All Hail to Thee

I attended St Rose Academy, a small Catholic girls high school. Those of you who have preconceived notions of the piety and reverence that went on in schools like this may be shocked to learn that it was a raucous good time. Those of you who attended similar schools will not be shocked.

St. Rose was in the most beautiful building. It was built as a school but resembled more of a grand mansion. The cornerstone of that building said 1904, but the school was in existence for 42 before this building was completed.An earlier building had been destroyed by fire. The place survived the 1906 earthquake and fire. Sadly, though it did not survive the 1989 earthquake. The building was so badly damaged in that quake that the girls then in attendance could not return. The building had to be razed. Classes were handled off site and the school closed for good in June 1990. It was the end of 130 year run. 

Geez, that means the youngest St. Rose girl is pushing 40. I don't know how that can be when I'm only 29.

If your mother attended St. Rose and you followed you were a "rosebud." There were always several in each class.Maggie will not get that chance (disabilities notwithstanding). With her feisty nature, she would have made an excellent St. Rose girl. I was not a rosebud because my mother went to Presentation High, another girls Catholic school. Presentation is gone too. In fact, many are closed, and it didn't take an earthquake. When I attended high school there were 10 Catholic girls high schools and 3 Catholic boys highs schools. Today some of those schools have merged into coed schools, but many have closed. Today there are 3 small girls schools,  2 small boys schools and 2 larger coed schools. (My boys attended one of these). Times and styles change.

Tonight, however we will take a quick trip into the past. There is a mini reunion of St. Rose girls for the Classes 1973 to 1978. One or more of the women organizing this event has the great idea of having some of the St. Rose women "adopt" or mentor girls from Immaculate Conception Academy (ICA), one of the three remaining girls schools. It's a great idea because if St. Rose was still around we would probably be contributing to an alumnae fund, so why not spread the sentiment. Whether people decide to join this cause or not, tonight should be a good time. It will be a ton of laughs.

 I might just roll up my skirt for old times sake. And I might not.  

Double Dutch

Some of you have been kind enough to encourage me to put Maggie’s stories in book form. Honestly, I would love to do that and hope someday to make it a reality. At this point,it’s more a matter of organizing and editing what I have already written rather than starting from scratch. Still, it is a daunting task and something I approach in fits and starts when I need to go full steam ahead.

Even in this day of electronic book readers, there is something about a BOOK that is so inviting. A book tells you to plop down in the easy chair or to put a couple of extra pillows behind yourself and get comfortable. You can carry a book around with you and forget it in the coffee shop where someone else picks it up and reads it. It’s a slow motion connection to relaxation and enjoyment.  And to know people were reading something I wrote? Delicious. Who wouldn’t want to see their name on the cover of a book?

Actually, that’s the only part of my book I have completely planned – the cover.  If I’m going to dream about this (rather than work on it) I might as well have it pictured in my head.

The title will be a reference to the essay Welcome to Holland a little piece of prose known by almost every parent of a disabled child. The writer, a mother of a child with down syndrome (I believe), compares having a disabled child to an unplanned trip to Holland when one was expecting to go to Italy. While Holland isn’t the expected destination, and all the sights of Italy will be missed, the traveler eventually realizes that Holland has its own benefits – it’s beautiful, the people are kind and it is full of flowers.  No, it’s not Italy, but it’s not bad. It’s just different.  

I have  love/hate relationship with this piece of writing. Originally, I loved it for its simplicity.When Maggie was a baby I found it a helpful way to come to grips with the foreign world I found myself part of.  As time went by, though, and the distance from Italy grew  farther and farther every day, I grew to hate the essay for the very same simplicity. I felt it oversimplified and cheapened the existence I was living. Other parents of disabled children I have talked to feel similar. One mom I know simply says F** Holland and another says it should be called “Welcome to Somalia.”  It is more comforting to those without a disabled child because they THINK they can grasp an understanding of what it’s like – and they can tell themselves it’s not bad, just different. If no one else will say it, I will: raising a child with disabilities is always different, it is sometimes great, but it is often very very bad.

What then will be the title of my book that may or may not ever materialize? 

“I Think This Might Be Holland.”

Despite the "hate" part of my love/hate relationship with“Welcome to Holland”, I have to acknowledge its role in the world of parenting a disabled child. It is iconic. Besides that, I have the perfect picture to go with it.  In 1980 – yes thirty years ago – I went to Europe with my lifelong friend Nonie.  We were in our 20’s and went for over six weeks with backpacks and train passes. It was a great time and we travelled through several countries.  A year or so ago Nonie found some pictures from that trip. She was handing them to me one at a time. After so many years the various places and adventures from that trip blend together. She was  trying to remember each one saying, I think this is Germany, I think this is Spain, etc etc. Then she handed me this one of me and said in a perfect dead pan  “I’m not sure  but I think this might be Holland.”

I knew there were some big shoes to fill. 

Hot Damn! Visitors!

It is another beautiful day in San Francisco. It is hot for us, 93 yesterday and about the same or hotter today, but it’s nothing compared to what LA is dealing with. (108 yesterday).  Because this weather is so short lived in San Francisco, the city is not at all set up for this.  Except for high rises and shopping malls, nothing is air-conditioned. All around town widows are flung open hoping to catch the smallest whiff of a breeze. People look great and happy in the morning but wilted and wiped out in the afternoon.

Maggie looks wilted all the time. This is too hot for her and we just pour water into her tube to keep her going. I know it will not last long and she will be fine, but she is not comfortable. Having to sit in that chair with the black neoprene seat covering is awful. It is like a sweat machine on a cool day, so you can only imagine how she feels now.   

She has been enjoying the last couple of days, though, because we have had a visitor. Maggie is always thrilled to have another person to entertain.  My friend Grace stayed with us for a few days while she was in town; this is her second visit in a few weeks. Grace and I went to high school together, but she moved to New York City 30 years ago. She is the cookbook author I've written about before.  Last night as I sat in my tank top trying to get the window to open farther, Grace sat in a sweater laughing at us complaining about the heat.  She forgets the very narrow range of acceptable temperatures we have her in SF. Anything below 50 is brutally cold and anything about 80 is incredible hot. I am not sure Maggie and I would make it in New York City.

Grace left this morning, but it will not be long before Maggie has more visitors. I spoke to Eddie yesterday and he is coming home on Saturday because he has a bike race in the Bay Area on Sunday. It is perfect timing because Sunday is Steve’s birthday.  Maggie is excited that her brother is coming home; but that was only the beginning. Eddie said some of the bike team members might stay here too and I said that’s fine. He said they can sleep in tents in the back yard. The antennae went up. What? How many guys are coming? Eddie paused and said,"I’m not sure yet, but there were 17 this weekend. "

Seventeen?

 Seventeen college bike riders staying in this little house? WHAAA? And they are each bringing at least one bicycle? Not sure where it will all fit or how we will figure out the bathroom situation, but what the heck.  Of course, I said yes. It is the last time because Eddie is graduating in December. They will be here all of 12 hours, arriving after the race on Saturday and leaving early Sunday morning. I will put the feedbag on and send them to their race with a hot breakfast. I told Eddie they all have to bring a present for Dad’s birthday.

Maggie will be delighted to have a completely new crew to entertain. Steve and I will greet them like this

Drive by

Sorry, the internet connection in this house seems to be melting with the extreme San Francisco heat. San Franciscans are delicate and have a very small range of acceptable temperatures and that apparaently applies to our internet connections as well. It's fixed now and I will post soon. For now, though I have to cool off a steaming hot Maggie. She has a heat rash all over her back.

Friday!

It's Friday, and it's currently 79degrees in San Francisco with more of the same forecast for the weekend. Summer has arrived!   Yes, I know the date, SF is always just a little out of step with everywhere else, weather is no exception.

Maggie is a little peaked, so we will probably take it a bit easy. Tomorrow morning we will walk over to Golden Gate Park to watch her friend A.J. play soccer. It's early in the morning and we can enjoy the weather without getting too hot, walk the dog and cheer for the soccer team all at the same time.

I like this time of year. The hubbub of starting school is over and the wildness of the holidays (Haloween to NewYear) hasn't started. There are few if any demands. I wish I coule bottle these days and spread them out for use over the more hectic times of the year.

Enjoy your weekend all.

Rude Awakening

I was awake early this morning. Around 5:30 I considered getting up and starting my very busy day, but I was too comfortable. I sort of dozed in my warm bed putting off the inevitable. I am up by 6:15 anyway, so I might as well lay around and enjoy the last half hour or so. It was delicious. 

That moment ended abruptly when I heard the night nurse yelling. Maggie broke her trach tube. The nurses in the house are LVN's not RNs and they are not licensed to deal with the trach except in an emergency. If I'm here I do it. I'm sure if I weren't here they would handle it fine - even if they had to call 911. 

I shot downstairs and put in a new one. She was just laying there quietly because she knows when that happens she has to cooperate - and she does. The new one was inserted and tied in a matter of moments. It is not a painful procedure for Maggie, though I doubt it's very comfortable. I have to put this tube in which closes off her airway for just a second, and then bring it around her neck, thread the tie through the flange and tie it into place. Threading and tying it are the hardest parts.  The hardest thing for Maggie is staying still while I do that. She is compliant as she can be in a body that moves constantly. 

It's been 3.5 years since Maggie got the trach. In that time I have adapted to the emergencies and the incredible amount of care and responsibility required. Sometimes, though, I am just overwhelmed by the whole thing. This morning was one of those times. Seeing her lying there looking at me with trusting eyes and this open hole in her neck was too much. There is never time to deal with those feelings, though. I just did everything necessary and then started the crazy morning routine to get her out the door and onto the bus.. Now she's off and going about her day and I'm here with that image stuck in my mind, reacting almost two hours later. 

If I'm overwhelmed, I can only wonder what she feels.  

Mean Royalty

There is a certain 16-year-old girl in this house with an attitude.  That is very 16, of course, but it really does not seem fair. Noting else about her is age appropriate, but we get the teenage attitude. Great.

Maggie is dong her “Mean Girls” thing lately. Yesterday I would not let her listen to her music because she kicked her nurse a couple of times. That is the third of three things in a row. It seems Mary Margaret is tormenting her classmates as well.

Maggie is the only girl in the class of five. The four boys have varying degrees of disability. Three use wheelchairs, all four use voice output devices to communicate (as does Maggie). A couple of the boys have nursing needs etc etc. These are Maggie’s peers and appropriately so. The five of them really like one another and, in their own way watch out for one another. It is very sweet, until Maggie, aka Lindsay Lohan, mixes it up.

Maggie has figured out how to hit the weakest spot in each of her classmates and use it to her advantage. For example, one of her classmates is exceptionally sensitive. Just as Maggie laughs inappropriately at times, this guy will cry.  Last week Maggie was bored and started pulling on her trach ties. This is guaranteed to bring everyone running. She yanks on the ties so hard she has broken countless trach tubes. It is a big deal when the trach falls out (or breaks) and everything has to come to a stop to deal with it.  Maggie was yanking away and her classmate started “yelling” for her to stop. He was worried she would hurt herself or break the trach. 

Maggie knew she was upsetting him and pulled harder laughing all the way. He started to cry and the poor guy had to be taken for a walk out of the room to calm down. Maggie was very pleased. No one else was.

Later in the week, Maggie was the only one who managed to earn enough points to listen to her music on Friday. Rather than share it with her classmates, she decided she wanted headphones so none of them could hear the music.  Then she vocalized with all her might whenever a new song started. Of course, they could not hear the music, but they could hear her delight.  Mean. Mean. Mean.  I am not sure how she earn points in the class, but I suggested to the nurse maybe it is time to take points away if she does something mean or unkind. 

She has to learn this is no way to behave. There will be consequences. We will fix this.

Maggie may be acting like a princess and treating her classmates like her subjects. If she is the princess, that makes me the Queen. She does not know whom she’s messing with. Now that Leona Helmsley is no longer with us, I can take the title Queen of Mean.  Bring it, sister.

Jeepers Creepers, where'd ya get those peepers?

Maggie has an appointment with a new ophthalmologist today. She has not seen an ophthalmologist in many years.  The school district advised me that they need a report or they will cut her vision services. Fair enough. I need the prodding. If something is a static issue for Maggie, such as vision, I will not follow up unless someone pushes me.  Maggie is visually impaired.  It is difficult to assess this impairment because it is so much less dramatic than her other physical issues. It is more subtle, but the impairment is significant.

Can Maggie see? Yes. Absolutely. She may need some assistance in the form of glasses, but her vision, per se, isn’t too bad.  She has cortical visual impairment meaning the problem is with her brain as opposed to her eyes.  It slowly gets better as the child ages. Maggie’s vision has improved, or more likely, she has adapted to the impairment. Maggie is smart and she has figured out ways to compensate for her inability to use her vision. For one thing, she has a phenomenal memory, which helps her maneuver her talker with ease. There are technical tools as well. Her talker has an audio scanning device that allows her to listen to the choices before she makes a selection; but she only depends on that for the stuff she does not already remember.  

Though there is improvement, Maggie’s vision problem does not fall into the “normal” cortical visual impairment scenario.  In many cases, the vision itself is impaired and gets better. In Maggie’s case, her vision is not that bad, but the visual impairment comes from her inability to use the vision she has. Maggie cannot watch television because she cannot handle the movement of what she sees.  Her visual issues are motor based; she has ocular motor issues in addition to all the other motor issues. Those of us with normal vision move our eyes all over to take in a full field of vision.  Maggie cannot do that. When something she is looking at is moving, like television or movies, she simply cannot process what she sees. She turns her head away.

Today we will see a new doctor. The old one retired. I loved that guy, even though I only met him a couple of times. I learned more about Maggie’s neurological issues from him in five minutes than I did from other doctors in two years.  Once I saw him, I understood things so much better. Now we have to see someone else, but I hear great things about him.

It will be interesting to see if he prescribes glasses. Maggie wore them when she was little, but she just ripped them off her face constantly.  As soon as she figured out how to grab them, they were often flying across the room. I can tell you this, for someone who cannot see movement very well, she sure thought that sight was funny. 

Here she is in her hot pink glasses as a little girl.

Mother and Daughter

Ok, this is a departure. But things have happened here that have to be acknowledged. Since this blog is dedicated to my relationship with my teenage daughter, I want to dedicate today's post to another maother and daughter, Jacqueline and Janessa Greig, who are being laid to rest Friday morning.

Last Thursday there was a terrible explosion in San Bruno that flattened a neighborhood. Many people lost their homes and some people lost their lives. Among those lost were Jacqueline and Janessa Greig, a mother and her young teenage daughter. I did not know this family, but many people  I know knew them. While they were at home, so close to the center of the explosion, Dad and older sister were at back to school night at the High school. My heart and prayers go to the two of them, who lost everything and everyone, and to all the other victims of this disaster.

This video was prepared by someone at St. Cecilia's school, where Janessa was in the 8th grade. All the photos were taken by classmates It's sad, but very sweet. Her life was short, but full.

Blogger won't let me post it because they used some music but you can find it here http://www.youtube.com/watch?v=X2BKIlCap8A

The Joy of Thursday

Maggie was very tired this morning. We went through the motions of getting everything ready to meet the bus this morning and she just stared rather disinterested. Her responses to me were non existent or half hearted. I wasn't worried she was sick or anything, she was just in a mood.

We went down the elevator and made our way through the crowded garage. The whole time she was looking rather bored with life.  She looked 16 and very blase about her surroundings.

But Maggie cannot contain her joy for long. As soon as the school nurse arrived Maggie was so excited that she almost burst through the straps on the chair. When the bus pulled up she did it again.  As the wheelchair was loading on to the bus, Maggie was laughing her head off. I told the Nurse and the driver that I don't ever remember bring that excited to go to school.

Or maybe she's excited about leaving her mother.

 That couldn't be it. What teenage girl doesn't want to hang around with her mom all day?

A girl and her shoes!

Keeping shoes on Maggie’s feet is a constant battle. Her movement disorder literally extends down to her toes and she is constantly wriggling out of shoes.  As we push Maggie wheelchair, there is always a bump as we run over her shoe that has fallen off her foot. When she was smaller, it was not unusual to return from an outing with one shoe missing. Now we watch closer and just keep the shoes in one of her bags as they fly off her feet.

The other day at the wedding, Maggie’s shoes were hanging on the back of her chair. They had fallen off so many times we just gave up putting them back on. A woman at our table asked who the shoes belonged to – they were clearly “little girl” shoes. When I told her they were Maggie’s, she said, wow, her feet are small. She was right. Maggie has tiny feet.  It makes sense, of course. Bones grow, in part, from use. Maggie has never walked and those bones have not borne her weight; her feet have not had any reason to grow as large as they might have.

 Maggie does not look her age, but she does not look like a toddler either. She is small all over. She weighs only 70lbs (believe me that is plenty when you have to lift her 50 times a day.) but her body is proportionally accurate except for her feet. They are proportionately even smaller than she is. She has not yet reached a size “1” – something kids hit around their 4th birthday. She is 16 years old and wears a child’s size 12. To give some contrast, when I was 16 I wore women size 9 – which is big. In fact, I probably hit that at about 13 and stayed there until a couple of years ago when I finally decided I needed a 9.5. Here is a picture of our shoes next to each other.  My feet are big, but not clown sized. Her feet are extremely small.

Finding shoes that will work for her is always a challenge. We try all sorts of different styles. Her aunt bought her some fancy Uggs, and we had to use a rubber band to keep those on her feet. We have had some success with high top tennis shoes. It takes her a while to get out of those things. On the other hand, it is very hard to get them ON her feet in the first place. Getting that heel all the way down on a kid who’s foot moves like jelly is extremely difficult.  The “dress shoes” are the worst. There is no way those will stay on her feet. I don’t even try the slip-ons that do not have a strap of some sort; and even the straps just give her something to use to balance the shoe off her toe before she flings it aside.

Getting the shoes off is something of a game for Maggie.  It is another way she can control her surroundings – or at least the people around her. She laughs her head off as we find a shoe on the ground. I put it right in her face and say, “Can you explain this, young lady?” That really sets her off. Once the shoes are off the socks are pulled off by the toes.

Her wheelchair does have straps on the footplates to keep her feet in place. They are of limited utility, however, because Maggie manages to wriggle out of her shoes. Before we gave up on those things, it was not unusual to see Maggie legs and feet flailing about while her shoes remained strapped onto the footplates.  It looked ridiculous, but there were a lot fewer “lost” shoes during that period. 

Girl, Interrupted

Steve, Maggie and I went to a wedding on Saturday. Both bride and groom are Latinos and the ceremony was entirely in Spanish. In fact, we were some of the few people in attendance who spoke English.  It was a beautiful wedding and a lovely reception. We did not stay long, though because Maggie’s schedule was completely out of whack. We planned to be there for just a few hours and would do her needed procedures when we got home.  The wedding started much later than planned so we did not have much time after the ceremony. We had to get her out of there shortly after eating. (Yup, we ate and ran.)  We sat at a long table for 12 along with a couple of other people we knew.  Our tablemates were friendly and interesting, so the evening was lovely.

 Maggie sat next to me off the end of the table. I watched as the children running around became a little braver about approaching her.  The bride has a son in a wheelchair, so the kids might have been a little more acclimated than most. One little girl about 4 years old finally came up to Maggie while Blanca, the brides’ mother was talking to us. She asked Blanca  what the dynavox was and Blanca explained it (in Spanish) and I chimed in a little in my rudimentary Spanish. Blanca explained the buttons on the tray and how Maggie uses those to make the computer talk for her.

Maggie has two buttons, which we call the “mover” and the “chooser”. One scrolls through the pages and icons until Maggie gets to something she wants to say. Then she hits the “chooser” to select and “say” what she wants.  

This little girl was dressed like a princess. She was one of the flower girls and she was wearing a beautiful white dress and a tiara. She looked shyly at Maggie and then pressed one of the buttons. She pressed the chooser and the sentence Maggie was working on played. The little girl was very pleased.

Maggie was not.

The girl ran off to play with the other kids and Maggie sat scowling in her chair. I looked at her and said, “Maggie, did that girl make you mad?”  Maggie smiled wanly as if to say, "it’s ok, she’s just a kid."

The little girl came back and more deliberately  hit the button and ran off again. Maggie scowled again.  This time it was more like, “Ok, kid, I know you’re only 4 but BACK THE HELL OFF”

If an adult tried to do that, I would stop them. That is Maggie’s space. But a little girl … c’mon, you have to roll with it. I said Maggie, don’t you wish you had a little sister? She did not answer. She was too busy guarding her buttons in case the little princess should return.

We left before it got ugly.

Hello, Central?

Despite all the high tech ways we have to communicate, you have to admire the old PBX system. Everything went through one central switchboard. The operator of that switchboard would connect people with the appropriate person or department.  That switchboard operator had a good understanding of who was talking to who and what was going on with everyone. Historically there was a central switchboard for a community. In small towns, that operator knew everything that was going on around town. (Think Andy Griffith)

Obviously we have evolved tremendously since then, and communication is much more sophisticated; but in some cases, the concept still applies. One of those cases is mine. I am the switchboard operator for Maggie. I connect Maggie with all the right people at the right time. We need all those people out there and they all have important thing to bring to the table, but they have to go through the switchboard or their assistance is of limited value.

There are those who think the central information controller is not important. That knocks the entire fragile system out of balance. They fail to realize that they are one of many celestial bodies in Maggie’s solar system. Maggie is the Sun throwing out all this energy and heat with many bodies orbiting around her. It only works if everyone stays in orbit. However, it's not gravity that holds everything in place, it's communication.Communication is the only way we can keep everything spinning around Maggie’s sun.

Maggie is a very complicated girl. She has doctors coming out her ears. She has nurses coming out her ears. She has therapist s coming out her ears. She also has teachers, case managers of every flavor and   other professionals in her life. All of those professionals have staff and assistants and interns and others who have a more tangential role in Maggie’s life. In addition to that there are medical suppliers, their delivery personnel, the insurance, the state of California, the service providers ete etc etc.  Maggie needs an operator, someone to coordinate all lines coming in so that she can take advantage of the amazing help that these professionals want to give.  I am her operator and believe I am quite good at keeping all the lines open all the time.  It is an important role and one that deserves some respect.

I have had moments of failure in this role, but for the most part I am what is known in the legal world and PMK – person most knowledgeable. You want information.  I probably have it and, if not, I can certainly connect you to someone who does.  Do you want to skip the operator? Sorry. No can do. The operator alone knows all.  

You will find yourself disconnected. 

Welcome to the Dark Side

I took the Brisco to the dog park last week. It was very quiet there which was exactly what I needed after a couple of wild days. We played for a bit until he ditched me for some dogs and I wandered over to the benches. There was just one woman sitting there. I at one bench over and enjoyed the few minutes of peace.

We struck up a conversation after her dog came over to me. It was pleasant. I noticed she was using oxygen and had a very small tank  - like the size of a thermos around her neck. I asked how long that lasted and she said 8 hours! Wow! I told her Maggie's tank was 5x the size and only lasted 6.  Though she wasn't there, the conversation turned to Maggie and her medical needs.

It was very cordial and not prying or anything. She was generally interested. I doled out only what information I wanted to and didn't feel put upon to over share. She asked if I had any other children. I said, yes, I have two college age sons.

This is where the conversation took a strange turn. This sweet lady with the oxygen tank said, "It must have been very difficult for them because you probably neglected them."

(insert cartoon head shaking here) I'm sorry, what did you say?

Well you obviously were busy with your daughter and could not give your sons the attention they needed.

I paused for a moment, shocked. How did we get here? It was as though a dark cloud covered the sun.

I paused again. I thought of my boys who had a great childhood, filled with tons of family and friends. I thought of vacations together and their friends who joined us. I thought of walks in the park and dozens of visits to "the rolling place" where they could roll down the grass non-stop. I thought of Eddie on his bike as a little kid and Tim practicing baseball every day. I thought of my  boys who went to private schools, and who brought friends over here constantly. Boys who are kind and polite. Boys who are well liked and respected by their peers and mine. Boys who are both working and having fun.  I thought of the two of them now living together 200 miles from home as they attend college.

 I thought of their very well developed senses of humor and how they might answer her. I felt a smile coming on, but I kept it just to myself.

I paused once more and gave her a long look. Then I simply said, "They did all right."

Labor Day

 It is a beautiful day here. Gorgeous. But I'm too grumpy to enjoy it yet. 

The night nurse didn't arrive at 11:00PM as she was supposed to. Maggie is sick. She has bronchitis that we are desperately trying to keep from turning into pneumonia.  She needs oxygen all the time until this clears up. I had been dealing with a lot all day. Even when the day nurse was here I was talking to the doctor and making trips to the pharmacy. 

I was more than ready to hit the hay at 11:00. No Lucy.11:15 no lucy. I called her cell. No answer. I called her house. No answer. I texted. No response. Arrgh. 

I sent Steve to bed (he had a far more exhausting day than I and arrived home at about 9:30). I put Maggie in her bed and switched over to the large oxygen tank . I sat at her bedside and played on my computer until I could not keep my eyes open any longer. That was about 1:00AM Maggie was in a deep sleep so I reclined the chair and fell asleep.  I figured I would hear Maggie if she needed anything.. 

Next thing I knew it was 1:30 and Steve was walking in the room. Lucy had been ringing the door bell for five minutes and I didn't hear it. She overslept. She woke up at midnight and just started getting ready, showering etc, but never bothered to call or respond to my texts. Bizarre.

It scares me that I would sleep through the doorbell when I'm supposed to be on duty with Maggie. You can't really hear it in the back that well, but I was really out. That's a problem. 

I went to bed intending to sleep until 9.  About an hour later Steve says, "did you hear the doorbell." I said "that already happened, she's here." He said, " I thought I heard it again." (Now it's 2:30AM). I said "I am not expecting anyone and if it's some sort of emergency they will bang on the door." He went back to sleep. I wondered if there was some sort of emergency. (Not enough to get up and check, mind you, just enough to not sleep) 

 As a bonus for the evening, Steve forgot to turn off his cell phone alarm from his outing on Sunday morning. It went off at 7AM. I heard THAT perfectly.  Intersting because that is downstairs and I was upstairs. He ran down and turned it off and went right back to sleep. Me? Not so much.

Sleep was just not in the cards for me last night. 

I sent Lucy home. She talks incessantly and my brain is too foggy to listen to her. I would rather take care of Maggie myself than listen to her chronic mumbling. Truly I hear: " mmbllelblelmele,  right Sally?"  And I say "I'm sorry, what did you say." so she repeats it. It doesn't help. It hurts to concentrate. I told her to get some sleep and BE ON TIME tonight.

so it's me and Maggie. And a large pot of coffee.

The Gift of Time

We are readjusting to the school schedule. That means we are back to the morning rush of getting Miss Maggie ready and out the door in time for the bus at 7:15. That is no small feat. By the time the bus pulls away, I am ready for a few minutes of down time. It is this time that I tend to read the paper (yes we still get the paper) check facebook, write, read blogs etc.

It is important to be aware of the time slipping by, however, because there is a lot to be done before that afternoon bus arrives with Maggie. There is a nurse here in the afternoon to tend to Maggie, but I have to be around to help. I can run out for a few minutes here or there, but I am on a very short leash once Maggie is home.  If I was an intelligent being, I would hit the ground running in the morning and play on the computer after 3PM, but I guess that involves too much of a change in my schedule.   

I do have actual work to do for the clients I handle. There is also the ridiculous amount of paperwork and “busywork” involved in managing Maggie’s supplies, services, nursing, life etc. Every week there is some appointment or other for Maggie, which all requires choreography as well as execution.  On top of that are the obligations that everyone has shopping, laundry, walking dog etc.  Tasks that can be done with frequent interruption I save for the afternoon.  Things that need my full attention have to happen while Maggie is gone.

Yesterday I finished something I was working on at 2:00PM. Maggie’s nurse arrives at 2:30 and her bus comes at 3:00. I needed to help my mom with something but I did not have time to get over then and back before Maggie arrived. I called and told her I would be there at 4:00PM after Maggie was settled in and the first set of procedures was done. I still had to do the shopping too. We had a friend coming for dinner so I needed to get to the store.  I knew I could do that in an hour.  I went to Safeway which is just a few blocks away. I was coming home  when I  saw a school bus. I looked at the clock  which read 2:42 and thought, that can’t be Maggie, it’s 15 minutes early. As we passed each other I tried to catch a glimpse to see if it was Maggie’s driver. I couldn’t see him but was sure it wasn’t. As I turned the corner onto my street I see Janice, the school nurse pulling out. That means Maggie was home AAACK!  She was early.  That really did not compute.

Janice stopped to give me a report on Maggie’s day. She had already spoken to Fely, the home nurse, but Maggie has been less than perky this week, so she wanted to talk to me too. She told me Fely asked “where’s mom.”  It was unthinkable that I wouldn’t be there to meet the bus. I’ve never done it without telling someone ahead of time. I lugged the groceries in and greeted the Queen and her attendant. We set about getting the procedures done. 

As I was getting ready to go to my moms, Steve called. I told him I had to dash and he said those words every busy person wants to hear. “I’m about six blocks from your mom’s house, why don’t I go fix it?” That was the gift of time. I had an hour to myself. The shopping was done. Dinner was easy and didn’t need to be started yet. I had an hour to waste if I wanted to.

I plopped in a chair and watched “Make over my Man” day on Oprah. It was decadent. And I got a few good ideas for Steve and the boys.