Friday, August 31, 2012

Just a little off the top, Doc.

Another random memory.

As I was brushing Maggie's hair this morning I noticed the large spot on the back of her head where the hair has broken off from the constant movement of her head against the headrest. It's been there for years. It's not a bald spot exactly, but the hair just breaks off after it gets around 1/4 inch long.  With the configuration of the new headrest (which still needs some work) there is a chance her head won't rub and maybe, just maybe, her hair will be able to grow back there. It doesn't really matter, no one can see it; but it would be nice.

Thinking about that made me remember the 50+ times Maggie had surgery to repair or replace the shunt in her head and would come out of surgery with half of her head shaved. It was hard to see, but like everything else we got used to it. It takes about 6 weeks for the hair to come back in to cover the spot fully and then it would not be noticeable.  (As a matter of fact, the spot I'm describing on the back of her head looks like she's about 7 weeks out from surgery.)

This was just a small rather inconsequential part of the drama we went though all the time. When your child is headed for brain surgery, the last thing you care about is her hair, at least the first 25 times. Then you get more practical.

In 1998, when Maggie four years old, she was scheduled to be the flower girl in her cousin Kelly's wedding. We were all heading to Montana for the wedding. Then, as now, we were never sure until the day we left if Maggie would be stable enough to make any trip or outing and my family learned to go with the flow. It would have taken a lot for us to cancel this trip, though.

About a month before the scheduled trip, Maggie's shunt failed again. She needed surgery. Sometimes these things came in clusters and she might have two or three surgeries in a couple of weeks. We crossed our fingers that it would work the first time so we could make the trip.

We were in pro-op going through all her history and allergies etc. The anesthesiologist was there as was the neurosurgery resident and the surgical nurse. When they were wrapping up their questions they asked if we had any questions. Steve and I had been through this many times and were very familiar with the procedure. He was surprised, then, when I said, "Yes, I do."

They all looked at me and I asked, "Who is in charge of shaving her head." The resident looked at me puzzled and said, "I am."  I looked right at him and said - "Do not shave any more hair that is absolutely necessary. She has to be in a wedding in a month and I don't want the pictures to be wrecked." Steve rolled his eyes and the anesthesiologist and the nurse both started to laugh. The resident looked more puzzled than ever. Very few parents give beauty instructions to a brain surgeon; but there is a possibility I am not like other people.

Maggie came out of surgery like a champ,  the procedure worked the first time and we were able to make the trip. And my fashion instructions worked too. Maggie had just about a two inch bald spot that never showed in any pictures.

Sometimes it pays to be practical. 

Wednesday, August 29, 2012

Inspirational or demeaning?

I do not have a disability and cannot speak for those who do. I speak as the parent of a person with multiple disabilities and share her world of which I am a keen observer. Sometimes I forget because disability is so much a part of my life, but the difference between being a disabled person and caring for a disabled person is vast.

Lately I have read numerous posts, articles etc written by people with varying disabilities and have noticed a very common theme. These writers, and I suspect they speak for many, find it objectionable to be considered inspirational because of their disabilities. This post is probably the one I've seen most.  They are not on earth to inspire others or to have their ability to meet real day to day challenges attributed to a good attitude.

The following picture is fantastic, but the caption is not. Captions on a picture like this one suggest that attitude is the key to overcoming challenges.

If that quote were true, Maggie would be a ballet dancer today because no one has a better attitude than she does. Obviously that's not happening.  A good attitude will not make disabilities go away and this "abelist" way of thinking is disrespecting people as individuals. ("Abelism", I am learning, is the continued marginalization of disabled individuals by those who do not have disabilities)

 Respect, accommodation where needed, recognition of challenges are welcome, but people are working hard to live their lives as well as they can and don't want to be inspiring simply because they have a disability. Frankly it simply adds to the pressure. In addition to meeting their challenges, they have to balance on a pedestal. These are human beings with strengths and weaknesses -- and by weaknesses, I am NOT referring to their disabilities. The disability does not define humanity, but it seems to be how others define persons with disabilities all the time.

I get that. I really do. I have written many times about how uncomfortable I feel when strangers make comments about how wonderful I am, or how blessed we are, or what a gift Maggie is. I appreciate it, but it makes me squirm. Strangers don't know anything about us and they are automatically impressed, inspired, or ready to canonize Maggie or me.

 But I have to be honest. I understand why people are inspired by Maggie. I am inspired by her every day. I am inspired by many of her peers as well. The kids I see in the hospital who are smiling and joking while hooked up to countless machines also inspire me. And anyone who wasn't inspired by or in awe of Oscar Pistorius (Olympic runner pictured above) is made of stone.

I am inspired to quit whining about what ever has me down. I am inspired to try harder. I am inspired to be happier and more thankful for the things I have in life, including an able body.

I really don't know how to reconcile these things. I get that there is a risk of further marginalizing disabled individuals by touting those dealing with disabilities as inspirational, but I remain inspired.

Perhaps the lesson is to be inspired by individuals instead of by disability.

I welcome any thoughts here.....

Monday, August 27, 2012

Ahhhh, Monday

No one ever says "Yay! It's Monday. 

Except perhaps for mothers sending their children back to school after a wild weekend.

I do look forward to Monday morning because when Maggie gets on that bus I can restore some order to my day. When she is home, whether the nurse is here or not, I am constantly on call and have one ear perked for the way she coughs, etc in case something is amiss. I honestly look forward to the mental and physical break. 

Of course I didn't get it today because Maggie is sick. She has a fever, which would ordinarily freak me out a little bit, but not this time. Tim had a fever and slept all weekend and Steve doesn't feel well either, so Maggie is just catching the virus that is making the loop around this house. So far, the only one untouched by fever is me, but I stayed in all day yesterday with a stomach issue. Don't know if that was my version of the same thing or not. Hope so, because I already feel better. 

The weekend would have been terrible if not for the kindness and generosity of Maggie's bus driver. Maggie arrived a bit late on Friday  like 3:50 instead of 3:30. She was tired but happy. I waited for her to get home to run some errands and because of the delay I left as soon as the nurse took her upstairs. I returned home right around 5:00. When I came in the nurse asked me where Maggie's tray was. I hadn't even noticed that she didn't have it when she got off the bus. The tray is essential because she cannot "talk" without it. The switches for her talker are on the tray. Now it's 5PM on Friday and we don't have a tray. The weekend was looking mighty bleak. 

I frantically called the bus company but they said they didn't have it. I texted the nurse who apologetically told me she slipped it right behind the bus drivers seat. I called again and told the bus company that and said tell me where to go to get it. I will drive to wherever he is to get it. The bus yard is across town, but I didn't care. We HAVE to have that tray. Just tell me where to meet him and I will go.  She called back a few minutes later and said, "Carlos said it's on the bus and he is bringing it to your house, he just left the yard." 

I was floored. He did NOT have to do that but at the end of his work week he drove that bus all the way across town to deliver that tray to Maggie. That was probably an extra 45 minutes at the end of a Friday afternoon. Talk about going above and beyond! I was quite impressed and let him know that. Carlos just shrugged it off because he is such a nice guy. 

It was a great start to a weekend. Now if we could just get this week going.

Friday, August 24, 2012

Fast Times at Mission High

This is a follow up to the article in Mother Jones magazine that I posted the other day.

Mission High has been a fantastic place for Maggie and this interview shows Maggie's experience is not unique. This is from KQED radio this morning, it's a great interview with Principal Eric Guthertz and the author of the Mother Jones Article.

Thursday, August 23, 2012

One Alaskan Left Behind, hopefully

Four years and one month ago I had never heard of Wasilla, Alaska. Then John McCain picked Governor Sarah Palin to be his running mate in 2008 and Wasilla was on the map. Still, other than the fact that Wasilla children seem to have very creative first names, I never gave the place much thought. 

I learned from Elizabeth, one of my favorite bloggers, that another resident and politician from Wasilla is now making news. And not in a good way if you live in Maggie's world or any advanced society. Mark Ewing is running for some statewide office in Alaska and in addition to saying how much he loves the smell of burning coal (?) he had this to say about special education:

“I got to be honest with you, I am not in favor of the No Child Left Behind Act. We are spending millions and millions of dollars educating children that have a hard time making their wheelchair move and, I’m sorry, but you’ve got to say, ‘no’ somewhere. We need to educate our children, but there are certain individuals that are just not going to benefit from an education,” Ewing said.
My favorite line of the article is this: 

 "Ewing did not elaborate if the disabled children should be left at home or abandoned and left to die in the wilderness, as animals must do in nature. Clearly, he has dismissed the notion that civilized societies have a responsibility for all their citizens."  Read the whole article here

The author references Stephen Hawking as an example of one who cannot move his wheelchair, noting that Hawking was not disabled as a child. I love references to Stephen Hawking. Maggie may not be a genius in physics (but then again she might be and I don't recognize it because I am definitely not a physics whiz) but like Hawking, Maggie cannot move her own wheelchair. 

If Mr. Ewing or someone of his ilk were in charge Maggie would not get to be educated. Maggie is smart as a whip, funny, engaging, entertaining and mischievous. Why on earth would we ever want to educate her and develop these characteristics?

Fortunately, the Ewing troglodytes* of the world are not in charge and God willing, he will lose the election for whatever office he seeks and slink back into whatever coal filled cave from whence he crawled.  

Maggie has attended school and has received an education. Because of that education she has learned to overcome her profound physical disabilities and can communicate with her dynavox. Maggie has a voice, albeit computerized, that she got from her education. 

I don't think I can post what she would have to say about Mr. Ewing, though.  

This is a family site. 

. *my apologies to any troglodytes who do not share Mr. Ewing opinion.

Wednesday, August 22, 2012

Mother Jones and Mission High

Maggie attends Mission High which is the oldest school in San Francisco and a beautiful building in a beautiful setting. It has a reputation as a tough school and performs badly on the standardized tests. This information does not square at all with the experience Maggie has had there.

I just saw this article from Mother Jones Magazine, that demonstrates the wonderful things happening at Mission. Also, I knew Carlos Santana went there, but I only learned from this article that Maya Angelou is also a Mission High graduate. Amazing.

Hard to believe, I know, but Maggie did NOT make the article. Nonetheless, I can make this observation. The way Mission handles the disabled and special ed population is very much in keeping with the caring demonstrated in this article. The teachers and staff are very helpful and encouraging to all the students.

It's long but definitely worth reading. It just might challenge a few stereotypes

Mission High Rocks.

The Ferrari of Wheelchairs.

I used to say Maggie's wheelchair was like a Cadillac because of all the bells and whistles. Now I think a better comparison is a Ferrari. It's sleek and pretty, but CONSTANTLY in the shop.

Day 3 of school.. Day 6 of the long awaited wheelchair repairs. Day 1 of me going to school to meet with the wheelchair guy about the problems with the new equipment, which now has its first piece of duct tape..

Ahhh. I'm back in the saddle again.

The duct tape is not to cover something that's ripped, but to prevent Maggie from unzipping the cover to the yoke on the headrest. She discovered the zipper about ten minutes after the new piece was installed and pulls it down. Then she starts clawing at the material underneath which is something like a hard foam. I didn't realize that at first until I saw something black on the edge of the opening on her trach. I shrieked and jumped up thinking there was a bug about to crawl into her lungs and quickly swished it away. It wasn't a bug, but there was the same material in her hands. Then I saw the claw marks in the material exposed because Maggie unzipped  it. Out popped the duct tape lickety split.

Protecting Maggie from herself and her unzipping fetish is easy, however. The bigger problem is that the new headrest does not work for Maggie at all. Sad but true. We waited months for it and it's not right. It's not broken - YET, but it is unworkable and needs constant tightening.

The guy said he thought the "set screws" weren't properly tightened, but I know it's not that simple. This is a case of Maggie's big heavy head, that is constantly moving and generally extending back, overpowering this overly intricate set up. We need something with less moving parts that will provide her stability. It needs adjusting constantly (like every 10 minutes)  and several times I  have to take it completely apart to make the adjustments.Yesterday I thought perhaps she doesn't even need the long yoke piece and simply removing it would fix the problem. Nope. As I did the temporary repairs her head kept falling to one side. I could not fix the chair and hold her head at the same time and had to call Steve from upstairs to lend a hand. It's craziness.

 In addition the yoke is dangerously close to her trach. If Maggie turns her head quickly, it could knock the tracheostomy tube right out of her neck. And that is completely unacceptable.

The other end also presents potential dangers.  The new foot box came as a split - that is separate pieces for each foot. That is just an error. It should be one solid box which provides fewer spaces to get her foot wedged.  I spoke with the guy on the phone and he remembered we did it separately for a specific reason. I said no. The appointment came just AFTER we had to call the fire department to rescue Maggie after getting her foot wedged into the chair. (Maggie World: 911. What's your emergency?)

Hopefully it won't be months to get the right parts.

Meanwhile, I going to look at a fancy red Ferrari for me. Why should Maggie have all the fun?  

Monday, August 20, 2012

Sing it with me!

It's the MOST wonderful time of the year!!

School begins today in San Francisco, California.

Rejoice and be glad!

One student in this house is very excited.  She is ready to be a senior in high school. She is excited that she will have another girl in her class this year. (Maggie has been the lone girl for two years.) She is ready to be out of this house and busy all day long. Maggie has been making sentences about it all weekend. All day yesterday I heard,

"Mom, I am excited to go to school tomorrow on Monday, Mom."

"Yes, dear, so am I. This is what you call a win win situation."

Here's the Happiest student in the world ready to begin Senior year. I hope she doesn't torment the freshman.

And for nostalgia, here's the Staples commercial that I miss so very much this time of year.

Thursday, August 16, 2012


The wheelchair is repaired. Still a few kinks to work through but at thus very moment it is a duct tape free zone. And the sewed her name on the chair back. Slick.

Update: the morning after - the headrest is rolling around like crazy. Maggie did something to it last night. This is a new record - it was repaired for only four hours. However, I am hopeful it is an adjustment that I can be talked through on the phone. I'm not familiar with the new set-up and I think something just loosened. Fingers crossed. 

Still no duct tape. 

Fin d'ete

Summer is drawing to a close. We have been trying to pack a lot of fun in to the last week or so to finish summer off with a bang.

Maggie and I are headed to the museum this morning to meet our friends Lori and Lily. We will have a quick look at the Man Ray Lee Miller exhibit. A little dose of surrealism is perfect for our particular foursome. We are two moms, two teenage girls, two wheelchairs.

Lori and I had the best of intentions as the dreaded summer vacation started. We were going to get together with our girls and see the town. Maggie and I have been over there to visit and we did grab a quick lunch at City Hall one day but this is our first actual outing together. Everyone is so busy or has various windows of available time that do not coincide. We are all girls on the go and getting together has not been easy.*

The DeYoung Museum is a regular stop for us. We live just a few blocks away and are in and out of there all the time. Last Saturday we went with my old friend Clare and her teenage daughter Anne Marie. Maggie loved that, especially because Anne Marie actually did most of the wheelchair driving. Maggie needs a break in the routine and having another driver, who was a cool teenager was excellent. (Anne Marie is the lovely young woman who outfitted Maggie for both her 18th birthday party and the prom.) We went to the Jean Paul Gaultier exhibit of outrageous fashion designs. I pointed out a few suggestions to Anne Marie for dresses she should get and hand down to Maggie. She wasn't biting.

The museum was not our only outing in the last week, though. I wrote about our trip to the playground on my last post which was great. We also had a  great time at the zoo with Maggie's friend and school mate Patrick and his mom, Carla. Here are Patrick and Maggie with their tall giraffe friend.

Carla and I also had lofty plans to do various outings with the kids, but we didn't get it together until last week. Getting the kids together is important for them and having another parent to talk to who really "gets it" is a bonus. After our zoo outing we got together for a long walk in the park and picked the only day the sun was out all week.

Another stop in the last week has been the Dahlia Garden in Golden Gate Park. We went with Clare and Anne Marie, with Patrick and Carla and even took Steve over there separately. This time of year the flowers are all in bloom and it is a spectacular display of color on these foggy gray days.

So we are off this morning for another dose of culture and fun.  We have to grab our culture quick and head home because the long awaited wheelchair repairs are happening today!! The guy is supposed to arrive in the early afternoon and will do the repairs at our house.


This will likely be our last outing with friends as school resumes Monday.

Huzzah!! Huzzah!!

* not any easier today either as I thought the exhibit was at the DeYoung when it was actually at the Palace of the Legion of Honor. A text from Lori sent me scurrying to the right museum. Great way to start a surrealist exhibit. We were a little late and then when we got there Lily was not there. She didn't feel well and begged off. We will try again on one of the several furlough days during the school year.

Tuesday, August 14, 2012

Finding Joy, however fleeting

This morning we went to the playground. Maggie loves to go to the playground, even though she cannot really join in on the activities. She loves to watch the kids running back and forth and listen to the squeals of the little kids. Today was even better because we went with a couple of other kids who would run and squeal and then come back to Maggie to see what she was sayingand interact with her. Maggie was in her glory.

We headed to what Eddie used to call "The Big Park," which is the children's playground in Golden Gate Park. It really is "The Big Park" compared to neighborhood playgrounds. It is huge. This park was redone about seven or eight years ago and it is even better than before. There are lots of those engineered soft surfaces instead of sand and Maggie's wheelchair can go to more places. (There is still sand in some places, just not as much). There are climbing sculptures like this one that we decided was a crashing wave. I used to think it was the spine of a buried dinosaur, but the wave makes more sense.

There is one adapted swing for disabled kids or for kids who are afraid of the regular swing, I guess. It's a seat with a back instead of a sling type seat. We asked Maggie if she wanted to try and she said yes, so we lifted her into the seat. At first she did not like it.Maggie  has little or no control of her trunk or head and really needs to be strapped in to stay upright. The seat had no straps and you could tell from Maggie's face that it was scaring her. We had to stop her from falling over several times, before we got her balanced.

Once we got her centered correctly and she knew there was a hand on her, she felt safer and actually started to enjoy herself.  It didn't last long, but it was worth it. We have learned to push through the hesitation and fear to get to the joy, even if it's fleeting.

Fleeting Joy is definitely better than no joy.

Sunday, August 12, 2012

Kindness of Strangers - really this time

Encounters with strangers are frequently very strange when Maggie is with me. People will say the oddest things. They always have the best of intentions but we have been on the receiving end of some bizarre encounters many of which I have shared here. Once is a while it's just nice and sweet, and that deserves to be shared too.

Maggie and I were leaving UCSF Benioff Children's Hospital the other day after visiting her friend. The Children's hospital is located on the 6th, 7th and 15th floors of the two hospital complex that makes up part of the medical center. It is a very confusing place to navigate. Only certain elevators go to certain floors and unless you know your way around, you poke your head out of an elevator wondering if you are in the right place. A new free standing Children's Hospital is under construction and will open in 2015, but until then newcomers to the Children's Hospital walk around lost and bewildered.

Getting an elevator with Maggie's giant chair is also quite a trick. We take up the place of about four people.  We were on the 6th floor and the first elevator looked pretty full. I said, "Thank, we'll wait for the next one." An older man said Nonsense and moved folks around so there was room for us. I thanked him. He and his wife (I presume) admired Maggie's talker and she gave them one of her winning smiles. We arrived at the first floor and Maggie and I got off and I saw them peer out in that familiar "Where are we?" look. The man said "How do we get back to Parnassus? (The name of the street the hospital is on). I said, "Follow us."

As we walked down the long hall toward the front of the medical center, they were behind us and I could hear them talking. The man said, "That baby is beautiful." I smiled to myself, glad that they were in the hospital for a happy reason instead of a sad one. I brought them outside through a different door they had entered. Now they were totally confused. The woman said, wait, we need to get our car on the third floor. She started to go back inside but I pointed across the street and said, the parking lot is over there and you go down to the third floor in the elevator over there.  She looked completely turned around but her husband had his bearings.

Maggie started to laugh uproariously and pointed at the parking lot mimicking me. The woman started to laugh then and said "She gets it and I don't."  Maggie laughed harder and reached her hand out for the woman. The lady held Maggie hand for a minute and melted. She asked Maggie how old she was and I responded for Maggie. The woman was smitten. Her husband looked at me and asked if Maggie was my daughter, I said "yes she is."

He looked straight at me and said, "She is terrific, You are really blessed."

It was so simple and so heartfelt that it was very touching. i just smiled and said, "yes, I am, Thank you very much."

I left to go to one set of parking lot elevators and sent them down to the other. As I waited for the next elevator I thought about that exchange. It was so sweet and the context made it more so. He was responding to Maggie specifically, not to the general situation of a girl in a wheelchair. If that man had walked up and said that out of the blue it probably would  have creeped me out, but I knew they had interacted with Maggie and that made it OK.

More than OK, it made it great.

Friday, August 10, 2012

Wheelchair repairs

School starts on August 20 and unless there is a miracle, Maggie will start school just as she ended it, with a broken wheelchair. This is the ripped and duct taped footbox and bolt and her duct taped headrest (leopard print tape)

Two months ago Maggie's foot got stuck behind the footbox on her wheelchair and we had to call 911 for help to get her freed. In order to extricate her, the firemen had to break the footbox.  (Maggie World: 911. What's your emergency?) Steve did a bailing wire and duct tape repair which are not beautiful, but effective.
The jerry-rigged footbox joined the duct tape over the cracked tray, and the ripped headrest. Things are barely holding together. In fact, the headrest is so broken Maggie looks like a bobblehead most of the time. You can see it cocked to one side in the picture.

 Her chair is the equivalent of the car up on blocks in your next door neighbors driveway. Unsightly and in need of repair.

Wheelchair repairs are not easily done. Maggie's chair is very specialized. It has a million moving parts and is designed specially for her. It is not simply a matter of getting new parts and slapping them on. Things have to be carefully considered and measured. Once that's done, the process of getting things approved takes weeks. It's crazy. There are several steps and each one is prone to delay.

 First it goes through our insurance that turns it down and then it goes through California Childrens' Services.(CCS). The parts cannot be ordered until they are approved by CCS. CCS cannot do anything until the insurance turns it down. The insurance cannot turn it down until it is fully submitted. It cannot be fully submitted until we meet with the vendor and determine the precise parts needed. The vendor cannot be easily scheduled because there is such high demand and so few vendors who will work with CCS or Medi-cal.

We met with the vendor in early June. The insurance (eventually) turned it down, CCS approved it, the parts were ordered but they are STILL waiting for the last parts to be shipped. I called to see where we were and learned the last part will be in next week.  YAY! Just in time for school. BUT our guy is on vacation.


BUT! The other guy in the office has it on his list. YAY! According to the woman I spoke with, however, it is his plan to come here, pick up Maggie's chair and bring it up to Santa Rose to do the repairs and then bring the chair back.


I told her that will not work because Maggie does not have anything else to use and she cannot lay in bed for 24 hours. We do have a loaner power chair that Maggie uses occasionally, but it is way too small for her and she can't sit in it for more than an hour or so.  Besides, I am really really concerned about letting that chair out of my sight. If another delay happens and they have the chair, we are both screwed. Moreover if its not done next week and they insist on taking the chair, she will miss school.

If they do insist on taking the chair, I'm going with it. I will just bring my crossword puzzle and my Kindle Fire and amuse myself in their workshop. That will prevent any delays. People tend to want to get me OUT of places.

Should that concern me?  

Wednesday, August 8, 2012

Language Cop - political style

 I know many cringe at political correctness and I know I've been on this soapbox before, (see Language Cop tag),  but it is way past time to stop using or laughing at those who use the word "retarded" as a synonym for stupid.The only stupid ones are those insensitive enough to use it and offend challenged individuals everywhere.

Now it has entered the political arena.

"At an election party last night, Pennsylvania’s Allegheny County GOP Chair, Jim Roddey, brought the crowd to laughter and applause by calling an Obama supporter “mentally retarded.” Roddey, who is a long-time supporter of Mitt Romney, told the joke to a crowd of about 200: “I was very embarrassed. I was in this parking lot and there was a man looking for a space to park, and I found a space for him. And I felt badly — he looked like he was sort of in distress. And I said, ‘Sir, here’s a place.’ And he said, ‘That’s a handicapped space.’ I said, ‘Oh I’m so sorry, I saw that Obama sticker and I thought you were mentally retarded.’”

I can't even count the things wrong with this, but I can start with 1) a political party chair, albeit at a county level, finds it OK to use in an official capacity and 2) that 200 people would laugh and applaud.

I don't care what your politics are or who you are going to vote for or why. This is America and everyone gets to think what they want and vote for whomever they want for whatever reason. I have mine, you have yours. Great. That's what makes this country work.

We also have free speech, and I am a huge supporter of that. But as the saying goes, freedom isn't free. Saying whatever you want comes at a price. People will hold you accountable for the things you say. Yes, you can SAY whatever you want, but people can also object to or agree with it as they wish.  That too is what makes this country work.

Sometimes when people disagree they boycott your business as we've seen recently in the Chic-Fil -A debacle. Sometimes when they disagree, they change their vote.

 It will be interesting to see if anyone touches this.

Tuesday, August 7, 2012

Back to school DO

Maggie has been looking quite shaggy lately and that means it is time for a haircut. She returns to school on the 20th so today we got her "Back to School DO" from her favorite Beautician, Lisa at Tony's Hair Studio.

Maggie loves to get her haircut. She loves going to the salon and getting the cover put over her. She thinks the actual cutting is hilarious, but really not nearly as funny as the hairdryer. I told her yesterday the we were heading to North Beach for a hair cut today and the moment I saw her this morning she was touching her hair and saying "Mom i want to go" on her dynavox.

I was looking at me email on the phone. The nurse hadn't even left yet and, more importantly, I had not yet had any coffee. She started with that "Mom I want to go" sentence over and over and I finally said "Go WHERE?"  She pulled on her hair but I told her I wanted to hear it. There is not "haircut button on her dynavox (but I should make one.) She started hitting buttons and I knew she was going to ask for help to spell the word.

 I turned on the video camera on the phone to catch it. It took a full 3.5 minutes to spell out Beauty Salon, but she did it.  It's slow, but kind of cool. (Don't feel like you have to watch the entire thing unless you want a spelling test.) Once she gets going she picks up steam.

It was difficult for Maggie to wait until noon for her appointment, but somehow she made it. And she enjoyed it just as much as always. It's nice to see her eyes again.

Monday, August 6, 2012

Olympic moment

I am so impressed and amazed by Oscar Pistorius from South Africa, the 400m runner who uses prosthetic legs. His ability to compete at an Olympic level is nothing short of amazing. When he qualified for the semi final the other day I felt proud for all disabled people everywhere - and for all people, disabled or not because it was a huge step forward for humanity.

He didn't make the finals, but he certainly made the Olympics for me. Then the icing on the cake came at the end of the race - in which Oscar finished last - when the winner of that heat, Kirani James of Grenada, asked to change bibs with him.  This was an excellent moment in sportsmanship.

Now I'm rooting for Kirani James to win the Gold

check it out on this video. Oscars interview at the end is also great.

Saturday, August 4, 2012

Hanging with my bro

I know I've posted the second picture before, but I don't care.

Tim came home from work quite worn out and still grabbed Maggie out of her chair to hang out and watch the olympics with her. She fell asleep. Once Oscar Pistorius ran, his race, Maggie didn't care about Track and Field any more.(see below)

Here they are about 15 years ago in almost the same pose - I just can't swear that they were watching the Olympics then. It was probably Teenage Mutant Ninja Turtles of something. 

Funny, Maggie has the exact same colors on, but in reverse.  

And because I cannot get over how very cool this is, here's South Africa's Oscar Pistorius who qualified for 400 meter semi final this morning.
A great day for disabled people and all people everywhere. 

Friday, August 3, 2012

Maeve Binchy

Irish Author Maeve Binchy died this week. She was only 72. I believe I read every single one of her books. They are not important pieces of literature, nor do they pretend to be; but they are interesting, fun novels with wonderful characters. One of her books, Firefly Summer very likely saved me from completely losing my mind in 1994.

It was September, Maggie was six months old. She had already endured five or six fairly major surgeries to repair some of the physical anomalies with which she was born. I still believed that she was going to catch up, that she was having a rough start but once they fixed everything she would be OK. That was the only way I could cope.

Now there was a new problem. Maggie was crying uncontrollably and seemed to be in pain. I went to her surgeon, with whom I had a wonderful relationship. It wasn't anything from her surgeries but I still remember him looking at me and saying "I am very impressed with the size of her head." Somehow I knew that he was  not impressed  in a favorable way, but impressed  as in it was making an impression. I remember very clearly walking home through Golden Gate Park that day with a feeling of dread.

I called her pediatrician and she immediately sent Maggie for an ultrasound of her brain. The radiologist confirmed Maggie had hydrocephalus, a build up of fluid on the brain. We were sent up to UCSF and met with a neurosurgeon just outside the operating room. I still remember he was wearing low top Chuck Taylor's, (converse shoes), which was oddly comforting.  He reassured us and whisked Maggie into surgery. They were going to put in a shunt to get the fluid off her brain. There were complicating factors though. The buildup of fluid was because of a brain bleed sometime earlier. They could not do the shunt until Maggie stabilized. She went from surgery to the Pediatric ICU (PICU) with an external drain coming out of her head.

This has happened several times since and now I know the drill, but that first time was horrific. I felt my dream of Maggie's normal life slipping away. We knew she would be in the ICU for a while, but we had no idea how long. (I believe it ended up being three weeks that time.) Maggie was in an open ward and the noise and drama was very difficult to take. There were beeps and  bongs from every patient. There was emotion at every bedside, including ours. I sat next to Maggie's crib in a high desk chair for days. I held her hand and waited for her to get better. I was going out of my mind.

When Maggie is in the hospital, the most intellectual reading I do is People magazine. I read all about celebrities I never heard of and find out who is dating/marrying/divorcing whom. That wasn't going to cut it this time, though. I needed more; I needed to escape the noise, the emotion and especially the fear.

I brought Firefly Summer to the hospital. I think my sister Mary gave it to me and suggested I read it but it had been sitting at home for several weeks.  The book was long - 672 pages (I just looked that up on Amazon). I doubted I would get into it, but from the first page I was hooked. I sat at Maggie's bedside holding her hand as she slept - and she slept a LOT. I flipped the pages using the thumb of the same hand holding the book.

The noise and drama of the PICU melted away I was transported to the Irish country side. I was lost in a world of young people enjoying a summer as their little world faced changes from development.  I still remember Kate, the main character of that story and I remember there was a young girl named Maggie. I read every moment I could and finished the book in about three days, which is fast when you factor in hundreds of  interruptions  involving very serious conversations with neurosurgeons, neurologists, pediatricians, hospitalists, nurses, respriatory therapists and dozens of other medical professionals every day.

 I couldn't tell you exactly what happened in that book but I know this: That book saved me at one of the lowest times of my life.

I hope Maeve Binchy did not suffer through what I read was a "short illness." I hope she had a good book to read to stave off the pain or fear or whatever she was facing.  It really makes all the difference.

Rest in Peace, Maeve. And thank you.

Thursday, August 2, 2012


Maggie is going to GIRLS ROCK! camp this week.GIRLS ROCK! takes place at (what everyone knows as) the MTU, which is the medical therapy unit of California Children's Services (CCS).

In case you haven't picked up on this before, there are a million initials in Maggie World.

California Children's Service serves low income children and those with certain "qualifying conditions." The MTU provides therapy to those with qualifying conditions. Cerebral palsy is one of those qualifying conditions and, though not the only one I suspect it is the most common. Maggie is by far the most involved camper - just as she is ALWAYS the most involved kid anywhere - but all of the campers have some level of physical involvement or they would not be at this Camp. Some of the campers really don't need to be there for themselves but they act as mentors for the others and it's a great thing.

Maggie loves this. I took this picture of her as we headed there on Day 1.

Maggie and I spend a LOT of time together and I really appreciate this opportunity for her to have some fun with other girls.  Maggie's only recreation and socialization is school and this year she had all male classmates. This is the ONLY recreational activity available for Maggie when school is out. I do act as Maggie's aide or nurse at camp, but I try to stay out of the way unless she needs suctioning or feeding or something or intervene if an activity will trip any of her dozens of allergies. That means I am about five feet away from her all the time, but believe me she having fun with the other girls.Today I have the nurse coming early so Maggie will go to camp with her. I will run errands while they are having fun and pick them up after a couple of hours.

There are about 14 campers this year. That's the most in the four or five years Maggie has been going. At first some of the girls are sort of afraid of Maggie, which is typical, but within a day or so they are including her in their activities and laughing at her antics.  Maggie may not be able to set a table but she definitely benefits from the opportunity to socialize with the other girls. 

The Camp is great. It goes for five days and each day the girls connect a little bit more. That's part of the wicked plan. These girls are often without peers to hang with socially and miss out on some of that teenage interaction. So far they have made soap, done their nails and learned to do mini facials, made tie-dyed shirts and bandanas, learned to pack a suitcase, set a table and lots of other things. There is also a ton of information and empowerment for these young women but for the most part they don't even realize it's happening. The best was a panel of CCS graduates they had the other day - but that needs a post of its own.

The camp lasts 3.5 hours, but Maggie can't quite go that long. She needs to be catheterized every 3 hours and I can comfortably stretch that to 3.5 but when we factor in travel time, we can't stay for the whole thing. I could cath her there, but there really isn't any place to do that with privacy and that's just too much information for the other campers.

GIRLS ROCK! is over tomorrow and then we have another two full weeks before school starts. I have a few things up my sleeve, including connecting with one a couple of her different friends. She will have fun, but it will be nothing like this. For one thing, I am NOT crafty at all.

I really appreciate this camp and what it gives Maggie. In this time of budget cuts and slashing of services to the disabled, the powers that be need to come and see what these dedicated therapists put together for this group. They would be amazed.

I know I am.