the weekend and they could step in to help if need be. Therefore, we went and had a nice time.

The afternoon nurse worked from 3PM to 11Pm. The party started at 4:30, but that was a little early for us. We helped get Maggie situated for the evening and left around 5, arriving at 5:45 or so. We stayed until after 11 and arrived back home just before midnight. Maggie was asleep and the night nurse was on duty. She arrived at 11 and stays until 7AM. I went to bed because I have the next shift.

We did not get much sleep that night because the raccoons returned about 2:45AM. I heard the dog and knew immediately something was in the basement. I woke Steve and he and his brother worked for 45 minutes to get three raccoons out of the basement. Steve armed himself with a ski pole and a stick while his brother chose a broom and a mop from the weapon cache. I got a camera, but that wasn’t met with as much enthusiasm as I hoped. Maggie slept through the whole thing, but I kept checking in because the noise was incredible. We returned to bed at 3:30, but the excitement prevented sleep. I still had to get up to let the nurse go home.

At 7AM I was up and getting the rest of the night’s report from the nurse. Maggie was glaring at me. The nurse said Maggie had been awake for a while and had refused to smile. This is unusual for Maggie who smiles almost all the time. I told the nurse Maggie was mad at me. Maggie brought her hand up to her mouth, her sign for ”yes.” I said, “She’s mad because a new nurse came and I still wasn’t home.” Maggie signed yes again and her lower lip began to quiver. I asked her if I came back, and she signed yes, but was really fighting tears. I said, “Don’t I always come back” She gave a slow, sort of tentative sign for yes. I said, “SO what’s the problem?” Maggie tried to keep the pout, but her eyes were sparkling. She then gave up and grinned from ear to ear. The nurse was amazed. I was not. Maggie has been doing this for a long time.

She is spoiled rotten. She expects us to stay within those limited confines that her care mandates. She misses us, and particularly me, when we are gone. She does love her mother, and that is reward enough.

Friday, October 17, 2008

Who's calling?

I had a baking bee in my bonnet yesterday. Even though it was 85 degrees in San Francisco, I felt the need to bake banana bread and apple cake. It’s autumn, even if it is summer outside. I was up to my elbows in bananas when the phone rang. Naturally. I thought about letting it go to voice mail, Maggie was already home so I knew it wasn’t any emergency involving her. In reality I never do that, every phone call could be that Nigerian lottery I keep hearing about. I wiped off my hands and picked up the phone.

A young girl said simply, “This is Sierra.” I wasn’t sure who that was and for a moment, I thought it was a wrong number. Then it hit me, “Sierra from Maggie’s school?” “Yes, can I talk to her?”

Seems simple enough. One 8th grade girl calling another. Except that is the very first time that has ever happened. No one has ever called Maggie before.

Sierra spends one period a day in Maggie’s classroom. She has some education issues of her own, but she is in every other way a typical 8th grader. She is into clothes and boys and having fun.

The logistics of this were a bit complicated. As you know, Maggie does not speak. Because of the trach tube, she does not make any sound at all. Hence, a phone conversation is a tough thing to pull off. I put the phone to her ear and Sierra started talking. Maggie was laughing her head off, but without the sound, Sierra was not getting any feedback. I told Sierra to hold on and I used the remote phone to listen to what she was saying and held the extension up to Maggie. That defeats the purpose of the teenage girl phone call, having a mom listen in, but we have to adapt. I role-played what Maggie’s responses would be. It was not hard to translate. Maggie was ecstatic.

Sierra asked about Maggie’s weekend and I told her Maggie’s cousin was coming. Since we plan to make tie-dye shirts, we promised to make one for Sierra. There was a pause and she said,
“Maggie, you’re my best friend”

I swallowed hard.

If I were really channeling an 8th grade girl I would probably say something like” Oh, I like Taylor better.” But the role-playing stopped right there. I told her that Maggie thinks Sierra is her best friend too.

The call ended. My heart expanded. Maggie continued to beam.

Sierra ­IS her best friend. Maybe mine too.

Thursday, October 16, 2008

Mail call

Isn’t it nice when you go to the mailbox and find something other than a bill or an ad? Well, I received a letter yesterday. A letter. It was from Maggie.

You might wonder how she did that. I have to give all credit to the school and to Maggie’s intelligence and drive. Maggie’s school program is amazing. She is in an AAC class. That stands for Assistive and Augmentative Communication. The technology is designed for people of all abilities to communicate. Even those with severe motor impairment like Maggie and her classmates can access the technology and “speak” through communication devices or write letters and school reports through specialized computer programs. Access is different for every person. Maggie uses a two-switch method. It basically acts like a computer mouse. One switch moves the cursor through the various choices and once she is where she wants to be she hits the other switch to select. Because we are so highly intelligent, we refer to these as her “mover” and her “chooser.” Maggie can really maneuver those things.

So, the program is in place and Maggie just makes the appropriate selections and then hits “print”. As part of her school day, she practices driving to the mailbox in her power chair. She has written letters to her brothers and always starts those the same way: “I think you are mean.” (She is the annoying little sister.) There have been letters to Dad in her backpack and I think she mailed one to grandma before. However, this was a first for me.

It is short, so I am going to give you the whole thing:

Tuesday, October 14, 2008

Dear Mom,

I think you are beautiful. I really really love you a lot.

Today at school, I worked very hard, but also had lots of fun. I learned about manners. Please and thank you, please and thank you, blah blah blah!

Tonight, I hope that I can slam the refrigerator door open and shut.

Your Beloved and Only Daughter,
Maggie (name written in pink pen with assistance from teacher Joe)

Maggie does love to slam the refrigerator door open and shut. That’s what she does when she “cooks.” My favorite part is definitely the blah, blah blah. She is not big on manners.

I couldn’t even tell you what else came in yesterday’s mail.

Wednesday, October 15, 2008

Keep 'Em Rolling

Yesterday was wheelchair repair day. We have been waiting for it for over a month. Maggie received a new wheel chair in the summer and it is just not right, Maggie looks like she is sitting in her big brothers hand me down. When you consider the ridiculous price of these things – in the thousands of dollars – it should be right.

Admittedly, Maggie is a tough one to fit for a seat. She needs full support, she does not have any trunk or head control so that has to be part of the package. Maggie is small, but very strong, and she never stops moving. Never. It is part of her disability. She twists and squirms all over the place. Many children with cerebral palsy have similar movements. They are known as athetoid movements. Of course, it is more than that with Maggie. She is a wild child, irrespective of the athetoid cerebral palsy. That means you can’t make a nice custom seat because she will move out of it. So getting the chair right is a work in progress.

The problem with the chair repairs is that they need both the chair and Maggie. She is placed in the chair to see if the alterations will work. Then she is taken out while they do the actual work. Of course, without the wheel chair, we just have to hang out on the mat table. And it takes a couple of hours. The repair place is not far from Steve’s office, maybe four blocks. He suggested we come over, but we could not do it without the wheelchair. I considered rolling her through the streets of San Francisco on a shower chair, but decided that was too weird. Therefore, she lay on the mat table and I sat there making sure she did not fall off. For almost two hours.

Maggie was not interested in her dynavox or the books or anything else. There was a life-sized doll, or at least a Maggie sized doll, near the mat table. It was soft like a rag doll but she had long hair and cool clothes. That kept Maggie entertained for a while. Maggie knotted the dolls hair and tossed her about like a wrestler. If I made “oof” and splat noises when the doll smashed against the table, Maggie laughed. We named her Dolly Lama and spoke of peace and of being in the moment while Maggie tossed her hither and yon.

The chair is improved. Not perfect, but improved. They cut down the back of it and trimmed the sides so she doesn’t look like she is in someone else’s chair. But now her head is so close to the bolts which attach the headrest to the chair that it seems dangerous. We have to figure that out. Even without that issue, there is more to do. But next time they don’t need Maggie. Her chair will go back to the repair shop and Maggie will go to school in her old chair. That one is creaky and held together with duct tape, but it will do the job for a day.

Until the next repair.

Tuesday, October 14, 2008

No News is Good news

Maggie had Monday off school for Indigenous People’s Day. It’s one of those days that is celebrated by school kids, government workers and banks but almost everyone else is at work. In fact, Maggie had an appointment late in the afternoon. I arranged to have a nurse here during the day so that Maggie could be cared for and entertained while I worked and ran errands etc. The nurse was ill, so everything changed. Working was out. Showering was out. Maggie came with me on the errands. That was day 3 pretty much on my own. Steve was out of town on a fishing trip. My shoulders are sore today from all the lifting and from loading and unloading her and the wheelchair in and out of the car so many times.

Once the mundane errands were done, we had a great time taking the dog for a walk in beautiful Crissy Field. It was a spectacular day here. The S F Bay looked more like a lake. Everything was still and calm. There was a big fire on Angel Island on Sunday night and the whole island was still smoking in the middle of the Bay. It was wild. Actually, it was a bit hotter than I expected. Both Maggie and I had too many clothes on. I didn’t really realize Maggie might be over heating. I’m always behind her when I’m pushing the chair. When it dawned on me that I was uncomfortably warm, I checked on Mag. She looked wilted. We came home to change clothes, do all the nursing chores, and just recover a bit before the late appointment.

Maggie is a smart girl who needs a lot of interaction. She doesn’t watch television or movies because of her visual impairment. She’s sort of bored with all the diversions around here. She needs her brothers to come home and amuse her. She needs more action. But I was tired. I got down on the floor with her. I picked up the newspaper and read Miss Manners and Dear Abby aloud to her. It’s important to use voices that “fit” each character. She found that particularly amusing. After a bit, Maggie looked sleepy so I snuck off to the computer.

I could hear Maggie in there rustling around a bit on the living room floor. All the “nursing” issues had been takes care of and she didn’t need suctioning or any other intervention. But she wasn’t asleep either. I figured I would just leave her be and hope she grabbed a quick nap before we left.

Apparently she had other plans. I left the newspaper within reach of her. She quietly ripped up the entire section we were reading. Perhaps she’s tired of all the bad news, or she disagreed with Miss Manners’ responses. Who knows? She just decided no news was good news.

So I didn’t get to do the Monday crossword puzzle. Too bad, Monday is the easiest puzzle and I feel so smart when I complete it.

I sure hope Steve didn’t have plans to read that when he came home.

Monday, October 13, 2008

Chow Down

I love food. Everyone does. It satisfies, nourishes and provides social opportunities for everyone. We gather over dinner. We meet for lunch. We go out for brunch. We celebrate with food. There are birthday cakes, wedding banquets and dinner parties. We also reward ourselves with food. Dessert? Why not? I deserve it. Personally, I have been rewarding, nourishing and celebrating excessively, but that is a completely different story.

We have so many options. There is food for every taste and mood. Within six blocks of my house, I can get health food, junk food, Mexican food, seafood, Chinese Food, Thai food, Japanese Food, Burmese Food, comfort food and many other types. It is culturally specific and a common denominator at the same time. Everyone eats. Food brings people together in every culture and across cultures.

Think about your childhood, or about your own kids. Every kid has their likes and dislikes about food. For some it becomes defining. My older son was so picky I made a separate dinner for him until I wised up when he was about eight years old. My sister did not like to drink her milk and when my parents stopped nagging her about it, she found it was a good place to hide her peas. She eventually was caught. Ha! Kids and food are good fodder for stories.

Maggie does not get to take part in any of that. She is fed through a tube in her stomach and has been since the day she was born. That is 14.5 years of exclusion from all the cultural, social, and other aspects of eating. Further, she has never tasted any of the plethora of cuisines available in our neighborhood or any others. This does not mean that Maggie has been excluded from celebrations, she has not, but she cannot take part in them as others do. She does not get to take part in the passing of food or the likes and dislikes of particular dishes. Her wheelchair does not even come all the way up to the table so she sits a bit back from everyone else. That mean she is physically removed as well.

Maggie occasionally visits schoolchildren to explain and educate them about her differences. Of all the questions they have asked over the years, my favorite has to do with the feeding tube. A little girl asked, “How does she eat chicken?” The child could not fathom that Maggie’s different way of eating encompassed different food. The answer, of course is, “she doesn’t.” Not chicken, not birthday cake, no vegetables, not anything. She eats a medically prescribed liquid food called Vivonex. It is delivered once a month in several cases of 8 ounce cans.

Maggie’s communication device comes with several phrases already loaded. One of those is “what are we having for dinner?” Ironically, she loves to hit that over and over. And every single time I say Vivonex with an excited voice and every time she laughs her head off.

I am generally numb to this. It's just the way it is. That feeding tube is her lifeline – or one of them. Without it, she would not be here, so I am thankful for it. Nevertheless, occasionally it just strikes me as so completely unfair.

Today is one of those days, and it hit me for the strangest reason.

Mother’s Cookies closes its doors today. I will miss those crunchy oatmeal cookies dipped in milk. Maggie won’t becasue she never tasted them or any others. That's just not right.

Friday, October 10, 2008


October is a great month. It means the best weather of the year in San Francisco. The summer fog is gone. The days are warm and clear and the nights crisp and cool. The month starts out hot but by Halloween, it’s cool.

There are always lots of activities scheduled all over the City for this long holiday weekend. In politically correct San Francisco the holiday is knows as Indigenous People’s Day. In North Beach, the traditionally Italian part of town, it’s still Columbus Day and there’s a good old fashioned parade on Sunday. There is a great Columbus Day Bazaar all weekend at Sts. Peter and Paul School in North Beach. The energy is amazing. The whole area is alive with activity. In addition it’s the culmination of the Navy’s Fleet Week, so the waterfront is abuzz with activity, and every year the Blue Angels perform on Saturday and Sunday.

Even the Blue Angels are controversial here. One supervisor tried to have them banned, but they didn't get anywhere. I admit it is a bit dangerous to have these fighter jets coming so close to the buildings downtown, but it is so exciting! The precision flying is awesome. You’re afraid to look and you can’t look away. And the noise is frightful. Thankfully, the ear splitting sound of fighter jets overhead is not something we have to hear every day. Rather than complain about it, though I’m just thankful I don’t live in a war zone where this noise would be the least frightening thing about the jets.

It’s hard for Maggie, though. She can’t see the jets and the noise freaks her out. We just have to wait it out. The practice runs started yesterday so we will hear the jets for four straight days. It only last about an hour each day and the noise is intermittent, not constant. She’ll be fine but it’s a bummer when it’s happening.
We are looking past this weekend to Halloween. Maggie has had some great costumes in the past few years. My husband has set the bar pretty high and we are still tying to figure out what to do for this year.

Last year’s race car was a huge hit. My brother brought Maggie a Ferrari scarf to cover her trake. That inspired the whole thing. The Dale Erhard suit from Goodwill was a huge find. That might have been a little too good, though. The kids at school were rushing Maggie around as fast as possible and the whole wheel chair went over. So we need something that won’t endanger her.

The Viking look a couple of years ago was also a big hit. Steve made the viking helmet out of a scary helmet and some goofy braids and the breast plate was aluminum foil over cardboard.
My personal favorite was when she dressed as a devil complete with flames on the side of the wheelchair and she went as "Hell on Wheels." (sorry, can't find that picture)
We need something that fits with a person
sitting down – and/or something that lends itself to good and easy decorations for the wheelchair. And it has to fit on the bus.
Ideas are welcome.

Wednesday, October 8, 2008


Everybody defines family differently. For me it is a question of where to stop. Where does family stop and everyone else begin? When the connection exists and I really feel it, that is family.

I am part of a huge family. No matter how you define it, mine is big. I have a husband and three children; the five of us comprise my immediate family. Or one of them. Though I lost my dad last year, I have my mom and my parents in law. I also have four sisters, two brothers, a brother in law and a sister in law, each of whom have a spouse. In addition, those unions have of course produced children. I have 21 nieces and nephews. These people too are my immediate family. That is another 40 people. We won’t even go into cousins, aunts and uncles.
As unusual as it may be in this day and age, I get together with many members of my immediate family on a regular basis. We are strange. We like each other. Many of us live within about a 50-mile radius and it is fairly easy to get together. Those farther away are never out of the discussion or away from our thoughts.

It is easy to extend the concept of family to the next level as well. The spouses of my siblings and my husband’s siblings all have families and I am comfortable counting those people as part of my extended family. Those people I do not see as often. For extended family, getting together takes something big, like weddings or funerals.

Sadly, we had that opportunity this week. One member of my extended family, my sister’s mother in law, passed away this week. She was a lovely woman and she will be greatly missed by everyone. The services were lovely; they were sweet, thoughtful and moving.

I knew I would see my mom and my siblings at the two services. Though it may be inappropriate, I clipped wallet size shots of Maggie’s school picture to give to my sisters. Apparently, one sister dropped her picture. I shouldn’t have given her one at such a time. She was focusing on her own “immediate” family, who had just lost a beloved member.

Imagine my surprise at the funeral yesterday when her father in law, who had just lost his wife, came up to me to tell me he found Maggie’s picture on the floor of the Funeral Home. He took it home and placed it on his refrigerator. His refrigerator. With all of his grandchildren.

There were probably a hundred people at the house following the funeral. It was a warm gathering honoring a person who spelled family with a capital "F." Everyone was admiring the pictures all over the house and I felt somewhat stupid, but extremely proud, that Maggie was up there with his grandchildren, some of whom are her cousins.

I felt like we were really part of that family at a most important time. It was like a warm blanket. Here was another family, an extension of mine, but a strong circle of its own. It is like a Venn diagram, with overlapping circles. We were in that overlap area yesterday.
Maybe for some this is not family. It’s too distant to fit that definition. Not for me.

It is an honor to feel part of such a family.

Tuesday, October 7, 2008

Put up Yer Dukes

Maggie's new school picture came out pretty good. If you look closely, you can see her teacher’s arm behind her, holding her up. She looks so grown up. She looks so sweet. She is not.

Maggie has a terrible habit of pulling on her tracheostomy tube (trach). She is dependent on that trach to breathe, so we have to get her to break this habit. Unfortunately, Maggie has learned that doing this will get her the attention she wants. Even if it is negative attention. Generally, this behavior is reserved for me. She doesn’t really do it when the nurses are with her but as soon as I come into the room she will start. She knows that I have to grab her hand and get in her face. She finds that hilarious. She is manipulative and we all know it, but we do her bidding anyway.

We cannot ignore it because if she pulls the thing out, which she has done often, she has just a couple of minutes before she is in respiratory trouble. When it comes out, I have to work quickly to replace it. I have become quite expert at it. I can have the thing changed in about 30 seconds. Once it is in she’s safe, but then it has to be secured. That is a little more difficult, generally I can do that in about a minute, but sometimes I need another set of hands so I can thread things.

Lately Maggie has started this behavior even when I’m not home. I am sure the thing bugs her and once she starts playing with it, it is like a compulsion. Because of this, and all the complexities of her care, Maggie needs more than one person to be with her all the time. Or at least more than one person in the house. It’s a drag at times that we cannot have more freedom, but that’s just the way it is. A couple of afternoons I have a helper come in to work with the nurse so I can be free. I may have to start doing that all the time.

Last night Steve and I had to go out. Together. At the same time. The nurse was alone. We took care of all the scheduled procedures before I left so Maggie cold just hang out and use her communication device, the Dynavox, while we were gone. We were only going to be gone a couple of hours. I set it the Dynavox and we took off. Because we were going to a funeral service, the nurse knew not to call us for anything other than an emergency.

For some reason the Dynavox would not work. Of course, I was out the door before this became apparent. Maggie was in her chair. Mom was gone. Dad was gone. The dynavox was not going to distract her. The nurse was there – and she is EASY to torment. So let’s start pulling on the trach. The nurse was exasperated, but she kept her cool.

When we came home, Maggie was wearing these “gloves” on both hands. The gloves were provided during a hospitalization to keep her from pulling on tubes when she was younger. The look like boxing gloves. The fingers are behind netting on one side and have a large padding on the other. Because she is so clever and can pull them off, they were taped into place. Maggie can still use her hands, but cannot isolate her finger to flick out the trach.

She looked like Muhammad Ali. I walked into her room and she waved a gloved hand at me. I said, “Well it look like someone was not behaving.” Maggie grinned mischievously and the nurse rolled her eyes. Steve walked in and just said “uh-oh” and Maggie went into full laugh mode.

It’s dangerous. It’s aggravating. It’s problematic. Nevertheless, when she gets what she wants – attention – and starts laughing, it’s very hard to keep a straight face.

Maybe she should be a boxer for Halloween.

Monday, October 6, 2008

Hardly, Strictly

Maggie went on a field trip on Friday. Every year the 6th graders in every San Francisco public school is invited to the “Hardly Strictly Bluegrass Festival” (HSBGF) in Golden Gate Park. San Francisco Unified Schools has nearly 60,000 students and about 4,000 of those are 6th graders. One field in Golden Gate Park was filled with students.

The HSBGF is a gift to the city from Warren Hellman, a wealthy financier who loves bluegrass. It is on several stages in the Park on Saturday and Sunday and it is free to anyone who wants to go. The show for the kids is a couple of hours on Friday. Maggie is in a class for 6th, 7th and 8th graders, and the class stays together, so she’s been able to go for three years in a row.

The first year Maggie was completely freaked out by the loud sound and the large number of kids. She looked sort of terrified throughout the concert and then cried for an hour when we got home. Last year she was just out of the hospital, and hadn’t attended school in a few weeks. We went to the concert from home for a short stint. Maggie was so happy to see her classmates and dance with her teacher that she wasn’t freaked out at all. This year she loved it. Maturity, experience, whatever. She’s into it now.

San Francisco and Bluegrass are two concepts that do not generally share the same sentence. That is especially true for the very ethnically and culturally diverse population of San Francisco middle schoolers. But the kids love it on Friday and the weekend concerts are packed, so Mr. Helllman’s generosity is very appreciated.

This year the kids had a very special guest at their show. After the young blue grass artist Ruby Jane played to the screaming kids, the show changed. The headliner for the kids show was M.C. Hammer. Not exactly a name in bluegrass. He came on and announced “I don’t “DO bluegrass – it’s HammerTime.” It was like 1992 all over again. He invited a bunch of kids onto the stage and they were dancing widly. None of these kids were alive for his first blast onto the scene and they probably don’t even know what Hammer pants are. But none of that mattered. When he sang “U Can’t Touch This”…the kids went wild. So, bluegrass may be making some inroads but the school kids were delighted with the old rapper. Even if his lyrics are clean.

It really was “Hardly, Strictly Bluegrass” with the emphasis on HARDLY.

Friday, October 3, 2008

Birthdays and Hamsters

October 3rd is a great day. It’s Steve’s birthday. We love to celebrate Steve’s birthday around here because he is younger than I am. If I stop celebrating mine, and make a big deal out of his, he will catch up. Right? Today is also my nephew Patrick’s birthday. Happy b-day dude.

Steve decided to spend his birthday backpacking and fishing. That was fine. Maggie and I can hang back and eat all the cake. I actually invited some girlfriends over for the evening. The weather changed everything. This is generally the warmest time of the year in San Francisco and very nice throughout Northern California. Not this year. The first storm of the season should hit this evening and in the area they were planning to backpack that could mean snow. He is staying here. I cancelled the girlfriends and Maggie and I will cook up a nice dinner and make a cake instead.

This quick plan change seems to be the norm this week. I have things scheduled one on top of
the other and I am supposed to be in two places at once every day for the next week. How does that happen? I am just minding my own business riding this hamster wheel. It not only goes faster and faster, but also it seems to have various off-ramps and detours of its own.

Today I need to get Maggie launched, which is a frantic race to the bus. After she’s gone I have to head downtown to retrieve some records from a doctor’s office – and I have been instructed to bring a shopping bag. Then I will meet my cousin and my aunt to review some old family pictures quickly and excuse myself to get back across town for Maggie’s field trip to the Blues Festival. (Tough duty),When Maggie heads back to school I will go straight to the fish market and vegetable store and get home before Maggie’s bus because we don’t have a nurse this afternoon. All errands have to be completed by 3:30. Then Maggie and I will cook the dinner and make the cake. This is impossible – but trying will be fun.

Next week is very much the same, every day. Two places at once. I should ditch the hamster wheel and get rabbits. They’re faster and they multiply.

Thursday, October 2, 2008

Carla's coming!

It's been a couple of days - and thanks to those of you who have missed Maggie and me. Everything is cool here. We're just spinning that hamster wheel as fast as we can. It's been appointments, meetings, skittish dog and contractors. Brisco is all recovered from his encounter with the raccoon, but he's a little freaked out and we've kept him pretty close by.

This is an exciting day. Maggie has a visitor coming this afternoon. Her second cousin Carla is coming over. Carla is seven and her mom Moira and I are first cousins. Carla met Maggie at last year's family reunion and has been asking to visit ever since. She is fascinated with Maggie's communication device. We are looking forward to this. You might find this hard to believe, but Maggie doesn't have a lot of kids come over to visit. My friend's daughter Ann Marie likes to visit with Maggie and now Carla. Those two girls are definitely very high up in my book. Maggie's too.

Carla will be the first to see our new ceiling track lift system. It was installed over the last two days. It is a device that will carry Maggie from her bed to the shower and back again. It is suspended from the track installed on the ceiling. It will make our life easier and Maggie will be safer. Taking a shower will now be like a trip to Disneyland. We tried it out yesterday and Maggie thought it was hilarious. The contractor was delighted at her joy. I think he felt like he had done a good thing. He was right.

I can't wait for my nephew Jack to see it. Jack is the same age as Maggie. When he was little he often told me that we had the BEST toys in our house. That's because I would let the kids use 60cc syringes for squirt guns and other medical equipment we weren't using. Jack even tried Maggie's pulmo-vest, a device that goes on like a vest and vibrates to help clear secretions. Jack was the only one small enough back then to use that thing. He would put it on and try to talk but his voice would be all shaky. He's 14 now and already 6' tall, so that's no longer an option.

I asked the contractor yesterday what the weight limit was for the ceiling track. Maggie only weighs 61lbs, so I'm not too worried about it. Still it's good to know. Since this device is designed for an adult too, its capacity is more than we will even need. The limit is 440 lbs. Needless to say, it should last for quite a while.

Jack and the rest of the cousins will have a great time at the next family party. Carla can spread the word to the extended family, which seems to be about 1000 people.

Our reputation for having the BEST toys remains intact.