Mr. DeMille, I'm ready for my close up

Ok, that was hilarious and fun.

When I first heard about the documentary "Friends You haven't Met Yet" I knew I had to go to the Dances with Films film festival in Hollywood for the premiere.

I mean how often am I going to be in a move that's in a film festival. My original plan was to fly down there and back in the same day. I was going to have lunch and attend the premiere with Elizabeth who writes this wonderful blog.

My sister Joni decided that would not do and that she was coming with me and we were spending the night at our brother Eds place in the Valley and having some fun. I am so glad I listened to her because we had a blast. There were screw ups and miscues, like any whirlwind trip, but overall it was a hoot, made more so by Joni's presence and energy.

We arrived at the Burbank airport at around 11AM and Joni insisted I wave to the waiting crowds a we walked out of the plane. (Note, there was no one there)

Elizabeth did indeed pick us up and we had a wonderful lunch in Larchmont Village in LA. She told us it was a good place to see stars and though we stared at every passer by, we didn't see any celebrities. Elizabeth could not join us for the film but she dropped us off at the famous Chinese Theatre in Hollywood where the screening would take place. That is hilarious in and of itself. Throngs of people getting their photos taken with celebrity look-alikes and trying on the handprints for size.

When we entered the theatre we had to do the obligatory red carpet walk. At first it was Joni and I just fooling around,

then when Jesse, the director and Chris, the main focus of the film arrived, we did it for real.

Joni was taking our pictures and I was trying to tell her to turn around to see what was behind her, but she didn't notice that she was just one of the paparazzi.

The film itself was great. It was 33 minutes long an included about 6 bloggers like me who post frequently about their personal lives. (here's a link to the trailer that I posted the other day  Friends You Haven't Met Yet clip) I write the blog, I've seen the movie and frankly I'm still not sure why I blog so much or what my own expectations are for what people do with the information I put out there. But I do know it led to a great trip to Hollywood.

I will be getting a copy of the movie in the mail sometime soon. I was supposed to get it afterward, but that was one of our screw ups. We had to get our rental car before the place closed and then could not get back in time for the after party. That was our own stupid fault.

C'est la vie. I'm sure there will be dozens of other Hollywood movie openings for me.

I will do a follow up to include our visit with Brother Ed and trip around the beaches, and Beverly Hills. All in all it was 29 hours of fun. But I was T I R E D on Thursday.

I might have to talk to my agent and cut back on my tour dates.

A Rose by any other name....

Flowers filled this house after Maggie died. We were completely overwhelmed by the kindness and generosity of so many. The colors, the arrangements, the smells and well wishes behind them buoyed our souls in those first difficult weeks.

My lifelong friend Sharon took a slightly different tack. She sent a live rose bush. It arrived in a package from the Antique Rose Emporium in Texas. I opened the package and looked inside and thought what a great idea. We can plant this and it will be Maggie's rosebush. I didn't know how right I was.

I can't remember now where we were going, but we were just about to leave the house so I decided to leave the rose in the box until Steve could plant it in our backyard. He did so the next morning. Steve returned into the house fighting back the tears that came so easily in those first days. I smiled and asked if it was planted and he didn't really talk, he just handed me the information that came in the box.

The name of this particular rose was "Maggie."

Sharon not only sent a rosebush that we could plant and enjoy and think of Maggie. She found an actual Maggie Rosebush. Here it is planted an ready to take off.

With any luck, it will grow beautiful flowers that look like this:

I loved this idea so much that I copied it. I went to the website and ordered three more Maggie rosebushes. They arrived yesterday. One goes to my Mother for Mother's day (late) and the other two we are taking to Mission High School today to plant in the school's memorial garden. We get a little patch of dirt in the sunny Mission District and I'm sure these flowers will flourish there.  We will put up this plaque to go in the garden too.

This was going to be just a little remembrance, but like everything involving Maggie, it has created a lot of interest. (I am bringing food for 40 and hope its enough.) We will plant the Maggie roses and put the Maggie plaque next to them. It will be all Maggie all the time. 

Same as it ever was....

I know that a rose by any other name would smell just as sweet, but I'm not sure the impact would have been quite as strong.

Concentrate on the Happy

The other day I ran to Safeway to get something for dinner. As I walked in a woman and I exchanged glances and then looked way. It took us both a minute to realize we knew each other an then hit us both at the same moment. We each greeted each other warmly and caught up right there in front of the supermarket.

Her name is Sherry and I knew her many years ago when Maggie was very little. Her twins are the same age as Maggie and we did a lot of the early intervention stuff together and went to all the same birthday parties and other social outings.

Sherry was a single mom, which is overwhelming, of twins, which is also overwhelming, and one of them had serious medical issues, which is incredibly overwhelming. Those early years were incredibly difficult for her.

By the time the kids were about four, we had already drifted apart as our lives took us in different directions. Her daughter's issues were medical, and she did not have the special education component that Maggie had. They went to different schools and life proceeded for all of us in different ways. Occasionally I would run into Sherry and we would catch up, but I think before last week, it had been about 10 years since I had seen her.

Of course I asked about her girls and was beyond delighted to hear that both are in college and that the one with the prior medical issues is now in nursing school. Really it took my breath away. I told Steve when he got home and he summed it up best. He said, simply, "That is outstanding."

When I think back on those early days it's very difficult to remember having any hope for the future. We were all so overwhelmed with the present, there simply wasn't time to think about the future. Keeping our kids alive was our first priority, and too many of my friends from those early days lost that basic battle.

When I arrived home I found myself very emotional, even a little teary. Initially, I wasn't really sure why and stopped to try to untangle all the different things I was feeling. I was so happy that things worked out so well for them, especially given the overwhelming start they all faced and I was sad for the kids who didn't make it. At the same time I felt extremely exhausted remembering those days and knowing I had been doing all of this for nearly 20 years. There were probably a hundred other things too, but those are the ones I could identify. I just kind of let things flow for a few minutes and then decided to concentrate on the happy.

Sometimes you just have to concentrate on the happy.

I am proud to have survived those early years and proud to know the people I met then and now in Maggie's World. We have all been tested in different ways and each of us has succeeded. Our kids have lived their lives - however short some were - in the best possible way and realized their potential. I just never knew then that potential was so high for some of them.

It is outstanding.

Bowled over

There are very  few sporting activities in which Maggie can meaningfully take part. This is not to say that there aren't wonderful athletic opportunities for people who use wheelchairs; there are. But Maggie is at an altogether different level. Competitive basketball and other para Olympic type sports are just not going to happen for her. Even special Olympics is a horse of a different color when it comes to Maggie's participation. Generally it requires an able body person pushing her or participating "for her." Maggie loves it but she's not really doing it.

There is one sport that Maggie can actually do with a minimum of adaptation. Bowling. She gets in there and takes her licks and laughs her head off the entire time. You really haven't lived until you've been bowling with Maggie and her friends. With the use of a ramp for the ball, Maggie and her peers can send that bowling ball flying down the lane toward the waiting pins. The ramp simply allows them to set the ball in motion, it is no guarantee of success. There are gutter balls and strikes for Maggie just like everyone else. 

We went to Sea Bowl last week to bowl with Clay, Ben and Thanh. We should have been warned that this was playing for keeps when both Clay and Ben had their very own ramps. Ringers, the two of them. Not only that, Clay actually had an extra bowling ball that he gallantly allowed Maggie to use. (It was interesting to note that the ball did not have finger holes, but of course they weren't necessary for this crowd)

With the seamless help of Dustin and Bryce, the four bowlers were ready. The ball is placed at the top of the ramp and Maggie would give it a push, laughing at the noise the ball made in the lane and laughing harder when the pins were actually knocked down. This is her face after she bowled a strike. 

There were a few other issues for Maggie. She extends her leg when she's excited. Her foot and toes were directly in the path of the ball and that could have been dangerous. I would have a hard time explaining a broken foot for Maggie at the ER so I had to hold her foot down. 

Maggie was excited to get going and would push the ball the second it was in front of her. On one turn, my hand was run over by the bowling ball. I was protecting her foot, but forgot about my hand. That will teach me. I did post short videos of each of the bowlers at my YouTube channel. I happened to catch Thanh's strike. Maggie's is here for your viewing pleasure.

  

Maggie held her own but Clay was the high scorer for the day. But her competitive spirit awoke. I have a feeling there will be practice practice practice so Maggie can get him next time.

I just need to get some gloves. 

Growing up and ditching mom

I had a bit of an epiphany the other day. Usually i am stressing about how tied down i am. Finally i started looking at it from another angle and i realized its Maggie that needs more freedom from me.

Maggie had the opportunity to socialize with some cool older folks who are accomplished AAC* users. It was great. Maggie was a little intimated but that was appropriate. She was younger than all of them and didn't know them very well. But there will be more opportunities and she will get more comfortable.

I know Maggie can hold her own communication wise when she's comfortable in a situation. I just received this picture from her classroom via text. It's a compound sentence she made on her dynavox. That is incredibly difficult to do and she does it with abandon.

If you can't read it, it says: Miss Laura, I am excited because it will be spring break and Josephine is coming to see me today.  (FYI - Miss Laura is a para in the classroom and both of those statements are correct.)

Maggie just needs the social confidence that she will gain by going on outings withOUT me. Maggie needs more freedom and a "voice" of her own.Hence Maggie now has her own Facebook page (Maggie McDonald). We have to start somewhere and this way so that she can communicate directly with folks. I will be her translator for a while but eventually she will get it on her own.

I may be in trouble when she figures out how to pay me back for all the pictures of her that I have posted. In fact, we ALL may be in a little bit of trouble.


*AAC is assistive and augmentative communication. Maggie's dynavox is an AAC device

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.

 Huzzah!

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.

Changing her spots

Maggie discovered some loose fabric on her headrest and started pulling. In a matter of moments the thing was in tatters. Big brother Tim decided to fix it up. My friend Kathleen sent some wild duct tape the last time we had to cobble her chair back together and it was just the ticket for this problem.

She's a bit peaked today, but even with that, she looks a little tougher, don't you think?

Daniella

A couple of Saturdays ago I was mindlessly folding a mountain of laundry and looking out the front window. I could see a knot of very well dressed teenagers taking pictures and getting ready to pile into a car. It was my neighbor Daniella and her friends taking off for the prom. They all looked fabulous and excited and were ready for a big night. I smiled as I watched them. How could I not. No matter what heartbreak or disappointment you remember from your own experience, the prom remains one of the key rites of passage for American teenagers.

I stopped mid fold because I realized I was smiling and thoroughly enjoyed the moment. It used to be that watching Daniella do anything broke my heart just a little bit. I didn't feel that this time and that made me happy.

Daniella has been my neighbor her entire life. she was born about 6 weeks after Maggie and was typical in every way. That's what was so hard. She started to walk, and Maggie didn't. She talked, and Maggie didn't. She had her girlfriends over, and Maggie didn't. I watched her hit and surpass milestone after milestone that Maggie never met and it hurt every time for a very long time.

At some point it stopped hurting. When kids are little it's hard not to compare, but as they grow into their own people comparisons generally stop. Maggie and Daniella were completely different from the start, it just took me a while to come to grips with that reality.

Don't get me wrong. Daniella is very sweet to Maggie and to all of us, but she and Maggie are not friends or peers in any way. The only thing they have in common is their age and the street on which they live. They have lead completely different lives, attended different schools, have different abilities and different everything.

Perhaps if things had been different, they would have been close friends. Maybe they would have covered for each other as they did whatever it is teenage girls do in secret. But that was not to be. I think I mourned that for a long time. Maggie never got the chance to be "normal" and have the normal kid experiences. Watching Daniella enjoy - or even protest - those experiences was a constant reminder of that.

Saturday Daniella graduates from high school and this Fall I will watch her leave for college. (To be honest, the college thing might hurt a little.)  She is poised and beautiful. She is ready to fly and I am happy for her.

 But a couple of Saturdays ago as I watched her and her friends leave for their prom, the first thought that crossed my mind was this: Daniella is wearing the same color dress Maggie wore to her prom. Instead of watching her experience something Maggie would not, I was making a connection to a similar experience of Maggie's. Now Maggie and Daniella have their age, the street on which they live and the color of their prom dresses in common.

And that made me smile.

Maggie's entourage

Maggie's off to school but she is definitely in tired mode. We all are. Whew! What a weekend.

Of course the main focus was the prom and Maggie continues to bask in the glow. I read her all the comments from here, facebook and email and she loved them. I think Maggie's joy is infectious. I suspect every girl is just as excited to get dressed and head out to her prom, but high school girls have to be "cool" and not show it. Maggie does not have to act cool so the pure joy comes through.

Maggie told me to say thank you to a few people. Before I forget again, I have to give credit where credit is due. Maggie's costume designer is Anne Marie Hanley. She is the daughter of a friend of mine and has an excellent eye for fashion. I suspect you will all hear her name in the fashion world in a few years. She gave Maggie the dress and matching wrap knowing how perfect it would be on her, and she was right. .

Of course the dress was a tad too large and I had to rely on my friend Rose to do the alterations. My lack of ability with a needle and thread are legendary. Steve does some mending but the work on the dress was above his pay grade. There is no way to do a fitting on Maggie and the alterations had to be done by guesstimate. Rose guesstimated perfectly and Maggie looked fabulous.

Now we have to ease ourselves back into the reality of Monday morning. It won't be easy.




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Prom Recap

The Prom was a rousing success. The kids looked fantastic. As "Teacher Joe" said, they really didn't look like kids at all but sophisticated folks out on the town, which is exactly what they were.

Maggie was so excited before we left I had a hard time getting her dressed. And once she was dressed, the excitement only increased.

Maggie's night had two separate and distinct parts, and each was important to the entire night. I wrote a couple of weeks ago that Maggie had an actual "date" for this prom. That was a first for her. She was excited. Tyre, who is also non verbal, had his mom call to find out if Maggie would go with him and wanted to know the color of her dress so he could match and get appropriate flowers.

But it was not to be.

Tyre had to go in the hospital and could not go to the prom. I called his mom the other day and asked if Maggie could come by on her way to the prom and take pictures with him. I didn't want to make it harder or sadder for him but I wanted him to be part of the night if his mom thought it was a good idea. She thought it was a great idea and planned to get Tyre dressed in his matching outfit for the photo shoot.

We headed up to the hospital on our way to the prom. Tyre was ready and waiting, and he looked spectacular. They both did. He had flowers all ready for Maggie, which complemented her dress perfectly.

Tyre's mom and I took a ton of pictures and the kids were getting really tired of it. Maggie finally gave her "Paparazzi, Stop" pose.

With some sadness, we left Tyre behind and headed to the prom. It was at the MoAD, Museum of the African Diaspora, which was very cool. I want to go back when it's not packed with dolled up teenagers. 

Maggie and her friends hung out together and then hit the dance floor. The dance floor was packed and everyone was having a great time. The music was pulsing, to say the least. I can assure you I never heard lyrics quite like those at St. Rose Academy. 

There weren't too many of Maggie's special ed peers there, but enough that we had a good time together. Best dressed award definitely went to Chuy.

Maggie had fun with Miss Laura, who looked beautiful and with her teacher,  Mr. G.

Maggie's oldest friend Anthony was there too and he was having a great time. They have been in the same programs and classes since infancy.  By the end of the night, he and Maggie were holding hands. 

Fickle girl, that Maggie.

 All of us are a little worn out this morning, but it was a great night.

Roll on the Wild Side

My friend Kathleen came by over the weekend. She had something she wanted to drop off, something she figured we could use around here especially after reading last week's posts: Decorative duct tape.

There is a swirly blue and purple one, a leopard print and a zebra print. Maggie can tear and snap parts of her chair with reckless abandon and we can put them back together with a tape that reflects Maggie's persona du jour.

Interestingly, Kathleen did not know that Maggie has a jacket in both a leopard and zebra print. Here's a picture of each with the matching duct tape sticking out of the pocket. 

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The possibilities are endless. If we do things just right and tape things up completely, Maggie may just look like a rolling jungle animal. 

Bittersweet Memories

Steve found an envelope full of old pictures the other day. It was probably from when he moved his office several years ago. There were pictures of all three kids as babies as well as hilarious pictures of the boys and their cousins. Each one made us smile or laugh at the memories it evoked.

 Then Steve handed me this. I pulled the picture to my chest and and my eyes filled with tears. I looked at Steve and he gave me a wry smile. He said, I knew that was going to get to you. It brought back so many memories of those early years that it hurt.

This is Thanksgiving 1995 (I can see the date on the picture) at my in laws house in Pleasanton. There were often two dining room tables set up on holidays to accommodate everyone. Maggie was 19 months old. Her face is puffy from all the drugs. Her glasses are on top of her head holding some of her curls back and her head band in wrapped around my hand that is holding her. That was typical. She never left her glasses on her face and the headband never stayed on her giant head. 

Her head was so big because of the hydrocephalus. It took years before the proportions of her body looked more normal. If you notice, she has a lot of hair on the back of her head and not much in the front because she was growing it back after one of her many brain surgeries to deal with the shunt/hydrocephalus problems. That was a very hard time for all of us. 

The sweetest thing about this picture, and the memories that came flooding back are based on the dress she is wearing. It was a gift from a lovely Japanese family we only met a few times. They had a daughter named Ayaka who was in the infant program with Maggie. We went to a group class every Friday and to individual therapy sessions a couple of times a week.Though the sessions were individual, the group members overlapped all the time. We often saw other members of the group three times a week. After a while,  Ayaka didn't attend very often because of whatever medical problem she had. Ayaka passed away when she was very young, probably a little over a year old.  

Maggie and I went to the service for Ayaka. I remember very clearly feeling like I was intruding as we entered the funeral home. The service was in Japanese and I didn't know what they were saying, but I knew what it was like to have a sick baby and I felt for this family.

 I approached them afterward and had to reintroduce myself and Maggie. They didn't recognize Maggie because babies change so much in those months. Though she spoke English, Ayaka's mom didn't really understand me at first. When it clicked she said OOOOHHH, Maggie! The mom took Maggie's face in her hands with the purest expression of love and gratitude I have ever seen. It makes me cry to think of it.  I didn't feel like we were intruding anymore.  

A week or so later the dad arrived at my door with this beautiful jumper for Maggie as a gift from Ayaka. She never got to wear it because she didn't live long enough to grow into it. I was never more honored by a gift and Maggie wore it many many times. . 

Sometimes pictures just transport you back in time. It's as though i can feel the weight of Maggie's big head on m arm as I hold her. I can see my sister in laws face on that Thanksgiving night as I told her this story. Her eyes filled up with tears then just as mine are now. 

Sadly, Maggie has lost many friends over the years. I think I realized at Ayaka's service that this was just  part of this life we are in. It's not a good part, that's for sure.

 I remember Ayaka and everyone of those children and think of them and their families often.  

A winning compliment

Growing up in a large Irish Catholic family was fun. You knew the rules and ignored  kept them (mostly). All seven of us went through 12 years of Catholic school without a thought about it. Though I was 4th in line, I was the first to venture away from Catholic schools for college. It was a bit of a revolution in my house, but you knew if there was a storm, Sally was in the center of it.

 I went to UCLA and loved it. Despite its non religious status, I did not become a heathen or fall off the end of the earth. Unlike many San Franciscans, I do not HATE Los Angeles. It's a great town with a million things to do. I always knew, though, that I wasn't going to stay there.

Perhaps because I didn't stay in LA and perhaps because I have such a tight group of friends here from growing up, I fell out of touch with almost everyone from UCLA. There are still Christmas cards and the occasional facebook comment, but other than a rare reunion, I have fallen out of touch with every one. Except Clare.

Clare was my roommate for two years. She knows all my secrets. We lived in an apartment on Barry avenue and we named it Try Barry Pie to recognize the resurgence of sororities (we did not wish to join, it was simply an homage). Our next door neighbors were two sisters about 90 years old who used to listen to Johnny Carson at full volume. Every time we heard that introductory music we would laugh our heads off. They were 90 and tuning in a show at 11:30. We were 21 and trying to sleep. We bonded and have remained close friends ever since.

Funny - though college was my Declaration of Independence and my revolution from Catholic school, my closest college friend is from a large Irish Catholic family.

Shrug. What can I say? It's part of me.

Clare teaches special education in the central valley where she lives with her daughter Anne Marie. The two of them and Clare's mom Marilyn are frequent visitors to San Francisco and they always include us in their plans. Recently Steve and I were invited to her sister Anne's 25th anniversary luncheon. That's pretty good considering Steve had never even met Anne and neither of us had met her husband. We were interlopers, and happy to be there! It was an elegant affair and a lovely afternoon. I was able to talk to Clare and two of her sisters and catch up on the news about the others.  I love this family and feel a part of it.  

At that luncheon, Anne Marie looked beautiful in a flowered print dress and I told her so. She's in high school now and looks quite grown up and lovely. She has a great sense of style.

Apparently that style is not limited to clothing.

On Thanksgiving weekend Clare and Anne Marie came to SF and we spent one morning shopping on Chestnut Street. Maggie joined us but was not her cheerful self. She was exhausted from Thanksgiving and all the activity. That did not deter any of us from having a good time. After shopping, Clare and Anne Marie came back to the house and brought  Maggie a gift. It was the flowered dress Anne was wearing at the luncheon as well as another beautiful dress and wrap.

They know Maggie goes to the prom every year and thought one of these might work. You should have seen Maggie change her demeanor.   Now Maggie's wardrobe is set for her 18th birthday bash AND her prom.

I was sorry to see them go, but I made sure to complement Clare on her car as they drove away. You never  know....

Shouldering the Responsibility

It may surprise you to learn that I have developed significant upper body strength. Maggie weighs just under 80 lbs of constantly moving parts and I lift her at least a dozen times a day. When she is in her 105 lb wheelchair with an additional 30 lbs of equipment, I am constantly wrestling it into place, pushing it up hills, ramps etc. It is a constant workout, but the benefit is limited.   I am out of shape, overweight and strong as a horse.

I do not even realize it until I spend time with someone who marvels at my strength. My friend Grace Young, aka my favorite Chinese Cookbook author or the wok evangelist, (check out her books here) did just that the other day.  

Maggie and I accompanied Grace to the huge Alemany Farmers Market on Saturday morning.  Grace always posts the most beautiful pictures of fresh food on her facebook page and I told her next time she came to San Francisco we had to make a trip there. Maggie loves going there too. There is a trendier and fancier farmers market at the Ferry Building, but it cannot compare to this one.  It is a huge farmers market with an unbelievable selection and absolutely no frills.

One “frill” that I would love to see there are curb cuts for the wheelchair. You don’t know how much easier those little ramps make life for wheelchair users and the people who push them.  A low curb is not too difficult. I just use geometry and physics; tilt, push, and the lift is minimal.  When a curb is too high for this it becomes more problematic. The bolt that secures the chair into the van sticks out from the middle of the bottom of the chair. I cannot tilt that chair back far enough to clear bolt on the high curbs. I have to dead lift twice, first the front and then the back. There were several like that at the farmers market. At the worst one, I could not do it by myself. Grace kindly offered to help.

She took the back of the chair as I manually lifted the front. That was perfect There has to be someone back there so that the chair does not tip over backwards.  I secured the front of the chair, raced to the back, and lifted the 200 lbs the necessary 7 or 8 inches. Grace was amazed. Apparently, she had been trying to do just that and could not even budge it.  Grace, though a heavyweight in the world of food and wok cooking, is a 98 lb weakling. (Here she is trying to convert Maggie to the Magic of wok cooking.)

I just laughed and told her this came from years of practice but that at our advanced age (we went to high school together so we are the same age) it comes at a price. My shoulders are shot. In fact, after several months of increasing pain in my right shoulder I was heading to the orthopedist.

In March 2010, I had surgery on my left shoulder for damage directly attributable to all the lifting I do. That is now doing fine, but my RIGHT shoulder has become increasingly uncomfortable over the past several months. I stopped reaching for things with that hand and tried exercises, but I needed something else. I went to the doctor yesterday and confirmed what I already knew; it is the exact problem I had on the left side.  As he gave me cortisone shot in my shoulder (OW!) he told me I could take comfort in knowing my body was symmetrical.

I could not be happier. 

Lucky Wednesday after Bad Tuesday

Yesterday was not fun. Maggie's scare in the middle of the night and the sleeplessness that followed were a bad start. However, after posting yesterday, I realized the guilt train was going nowhere and jumped off.  Incidents in the middle of the night are just one of the many reasons she has a nurse at her side. Maggie is fine. The nurse did what she was supposed to do.

The day got worse before it got better, though. I was eating a lovely cous cous salad with kalamata olives for lunch. Healthy...or so I thought.  I was unaware that the olives had pits and broke a tooth clean off. Arrgh. What's worse? The actual breaking of the tooth (which COMPLETELY grosses me out), the pain of sitting in the dentist chair to get it repaired or the shock of the fee. None if it is fun.

My dentist was on vacation and I had to call someone else. I called one of the three dentists who covered emergencies when my guy is out of town. I had no connection to any of them and just randomly picked one.   As I relayed my tale of woe, the kindly woman on the phone said they could help and asked my name. I told her Sally McDonald,  but Sara for insurance purposes. (Yes my given name is Sara but no one has ever called me that.)

There was a pause and then she said, "Is your maiden name Coghlan?"  Whaaaa? How could she possibly know that. I use both names professionally and on my email etc, but not in conversation. I thought about it a moment and could think of one friend who worked in a dentists office. "Kennedy? Is that you?" Sure enough. my old friend Kathy Kennedy was the receptionist. We go back to grammar school and high school days, which is a long time. We still get together for the occasional lunch or other soiree.  If you've been here long enough, San Francisco becomes  a very small town, even though it is a large city.  Knowing she was there  took away a lot of the fear of dealing with a new dentist. Score.

My appointment was at 8:45 but I had to make a quick trip to UCSF to drop off more lab work for Miss Maggie first.  Generally "quick" and "UCSF" don't belong in the same sentence, but today it really was. I had to pull into the 8 story parking structure because there is no place to park, but I whipped in, dropped off the stuff and whipped back to the car. Much to my delight, they didn't charge me the $3 parking fee because I was less than 10 minutes. Score!

As I left my friend Kathy called to tell me I might have to call another dentist because there was no assistant available. Since I was already en route I said, let's see what he can do. I feared I would be referred for a root canal anyway. Glad I didn't cancel.  He worked some magic that was almost painless and will keep things covered until my own dentist can return and make a crown. I can smile without looking like a hobo and breathe in air without pain.  Score again.

It seems this is my lucky day, which is a good thing because tonight I am participating in a trivia contest tonight to benefit Advokids and their work with children in foster care. Not sure how it will go but I will finally have a forum to air my cache of useless knowledge.

But first I will buy a lottery ticket.

Lueza

Maggie is a huge joyful presence in our lives and the lives of many others. I always try to write about the joy or humor in Maggie life because 1) the world can always use more of that and 2) in the world of disabled children, and especially from the viewpoint of the outsider looking in, this part of life is too often overlooked.

But of course this life is not all joyful. There are some achingly sad moments as well. We are living through one now.

Yesterday I learned the Lueza passed away suddenly in the night. Lueza is a girl Maggie's age, a girl full of the same joy and light and life as Maggie. She is also a girl with cerebral palsy, a girl who needed a trach shortly after Maggie did and a girl who was in and out of the hospital all the time. She has parents who adore her and care for her lovingly. She has a sister who is devastated. All of my thoughts and prayers are with them today.

Rest well, sweet Lueza.

Maggie and Sophie

The blogosphere is a funny place. You write your heart out and send the words off into the void not knowing who or even if anyone is reading. Then you get a comment here or an email there and you realize people are checking in and want to know what's happening in Maggie's World.

I see the sidebar listing places where I don't know a sole, but I know I have faithful readers in Thunder Bay, Ontario and Euless, Texas, to name just a couple of places. I read other peoples blogs too, mostly about other children who live with challenges like Maggie's - or different from Maggie's. Obviously I find a lot of similarly situated families and it's easy to connect on the internet.

 Sometimes you even develop friendship with this unseen readers, like I have with Elizabeth, who authors a lovely blog about many things including her 16 year old daughter Sophie. (check out her lovely blog here). We've never met face to face, but we have formed a connection. I told my sister in law that Elizabeth was re-opening her cake business (Heavenly Cakes) and Elizabeth made the cake for my brother's surprise party last week. I recommended her without hesitation even though I've never met her and never tasted anything she's baked. Sometimes you just know.

 We wonder if we can get our girls to meet someday, but the disabilities of each make that difficult to imagine. Still, we have decided Maggie and Sophie are friends. I don't know about Sophie, but Maggie is delighted to go along with that.

Especially when GIFTS arrive in the mail from this friend.

Maggie ripped open the pretty pink tissue paper to find two scarves from The Salty Dog Cafe on Hilton Head Island. Sophie lives in Los Angeles, but has her peeps shopping all over the country! Maggie was beside herself with the two scarves and doesn't really care if this friendship was invented by their moms. She thinks Sophie is A-OK

Thanks Sophie. Maggie couldn't decide which one to put on, so she thought she'd just hold both of them. They're blurry because she is shaking them, which is what she does when she's excited. Tell your mom thanks too.

Playing Hard to Get

Playing "hard to get" is a foreign concept to Miss Maggie!

If you read this regularly you know about Juan, the young man in her class that adores her. Here's a picture I posted before of the two of them protesting. I post this only so you can refresh you memory regarding Juan's looks. He is a cutie, for sure.

Maggie talks about Juan all the time on her computer. She likes him very much. This morning the teacher took a photo of the screen of Maggie's talker and she repeated this sentence over and over. In case you can't read it it says, "Juan is sweet, Juan". That was at 10:30 this morning. 

But this beautiful spring Day is not a day to be tied down.

At 1:00 Pm, just after lunch, the teacher walked in and saw this

You will note that is not Juan in the picture. Maggie has now moved on to Robert and sat there holding his hand. If you can see Robert's face, he seems to be enjoying it quite a bit. 

Fickle, thy name is Maggie. She may not play hard to get, but apparently she's hard to keep.

What to my wondering eyes....

I arose at the usual hour this morning so the nurse could go home. She wasn't quite done with her paperwork, so I padded to the front door to get the newspaper. As I reached to get it I figured should take down the giant Christmas Stocking that was adorning our front door. The rest of the decorations will come down this weekend, but I am rounding up some of the extraneous ones so I don't forget to put them in the box(es) when we pack it all away.

As I reached for the stocking I hesitated. Why....there was something in there! It was a pound of Sees Candy. (For those of you who don't have Sees, I am sorry for you. It is delish). The box was wrapped in the distinctive Sees Christmas wrap and just sitting there outside in the cold. I grabbed it and went inside. No card. Just a happy red box of assorted chocolate-y goodness.

It was a lovely surprise. As soon as I open it, it will be gone in a WHOOOSH! (too late just did and took my favorite...hehehhehehe)

How long was it sitting there? Since Christmas? Doubtful. Someone here would have noticed it or, if not, some passer by would have snagged it. Could it have been there when I came home last night and I just didn't notice? Possible. Is that why the dog was going crazy after I came in last night? I don't think so because I was sitting on the couch and can see the front steps and would have seen someone place it there.

My suspicion is that it came this morning from Peter, the guy who delivers the newspaper. He has been delivering our paper for years. Every year he puts a Christmas card in the paper with a self addressed envelope in case someone might want to tip him. Every year I put it aside with the best of intentions to do just that. Then I find it when I'm cleaning everything up and figure it's too late. Not this year. On Sunday I waited for him to arrive (Sunday paper is later) and I actually handed him the card with a decent tip - nothing extravagant, mind you, but I've missed a lot of years. He certainly didn't have to buy me any candy.

We had a nice chat when I gave him the card,just as we used to every morning when he delivered the paper at the same time as Maggie's bus arrived. He actually asked me if we still had a dog. I laughed and said, yes, but he sleeps through your deliveries now. Brisco used to go nuts whenever that guy was anywhere near the house, but he's old and lazy and gave up on barking at Peter. (When he gives up on the mail carriers, UPS and the oxygen guy I'll know he's over the hill).

He's a nice guy and I miss our morning hello now that he's delivering earlier. However, if he's willing to drop a box of See's now and then, I could get over missing the hellos.

In the event my suspeicions are incorrect, and the came from someone else who happens to be reading this, thank you. Whoever did it completely made my day.

Nonetheless, I meant everything I said about Peter, but if it wasn't him I 'm going to suggest he get that Sunday paper here earlier.

Playing the Field

Yesterday I posted a photo of Maggie and Juan. They remain “close friends” but I have news. Ms. Maggie plays the field. She’s been flirting with Tyre.

Strumpet.

Maggie’s class consists of six students - two girls, four boys. Excellent odds. No sense putting all your eggs in one basket. She’s only a freshman, after all.
Of the four boys, both Maggie and I have known three for several years. The other girl, Cuiping, and Juan are the only kids I did not know before this year. There just are not that many kids in wheelchairs and you tend to get to know the kids around your age. Juan is not in a wheelchair at all and he ran in different circles. I’m not sure, but I believe Cuiping recently moved to San Francisco so we didn’t know her either. But we know the rest of the boys. Maggie and Grimaldy have been in the same class since second grade. The other two boys are a bit older, but there has been overlap at several points. Robert less so than Tyre, but there is familiarity there.

Tyre is just a couple of years older and there has been a lot of overlap. Plus I know his mom Nadine. We used to do a parent presentation together all the time and we would run into them at the doctor and other places. Hence, Tyre and Maggie are pretty good friends.

Tyre’s abilities and disabilities are more like Maggie’s than anyone else in the class. He has medical issues as well as disabilities and he, too, is very good at using his communication device. Tyre cannot control his arms and hands sufficiently to access the communication device, therefore he uses a pointer on his forehead. It is not sticking out or anything, it’s just a dot that communicates with the device electronically. He’s a whiz at that thing. He also has a little bit of oral speech. (Showoff.)

One day Maggie found herself next to Tyre. Because he has trouble keeping his arms still from the constant movement, Tyre’s arms are restrained with Velcro straps. This is not a bad thing, believe me. It allows Tyre to concentrate on what's going on around him without the distraction of his constantly moving arms. Maggie, has zero problem with her arm movements, in fact, that’s her strength. Maggie also LOVES Velcro.

Nadine learned this from Tyre’s “news” on his talker when he got home from school. Apparently, Maggie kept reaching over to Tyre ripping and ripping at the Velcro. When she finally got his hand loose she held his hand all through the lesson.

Hearing that made Nadine laugh and she asked Tyre is he like that. He grinned from ear to ear – and you haven’t seen a grin until you’ve see this kid grin - and said aloud “yes.”

I’m sure Robert’s next on her hit parade. She has to get to him. I think he’s graduating.