Monday, September 29, 2008

Big Head, Small Hat

My phone has been ringing a lot in the past few days. Other disabled individuals, children and adults are getting the same letter from the nursing agencies that we received two months ago. The home nursing agencies are dropping these patients left and right. It is not that the nursing needs have changed, and they don’t have doctor’s approval, but the patients are being abandoned one after the other. Maggie was among the first to be dropped and I was able to feverishly put something together.

Other people in the same boat want in on my deal, which is impossible. It’s impossible because I’m authorized only for Maggie. I am not licensed, bonded or anything else. I’m just a parent and my authority is limited to my own child. If they can't get in on it, they want to know how I did it, which I’m happy to share. I can tell them how but, in all honesty, I am not certain how many will have the ability to do this on their own. I'm not bragging here. It's hard. And I had known how hard, I might not have tried. It is a strain financially, a pain administratively, and a drain emotionally. Additionally, the time and energy required makes it exhausting. The people affected by this are doing everything they can to stay alive or to care for a family member. There aren't reserves for setting this in motion and then maintaining it.

I understand the issue intellectually and economically. All of these patients are on medi-cal, California’s public insurance for the poor or disabled. Medi-cal reimbursement rates are ridiculously low. The reimbursement rate is for the actual nursing hours only. It does not cover the administrative expenses, taxes, insurance, rent etc; all of that has to be paid out of the same nursing rate. In the city of San Francisco there are local taxes and fees that make it even worse. The nursing agencies are operating at a loss because the cost of caring for these patients exceeds the amount of the reimbursement.

I do not understand the issue morally, logistically, or socially, however. Without the skilled care these patients will die. Period. How can the agencies take these patients and then abandon them without anyone to care for them. Why are the agencies not obligated to find them other care? Where are their doctors? Why aren’t they screaming? Where is the state?

Society has an obligation to care for those who cannot care for themselves – this is not a political statement. It is just the truth. “A nation's greatness is measured by how it treats its weakest members." This quote has been attributed to Aristotle, Mahatma Ghandi, Harry Truman and Winston Churchill. I’m not sure which one said it or if they all did. It’s right.
“Pull yourself up by your bootstraps” does not work for the person who is a quadriplegic.

The patients will have to be cared for somewhere. If all these patients are placed in hospitals or nursing homes the state will pay anyway because the patients are on medi-cal. It will cost exponentially more from a pure monetary standpoint; and the human cost is incalculable. Caring for the patients in their home is better for the patient and the family (if there is one) Moreover, it’s cheaper for the State. The patients get better care at a cheaper cost in a place they want to be.

Of course it’s cheaper still if the patients do not survive. And they won’t given the current laissez faire attitude.

Perhaps that is the plan.

It’s harsh, but it is difficult to reach any other conclusion. Wall street bankers who screw up their institutions and the savings of millions of Americans may get a bail out, but those who need it most are on their own.

Maggie is stable and her nursing is in place. I understand the issue and I have a big mouth. It’s time to put on my bitch hat and start making some noise. Fortunately that hat is always close by, and it’s just a little too tight, thus making it so much more effective. Stay tuned.

Nature Lovers

We are fortunate enough to live less than a block from Golden Gate Park, our own oasis in the middle of the City. We take Maggie and Brisco over there all the time. Maggie holds the leash and Brisco pulls the wheelchair. It’s fun for all. The destination can be the conservatory of Flowers, The Rose Garden or just a walk along one of the many paths that wander through the park. Often we head for the concourse area of the Park, which is about five or six blocks away. It is the heart and soul of the Park. There are museums, the bandshell and the Japanese Tea Garden. The aboratorium is also right near there. It has alwasy been a source of enjoyment for the entire family.

For the past seven or eight years, the main concourse area in the Park has been a construction site. The City built a parking garage beneath the concourse and re-built the deYoung Museum and then the California Academy of Sciences, two excellent museums that face each other across the concourse. Steve often took Maggie over there to inspect the progress of the construction and the two would report back to me on those occasions I did not join them. They took that “inspector “role very seriously. Steve would wheel Maggie right up to the fence and they could see the guys and equipment working. The fenced off area shifted constantly as work in one area was complete. Now it looks like the two inspectors will have to find another way to amuse themselves. The work is finally completed!

On Saturday, the California Academy of Sciences re-opened. It has been closed for five years. A smaller version was opened downtown during construction of the new Academy but it wasn’t the same. The aquarium, the planeterium, African hall, the Pendulum and everything else in the The Academy belong in Golden Gate Park. Finally, it’s back.

The deYoung Museum reopened in a spectacular building a couple of years ago. Now both are complete, the parking garage is done and we can get back to enjoying the Park and particularly the Concourse in its entire splendor.

We walked over to the opening on Saturday morning. I expected it would be crowded and crazy and did not really expect to get into the Academy. When we walked out the garage door and saw cars lined up on our street looking for parking, we knew it was going to be bad. When we entered the park and saw the line extending farther than we could see, we knew it was not going to happen. One of the staff told us the line was two miles long and was already closed at 10:00AM. It did not really affect us that much; we live so close, we can go anytime we want. I felt bad for people who drove a long way to see it and be a part of the first day.

There were other booths set up in the concourse to celebrate opening day, so we spent our time at those. Maggie was able to try some solar powered toys and we looked at a new electric car that actor Ed Begley Jr. was promoting. But the highlight was an exhibit from a Nature center that was using a stuffed RACCOON to educate the kids about the wonders of nature.

The three of us were hoping it was the same critter that attacked the dog on Friday morning. Maggie thought that was hilarious. Stuffed raccoons are the BEST raccoons.
We are not very good nature lovers.

Friday, September 26, 2008


Many nights we have to jump out of bed to attend to an emergency with Maggie. We used to rely on the nurse’s loud voice to wake us. However, our room is upstairs in the front of the house and Maggie’s is downstairs in the back. Ifthe door was closed to Maggie’s room we couldn’t always hear the nurse yelling. To remedy that, we put in an extension phone on the fax line and put it in Maggie’s room; now if the nurse needs me in the middle of the night, she calls the house number and it rings right next to our bed.

At 4AM, I heard screaming. At first, I thought someone was being attacked outside the house. I sat bolt upright and then realized it was coming from INSIDE the house. My brain quickly went down the possibilities. Maggie? No! She cannot scream! What is it? The nurse? No. Steve and I looked at each other and I said. “It’s the DOG!”

The screaming continued. We ran downstairs and headed toward the basement. Graciously, I allowed Steve to go first. I was afraid of what I would see. Was he impaled on something? I am good at Maggie emergencies. Not so good at any others.

Steve started down the basement steps and saw Brisco trying to get up the stairs. A raccoon was on his back attacking him. Both animals were screaming. It was freaky. Apparently the raccoon decided that giant container of dog food was a perfect 4 AM snack. Brisco felt otherwise.

Please remember, we live in the middle of San Francisco in a row house. There are many perils and pitfalls to city living. Wildlife is not generally among those. I just hope that raccoon isn't in a gang who will come back en masse to retaliate.

Steve got the raccoon out the back door and I tended to Brisco’s torn ear. A trip to the vet is in order once the sun comes up. His ear is ok, just a deep scratch. I am trying to remember if his shots are perfectly up to date. We are going to avoid any diseases this city critter may be carrying.

Of course, the vet will have to wait until the plumber comes to check out our sewer problem. Now this is the type of peril I am used to. We discovered water backing up in the sink next to the washing machine. We cannot use the water in the house without exacerbating that problem. Once the raccoon was gone, Steve took the opportunity to bail out the sink before it overflowed again.
The plumber is coming first thing in the morning. Or, what I thought was first thing. Little did I know we would have our own Wild Kingdom show.

Maggie? Fine. Once the screaming stopped, she thought it was hilarious that Dad and I were running around downstairs in the middle of the night. Bonus! She is just sorry she will miss the plumber.

Thursday, September 25, 2008

The checks in the mail

I finally received payment for the nursing from August. The deal is that the Golden Gate Regional Center reimburses me once a month for the nursing expenses. This nursing deal started on August 23, so there was just a week of expenses in August. It took three weeks to be reimbursed for one week of nursing.
The delay was due in part to the check being lost in the mail. It had to be cancelled, and reissued, so that added a week to the wait. Ok, that can happen. However, I really need the money to make “payroll” this week. So I drove downtown, paid to park and went in to pick it up.
I was surprised to see the reimbursement was short. It was only $147 short, but there was no explanation, no nothing. This is not enough to cover a single 8-hour shift, so I was mystified. I deposited the check and questioned the shortage. I was not about to give them another week to investigate. I got an answer yesterday. The explanation just blows me away.
The last shift of August was a night shift on August 31. The Regional Center will not reimburse the few hours after midnight because those expenses were incurred in September. I have to wait another month to get those 5 hours reimbursed.
I will get the $147. But could this BE any more difficult? September’s bills will be for 30 days and nights, and the cost will be over 4 times the August bill. Except for September 30 after midnight. That I will recoup in November.
I am playing a game I cannot win.

Wednesday, September 24, 2008

Danger Will Robinson!

Every morning we wait for the bus in front of the house. In San Francisco, most kids do not get transportation to school. I believe it is just special ed and a few others. Maggie, the most special of special ed students, gets door-to-door bus service. It’s great. We just head downstairs with her wheelchair loaded with the supplies and wait in the driveway. The school has a nurse accompany Maggie on the bus and in school. That nurse is either waiting for us when the garage door opens or comes walking down the street a minute or two later.

The bus driver changes all the time. The bus company is separate from the school district. The routes are determined through a complicated bidding system based on seniority and other union based criteria. The morning route is different from the afternoon route; hence, the driver is different. There are not THAT many drivers on the wheelchair buses; but after nine years in the school district, we are still meeting new drivers all the time. I learn their names and how much interaction they want. Every driver is different. Some welcome my efforts to help and others do not want it. Therefore, before jumping in I just ask each new driver: “Should I close the door after the lift goes up.” Some say yes; others do not want me to touch anything. It’s cool. Whatever.

So far this year our morning driver is a guy named Dave. Davie is animated and talkative and the kids love him. According to the nurse, he even enlists the aid of the kids on the bus to figure out which is the best route to take each morning to beat the traffic and arrive at school on time. Maggie doesn’t take part in that conversation because she cannot have her communication device attached during the bus ride. Still, she enjoys the repartee.

Maggie’s favorite thing is Dave’s arrival in the morning. He says the same thing every day. When the wheelchair lift is lowering, Dave says loudly, “Warning! Warning! Danger! Danger!” quoting the robot from the old “Lost in Space” TV show. He does this to make sure none of us is clunked in the head by the lift coming down. It took me a week or so to notice this, but Maggie waits for it and laughs her head off when he says it. When he actually throws in “Danger Will Robinson” as the lift goes back up, Maggie goes crazy.

Dave was the last one to know how much Maggie enjoyed this. She is loaded onto the lift facing out; the driver is behind her so he cannot see her face. In addition, Maggie does not make any sound because of the trach. If you cannot see her, you don’t know she’s laughing. Now that Dave realizes she is reacting so positively, he has kicked it into high gear.

Yesterday Dave’s bus broke down and they sent a replacement. It just was not the same. Maggie looked somewhat glum as the lift was going up and the driver was not yelling about DANGER! Just a boring school day. I guess you could say Maggie lives for “DANGER!”

This morning as Dave arrived both the nurse and I could see her body anticipating Dave’s warning. She was not disappointed. It was louder than ever and I thought she was going to stop breathing she was laughing so hard. It is a little disconcerting for pedestrians walking by though. They see a little girl on a wheelchair lift and someone yelling DANGER! And everybody is laughing. We look like a bunch of sadistic nuts. One of these days, Child Protective Services will be knocking on my door.

Tuesday, September 23, 2008

Safe at First

There was a new nurse orienting here the other day. She is a good and conscientious nurse and fits easily into the rhythm of our house. I wonder if she will come back. Maggie’s constant need for medical intervention scared her. She was not sure she is up to the level of care Maggie requires. That is part of what makes her a good nurse. It’s a conundrum.

Maggie was doing very well that day; it was a “normal” Maggie day. She was at her “baseline.” Maggie’s baseline means she needs a lot of care. It is constant. Figuring out when it is emergent and when it’s just “Maggie” takes time. She sounds like she’s going to choke to death half the time, but she’s not. To the untrained individual it is scary. To me it is mundane.

For the first couple of hours of the shift I did everything, so that the nurse could watch and learn. After a while, I backed off and let her do it, but I was never more than 15 feet away. If someone is really going to learn, they have to do it on their own; but if she needed help, I was right there. I never even got in the shower that day. The nurse asked all the right questions and handled things very well. She and Maggie were getting along and laughing and I heard her say a couple of times, “Maggie, be nice to me or I won’t come be able to come back and work with you.” The pitch of her voice was just a touch too high. I have learned. This is a message for me, not for Maggie. The nurse was overwhelmed.

Of course, I look like the most uncaring beast in the world. I am sitting 10 feet away at my computer not even getting up. I knew everything was well under control, and that the nurse was doing a good job. Jumping in when I wasn’t needed would only increase the nurse’s stress level. Finally, after several minutes I went in there to reassure her. I told the nurse that I panic all the time, often when it’s nothing. If I am not freaked out, she can take that as a message that this is Maggie’s baseline. It seemed to calm her down. She told me that another patient frightened her at first but she is now able to take everything in stride. That was a good sign. She thinks she can get used to this.

Therefore, our fingers are crossed. If she comes back that is great. Next time I might even take a shower. Or venture out to the grocery store. Eventually I will have the freedom to come and go easily.

Of course, that is all dependent on the nurse getting use to Maggie’s baseline. If Maggie really gets sick and her care increases, which happens all the time, she’ll be outside the baseline. Those of you who follow baseball know, that means you’re out.

Monday, September 22, 2008


Brisco is our 10-year-old husky mix mutt. We named him Brisco after the title character in Brisco County Junior, a short lived (but great) television show. In fact, his full name is Brisco County Jr., but we only call him that when he is in trouble, which is almost never. He is very likely the greatest dog on earth.

We have had him since he was a 6 month old stray foraging for food in a shopping center garbage bin. The good people who found him took him in and looked for the owners for a couple of weeks. The search was not successful. The shopping center was near a freeway, so it is possible Brisco wandered away at a stop and the owners did not realize it until they were farther down the road. I wonder sometimes about the people who lost him. Brisco had been well cared for; he was well trained and easy going from the start. They must have been sad.

In all honesty, I was reluctant to adopt Brisco. We had another dog for just a month or so. Maris, the first dog, was also a stray, but likely had not been treated as well as Brisco. She was skittish and never comfortable with us. She ran into a busy street and was hit by a car that never stopped. This occurred right in front of my older son who was chasing her. My son was about nine years old at the time. Both boys were so hurt, and my older son so traumatized when Maris died, I didn’t think I could handle that again. Steve was of the mind that another dog would help them recover. I relented. Steve was right.

I was afraid to get too close to this new dog. My heart was broken by the death of the first dog and my helplessness to comfort the boys. I kept fences up to protect myself. One condition was if Brisco wasn’t good with Maggie, he was gone. Maggie was four years old then and was not yet comfortable spending a lot of time in her wheelchair. She spent a lot of time on the floor in the living room and if the dog was going to bother her, he was gone. Everyone agreed. That was 10 years ago. The fences fell down a long time ago.

Right from the beginning, Brisco was Maggie’s protector and friend. He would lie next to her, she could pull his ears, his tail or any other part, and he would sit quietly. If the boys even tried the same thing, Brisco would never stand for it. He “got” Maggie right away. Whenever someone else would come into the house, he would automatically position himself between him or her and Maggie until he determined they were ok. Never bit anyone, and never even really barked at anyone in the house. (Coming up the stairs was and is a different story). He would just sort of check them out before he would let them near Maggie.

He is still very patient with her, though these days she is in her wheel chair more than on the floor. She calls him on her talker and he comes over and licks her hands. She laughs and he lies down and goes to sleep. He patrols through Maggie’s room, checks up on the nurse, and just keeps an eye out. He is good to the nurses and vice versa. When the nurses are with Maggie, in her room, they can do anything and Brisco is cool with it.
HOWEVER, on the rare moments that the nurse brings Maggie into the living room, Brisco does not want them fussing with Maggie. The living room is his jurisdiction. No one (outside the family) messes with her in his territory. He does not bite or growl, but he does bark, pace and generally communicates his displeasure very clearly. This is ESPECIALLY true if Maggie is on the floor. Brisco is in charge.

You wanna mess with her here; you better have a warrant.

Thursday, September 18, 2008

History 101

There are many disabled children in the world and I am willing to bet that most of them have parents as proud as I am. The world tends to give our kids short shrift so we have to brag a little louder and point out different kinds of achievements. My pride in Maggie’s achievements is enormous. I want to give you a little taste of what’s she has been through to get where she is today.

You know that Maggie uses a wheelchair and a communication device and has nurses caring for her round the clock – or her mother when nurses are not available. She is totally dependent on others for her physical needs. She is smart, funny, and loves to be the center of attention. Some of you know, but most of you do not know about Maggie’s impressive medical history. You have probably figured out that she has cerebral palsy because that is the most obvious of her conditions. However, it is only one of many.

Maggie was born with something called vater or now called vacterl association. That is an acronym for the constellation of physical anomalies that appear together at birth. The problems include: vertebrae, anus, cardiac, trachea, esophagus, renal or radial and larynx. It doesn’t fit her perfectly, she doesn’t’ have the “c” or the “r”, but she had additional anomalies not addressed by that acronym. Everything right down the middle of her body didn’t form properly when she was developing as a fetus. From what I have learned, this happens randomly. Sometime early in pregnancy, like 6 or 8 weeks, development goes awry. Everything developing at that point is affected. Because it is so early in development, the results are pretty dramatic.

And, before you ask... yes. We had every test known to man. And no. We did not know anything before she was born and I have always been glad about that. The anticipation of Maggie’s arrival was a very happy time. We knew we were having a girl and we were excited because Maggie has two older brothers.
Maggie was a beautiful baby and it was hard to believe her insides could be so screwed up looking at her perfect face. Because of these significant physical problems, Maggie has had many surgeries to correct or compensate for the physical anomalies. The first was when she was less than 24 hours old. She had six or seven surgeries – and I mean major major surgeries - before we took her home from the hospital 12 weeks after she was born.

At six months of age, she developed hydrocephalus, a buildup of fluid in the brain, another condition requiring surgical intervention. Many surgical interventions. In fact, we have truly lost count. We stopped counting at 70. That’s right 70. At least 50 of those have been to repair or replace the shunt in her brain and the other 20 to address those physical anomalies that could be fixed. That’s over 70 times I’ve watched her get wheeled into an operating room and over 70 times that I’ve wondered if she would come back. She not only comes back, but she generally “comes to” in the recovery room with a wan smile.

In addition to the surgeries, there have been dozens of hospitalizations to deal with one issue or another. Maggie has lots of tubes in her body. She has a tube (shunt) in her brain to get the fluid out, a tracheostomy tube in her neck so she can breathe, a feeding tube in her stomach so she can eat and is dependent on catheter tubes to empty her bladder. Tubes clog and cause problems of their own. There have been literally thousands appointments with dozens of doctors, nurses, therapists and all the other professionals that goes along with living in the medical world.

Maggie greets each one with a smile and wows them all.

So that is why I brag. Maggie is a stud.

Cook please

Maggie was in her chair with her communication device hooked up and I was working on the computer when I heard the computerized voice say:

“Cook, please”

No. I would rather not. It is three in the afternoon and I am trying to finish this project.

“Mom, cook please”

Maggie, I can’t right now. It’s not time to eat and we are hanging out in here doing this.

“Mom, cook please.”

I look at Maggie and finally get that she is trying to tell me something. I ask her, “Do you want to go in the kitchen?” Her hand flies up to her mouth – her sign for “yes”. Ok, kiddo, let’s go.

That exchange happened sometime this summer. It was a huge breakthrough. Maggie was using her communication device to express something she wanted without prompting. And she improvised using the limited choices on her talker. There was no place to say, “I want to go in the kitchen.” Therefore, she got her point across using the “cook” button.

You have to think for a minute about how smart that is. Those of us who speak, read and write do things like that all the time. We take them for granted and do not realize what a complicated cognitive functions they require. It is automatic for most of us. It is not automatic for Maggie. Every step of that process is difficult and deliberate. It is amazing.

Maggie’s frame of reference is very different from yours and mine. She doesn’t eat regular food; she is fed a special prescribed medical food through a tube in her stomach. She does not cook and she does not generally even watch anyone cook. She does not spend much time in the kitchen because of the configuration of the house and the difficulty of maneuvering the wheelchair. Nevertheless, she had to employ and improvise on all those concepts to put together that particular string of words to convey her message.

Now we hang out in the kitchen a lot. I get her into the kitchen and she “cooks.” Of course, that word means something different to her than it does to me. Maggie “cooks” by opening and closing the refrigerator a hundred times and by opening any drawer she can reach to pull all the contents out. (We keep her away from the knife drawer). Before we “cook”, I have to push everything breakable or dangerous well out of her reach.

It is entirely possible that Maggie has been using her communication device to express her wants and needs for some time and I am only now noticing it. Communication by definition is a two way street. One party has to be open and receptive to the communication. In this scenario, that is my job. I need to listen closer and perhaps translate a little. What else is she trying to say to me?

Maggie may be brilliant, but her mom is a little slow on the uptake. “Mom, think please.”

Wednesday, September 17, 2008

night shift anyone?

I need to fill three night shifts for Maggie. Night shifts are generally not easy to fill. For some reason, people like to sleep at night. Maggie has had the same nurse five nights a week for many many years. Now it looks like she is going to take another assignment for three of those five nights. It’s not just finding someone, which is difficult enough; it’s also dealing with the loss of a reliable fixture in Maggie’s care.

Up until about a month ago, an agency provided the nurses. They unceremoniously dropped Maggie and several other kids. The agencies cannot make any money on the amount the State of California pays for nursing care for the most vulnerable kids like Maggie. In reality, the State is saving thousands and thousands of dollars every year by not having to pay for institutional care. But that argument doesn’t sell. California is 77 days overdue passing its budget. Money is tight. Budgets are being slashed everywhere. Kids like Maggie, who cannot complain and do not have a voice in Sacramento, are easy targets.

Now we have to do this on our own. The State reimburses us, but only after we lay out thousands of dollars. In addition, the entire administrative responsibility falls to me. Now I have to find a nurse or nurses to fill three night shifts. Right now, we are the only family who has undertaken this task on our own. We are lucky to be in a position to set it up. Many families will not have the resources or tenacity and the children will suffer.

The nurses working here actually make more hourly than they did working for the agency. I don’t take a cut and can offer them a higher wage. However, I cannot offer any benefits and they are responsible for their own taxes. The agency does not provide any real benefits either, there’s no vacation or health insurance, but there are two paid holidays and dental insurance. They won’t get that from me, I am not an employer, just a vehicle for the money to pass through. The benefits are not that big of a deal the 25% increase in salary more than covers the difference.

In in the case of this nurse it is the responsibility for the taxes and her mistaken belief that her tax liability is greatly increased working here. It’s not, but it seems like it is. From a psychological standpoint, taking money you actually receive and putting it aside for taxes hurts a lot more than simply receiving a net amount after deductions. But I know I cannot take that on the responsibility of paying taxes for the nurses.

So one has jumped ship, or at least partially jumped. Arrgh. Ironically, she is going to be caring for someone I know. His name has not yet come up on the cut list but it will. It is just a matter of time before his hours are also cut. Kids all over the State are being affected, but they’re starting here in San Francisco. San Francisco is feeling it first because of additional fees that businesses have to pay in this city. When this boy’s name comes up in the next month or so, this nurse will likely want to come back. If there are open shifts I will take her in an instant, but I cannot wait for her. She knows that. She’s rolling the dice too.

Seems to me that home care for the most vulnerable and medically involved children should be given a little higher priority. It should be less of a game for the patients, the nurses and the families.

So if anyone out there wants to work 11PM to 7 AM three nights a week and can do all the skilled care Maggie needs all night long and be loving and caring, let me know. Perhaps we can work something out. There's no dental, but you can park in the driveway. In San Francisco that's a HUGE benefit.

Tuesday, September 16, 2008

Picture Day

Today is picture day at Maggie’s school. We all remember those school pictures that we wish we could have back. I set my own hair for picture day in the second grade and I get to see the evidence of that from time to time; that picture will not disappear. Many years Maggie’s pictures are just a joke. One year she looked like Steve Carrell on the 40-year-old Virgin ads, another she was falling over and her face was all contorted. Sure, I’ll pay $50 for those. Ok, I did buy the Steve Carrell ones. But the others, puhlease.

I cannot imagine being the school photographer. Hundreds of excited, nervous, bored or cool middle school kids, one after the other. The photographer has to get the entire school done in a single day. It’s rush rush rush. However, not every kid is ready for that and, inevitably, there are some lousy pictures. Even for those who do not set their own hair.

Many times Maggie is one of those kids. I understand that the world is not set up for the Maggie’s of this world. Nobody understands that better than I. Nevertheless, I just hope the photographer can take that extra moment for Maggie and her classmates. It makes a huge difference. Maggie cannot operate on a rush schedule for anything. She needs time to adjust to any new situation or person and the picture guy behind all his equipment is definitely different. In addition, excitement of the other kids makes it more difficult for her to acclimate to the situation.

Sometimes the pictures are great. It is just a crapshoot. She left this morning in a bright red shirt and a matching scarf and looked radiant. Of course, she has been scratching her face like crazy and there are scratch marks all over her forehead. Steve said she looks like she’s been hunting with Dick Cheney. Should be interesting. Keep a good thought.

Monday, September 15, 2008

Meet George Jetson

Sunday was a “stick around the house” day. We had a new nurse on and I have to be backup for all the procedures, meds etc. I puttered around the whole day rearranging the piles of papers in my dining room/office.

A strange noise was coming from my computer. I feared the worst. My computer crashes a lot and I’ve never completely trusted it. I approached with some caution. But no! It wasn’t crashing. I was receiving my first ever SKYPE call. It was Emily, our friend and Maggie’s former teacher, who moved to Warsaw Poland to teach in an international school.

The Europeans on this list will laugh at my fascination with this technology. Apparently, everyone uses Skype in Europe. Well, it was new to me. For those of you who don’t know (and I hope I’m not the last) Skype is a computer to computer “telephone” service. You download the program for free and calls from one computer to another are free. Since Emily also has a camera on her end. We could see her while she was talking. Very George Jetson!
I brought Maggie over to the computer and she was BEYOND excited to see Emily. She kept waving and waving. I had to tell Maggie that Emily could not see us because we don’t have a camera. Maggie used her communication device a little bit to talk to Emily, but Maggie was so confused about what was going on, she sort of froze. Because of her trach Maggie doesn’t have a “voice” of her own, but she managed to get out some heavy breathing sounds that Emily could hear. When Emily responded, Maggie would start waving again.

This week I am buying a webcam. Next time Maggie can see Emily and they can wave at each other. I may bey a few of those webcams. Maggie can use SKYPE to call her brothers who are away at college. She would love to see them and visa versa. The boys would get the additional bonus of seeing their mother regularly. I’m sure that will be a selling point.

Friday, September 12, 2008

Welcome to the Neighborhood

We have new neighbors. A family with two young kids moved in next door just a couple of days ago. They seem like a very nice family, I’ve spoken with both parents and met the children. The little girl is aout eight and the little boy about six. Six year old boys are the best; there is nothing funnier than a boy that age.

We live in a row house and our houses are 1 inch apart. While sitting at my computer I face out the dining room window right into their yard. I can see the kids playing and peering through the fence into our yard trying to figure out what is going on at our house. I do not think the kids have seen Maggie yet, but they are fascinated with the elevator. I can’t wait for them to see it in action.

Yesterday afternoon I was helping the nurse change Maggie. This process takes two people at least 10 minutes. I could see the new neighbor kids watching us from the window next door, a distance of about eight feet. They could not figure out what we were doing. Because of the configuration of the pillows and the height of the bed, they could not see Maggie at all. But they could see Maggie’s foot up in the air, and they could see me standing at her bedside. When they saw me, they ducked away from window; but the little boy came back.

I waved and he waved back. Then I waved Maggie’s foot and he started laughing his head off. I turned my focus to Maggie. When I looked up a minute later, the little boys feet were against the window and he was wiggling them. He must have been lying on the floor of his breakfast room with his feet up against the window. He was waving back! I completely cracked up.
Suddenly his mom’s face appeared in the window and she seemed to be correcting him. I hope he didn’t get in any trouble. When I came out onto the deck this morning the shade was drawn on that window. I have to tell her he was not bothering me at all. I found him hugely entertaining.

Wait, maybe the mom is protecting her kids from the crazy new neighbor. Hmmmm….you don’t think it could be me do you???????

Thursday, September 11, 2008

Morning Has Broken

I have a unique morning routine. I get up between 5:45 and at 6:30 seven days a week and have for the past 14.5 years. At least I do on the nights I have a nurse. Otherwise, I have to stay up all night tending to Maggie. Or split the night with my husband if he does not have work the next day. Usually we do have a nurse overnight so I am going to concentrate on those mornings.
The nurse usually works 11PM to 7Am so I have to be ready for duty at 7AM. The alarm goes off at 6:30 and if I hop right out of bed, I have time for a shower before I head downstairs. That is ideal, otherwise it’s noon or later before I get another chance. Since I get at least somewhat dressed to meet the bus, it is just easier to keep the day going rather than stop and shower.
There is so much to do before Maggie leaves for school in the morning and it really has to be done in the last hour or so. It is my habit to prepare the coffee the night before so I can just hit the “start” button on the coffee maker on my way to Maggie’s room. I get the night’s report from the nurse and chat for a while until the nurse is out the door. I pour my cup of coffee and start the madness.
Usually Maggie is already dressed for school because our night nurse ROCKS. She gets Maggie dressed after giving her the various medications and breathing treatments she needs at 6AM. That is an enormous help and saves me lots of time. I have to fill the portable oxygen tank form the large liquid tank so she has oxygen on the bus and at school if she needs it. She rarely needs it during the day, but you know the one day I don’t send it…..
Her communication device also has to be programmed with the days’ news Sometimes I get this done the night before, but it is fresher if it’s done in the morning. We can include any excitement from the evening or morning if we do it last. That takes at least 15 minutes all by itself – and longer if I accidently hit “clear” instead of “ok” when I am done. You would be surprised how often I do that. You think I would learn…
The final piece of equipment for the back of her chair is the portable suction machine, which has been charging overnight. We have a few of these machines so that one is always charged up and ready to fly. She cannot be without that for even a few minutes. The backup supplies have to be in there, like saline bullets, trach dressings, sterile water to clear the tube etc. An emergency trach is always attached to the back of her wheelchair, as is an ‘ambu’ bag – for resuscitation. (Never needs that either, but it’s required)
Once the wheelchair is loaded, I turn to Maggie and do the tube feeding and the diaper change with catheterization. She is getting more excited by the minute now, because she knows we are heading downstairs to get the bus. This child loves school, loves riding the bus and loves watching me work faster and faster as the minutes tick by. All the time I’m saying, Mag, we are NOT going to make it today.
I put her jacket on, lift her up, put her in her chair, and fasten the six or seven buckles to secure her in the seat. Maggie cannot sit on her own and depends on the design of the chair and the strength of the straps and buckles to hold her up. Plus, she thinks it is HILARIOUS to unbuckle the chest harness about 50 times. She has one strap that’s “Maggie proof” and can only be opened by inserting a pen into the latch.
Now that she is in the chair, we are into the final stretch. We tie a scarf around her neck to cover/protect/hide the trach. Wait, we forgot shoes grab them to put them on when we are safely downstairs. The tray for her chair and the pole that holds the communication device also have to be located and placed on the front porch. They don’t fit in the elevator with all the equipment. Okay, Run a brush through her hair – which is short and unruly - and head out the back door to the elevator. Our elevator is a slow moving lift. You have to allot at least two minutes to go the one story down. It is fun when it's raining because the lift is open to the elements, but it’s not raining THAT often. And when it does, we get wet. That’s all.
Now that we are downstairs, we have to navigate through the basement, which is full of stuff. I have insisted that a path as wide as the wheel chair be maintained at all times and HEADS ROLL when that is not the case. But that’s not very often either. I open the garage door and hope the bus is not out there waiting. We put the shoes on, talk to the school nurse who is waiting for us, realize she needs some other supplies, which we quickly gather, the bus comes around the corner and Maggie boards via the wheelchair lift. The nurse gets on the bus and the driver takes off.

Now its 8:30 and I can start my day.

Wednesday, September 10, 2008

Shower of Power

The nurse came out of Maggie’s room with a handful of towels and asked if they were clean or dirty. My first thought was, if you have to ask… Then, I remembered. Those were the clean towels that would not fit in the cabinet. People were coming to dinner and I had to get them out of the way so I hid them in the shower and closed the curtain. I love that shower. It hides a LOT of stuff.

Our house is small and filled with 22 years of accumulated crap. Now that both boys are off to college, we have two empty bedrooms, which I thought was really going to help with the clutter. It does, some, but not nearly as much as I thought. The bedrooms are upstairs and the problem is the main floor, which consists of a living room, dining room, kitchen, bathroom and Maggie’s room, which started life as a breakfast room. The living room and kitchen are fine. A bit cluttered perhaps, but fine. The biggest problem is the dining room. It is the physical and activity center of the house. Since we no longer have a breakfast room, the dining room table is the only place for us to have meals. The dining room also doubles as my office, and generally, that one table is covered with papers and half-completed projects. I can’t really move my office upstairs because I have to be close to Maggie. I often have to jump up and help Maggie or help the nurse. When there is a nurse here, it is not practical to run downstairs every 5 minutes. When there is not a nurse here, I cannot leave Maggie alone for even a minute. So, the dining room will continue to present issues.

Maggie’s room is small and completely full of medical supplies and equipment that she uses every day. I’m talking supplies of all sizes and shapes. There is a huge liquid oxygen tank, respiratory equipment, feeding pump, diapers and all the supplies that go with that and several drawers full of medications, tubes, feeding bags and whatever else she needs. This is in addition to her clothes, shoes, books, etc. It is a challenge to fit everything in there because the room has to be open enough to accommodate her wheelchair and, because it is the access to the back deck and elevator, needs to be kept somewhat under control. Maggie’s nurses are pretty good at that. The room does not have a closet because it was never intended to be a bedroom. Therefore, we have to be creative.

The shower in Maggie’s bathroom hides a multitude of supplies. It is a small shower and already full of equipment, so no one really notices a few extra things thrown in. It is a tight squeeze. It just fits her shower chair; in fact, Maggie cannot extend her legs off the chair because she hits the wall of the shower. Tubes hang from the shower rod to dry and pieces of respiratory equipment dry in a basket on top of the chair, while other tubes etc soak in a vinegar mixture below the chair. Clean towels on top were not a problem.

We recently started making a concerted effort to have people over to dinner. It is our only real opportunity to socialize and we want to avoid becoming hermits. Besides, it forces me to clear off the dining room table. As long as I am not hiding piles of papers in the shower, I’m still ahead of the game. And if you are ever here for dinner and I head to the bathroom to get the dinner rolls, run as fast as you can out the front door.

Tuesday, September 9, 2008

Living in Wonderland

The new wheelchair van needs some tweaking. I took it over to Berkeley to have a companion seat installed so that when there is a third person in the car that person can sit next to Maggie and suction her trach, as needed, which is all the time. Right now Maggie’s wheelchair rolls into the van behind the front passenger seat. There is nothing else in the middle and a bench seat in the back.
We have been wavering about whether the extra seat is a good idea or not, but the decision was made on our recent road trip to Mendocino. That trip was our first car trip over 30 minutes since Maggie got the trach placed 18 months ago and it clarified the need for the seat. Steve was driving the curvy coast roads and I would have to undo my seatbelt and turn my body around on the front seat to reach her with the suction machine. Dangerous for all concerned. Time for the companion seat. At least I can ease up on my Olympic gymnast training to help Maggie when she needs it.
The place that works on the van is in Berkeley. It is about 30 minutes from here. However, of course once I left the car there I had to get back via public transportation. That was 90 minutes. But what an adventure. The shop is in the flats of Berkeley, a completely different part of town than the University. It is rather … seedy, at least in the industrial part I was in. Last time I tried to get a cab to pick me up there and they would not come. Does that explain it? The guy was p.o’d about work I needed done, even though I had scheduled it four separate times with his office. I figured asking for a ride to the BART station was probably not a good idea, so I just started walking.
BART – or Bay Area Rapid Transit – is a wonderful transit system for me, the occasional user. (Regular riders often have different opinions.) It goes through a tube right under the San Francisco Bay and deposits you in downtown San Francisco. Of course it was about a two-mile walk through a fairly rough area of Berkeley/Oakland to get there, but I just started hoofing is. I talked to my sister on the phone while I walked and the neighborhood got a little better with each passing block. There were a lot fewer gated windows and “Dangerous Dog” signs. Train came immediately and when we arrived in SF, I came up onto Market Street to hear a woman SCREAMING at the top of her lungs in Chinese. She may have been preaching. I do not speak Chinese so I am not sure. The best part was no one was paying any attention to her.
I still had a bus ride to get to my house and I can take any one of four bus lines. The #5 was coming, which is an electric bus, so that is what I took. The bus had a slight breakdown when the overhead electric wire came off and the driver had to get out and put it back. I was thinking I would not want his job to work with the electrical connection behind a bus stopped on the upward slope of a steep hill. The Japanese woman behind me pulled out her camera and took pictures of the driver through the back window of the bus as he replaced the connection. That was a first for me, and judging from the look on the driver’s face, a first for him as well. The man next to me conversed with his wife in Portuguese and both were getting more and more agitated about missing their stop. I gave them directions, which I’m not sure they understood, and disembarked. Steve was home with a roofer who was Latino speaking perfect English with an accent.
It was an international trek, an adventure in my own backyard. You might think it was a once in a lifetime set of circumstances, but I have to go back on Thursday to get the van. And it will probably be the same thing. I hope that Portuguese couple is not still on the bus.

Monday, September 8, 2008

Shake ups

There were two big shake ups in this house over the weekend. One was geological, the other medical.

We had an earthquake Friday night. It wasn’t big – only 4.2 – and I didn’t hear of any damage or injury. It just shook the house causing that noise. If you haven’t heard the noise, it’s hard to comprehend. The entire house sort of groans. You wonder for a moment if this is the start of a disaster or just a mild disturbance in the force. This time it was the latter. It’s almost always the latter; but that moment of wonder causes every hair on your body to stand on end. Unlike hurricanes, earthquakes hit without warning. You can’t prepare, except generally; but you don’t have the dreadful hours or days of anticipation either. It hits, last a few seconds and it’s over. Those few seconds, though, make you keenly aware of everything you have to lose.

We were watching television when it hit in two quick jolts. At the first jolt Steve and I just looked at each other as if to say, did you feel what I felt? Before the second one hit a split second later we were both heading for Maggie’s room. It’s instinct. If this is the start of a larger quake we had to be ready to grab her. It was over before we made it the 20 feet to her room. Maggie grinned at our sudden arrival. She must have felt it because she was lying in her bed, but she did not seem any worse for the experience. The nurse in her room didn’t feel the quake at all because she was in motion when it hit. Crises averted. Return to the television.

It was a reminder that things can change on a dime. Or a warning that things were about to. Maggie gave us a scare yesterday too. It’s hard to describe how volatile Maggie’s health is. She can be happy and laughing one day and in the Intensive Care unit the next. I knew something was not right by about 8 in the morning. I cancelled a planned outing to the park and watched her very carefully. She was so listless that I worried about her shunt and considered a trip to the ER. But it didn’t really seem like a shunt problem and I couldn’t quite articulate what was wrong. So I waited, which is not without risk, but I have learned when that is ok. I’m glad I did. I finally figured out what was going on in the evening.

Maggie had been given a drug that is too strong for her and she was dehydrated. This happened once before several months ago. Apparently the new chart (that I created) failed to note the previous problem. I removed that drug from her cabinet a couple of months ago, but the pharmacy sent another box to complete the Rx and I did not intercept it. Once I figured out what happened we started her on pedialyte to balance out the electrolytes and this morning she is back to her feisty ways. Well, about 80% back. In fact she just threw the pillow out of her bed because I’m on the computer and not paying attention to her.

This is why parents should not be running their own nursing agency. Maggie is too fragile. She takes something like 24 drugs – though not all of them every day. Mistakes are part of the deal. Someone qualified should be overseeing Maggie’s care. The individual nurses covering the shifts do not have the overview. And though I have become quite well versed in managing her care, I am not a nurse. It took me all day to realize what was going on and I had no one to discuss it with I did not have a nurse for yesterday’s shift and Steve was gone all day so it was just me and the parade of horrible that kept replaying in my head. It’s exhausting and scary. Like an earthquake, it shakes me to my core. And then it’s over.

Friday, September 5, 2008

Maggie World: Teacher Joe

Maggie World: Teacher Joe

Teacher Joe

It takes a special kind of person to be a special ed teacher, especially in a huge district like San Francisco. They work a little magic with very little in the way of resources. San Francisco may be a little better than many places because of the diversity of the population, the willingness to try new things and the proximity to so many good colleges to attract the best and brightest teachers. On the other hand, it may be a lot worse because of the size of the district, and the breadth of issues that arise because we have such a diverse population. Multiple languages and cultures, learning styles, parental support, etc. Also, money problems abound here and everywhere (Especially in California) and teachers are asked to do more and more on their own dime. Maggie has been fortunate enough to have teachers willing to take that step for their students.
Teacher Joe is her current teacher and he is a cool guy. He is kind and gentle and he keeps expectations high for his students. Since his students are generally the most severely disabled, that is a bit unusual. But guess what? High expectations translate into high achievement. Teacher Joe, like Teachers Emily and Sheila before him, have pushed Maggie to do things I never thought possible.
Joe is the kind of guy that doesn’t change his plans to spend the long Labor Day weekend visiting his mother in law on the Gulf Coast even though Hurricane Gustav is bearing down. He goes anyway so they can keep her company during the long and scary storm. His flight home was cancelled and he missed school for a couple of days but returned safe and sound yesterday.
He is the kind of guy that plays the straight man to Maggie so she can tell jokes at the school talent show using her talker. Her former teacher Emily did the same thing. You don’t know how huge that is. Participating in the talent show – or any other school function – makes Maggie a true member of that school community. Maggie attends a typical big city middle school, but her classroom and school day are anything but typical. It would be easy to stay isolated and protected from the throng of typical students, but it wouldn’t be any fun, so Teacher Joe keeps them active in many school activities. The classroom is a busy place with therapists, nurses, and all types of teachers in and out all the time. It can be exhausting for everyone (especially Maggie, pictured with Joe). But Joe greets everyone with a smile and insists that adults conduct their business quietly so as not to disturb the learning that goes on.

Today is Teacher Joe’s birthday. Happy Birthday, Joe. We want to wish you a great day and another great year. Thanks for all you do for Maggie and all the kids.

Thursday, September 4, 2008


Today is doctor day. Nothing's wrong, but we have to go check under the hood and kick the tires a bit. First the ped. gastroenterologist then the ped pulmonologist.This means about three hours of hurry up and wait that results in changes and tweaks to medicines and treatments. I try to schedule a couple on the same day for efficiency sake. Next month it's a couple of other specialists. But I'm lucky, we live in the shadow of a full fleged medical center. People come from all over the county to take their kids to UCSF (Univ. of Calif, San Francisco) Children's Hospital. And I can walk there in about the same time I can find a parking place. Parking is the real mystery up there. I will still drive because here is a LARGE hill between here and there and pushing a wheelchair up that hill is very difficult and more than a little dangerous. Besides, I hav to take Maggie to school afterward - assuming we get out of there before the school day ends. Off we go. We have to leave early because the wheelchair places in the parking lot go early. It's an ugly scene in the parking structure

Wednesday, September 3, 2008


Humans have a basic need for communication. And the term communication is not limited to speech, it includes everything; Speech is only one of several methods communicating. We all have a “voice” but it takes many forms. It can be oratory, prayer, longing looks across a room and even blogging. However accomplished, we fill our need to connect with other people, with animals, or with God.

Maggie has never had speech – she is non verbal. I was asked recently how Maggie learned to communicate. The question sort of stumped me, because Maggie could communicate with me from the moment she was born. That's true with many parents and children. At first it was with her eyes, then a combination of her eyes and her facial expressions. Sign language in the universally accepted way was not an option, her cerebral palsy prevented the complicated motor function required for ASL. Eventually she learned her own sign for yes and no that became very reliable. Hand up to her mouth for yes and hand down on her leg or the tray of her wheelchair for no. At times, the “no” would be so emphatic, she would pound her fist on the tray and one of her brothers would tell her to stop “shouting”. That always made her laugh.
Even though she could not talk, Maggie still had her voice. And I’m not speaking metaphorically here. She used to yell her head off to get attention. And it worked. Especially in church. After several years, She had one word – MAMA. She would whisper it, yell it, change the intonation in her voice so she could sound mad, excited, happy etc. In March 2007 Maggie had to have her tracheostomy tube put in place. That eliminated any sound, including her one word. I miss that.
Losing her audible voice did not stop Maggie from communicating, however, now she kicks the side of the bed if someone dares to leave her alone for a moment. She pulls on tubes, which she knows will bring us running. She gets what she wants. (S P O I L E D). And she still has the other methods she’s always had. Maggie’s smile is a very useful communication tool. She engages people with that smile. She also manipulates them with it. She has a great future as a con artist.
But for all of her 14.5 years, Maggie has been working with communication and now has become fairly proficient at a complicated communication device. Think Stephen Hawking, the physicist. Ok, she is not talking about black holes or anything, but she can maneuver a combination of switches to operate her dynavox. It speaks aloud the words or sentences she chooses. She tells jokes, calls me, asks dad to read stories, calls me, makes sentences about her brothers (generally she says they’re stinky), tells her nurse to “come here”, calls the dog, calls me, asks questions, tells me what to do, and shares the news of her school day when she get home.

A lot of the time she is using it for entertainment, saying things like “Mom is Tuesday” but generally she is communicating, connecting. Even if an individual is not familiar with the machine it takes only a moment for them to say, what is that. Is she talking to me? And when someone answers – wow! It sends Maggie into orbit. She can say Mom come here five times in a row. And when I march up to her and say “WHAT?” five times in a row, she laughs her head off. She uses the device not only to communicate her physical needs or to converse, she uses it to connect with others around her. Good for her. Good for us.

Tuesday, September 2, 2008

Clement Street

Labor Day Weekend and the sun is out again in SF. Amazing and wonderful. We went for a walk to Clement Street to buy some veggies at the one of the good Chinese markets. We loaded Maggie into her chair and started the ½ mile stroll over there. Brisco the wonder dog comes along too. Maggie holds his leash, which often makes passing drivers do a double take. He is much more compliant when Maggie’s in charge. In fact, I let him pull the wheelchair for a while. He’s part Husky, so it’s in his blood. The non Husky part of him cannot pull in a straight line, though. I can let go, but have to keep my hand about two inches above the handle for a fast override to keep them from veering into the street.
Clement Street is an international little street. There are people of every nationality, and many different languages filling the air. It is a busy place and very difficult to navigate with a wheelchair and a dog. It is crowded with people coming in and out of the many shops. The occasional bus shelter takes up precious sidewalk room too and people crowd behind it in a stream of pedestrian frenzy. Some of the shops, the vegetable store in particular, attracts customers with bins stored outside on the sidewalk, making the sidewalk narrower still for the crowds of people walking by.
There is zero room for Maggie’s wheelchair inside the store. This is not a complaint a la ADA. It’s a reality. There’s barely enough room for customers on two legs in there. Maggie, Brisco and I wait outside, and take up our own sidewalk space. If people are annoyed they don’t show it. They are too busy staring at Maggie in her wheelchair holding the dog straining to find Steve in the store, lest he fail to return.

I watch two women meticulously examining every string bean to determine which ones they will purchase. I don’t have the luxury of examining each bean and quickly throw a large handful in a bag and shout to Steve in the back of the store that he needs to add these to the basket. This brings additional stares. Mothers walk by and eye us out of the corner of their eyes; the child behind her tries to do the same thing, but he hasn’t mastered his mother’s sideways stare and just gapes open mouthed. My friendly “hellos” make then him away in embarrassment. I just laugh. I know the best is yet to come. And it does.
Maggie needs her trach suctioned. She can’t go very long without being suctioned. We always have the suction machine with us. It hangs off the back of her wheelchair when we’re out, or is next to her on the floor or in bed when we’re home. I press the button and the machine starts its annoying hum. (Think dentist chair.) Everyone just stopped. The buzz of the street was replaced by the buzz of the machine. And I had to do it about four times while we were standing there, partially blocking the busy sidewalk. The only ones unfazed were Steve, Maggie, Brisco and me. I’m not sure why this freaks people out so much. But it always does. After a while they settle down and realize it’s just the way it is, but we weren’t there long enough for that today.

Vegetables in hand, we start the walk home. The stares continue. I am used to the stares. Sometimes they really piss me off and sometimes they amuse me, but generally they don’t phase me at all. I always notice, but generally I just don’t care. Today for some reason it was amusing.

We need to take better advantage of these situations. If nothing else, we should lunge for the freshest veggies while people are reacting.

Monday, September 1, 2008

Labor Day

I have a special appreciation for Labor Day this year. I guess I am management of sorts, but only because of this weird fiction imposed upon me by the State. I am now running a shell business so that the nurses who care for Maggie can still work here. I am “vendored” by the state to provide the service, but I am not a nurse. Hence I have to find, hire, fire the nurses to care for Maggie and then pay them. At the end of each month, The State of California pays me back (theoretically) for the outrageous funds I have “fronted”. It’s a whole crapload of work for me and a huge economic strain, but it’s the only way we can get Maggie what she needs.

We have nurses here 16 hours a day – including overnight so I can snore my head off and bug my husband. Maggie’s nurses are amazing and wonderful people – mostly women - who work all hours to care for Mag. And she’s not an easy patient. Maggie needs all sorts of skilled care all the time – and I mean every minute or so - and she thinks it’s HILARIOUS to interfere, kick, pull and do anything possible to make the nurse job more difficult. None of these procedures hurt her and I suppose this is her way of exercising control. She laughs her head off the entire time she is acting out, and it’s hard not to crack up. Even the nurses have to laugh. Usually. Sometimes they get very frustrated with her – but that just makes her laugh harder. As her mom, I have to admit I’m a little proud of her defiance and ability to exercise what little control she has over her environment. As the mom who will have to do every bit of this work myself without these nurses, I cringe and try to get her to stop.

I need these nurses. They care for Maggie and they care for me. They redefine Labor and commitment. Happy Labor Day to all who labor and a very happy Labor Day to Maggie’s nurses. Now get back to work.