Wednesday, March 31, 2010

Caution, Men Working!

It was supposed to rain like crazy today, but so far, it’s beautiful. Despite this, we are staying in today. Nonetheless, it’s been an exciting morning. We are getting the house painted and the job started this morning. We are literally stuck in the house for the morning, though. We can’t get out because there are workmen everywhere and getting the wheelchair by would require pulling guys off ladders and interrupting the scaffolding project.

This is something we have put off doing for a long time and can’t put off any longer. It’s been 13 years since we painted the house, and with the salt air and fog we get here that is a long time. It held up very well, but in the last year or so it’s been apparent that it needs help. Because the house is so high they are putting up scaffolding in front. (in the back there is a deck off the first floor that allows their ladders to get to the top.

This morning I pushed Maggie into the front room to watch the scaffolding go up. She cracked up when a workman walked right in front of the window. It’s one story up and we don’t usually see a person up close and personal like that. I told her he was just extremely tall but that was not amusing to her (I laughed of course) She just gave me that “Honestly Mother” look. I tried to catch a picture but I coulnd’t get her laughing and didn’t think it was appropriate to ask the guy to pose. But here is the view Maggie found so entertaining.

After this morning our ingress and egress of the house will not be impeded. In fact the scaffolding guys are already finished and gone. The painters know we have to get a wheelchair through there and promise not to leave anything in the way. I, of course will verify that with my own eyes before they leave today, but I am not too worried about it. The nurses will not be able to use the driveway for a week or so, but we will just have to do the car shuffle every couple of hours to avoid parking tickets. (fact of life here in SF)

Here are the “before” and “during” pictures with the scaffold and cover. ( It is the law in SF that the job be covered so that the lead paint being scraped doesn’t fly around the neighborhood.)

Big reveal in a week or so, weather permitting. Now that we're ready to to the storm seems to be arriving.

Monday, March 29, 2010

Mom's don't always know best

A disabled child often cannot participate in the things “typical kids” do. As parents, we sometimes have to go through the motions even though we know it’s not going to work. When invited to something impractical for Maggie’s ability level, I smile and say “sure,” but I know she will not be able to participate. It does not go away as they get older. It is always there and it is hard to explain, especially to well meaning people who just want to be inclusive. I have developed a specific churn in my stomach when a situation like this arises.

I felt the churning all week as discussions about the High school prom were being tossed about. Maggie at the prom? Ridiculous! The loud music freaks her out, she can’t wear a dress because of the configuration of the straps on her wheelchair. Also she can’t go alone, I would have to accompany her and that’s just not right that a parent go. It would be miserable for everyone.

Unless, by chance I am completely wrong.

This started last week when Maggie came home with a flyer advertising the Princess Project, which is a wonderful program that gives prom dresses and all the accessories to girls who cannot afford them. ( The girls can go and pick out any dress, shoes, tiara etc, try them on and use them for their prom. When I was in the classroom on Friday one of the teachers asked if we got a dress from the Princess Project. I said, “well, I can certainly buy her a dress, but I’m not sure the prom will be happening for Maggie”

She was aghast. “Why not? All the kids go and they have a great time”. I explained my reasons and listened to her tell how great it would be. I asked if it was for everyone and she said only juniors and seniors. Maggie’s only a freshman but Juan, Tyre and Robert are all going and each wants her to come. I guess she’s the “date” of a senior – or three seniors. I smiled and said “maybe we’ll give it a try for a little while”, but inside I felt that well known stomach churn.

Yesterday Maggie and I were shopping and I asked her if she wanted to look for a prom dress. She said yes, so we went searching. One of the many problems I anticipated is finding a suitable dress that Maggie can wear. She has a young woman’s body but she is the size of a little girl. How would I find a dress in the little girls department that Maggie could wear to a prom?

Surprise surprise, there were quite a few. Many seemed very revealing, but I realized most girls that wear clothes from this department are not developed so the dresses would be fine. They would be a bit much on Maggie, however. Also, Maggie has absolutely NO sense of modesty whatsoever. A spaghetti strap dress would just give her something to pull on. Her chest would be out there for all to see.

I found a turquoise dress that could work, though it had some little girl flowers and plastic beads on it. Those came off easily. I found a scarf the same color with peace signs all over it and draped it over the dress. Maggie started signing YES! YES! YES! Ok, I said, , let’s buy it.

As we headed back to the car, Maggie kept grinning and touching the bag with the dress and scarf in it. It was as thought she was saying, “ok, I’m really going.” She was beyond delighted and I was grinning from ear to ear.

I sill don’t know how we will get the dress on with the straps in the chair (I can cut the dress if need be), or who will accompany her the night of the prom (it can’t be her mother or one of the old nurses) and I don’t know how she’ll react to the music. But I do know the churning in my stomach is no comparison the excitement in hers.

Maggie is a teenager and she can tell you.  Sometimes moms are just wrong.

Sunday, March 28, 2010

Wheelchair woes

It's been a tough weekend for Maggies chair. Last night she arched in her chair and the entire head rest snapped. Her force is so strong she snapped the screws holding the thing in place. I had to cobble something together so she could use the chair today. I did a Rube Goldberg arrangement with bungie cords and bought some time. We didn't leave the house because if my repair failed, which it could at any minute, she would be screwed. She cannot use the chair without the headrest. She cannot hold her head upand I could not push her home and hold her head at the same time. Good thing school is out this week; there's no way she could go to school with the chair like this. Steve is home now and he can do the epoxy trick that will hold us until I can get it back to the Wheelchair place. You may recall I just had this fixed on the 11th of March. Perhaps it's time for larger screws and a more thorough fix.

In addition to her headrest, we are having trouble with one of the switches on the communication device. the switch is loose on the machine. Maggie needs the switch to move the dynavox to the selection she chooses. Once again elastic comes to the rescue.I put a rubberband underneath it and hooked it over the top of the machine. This lifts the switch just enough to make it work.

This carefully and highly engineered chair and computer are working only because of bungie cords and rubberbands. Impressive.

Friday, March 26, 2010

Do You See What I see?

I was so hoping the new administration in Washington would take some of the emphasis off standardized testing in the schools. Maybe they will eventually, but it certainly is not happening yet. There is federal money available to help some ailing schools in California and presumably in the rest of the country as well. However, schools that are “lowest performing” on test scores, are forced to take some draconian measures in order to get the money.

According to this morning’s SF Chronicle: (

Schools on the lowest-performing list each will be eligible for up to $2 million in federal Title I money annually for three years if they initiate one of the following reform strategies starting in 2010-11:

Turnaround model: Replace the principal and at least half of the existing staff. The new principal would have flexibility to hire and to set the school calendar and budget.

Restart model: Convert to a charter school.

School-closure model: Shut down and send the students to higher-achieving schools.

A transformation model: Replace the principal, reform instruction, increase learning time and provide operational flexibility.

Maggie’s High school, Mission High is one of those schools. However because the principal has been in place less than two years he does not have to worry about losing his job. I am glad. He is a good principal and Mission High is a vibrant community with dedicated teachers and staff. I have no idea what happens next, though I am sure the school will not close or become a charter school.

Admittedly, my involvement with the school is limited to the Special Education arena. I do not know anything about how the students do on standardized tests (other than what I read) nor do I know what is going on in the classrooms. However, this is not the dark ages. The special ed students are part of the schools’ population and Maggie’s classroom is right next to classes of regular ed students. I have met several of the teachers, and I feel safe in my assumption that they are doing the best job possible.

I can tell also you this, the energy and activity in the hallways is like that of many high schools. I see essays about Haiti and posters for student government elections on the bulletin board in the hall and read about the basketball team’s success on the court. The student body is comprised of every ethnicity known to man and I cannot even estimate how many different languages are spoken in the hallways of the school or the homes of the students. The kids are respectful and polite to me and to Maggie and her peers. During class time, the hallways are quiet and during free times, they are teeming with energetic teenagers and all the drama and angst that come with that.

I’m willing to bet the smartest kids go to good colleges and those who don’t’ achieve fail to graduate – just as in every other school in the United States. I am willing to bet that some kids get into trouble for bad behavior and do not do their homework, that others are excellent student citizens and that some parents are involved but many are not, just as in every other school. I am also willing to be that Mission High has more English language learners than many high schools and there just might be a few reasons they have not excelled on standardized tests. Despite those reasons, however, the scores are improving. It is a long road back and the school is making its way.

The federal money is needed and welcome. I am sure the school will do whatever they have to do to get the influx of resources. There certainly will not be any coming from the State of California, so it will be the only money around. I wonder, however, how long the federal and state governments will continue to use one measure - standardized test scores – to measure how well a school is doing. As a parent of a child who has never taken a standardized test of any kind (by my choice), it automatically eliminates my child from the equations.

It is not practical, I know, but these bureaucrats need to walk through some of these schools before they order ½ the teachers fired or close the whole thing down. Walk through the halls and see what I see and tell me this isn’t working.

Wednesday, March 24, 2010

Don't hate me 'cause I'm beautiful!

Maggie's trying our new words on her talker.Her basic sentences sometimes contain adjectives or adverbs now. Any advance is amazing because of both the physical complexities involved in maneuvering around that computer and the abstract connections required. They don't always hit the perfect chord, though. Her sentence today made the nurse and I laugh.

"Mom, I am beautiful, unfortunately"

Her beauty is just another cross for her to bear.

Chest CT

Maggie had to have a chest CT done today. This is part of the ongoing outpatient stuff we are donig to avoid a lengthy hospitalization. So far so good. This morning Maggie had to be sedated for this test, but even with all of that we were in and out in about an hour. That's a new record. We are back at home. If I knew it was going to go this smoothly I would have sent her to school afterward. Instead she's hanging out with me telling me jokes on her talker.

I still get nervous during these tests. I can't help it. We have had far too many surprises - and very few of them good - after they take a closer look. It will be interesting to see what this test shows. We are trying to get to the cause of her repeated infections. She coughs up blood all the time unless she's on antibiotics. It could be irritation that easily gets infected, but with Maggie we just never know what they are going to find. In fact the radiologist will be in for a bit of a surprise. Maggie's anatomy is all screwed up.

When she was born, her esophagus and trachea were connected, which is not supposed to be. That was fixed surgically but there is a lot of scar tissue from that surgery as well as from the tracheostomy. In addition she doesn't really have a functioning right lung. I only learned that about two years ago - a year after the trach was placed. According to the pulmonologist, the lung formed but none of the tissue within it formed. Instead of a functioning lung it's just an empty pouch; further there is no bronchial opening to that right lower area. That answered the riddle why her frequent pneumonias were always on the left side. Wasn't an answer I wanted, but that's what I got.

Whatever they tell me will not surprise me. For all I know all the lost socks in the house could be down there. I'll just put on all some protective gear when the doctor calls with the report in the next few days.

Next stop: hematology. But not for a few weeks.

I'm worn out and it's only noon. I think I'll steal a nap when the nurse arrives

Tuesday, March 23, 2010

Health Insurance

I never watch daytime television. I used to, but found time slipping through my fingers. This morning I had to ice my sore shoulder, which requires sitting still for 30 minutes or so. I turned on the morning news and watched President Obama sign the Healthcare Bill into law. The debate is over. This is now the law and over the next several years we will see changes for many people. It will be interesting to see how the provisions of the law are actually put into action. I know it will be expensive, but I also know it will make a change in the lives of many many people.

My family has been lucky. We have always had health insurance. However, health insurance works best when you are healthy and need it only occasionally. When Maggie was born, we quickly learned the limitation of the health insurance and the devastating effects those limitations can have on a family. The insurance we had when Maggie was born was considered quite good. However, it had a lifetime cap of one million dollars. Once the policy paid out that much, we were on our own. Maggie’s first hospitalization was 11 weeks in the NICU. The bill was $550,000. We knew that was only the beginning. She would go through that million-dollar cap in less than two years. We were trying to deal with the shock of Maggie’s complicated diagnoses and the surgical road she faced while the realization of financial ruin faced us. We were completely freaked out.

Financial ruin did not happen to us. My husband changed jobs and started over with a new insurance policy. That took the immediate pressure off us, but co-pays and non-covered things were still taking a huge bite out of our budget. When you added that to the financial hit we took when I had to stop working, it was still daunting. We had not even considered her disabilities, at this point. We were running as fast as we could to deal with the increased expenses and 50% reduction in income.

Maggie’s disabilities were becoming more and more apparent and therapy and equipment added to the financial and emotional stress. There were programs to help her, but we were still reeling. We were saved by the State of California. When she was about two years old, she was the first child in San Francisco to be “institutionally deemed.” This is a fiction that opens the door to additional programs, especially medi-cal (California State health insurance). The way it works is that a child as complicated as Maggie could easily be institutionalized. If she were in an institution, the additional state programs would be available to her. Keeping Maggie at home is an obvious benefit to her, her family and a financial benefit to the State. It is a win, win, win. In order to encourage this, the state “deems” her to be institutionalized and opens the door to those programs.

I will not lie. Meeting Maggie’s needs is very expensive, but doing it this way is better and cheaper than an institution. I am an unpaid case manager who works 100 hours a week, so I can tell you right off the bat that the state is saving a lot of money by having mom do the work. This is the price I pay to get to keep my daughter at home and it is worth it. We could not possibly have kept Maggie at home without this program. Even with it, we struggle to keep all the balls in the air.

I know there are thousands of people out there who are not as lucky as we are, they do not have health insurance or have a catastrophic illness and find their health insurance is not enough. I don’t know exactly how this new Health bill will work, and I don’t know if the cost will cripple us, but I do know that a government-sponsored program can make a difference in the life of a person and a family.

Maggie is an extreme example, but she is not unique. There are thousands of kids like her and gazillions of less extreme examples. Whatever you think about the wisdom and cost of this healthcare bill, please remember there are real people with life and death issues who may be able to survive and lead better lives because of this.

Monday, March 22, 2010

Back to the Grind

It's a beautiful Monday here in San Francisco and a great day for a milestone birthday for my (much) older brother. Happy Birthday, Ed.

We had a fun weekend here. Both boys were home for the weekend. Tim was here all week for Spring Break, but Eddie just came home for the weekend. It was good to have everyone together. That happens less and less often. As you can see, Maggie is very happy when her boys are here 

They went back to school yesterday and it was back to the grind for Maggie. I believe 16 is the legal age to put a kid to work, right? Disability is no excuse. Check out this short video. It's just a peek into a few minutes of her day.  Maggie at Work

Friday, March 19, 2010

Bomb Scare!

It is unnerving to receive a call from Maggie's nurse telling me not to worry if I see Maggie's school, Mission High on the news because there is a bomb scare. Maggie and all her classmates and the rest of the student body had been evacuated to Dolores Park just across the street. I appreciated the call and really didn't worry. I wonder why not?

About two hours later I received a second call which I assumed would be the "all clear" but it was not. The kids were still in the park and they didn't know when they would be allowed back into the building. Since they had to leave so fast, Maggie's feeding and other supplies were still in the classroom. I still wasn't worried but I grabbed a feeding tube and a can of food and hopped in the car to get her.

The school is on the corner of 18th and Dolores Streets and it takes about 15 minutes to get there - mostly because of the traffic lights. Today it took at least 30 minutes, the last 15 minutes I was within a block of them but couldn't get there. The kids were in the park on Dolores between 18th and 19th. I came down 18th and realized my error. Of course there were police cars everywhere and I could not drive in front of the school. The park blocks 19th street, so I went to 17th and of course could not come down Dolores because that too was blocked. I went around another block came up 19th,turned on Dolores and pulled a U turn mid block.

The kids were lined up in the shade and I asked which one of them thought calling in a bomb threat wa a funny idea on a beautiful Friday afternoon.( All the kids are non verbal). After Nurse Janice fed her, I loaded Miss Maggie into the car and headed toward home. As I drove up the hill on the far end of the park and saw the school below, it hit me. Even though Maggie was now safely with me, I finally got very nervous. What if something had actually happened.? *shudder* Delayed reaction, I guess.

We really are sitting ducks. Fortunately, we generally don't realize it and go happily about our day. Ignorance is bliss. I want to go back to ignorance. But in the meantime, I am certainly grateful for the organized and orderly evacuation of all the students. My daughter and her class mates are the most vulnerable of all and, once again, they were in good hands.

Here's a picture of Dolores Park and Mission High when it's not full of students escaping a bomb threat. It is really purty - and the weather looks just like that today.

Thursday, March 18, 2010

A Warm and Cuddly Class

Maggie's classroom is such a postive place! The kids are encouraged to do their best and everyone is upbeat. The students are happy to be there and happy to be together.

Ms. Taylor, the teacher recently purchased matching shirts for the whole class. Today they took a photo wearing them.  You will note the adults have them on too because it is a symbiotic group!
It's sweet, but it really doesn't capture the joie de vivre of this class the way the next one does.

They are all in snuggies! They look like the high council from a sci-fi movie!

Check out Tyre on the far left, he is loving this.

Tuesday, March 16, 2010

Follow up

This is a follow up to a post from last week Maggie World: Driving Miss Crazy. My unpleasant experience at the lab at UCSF last week and my well placed complaints and blog post created quite a stir. In the week since this incident there have been a flurry of emails and telephone calls to me and God only knows how many behind the scenes. Things may actually be changing this time. Of course, that is what I thought a year ago, so we will have to wait and see. Hope springs eternal.

A couple of folks encouraged me to make an ADA complaint because of the lack of wheelchair access, but I am not at all interested in that. That puts the whole issue into another process of unknown length, creating additional delays. Even if resolved favorably, it likely would not fix the problem. The lack of access not only affects wheelchair users, but strollers too. There are far more strollers than wheelchairs and the ADA will not address the stroller issue.

If that were the only way to get things done I would do it, but there are faster and better ways to get to the same point. Legal action or quasi-legal action should be the last thing considered to effect change, not the first. It is like using a sledgehammer to hang a picture. If you swing that sledge, you have to fix the giant hole in the wall and still have no place to hang your picture. It does more harm than good.

Moreover, filing a complaint like that makes it all about Maggie and that is just not the point. Maggie is fine. Maggie has me. This needs to be fixed for all the kids in wheelchairs and strollers, especially those who do not have a loud-mouthed mom. As you may have guessed, Maggie does not fit into that category.

I suspect on some level Maggie was giggling at the whole episode last week because she was not fooled by my outward civility toward the woman in the lab. She knew I was going to blow. This woman is definitely a part of the problem, but she is not the entire problem. Both the policy and the space issues need to be addressed before they can work on an attitude adjustment for her. As the events of that encounter unfolded, it is likely that Maggie was thinking the same thing I was, “Lady, you don’t know who you are messing with.”

She knows now.

Friday, March 12, 2010

Gone with the wind

Usually the only vehicles stopping in front of my house in the morning are the school bus with the wheelchair lift quickly follwed by the van service that picks up the night nurse who is still recovering from knee surgery.As I raised the shades in the front room this morning I saw a limo outside. This is not an everyday happening. I told the night nurse her ride came early.

 In the moment I stood there my next door neighbor came down the stairs. The limo driver jumped out to help him with his stuff.

Our next door neighbors are guys in their mid to late 20’s. They are professionals of some sort, but I don’t know what they do. There used to be three but one moved away to go to grad school so now it’s just two. They are nice enough fellows but we’re not close friends or anything. When they moved in a few years ago they were all just out of college and a couple of fraternity like parties got the relationship with neighbors off on the wrong foot. After one particularly raucous evening , they came over with a bottle of wine and an apology. That impressed me. There hasn’t been a raucous party in quite a while now, I think they have grown out of the “college boy” phase. They are polite but they keep their distance. It makes sense, I could easily be their mother.

It’s funny that they live in this neighborhood. It’s not exciting, it’s all families, middle aged like mine and now younger with small kids. Many kids their age live in the Marina or the Mission where there’s more happening. They’re smart, though. They rent a full sized house instead of a small apartment and they have a place for all their toys. There are a lot of toys. They have windsurfers, golf clubs, bicycles and any number of other things showing they are fully enjoying their lives.

As I watched,  the limo driver come up, grabbed the windsurfer case and tried to make it fit it in the trunk. I don't know where my neighbor is going, but he has a limo driver dealing with his windsurfer.  I thought to myself, "Man, these guys have it figured out."

Maybe Maggie and I should try windsurfing. I'm sure that's easily adaptable for wheelchairs and trachs. Ok, maybe not. I'd be happy to just go down the to the bay to watch the windsurfers.

I'll be outside waiting for my limo.

Wednesday, March 10, 2010

Driving Miss Crazy

Warning, this is long. It's probably something I should wait to post because I'm frustrated and angry, but I want it all written down and documented while it's fresh in my mind.

I drove the car yesterday for the first time since my surgery a week ago. I did not have any actual restriction on driving but I felt so distracted I thought it best to wait. Driving was fine. I just should have avoided Destination: Crazytown.

Maggie needed to get blood work. This is part of the outpatient testing we are doing in an attempt to avoid a lengthy hospitalization. As soon as she arrived home from school, her nurse Josephine and I loaded her into the van and headed up to UCSF. I quickly discovered the movement required to lock the wheelchair into place is quite painful to my newly repaired shoulder. Filed that information and kept going. Onward!

We arrived at UCSF at 3:01PM. I stopped in front of the medical building. The BEST thing going at UCSF now is the valet parking for the medical building. Parking is such a nightmare up there, especially for wheelchair space. I want to kiss the valets every time I see them. I stopped and unloaded Maggie expecting the guy to come running up. I saw one of them moving a stool at the entry. I waited a few moments and then went in to ask. Valet stops at 3:00. Unnngh. Ok. No problem. Josephine could stay with Maggie while I drove into the 9 story parking structure to find a space. Onward! I did find a wheelchair space fairly quickly. Of course there was a giant truck in the space next to it so there was no way I could get the ramp down, but Maggie was already out so I grabbed it. Maybe he would be gone when I got back.

Getting an elevator that is not crammed full of people is the next order of business. Maggie’s chair is BIG and the three of us and her chair take up ¾ of an elevator. We managed to get her up to the second floor to the pediatric lab. This lab has served Maggie her entire life. It is a very small room behind a larger anteroom off the main waiting room of the pediatric clinic. It has been a while since we’ve been in there and in our absence, it has apparently become the capital of Crazytown.

In January of 2009 – 14 months ago – I snapped a photo of a sign hanging in this lab saying that strollers and wheelchairs were not allowed. I was dumbfounded at the sign, no strollers in a pediatric area. I’m sorry, WHAT? And no wheelchairs in a medical setting? How could this possibly be? At that time, Maggie was not denied the care she needed. The tech never said a word about it and took Maggie blood in the doorway of the lab as that is as far as the chair would reach. He accommodated her and her chair. That is all I would ever expect and that is fine with me.

Still, I posted about the sign and brought it to the attention of the “higher ups” at UCSF. They were aghast. Things were going to change immediately. Thank you thank you thank you for bringing this to our attention. There is no excuse for this, etc etc etc. I pointed out that the access issues could be remedied easily and inexpensively by rearranging the space. No construction necessary.

I felt good. I had effected change for overwrought parents of sick children.

Only no I did not. I fixed the SIGN, but not the problem with the sign. Apparently, the 14 months, meetings, and hand wringing had effected only two changes. The first change: the sign was now typed, grammatically correct and a bit more polite, indicating there was an accessible lab on another floor. Note: the accessible lab is not pediatric.

Here are the two signs from January 2009 and March 2010. Progress!

I waited. I did not want to wait for another empty elevator if I did not have to. I expected the same thing to happen. Maggie would be poked in the doorway of the lab room. I expected far too much. This is when I discovered the second change I had effected. The tech was empowered by the sign.

The woman came out, looked at the chair, and said (nastily) “if she can’t fit, you can’t come in here.” Josephine and I just looked at each other in wonder. I said cheerily,” oh we can make it work; we’ve done it many times before.” The woman turned on her heel and went back into her cave. I moved a couple of chairs to fit the wheelchair. I did not realize one chair was holding the lab door open. When I moved it, the door closed and locked. The woman was inside. I waited for her to reopen it, but she did not. I knocked. She opened it and said, “You can’t move the chairs.” I (fake) smiled and said, “We’ll put them back.” I asked her to move the tray of papers out of the way and she said, “if she’s can’t come all the way back here you will have to go downstairs.” “No,” I responded.” You can just bring the tubes etc over here. Maggie is now in your lab and ready for action.” (We are talking about four feet.) She said no. She was dug in. I told her Maggie is served in this lab all the time, wheelchair and all. She called her supervisor and instructed me to wait to speak to the supervisor.

I have now waited for a valet who did not come (my fault), an empty elevator (sad reality), and waited for our turn to be called. I wainted long enough. I said I WILL be talking to you supervisor, but right now I need to get this child served. I gave up and we went to the other lab. The techs there were professional, friendly and kind and had the job done in less time than the conversation upstairs took.

We went back to the parking lot and, of course, the truck was still there so I could not get Maggie back in the van. My day would not have been complete if it wasn’t.

It is really nice to be driving again, but I’m never leaving the house.

Tuesday, March 9, 2010

Lovely Young Ladies

I have been an active volunteer in my community for the past 15 years, since Maggie was about a year old. I have served as a member of the board of director of several non-profits, usually two or three at a time. Currently I am involved with four separate organizations, all dealing with issues involving children. Four is too many, though, and I am stepping down from one to concentrate on the other three, which are organizations that have directly benefitted Maggie or my boys at some point in their lives.

Like so many other good things in my life, my introduction to the non-profit world came via Maggie. Of course, I knew it existed before Maggie was born but my participation was limited to the occasional check and arm lengthening exercises so that I could give myself a strong pat on my own back. When Maggie was born, non-profits focusing on disabled children became great resources for me. For example, the Blind Babies foundation sent Jeri Hart, a home counselor, to us. She was the first to show me how to look at what Maggie COULD do instead of what she could NOT do. That changed my attitude about the challenges Maggie faces and thus changed my life. I wanted to pay back what I could and when they asked, I joined the board. That was the first of at least eight non-profits with which I have been involved.

For some people, it does not take a life-altering event like Maggie to jump in and help.  I like to think of myself as a person who is generous with my time and talents, but this was not on my radar until I got a wakeup call. Some get involved without the wakeup call or feeling they want to pay anything back. Some just jump in and help. This impresses me

I was particularly impressed by the group of young women on the event committee for a fundraiser just sponsored by one of the organizations I work with. All are in their mid 20s, working in various fields. Some have a connection to one of us “older” women on the committee, daughter, niece, friend. Some are there because their friends have that connection. None of them is connected with or benefits from the work of this particular non-profit. They are young professional women who can do anything they want. They just got involved to be involved, do something positive and spend time together.

They energized the committee and the event getting many of their young friends involved. They showed up at the meetings, and listened politely to all the “over 50” women talk and over analyze every facet of the event. When they left the meetings, they solicited many if not most of the donations of wine for the event and gifts of every type for the silent auction. They encouraged their friends to attend the event and breathed life into the fundraiser. Though I have no idea how much money we raised, I know the event was a huge success and everyone had a fabulous time.

I certainly was not doing anything like that when I was their age and despite my lengthy experience with non-profits, I have not seen folks in this age group involved in any of the other organizations with which I have been affiliated. I have to tip my hat to each of them. They just jumped in and had fun helping. I doubt any of them even do arm lengthening exercises to pat themselves on the back, so I am going to do it for them.

Lexi, Kelli, Annie, Morgan, Leigh and Melissa, You are amazing and generous young women. Your work is appreciated and your willingness to be involved commendable. Thank you.

To those of you reading this, go out and volunteer. It is a good thing to do and you may actually find yourself having fun.

Monday, March 8, 2010

Maggie Mobile

If not for her clever and very handy father, Maggie would be without the use of her wheelchair right now. The thing is falling apart. It has so many loose or missing parts it is a wonder that it is holding together at all. We are supposed to have professionals helping us in this area, but that help is not forthcoming. Hence, Superdad jumps to the rescue. Steve’s combination of epoxy, duct tape, reinforced screws and determination are all that holds it together right now. I have to hope and pray it makes it until Thursday when we have the first available repair appointment.

Maggie’s wheelchair is an amazingly over-engineered thing, which is customized for her needs. Maggie cannot simply be plopped into a generic wheelchair. She needs complete support for her head and trunk. The straps have to secure her but cannot interfere with the tracheostomy or gastrostomy tubes and care must be given to avoid undo pressure on the shunt in her head. The chair has to tilt in space so that Maggie get some relief from being upright without putting pressure on her spine, but should also recline so we can tend to her physical needs in the chair and minimize transfers. Believe it or not, the products offered from the manufacturers include many of these features and the rest are relatively easy to achieve through customizing a seat and strap system.

Impressive, but not complete; customization does not guarantee performance, however.

The wild card in this card game is Maggie. Once all those features are in place, the chair has to be fortified with kryptonite or something to prevent Maggie’s constant and very strong movements and tone from damaging all the components. Her personality is another huge factor. Maggie has never met a belt she can't unhook or a screw she can't undo. This is a generalization but I suggest that most individuals as disabled as Maggie is, who need all the bells and whistles of a fully supportive chair, either don’t move as much as she does or are more cooperative and kinder to their equipment. . We need a “Maggie mobile”, one that can stand up to her challenges.

Keep your fingers crossed that the headrest holds together until Thursday, that the footplates stay on (broken three times in the last week) and that we find something for Maggie to sit in while I take the chair in for work. It would be so nice if I could get some help with this given my current physical status, but that does not appear to be in the cards. Hence, the plan for Thursday is this:

 put her on the school bus as usual,

 drive to school get Maggie transferred into a power chair that she gets to use (which is a bit too small for her)

 take the empty chair to the shop,

 run to my doctor and get the stitches removed from my shoulder

 run back downtown to get the now repaired chair,

 return to school and transfer Maggie back,

 go home and have the school bus bring her home.

 Lather, rinse, repeat.

Note, I do not have a backup plan should the magical epoxy job fail between now and Thursday.

I need a pit crew.

Picture from Halloween 2007

Thursday, March 4, 2010

Day of Action

march 4 was a Day of Action in California. This was the day set aside to protest cuts to public education over the past years and especially the deep cuts still coming. Students from elementary, middle and high school as well as college students took to the streets in protest. Maggie was not exception. Here she is with Juan getting ready to head out to the rally at Mission High. If you notice her sigen says "Put your hands up to Save our schools." I'm sure that's a shout out to Maggie's favortie song, Beyonce's "All the Single Ladies"

Don't they look like rabble rousers?

I certainly hope someone listens to the students!

Marching forward

March, which was looking so dismal for this family has a new and improved outlook. The pulmonologist called yesterday with a great gift for Maggie’s birthday. She decided that we should handle Maggie’s upcoming tests on an outpatient basis. That means Maggie will NOT be going in the hospital for 10 days after all. Of course if the tests show something, that could change, but for now WHOO HOO!!! That was excellent news! .

It will take me a week or so yet to be able to get her to UC SF to do the tests and then I will have to bring a nurse with me. I am pretty helpless with this shoulder. It is only 48 hours since surgery, so that has to be expected. The dressing came off this morning. I have three small incision sites which are looking good. I’m moving it as much as I can, and that will be much easier now with that giant taped dressing off.

I have already cut way down on the pain meds and hope to be down to Tylenol by the weekend. We will see. This Percocet is strong. I keep passing out in the chair and have zero ability to concentrate on anything. I took about 1/3 of a pill this morning after going all night without one, so I am getting there. I may even try to read a book today. (Lofty goals, I know) If the pain starts to escalate, I will take another1/3. I am sure the lack of concentration is due to the meds. I sat in a chair yesterday hooked up to the ice machine and stared into space. I did not even really watch television – but I had HGTV on all day. Now I can decorate and stage my house like nobody’s business.

The poor dog does not know what to make of all these changes. When I got out of bed Tuesday I was all bandaged up and in a sling – but my arm was not in the sleeve. Brisco just looked at my empty sleeve with a panicked look as if to say, “What Happened? Should I tell her that her arm is missing” He was very attentive and sweet. Today my nephew is coming to take him for a long walk, which he has not had in a few days now.

The nurse just called from school. Maggie is insisteng that she’s sick and needs to come home, but there’s nothing wrong. I talked to her and said to stay there and partidipate in the Day of Action protesting all the education cuts. Poor Maggie just knows that her routine is upset and things are out of whack. She assumes she must be sick. This just throws her for a loop

I like the doctor that did the surgery, but his PA (physician’s assistant) leaves something to be desired. He was the one who I had to argue with the get the MRI, and then when I got it surgery was indicated. He called yesterday to check up on me and said, “This was really no big deal.” Ok. I am sure folks have far more serious surgeries and they deal with more serious injuries, but I do not think it is helpful to tell someone 24 hours post op that it was no big deal. It was to me, buddy.And it’ is upsetting my family and my home life. I cannot lift Maggie for several weeks and that is a big deal to her, to me and to my husband with his bad back. That PA is a toad.

I did get to change clothes today and tomorrow I can shower. Now THAT will be a big deal and good for everyone.

Wednesday, March 3, 2010

Shouder and sixteen!

Survived surgery. I haven't even taken a pain pill since the half one I took before bed last night. (That may change soon, though.) This pain is more tolerable than the pain I was in before the surgery AND it will improve everyday!

My sister Ellen was incredible yesterday. She was here at 6AM and stayed through the whole thing. She and Steve got me home around 2 and she stayed until about 4. She took the day off to care for me and she brought a couple of meals!. This was a busman's holiday for her. She's a nurse in a shoulder surgery clinic in Sana Rosa. I strongly considered going up there for this surgerym but it's an hour away and it just added another layer of complexity to my overly complex life. I got the best of both worlds, she came to me!

Today is Maggie's actual sweet 16th. She remains amazing!!!!!!!!!!! 
pictures from party were posted Monday!

typing one handed and signing off and heading for the pain pills.

Monday, March 1, 2010

Gifts from the Heart/Fruit Salad

The birthday pineapple party was a huge success! Thanks to a couple of folks who left comments, I learned that Pineapples are a sign of welcome and hospitality so it was a perfect theme. That's Maggie at the party using a  blow up microphones to "sing" along with the music.

Maggie made invitations to the party and distributed 30 of them around Mission High. Kids from other classes came by, as did teachers, the dean and even the principal. There was food, music and lots of fun. I have some video I have to post, but I am having trouble with the program for the moment. You will see it eventually. Here's one more shot and there are many pictures posted at

Maggie received many gifts that were sweet and wonderful. I have to mention two in particular. The dean, Mr. Zelaya (sp?) arrived with a bunch of tulips for her. As Nurse Janice said, every woman in the room melted a little bit when he did that. They are beautiful and are sitting in Maggie’s room right now.

The other gift I have to mention came from Juan, Maggie’s “boyfriend” (Quotes are necessary because Maggie seems to have a roving eye – poor Juan) Juan is the only member of the class who can walk and he takes it upon himself to make sure everything and everyone is where it/they should be. He is non-verbal but manages to let you know what he wants/needs fairly well. You should know something else about Juan. He LOVES bananas. He loves the look, taste and feel of them. His gift to Maggie, along with a hat and scarf, was two bananas. It was the sweetest thing I have ever witnessed.

Maggie and her peers are so often overlooked on everyday matters. Well meaning people comment on how cute they are or on how well they are doing, but rarely does someone stop to take note of the humanity beneath the disability. If you actually take the time to look, you will like what you find. There is usually an amazing person there- one made of pure kindness and goodness.

Before you jump to the next conclusion, let me say this: it is not because they do not know any better. These kids are not only amazing in light of their disabilities. They are amazing people. (Say aloud, “period") My daughter is one of them and spends most of her time with other amazing people. It is not a bad life, despite appearances.


Unrelated shout out to my nephew Vinny another amazing teenager. Vinny is a senior in high school, who committed himself to wrestling this year. He spent his own money to attend a camp to improve his skills. In mid season, he suffered a broken hand and had to sit out for several weeks. He came back with a vengeance and wrestled his way to the section finals, which occurred this weekend. Because nothing was going to stop him this year, he won that too and is heading to the State championships next weekend. California is a HUGE state and getting to this tournament is a BIG deal. Congratulations Vinny!