Whirlwind escape

I ran away from home this weekend. Just for 24 hours. Maggie was in charge while I was gone. She runs this place like a Swiss train.

 I flew down to Burbank and watched my friend Elizabeth perform in the Expressing Motherhood show at the Banshee theater.  The show consisted of 12 mothers reading, or in some cases performing, a piece they wrote themselves about some aspect of motherhood. There were raucous laughs and some tears, there was unmitigated joy and seething anger just like motherhood itself. If you are in the area, the show goes again next weekend. It was a wonderful escape.

I went with my friend Janet who was already heading down there to visit her mom. We flew down at 2:30 pm leaving us about 90 minutes after we arrived before we were to meet a few others for an early dinner before the show. We went to a brand new mall that looked like Main Street in Disneyland. Dinner and the show were great, I met some new people and made instant connections and we sat together for the show. Afterward, Janet and I each headed to the homes of our respective brothers for the night.  I returned by noon on Saturday. I hadn't been to my brother's house in many years and had a great visit with him and my sister in law and niece before leaving there at 10:30 am to return the rental car, get on the plane, then the shuttle, then the BART train so that Steve could pick me up at Civic Center. It was an exhausting 24 hours, but a great break.

When I returned Maggie was happy to see me, but not for the reasons you would expect. I came in and she gave me a smile and waved and then immediately pointed to her nurse and beamed. She was over tho moon because her nurse Josephine was back after a month off. Steve said when they went to the park in the morning Maggie said on her talker. "Dad I am excited. Josephine coming to see Maggie." Steve said that's right Maggie and who else is coming home?"Eventually, Maggie threw me a bone and added me at the end of the sentence.  "Mom's coming."

It's nice to be missed.

Recharged and Energized

 Taking a break once in a while is an absolute necessity. I live in a very small geographic circle. I am all over the City dealing with Maggie's school, doctors etc, but I rarely have the need or opportunity to get out of town. (Note: going to Target in Daly City does NOT count.) 

It is difficult for me to get out of town. There are many reasons for this, all of which involve Maggie. We are on such a short leash with her treatments and I cannot just put her in the car and go. Someone else has to be with us to suction her while we drive. Taking a nurse along for a ride out of town sort of defeats the purpose of getting away. We are just taking our show on the road.

Sometimes Steve and I take Maggie somewhere, but then one of us is sitting in the back with her and it doesn't feel very relaxing at all. We also have to go places where we know there is access for her and we can find a place to do the needed interventions that take a block of time and require some privacy. All in all, it's just too hard. By the time we arrange all that, it's easier to stay in town.

One (more) good thing about living in San Francisco is that there is no question when you leave town. You cannot go west without a boat and you can't go North or East without crossing a bridge. For me it's a psychological bridge as much as a physical one.  When I  get on the bridge, especially the Golden Gate, I immediately feel like I'm on vacation.

That's what I did Sunday afternoon. I had a meeting scheduled Monday morning far north of here. It was not too far from my sister Mary's house and I decided to spend the night with her and my brother in law. It was not a wild visit, we had dinner, talked and watched Dowton Abbey, just as I would have at home.

But I wasn't home. I was sitting in a different town in a different house with a beautiful view of their vineyard, mountains and lakes. I didn't have to wait for the nurse. I didn't have to get up so the nurse could go home. I didn't have to do the morning madness. It was rejuvenating and wonderful. I feel like I was gone for a week.

Steve held down the fort while I was gone. He got Maggie off to school yesterday morning and I returned before her bus came back in the afternoon.  She was absolutely delighted to see me, which was a bonus.

I asked Maggie if I could go away for a week and she said NO. I asked if I could go away for three days and she slammed down another NO. I said is it OK if I go for another day sometime and she reluctantly gave me permission. I promised her it wouldn't be too soon.

It doesn't have to be too soon. My batteries are recharged..

Gray Skies are Gonna Clear up, Put on a Happy Face

There is a strange yellow ball in the sky surrounded by pale blue sky. Hallelujah! Maggie's summer vacation started 10 days ago and this is the first sun we've seen.  It's 7:30 AM, we are getting OUT OF THIS HOUSE in the next 30 minutes. (We have to I have to move the car by 8:00 for street cleaning day.)

One learns to take advantage of days like these. They are far too infrequent. Summer weather in San Francisco is generally about 10 days in June and then again for a couple of weeks at the end of September/beginning of October. This rain cut into the front end. The dreariness really wears on one, especially when you know the summer fog is just a couple of weeks away. It also puts a major crimp in our outings.

 We did manage a walk in the park Sunday but kept one eye on the gathering black clouds and didn't stray too far. On Saturday there was a deluge and Steve was busily rigging up a giant umbrella over Maggie's chair.

 I watched for a while but finally stopped him. I said "this child has not been able to keep her oxygen numbers up for  a month, perhaps a walk in the pouring rain is unwise." Steve just looked at Maggie and said, "I hate it when she's right".  We' drove to the museum at the Legion of Honor instead.

Yesterday Maggie and I went to the California Academy of Sciences which houses the aquarium and multiple other attractions. We can walk there in about 10 minutes, but once again it was raining. We went in the car and parked about 100 yards away. We went inside to find that every single child in San Francisco under the age of 7 was there. Holey Moley it was crowded and extremely loud.  We stayed for a while kind of humoring the situation and one another. Maggie used her talker say "Mom. I want to go. Mom I go to car." That was all I needed to hear - we went for a ride instead.

We did reconnaissance for today's outing, checking out possible parking spots for our outing. There were rumors that the rain was going to end and we are bound and determined to get some sun and fresh air.
We are headed down to the Embarcadero for a walk along the Bay.

If only I had more faith in the nice weather rumors, I would have purchased these glasses Maggie tried on at the Academy of Sciences.

Yes, No, Maybe so

It's been a roller coaster day. I was scheduled to be on a parent panel at UCSF today. This was a retreat for nurses. You must know by now that nurses are among my favorite people on earth. Generally I love doing these things and demonstrate our glass half full approach. That was harder today.

About 5 minutes before it started I received a phone call from Josephine one of my home nurses. She hurt her back and had to cancel her three shifts this weekend. THIS weekend. The weekend Steve and I were planning to go away to celebrate our 25th wedding anniversary. I have been setting this up for weeks getting nurses lined up and supplies stored, renting a place for us, packing, preparing etc etc etc. Steve and I have been away alone together twice in the 17years since Maggie was born. It's a big deal and it looked like it was all going to fall apart. 

I went in to the panel with my heart in my mouth wondering how I could possibly piece things together at the last minute. Ironically I was in front of a room with 60 nurses in it trying to figure out where I could find a nurse. Of course nurses are not fungible,  I had to find nurses that know Maggie, know my house  and can work on their own because I wasn't going to be here to help.

We went through the presentation and it was well received, but I was not my jolly self at all, and I feel bad about that.  I'm very glad I prepared some stuff ahead of time because I was very distracted and feeling very sorry for myself.  As the other two presenters answered question I began to formulate a plan of attack. My brain was like def con 3 - I started mentally moving things around and finding ways the puzzle could fall into place. 

The first two efforts failed and I felt more dejected, but refused to give up. About an hour ago the puzzle came together. Fely will take Saturday afternoon and Tim will be here to help Fely, who can not do things on her own. Etoy will take Paulo's night shift and Paulo will cover Friday afternoon and stay a little longer on Sunday after his 7-3 shift on Sunday. We will have to be home by 5PM on Sunday, because there won't be a nurse after that, but that is completely doable.

I wonder if I can get a do over on the presentation. I'm feeling much calmer now.

We are off on our getaway. Keep your fingers crossed that nothing else goes wrong. I'll report back next week. 

Giant Getaway

Maggie was a little better on Friday and Steve assured me he could handle things here, so I decided it was ok to take my 24 hour trip to Los Angeles.  I was leaving early Saturday morning. I wasn’t 100% confident about leaving Maggie.  My stomach hurt terribly from what I know was a case of the nerves.  I can be my own worst enemy.  I tried to ignore it, but it definitely made sleep difficult on Friday night. 

We went. Tim and I flew to Orange County to meet up with Eddie and his girlfriend, Grace. The four of us headed to the Giants Dodgers game at Dodger stadium. I never get to spend any time with the boys so this was very unusual.  We had a great time. Check them out in the 2d inning.

We were aware of the violent incidences at Dodger Stadium on opening night. It seems some Dodger fans do not appreciate fans of other teams – or at least Giants fans – coming to their park. One individual in Giants gear was badly beaten on Thursday night simply because he was a Giants fan. (there is a blog and facebook page to offer him well wishes or donate to help with his mounting medical bills at support4stow.blogspot.com) This wanton violence leaves a man fighting for his life and it seems a little unclear on the concept of competition to me. There are thugs everywhere, I suppose, but all he did was go to a baseball game.  We were going to a day game and certainly did not expect to witness it first hand. But we did. Nothing in comparison to the attack on this man, but violence nonetheless.

The four of us were waiting in line to enter the stadium when Tim was violently shoved by a dodger fan who said “Hey, you’re in Dodger Stadium now.”  The guy simply barreled through the line targeting Tim apparently because of his Giants shirt. He lowered his shoulder into Tim’s chest and shoved, pushing Grace out of the way in the process. Tim has both class and common sense; he refused to respond and, thanks to that, nothing happened.  In another show of class, the guy behind Tim in line just shook his head and apologized to Tim on behalf of Los Angeles. Tim’s sore chest hurt a little less with every run the Giants scored in their 10-0 rout of the Dodgers. (The only game the Giants won in a four game series).

We made it back to the car without incident. Of course there weren’t any Dodger fans to be found by then. They had all left the game several innings earlier because their team was losing.  Look at all the empty seats around us in the 7th inning. We headed back down I-5 to Orange County, went out to dinner, and went in the hot tub.

I checked in at home. Maggie was better still and saying over and over on her dynavox “Mom, come see Maggie.” 

 The stress was replaced with guilt, but  THAT I can handle. 

Small Things

Steve and I stole away on Friday night for a quick bite. We don't go out very often and we always have a great time. I really needed to get out of this house but didn't have the drive to come up with any thing. I jumped at Steve's suggestion that we go out to dinner.

We went to a little Mexican place we like. It's always crowded and very ALIVE. Every inch of that small restaurant is decorated with brightly colored paint, pictures or other things. You can't stay down in the dumps for long if you eat there. Here's Steve posing by the beers and you can see some of the decor in the background.

In addition to the decorations on the walls, every chair has a name painted on the back. The names are random, there will be Jordan or Ann next to a Julio or Mike. It's just another part of the energy of the place.

I signed in for us and we waited about 20 minutes for a table, wandering into a nearby bookstore for a few minutes. We came back just a minute before they guy said "Sally, for 2" I said "right here." He held out my chair and I had to point this out to him (see picture). He smiled and said I'd love to tell you that was on purpose, but we are a little busy to match the chairs with the customers.

My phone rang during dinner. I always keep it on the table in case the nurse calls about Maggie. It wasn't the nurse, but a number I didn't recognize. I don't know why I answered it, but I did. The woman on the other end said "Sally?" I (checked the chair and) said YES?
This is Anna Romo.

Anna Romo is the lady who was so nice to Maggie and gave her the bread the other day. (see two posts from earlier this week) She received Maggie's thank you note and the note I enclosed with a copy of the post and a business type card.

I motioned to Steve and ran outside where I could hear her and she very sweetly thanked me for the note and told me how Maggie is a blessing in our life.  She invited us to visit her at Boudin Bakery again, and I promised to do so.

I came back to the table and told my confused husband that it was Anna Romo. (It was Steve's idea that Maggie write the note). I said, she got Maggie's note and was very happy about it. We smiled at each other and Steve said simply "Small Things."

What he meant by that was what a difference small things makes in someones life. Anna showed a small kindness to Maggie, Maggie sent a small note of thanks,  Anna made a phone call to thank us for that and to invite us to visit again. Three small things that add up to a lot.  And my chair had my name on it!

Everyone feels good. Everyone wins.

Remember the small things. They really do matter.

 

Long May you Run

Volunteering comes with great rewards. Generally, those rewards are in the form of quiet satisfaction that you have helped someone or given back to your community, which is plenty. Occasionally, though, there are tangible perks too. I received one of those last night in the form of free tickets to a benefit for UCSF Benihoff Children’s Hospital. The benefit was a concert featuring Neil Young. It was great! Members of the Family Advisory Council (FAC) were invited to attend the concert. I saw at least five of my fellow council members there. These people are my peers, all of us are parents of kids who have (or had) medical issues and are cared for at UCSF.

Steve was supposed to pick me up and we would head downtown together. He did not get out of his meeting until late, though and he was 60 miles away.  I had to get myself down there to pick up the tickets. It was raining and I was cutting it close. I knew parking would be a nightmare near the venue (some people waited in a long line to pay $40 to park.) As I neared downtown, I considered my options. I spotted a car pulling out of a place on the street, grabbed it and hopped in a cab for the last mile or so. It was brilliant.

Just as I was walking in, the nurse called from home. Maggie’s feeding tube was completely clogged and she could not get the food to go in. I told her how to fix it, but it would not work. I called Steve but he was already nearing downtown. I called my neighbor to go help her, but she was not at home. I knew I could fix it in about 10 seconds, but I could not get home.  I had no choice but to have her change the tube. It was a waste of resources, but fixed the problem.

After all the drama and excitement or getting there and dealing with the tube issue, I was hoping for a relaxing and entertaining evening. I was not disappointed. The beginning of the concert was delayed, which gave Steve time to get there. We were told they were waiting for President Clinton to arrive, but that never happened. The evening started with General Colin Powell giving a bravery medal to Paddy, a 12-year-old cancer survivor, which was very moving. Stevie Wonder and his entourage walked right by our seats a couple of times, which was pretty cool. When Neil Young took the stage, though, I did not think about any of that. I was back in high school and college days listening to song after song after song from that era.   

Heidi, a fellow FAC member was sitting next to me. She was amazed that I knew the songs. She was not yet born the last time I saw Neil Young live. She had no idea of his significance and trying to explain the shootings at Kent State and the importance of the song “Ohio” was mind boggling to me. I realized that my “peers” on this council could easily be my children.

That was a special moment for me.

It did not matter, though. As that music played, I was 18 years old and did not have a care in the world. We got home around midnight. When the alarm went off this morning, I did not feel 18 any longer. 

Have a listen to "Long May you Run" http://www.youtube.com/watch?v=nszR0tfp4Es 

And as I said on my facebook status, if you are too young to know about Kent State go look it up. Then listen to "Ohio" which was released just a few weeks after Kent State and you may start to understand the importance of Neil Young to that time  

Scattering the puzzle pieces

This is Eddie getting air during a race earlier this year. I believe it was taken by a professional or someone with a very good camera because capturing these guys is very hard on a point and shoot. 

Eddie is competing in the collegiate national mountain bike races this weekend. This is his fourth straight nationals and the last one because he is graduating in December and will no longer be in the “collegiate” category.  Like last year, the race is taking place at the Northstar Resort near Lake Tahoe.  We had plans to go, and rented the same condominium as last year. I had mixed feelings because it is so scary to watch these races, but it is my last chance and we had a blast last year. However, it is not to be; Steve is going without me and I am bummed out.

In order for the two of us to go away together over night, about 100 things have to fall into place for Maggie. It is like putting a jigsaw puzzle together. I started down my list ticking things off one by one. I have to arrange for extra nursing to cover the extra 8 hours a day that I generally do. This comes out of my pocket, but it is worth it occasionally. I also had to have some backup in place. My mom and sister agreed to pop in and visit with Maggie because she gets very confused and a bit mad when I am gone for too long. Last year when we did this Tim was home for the weekend and that’s how it was even possible at all.

I needed only one more piece of the puzzle to fall into place. If I could get Margie to take her old Saturday night shift then Lucy could fill in on Saturday and Sunday afternoons.  Denied. Not only was Margie not available on Saturday night, she could not work her regular Friday night shift either because she was going out of town with her family. That was a deal breaker, because Lucy would have been the backup. Now Lucy will work both Friday and Saturday night, but I do not have anyone to fill the extra shifts – so they are on me.

Getting a nurse to cover on the weekend is hard enough, but if I am not here, it has to be someone who is totally comfortable on his or her own. It cannot be someone new who is unfamiliar with all Maggie has needs and supplies. If I am not here to help and guide, a new person could not do it alone – and I would not be comfortable leaving.

Yes, Steve could stay and I could go, but he has more fun watching these scary races than I do.  They come tearing straight down the mountain at breakneck speeds jumping over rocks and trees on the way. I stand on the hillside with my eyes closed.  It is terrible when I constantly repeat to Eddie that one kid in a wheelchair is enough for me. He was hurt in a collision in last week’s double slalom event and considered pulling out of nationals because he is still recovering. But it’s nationals and it’s the last time; he registered and plans to give it a go this weekend.

Therefore, I wish Eddie well from the relative safety of home. I hope the race goes smoothly, that he does well, keeps all his teeth in his mouth and his bones attached to one another.  Maggie and I will await word from our scout on the front lines. 

Girl, Interrupted

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

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

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

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

Maggie was not.

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

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

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

We left before it got ugly.

Bobble Head

The weekend started off with a bang.  Actually, it was more like a snap. At 5:30PM on Friday, Maggie’s headrest snapped off her wheelchair again.  You may remember this repair was done a few months ago and the Wheelchair tech pronounced is “Maggie proof”. I doubted him then and told him never to say anything like that out loud. Just goes to show you…

Maggie cannot use the chair without the headrest and I thought we were facing a long weekend of laying in bed or lying on the floor, but we forgot that Dad is a mad scientist/genius. He put some brackets on it to hold it together until we can get it fixed today. It is very wobbly sided to side, and Maggie looks a bit like a bobble head, but it’s usable. Dad saved the weekend!!

Good thing, too, because Maggie had some plans. On Saturday we were hobnobbing.  Maggie and I  attended the campaign kickoff for Margaret Brodkin’s run for the San Francisco School Board.  Anyone who has raised a child in San Francisco in the past 30 years knows who Margaret Brodkin is; or they have benefitted from some program she created even if they don’t know her name.  She has been a tireless advocate for children, and has made a few political enemies in this town because she doesn’t compromise her devotion to children. If you want more info on Margaret Brodkin and her campaign, check her out here or on Facebook. If you go to her facebook page you will see this picture of Maggie and I with our friends Lily and Lori.  (you can see Maggie looks less than comfortable because her headrest is loose.)

 Lori is one of those moms I talked about a couple of weeks ago. We connected when our girls were very young and have been a source of support for each other ever since. Lily, who just started high school, is on the Youth Commission for San Francisco.  Margaret Brodkin acknowledged Lily and another member of that commission in her speech. Maggie and I just basked in her fame.    

Sunday Maggie and Steve and I headed up to the Marin Farmers’ Market. It was lovely and I thought Maggie would really enjoy the nice weather, the colors and the aromas of the market. Meh.  She was less than enthralled. I don’t think it’s very comfortable for her to have that thing moving about and she has to concentrate too hard on her to relax and enjoy herself.  I liked it though and we had a delicious dinner with the bounty from the market.

 I sent her to school this morning in that wobbly chair. The first appointment I could get for a repair is at 2:00 PM. I will just pick Maggie up at school at 1:30 and we will head down there together. Maggie and I will hang out on the mat while the chair is repaired. I will caution Chris, the wheelchair tech, against making any proclamations about the chair being Maggie proof.

If she hears that, it becomes a direct challenge.   

Stranger and Stranger

Sometimes I have to experience things differently to realize how hardened I've become to things. Case in point, shopping with Tim and Maggie at Costco last week. Tim was shocked at how often people stare at Maggie. I know they do, but I generally ignore it. With Tim there I was acutely aware of the staring from every corner.

The staring is nothing new. It has always been part of Maggie's life, and all of ours by extension. It may be a little worse now than before because the trach tube is jarring to people and Maggie's constant movements of her hands and face is off putting. Tim is just out of practice, He's been away at school for two year. He has certainly been home a fair amount in that time, but it is always a couple of days here and there and isn't too often that we are out in public with Maggie while he's home.  He received a crash course while we were at Costco.

One woman was looking at Maggie like she had two heads and we kept running into her, which was awkward. The best, though was a family that we only encountered once. There were four of them and they were turning into an aisle just as we were going to exit that aisle. All four stared at Maggie open mouthed an blocked our way. It was just a moment where the three of us were facing the four of them, mouths agape. I said sweetly, "excuse us, please" and we went by. As we rounded the corner Tim said (just to me and Maggie), "Hey folks, strap up your chins and get the HELL out of our way. We all cracked up at that.

Lest you think everyone is as boorish as these people were, there was another woman who made our visit.

We paid for the ridiculous amount of items and I stopped at the desk to inquire about getting Tim a card of his own. Tim was next to me holding onto the cart and I was holding onto Maggie's chair, but my back was to her. Maggie was facing away from the counter. By this time Maggie had had ENOUGH of Costco and wanted to get out of there. She kept saying on her talker, "Mom, I want All the Single Ladies Put your hands up" which means, of course, that she wanted to listen to Beyonce.  I absentmindedly answered Maggie while I completed a form for Tim. Maggie repeated her sentence again an again. Out of the corner of my eye I saw a woman approaching Maggie. I turned around and there was a woman just steps away from Maggie waving her hands in the air. She had on a muni bus drivers uniform, which made it even funnier. She said, "I'm a single lady, girl, My hands are UP."    I told her that meant Maggie wanted to listen to her music and she said, "well, get goin, mom"

Maggie was delighted and Tim noted how one cool person can make up for so many idiots.

Friday the 13th

Maggie's brother Tim has been home for the past two days. Maggie has been beside herself. She knew he was coming on Tuesday and kept making her talker say "Tim, Nice to see you." This went on for hours before he actually arrived. When he did, she was delighted. They had a ton of fun together at Costco yesterday. Well Maggie did, anyway. She just said "Tim! Tim! Tim! on her talker over and over again. Finally he would lean down next to her and say WHAT?. That cracked her up. She will be sad to see him go, but he has to go back this morning. 

Today is the last weekday before school starts. (cue Halleluia chorus). Maggie and I have to go do something fun for our last outing. We have been on an extended staycation since summer school let out. We have gone someplace every single day since then so that Maggie would have some fun. Ok, I know, Costco is not generally considered fun, but I promise you it was very fun for Maggie. Not sure yet, what we will do today but we will end summer with a bang. . 

Today is the second anniversary of this blog. I started writing in on August 13, 2008. At the time we were losing our nursing care and had to set up a system to do it ourselves - that is to find the nurses etc and then get reimbursed from the state. I thought that was an insurmountable challenge, but now I've been doing it for two years. 

No wonder I'm tired.

Happy Friday the 13th all.

Beauty Day

Maggie got a haircut today. We made an appointment, got in the car and went to North Beach to get it done. This is a departure for Maggie. Generally one of her nurses cuts Maggie's hair while she sleeps. That works remarkably well but every once in a while we have to go get it "done".

I called my friend Lisa who cuts my hair. She was surprised to hear from me because I was just there last week. I asked if she would consider cutting Maggie's hair. With her beautiful thick Italiam accent she said I would LOVE to cut Maggie's hair. You bring her to me."  Today was the day.

I asked Maggie if she was ready to get a haircut and she was excited. She kept grabbing at her hair all morning. I'm not sure if she was saying "take this away" or "I'm gong to miss this hair"

Maggie thoroughly enjoyed getting her hair cut - but the blow dryer Lisa used to clean off the hair all over Maggie was a bit much for her. I put a cover on her trach to prevent any errant hair from getting in there. When Lisa was finished she asked Maggie if she wanted it shorter. maggies signed yes and Lisa started to laugh and said. "Ok, Bella, we will make it shorter"

Now Maggie has a new pixie cut for her return to school

Next stop, mani/pedis

Tuesday Night Group

When I had the boys, I had so many places I could turn for parenting questions. I could ask my mom, or Steve’s mom, or my sisters or my friends about various infant issues.  Even though my two sons were very different babies, they were both in the realm of the “typically developing” child. Therefore, I could always find someone who would say “yes” to the question, “did your baby do THIS?”  

That was not true with many of Maggie’s issues. When Maggie was a baby, I was desperately trying to find my footing, trying to find answers to questions about raising a child like Maggie.  My mother raised seven kids, but she did not know anything about gastrostomy tubes or colostomies. (Go figure) I had to find other places to ask those types of questions.  Of course, many of the questions were medical, and I have always had wonderful support from doctors and nurses and especially from her pediatrician Eileen Aicardi; but a mom needs someone to brag to and commiserate with about the successes and setbacks of parenting a baby.

In order to find that support I had to go outside of what you might call your “natural support” system. I had to find other parents in similar situations. I could celebrate the day Maggie raised her hand to her face for the first time, even if she was eight months later than her typically developing peers. I started going to the “Tuesday night Group,” which was a support group hosted by Support for Families, a nonprofit organization in which I used to be very active.  I heard about it long before I went because I was sure it was not for me. Various therapists working with Maggie were encouraging me to go and connect with other parents, but I thought I had all the answers.  I finally went, with some hesitation, mainly just so I could tell them I did and get them off my back.

That group became my refuge. We would spend two hours every Tuesday night sharing our stories and the successes or failures of our children that particular week. More Tuesday nights than not were spent laughing at the foibles of the system and the frustrations of trying to adapt a complicated set of services to meet the needs of even more complicated children.  There were plenty of times there were tears too as we shared the constant crush of bad news. The parents in that group, mostly moms, bonded and became friends. We could turn to each other about issues with wheelchairs, medical supply companies, special ed and doctors. Best of all, we could brag about our kids to an audience that listened enthusiastically and celebrated every tiny victory.

Helen Rossini moderated that group with ease and grace and brought out the best in all of us. I went  for a couple of years and met some people there who have been my friends ever since. There was a core group of about eight or nine of us with kids around the same age. We started going out to dinner when we outgrew the Tuesday night group.  The dinners waned a bit over the years, perhaps one or two of us getting together here and there.  However, we always caught up with one another. The group endured.  A couple of the kids have passed away over the years, but those moms are still part of our group. One mom moved away, but she is as much a part as ever.

 Six of us got together for dinner this week for the first time in about three years. Appropriately enough, it was on a Tuesday night.  It was as if no time had passed. These women helped me in a way that no one else could have at a time when I needed it most. And I helped them right back.  It just so happens that the women in this picture all have daughters with special needs, but I only realized that when someone said it the other night. It was not the “girls” that brought us together, it was their status as “special” and that applies equally to boys and girls. In fact, one of the missing members of our group has a son and he was always at the center of our stories.  Hopefully, she can come to the next dinner. Hopefully it will not take us three years to get around to it.

So thanks, ladies.  I would not be where I am today without all of you and those missing from the picture. You know who you are. 

Go long!

Golden Gate Park is a large rectangle shaped park on the west side of San Francisco. It’s about 4 miles long and maybe ½ mile wide. All in all it is 1,017 acres of wonder. It covers a lot of real estate in San Francisco, which is only 46 square miles in size. We are lucky enough to live 1/2 block north of the park close to the eastern edge (in the picture that would be the top left corner of the park) and we are within walking distance of many of its most impressive attractions, including a world class museum, the Academy of Sciences and the Conservatory of Flowers and the beautiful gardens just to name a few. We do hang out at all those places, but Maggie's favorite place is someplace much more modest.


There is a walking path entrance to the park at the end of our street. However, in order to get to it you have to run for your life across Fulton Street with its four lanes of speeding cars. I will do that when I’m walking the dog, or when Maggie isn’t with us; but doing that daredevil move pushing a wheelchair seems less than prudent. Even if we are lucky enough to make it across Fulton alive there is no curb cut on the other side and we have to lift Maggie and her chair (approx 170lbs) onto a high sidewalk. Best to walk to the signal and do things safely.

There is a signal at 6th Avenue, just three blocks west. Many of you know that 6th avenue once went through and into the park, but vehicle access has been blocked for several years now. A nicely paved walking path opens up to a fully paved road after about 10 yards. The other end is also blocked so vehicles cannot access this area at all. This ½-block stretch of pavement is the best spot for roller skaters. They never have to worry about cars. On the weekend afternoons, this spot if filled with roller skaters racing about or doing tricks and jumps in the middle. They are fun to watch and people gather around the edges for the free show. The skaters take great care of their little spot; in fact, they bring brooms and clear away any leaves or branches. The pavement is always perfect and smooth.

Generally, when we walk through there early in the morning the skaters have not arrived yet. There might be a couple of skateboarders but the place is a nice wide expanse for the wheelchair. This is Maggie's favorite spot in the park. It is our favorite place to play catch with Maggie.

Just so you know, when I say "play catch with Maggie", I am not talking about throwing a ball to her. She could never catch it and the game would get old very quickly. No. I mean we play catch WITH Maggie.  Before you get on the horn to CPS, we are not tossing her about willy nilly. She is in her wheelchair and we shoot her back and forth between us. Each of us has to catch Maggie as she rolls by.
 Steve is better at it than I am, He can really get her chair to go a long way. I am a weakling and Maggie goes slower and less distance when I am pushing. Apparently, I push like a girl.

Even when her pathetic mother is pushing, though, MAGGIE LOVES THIS.

Even if you don't live next to someplace as cool as GOlden Gate Park, I hope all of you find that little stretch of pavement where you can roll free.

Gotta Fly!

While Maggie is at school, I have time to myself. This is the only time I can really get things done. Lately, for some reason, I seem to spend the morning working around the house g and then spend the last hour or so of my freedom RUSHING to get other things done before Maggie’s bus arrives at 1:30 PM. It really is astounding how much you can accomplish in an hour when you have to. It would be far more relaxing to do things the other way around, but it has become something of a game with me.


This morning I actually got a fair amount of work done. I just resolved a matter for a client and all the final paperwork had to be copied and delivered. In addition, Maggie’s recently repaired dynavox was not actually repaired and that had to be prepared for shipping back for another round. I sent faxes and prepared packages and by the time I came up for air it was after noon. From 12:15PM to 1:20 PM I was able to get to the UPS store to ship the dynavox, go to the post office to priority mail some documents and hit the bank. Unbelievably, there was no line in any of the three places and I had time to spare. A quick trip to Safeway and I was home with five minutes to spare. May be a new record.

Maggie has a nurse with her in the afternoon, but the nurse cannot do things alone and I need to be here to help her with procedures. I could let her meet the bus alone and I have done so when necessary, but I like to be here for Maggie when she gets home. Besides, once the 3PM procedures are done today,I am out of here. I am leaving at 4PM and Maggie and the nurse are on their own until Steve arrives at 6. I am going out on the town.

I am going to see Peter Pan, which is playing in a giant tent on the Embarcadero. From what I hear, it’s a spectacular show with the actors flying above the audience. (Check it out here http://peterpantheshow.com/ ) Our friends Malcolm and Lindsay have ONE extra ticket. Malcolm,, who works with Steve, went into Steve’s office and said, “you have to watch Maggie next Thursday night because we are taking Sally to Peter Pan.” Steve happily agreed and he will play backup caregiver so I can go out. He will be on his own when the nurse leaves at nine, but he can handle it.

Right now its 1:45. I still have to do a bit more legal work, shower, dress, help Maggie, walk the dog, and do a ton of other things. I’m starting on those things now. I don’t want to play the last minute game tonight. I want to be in that seat when the show starts. I am hoping to be able to learn how to fly. It will save me so much time!

Sleepy Summer Days

The first week of Summer school is ending. Maggie is exhausted. She slept for three hours yesterday afternoon. This new schedule is knocking her for a loop. The bus comes a full hour earlier than it did in the regular school year. She has to be downstairs and ready to go by 7:20AM. That means she does not have that extra bit of sleep she used to get before the wild morning routine starts. Now it starts at 6:00AM instead of 7:00AM. The night nurse has her dressed for school when I come down and we have arranged her schedule so that she’s fed and catheterized at 6:30. That is less stuff that I have to do, which is great for me. I still have to fill the oxygen tank, program the computer (if I did not do it the night before) get the suction machine, tray, pole supplies etc. It used to be that Maggie was resting while I did all that. If she was not asleep, she was laying down quietly watching me bustle about. Now I am doing that while the nurse is finishing Maggie’s care. No rest for the wicked, I guess.
Summer school is a bit of a joke. According to the nurse, they are working on puzzles a lot. It really does not matter to me because this is her only opportunity to socialize. No one is programming her communication device except me because the summer school teacher is not an AAC specialist. Programming it is easy, but it takes a few minutes or dedicated concentration. You have to want to do it and even if she wants to, I doubt the woman has an extra 30 seconds in her day. Therefore, Maggie goes to school with her “news from home” programmed in and comes home with the same thing I put on in the morning. It does not matter. It is a good review for me. I have decided to make it a mental exercise to repeat my own words verbatim; maybe it will help stave off Alzheimer’s. (Sometimes you REALLY have to look for the silver lining)
The school day is short, 8:00AM to Noon. Maggie is home by 12:30. Because she is so tired, we have not done much in the afternoons. She just listens to stories and music. She will adjust, however, and I have to come up with some entertainment. Summer school will end July 24 (I think) and by that time she will be raring to go at 6:30 AM and we will have a whole day stretched out before us.
I need to come up with a schedule. It may sound ridiculous, but if I plan to be on the go by 9:ooAM every morning and back here by noon or so, she will have the most fun. She is a morning girl and we have to arrange outings around all her medical procedures. (I do not mind feeding her in public and do so all the time, but the catheter situation…, not so much) It is too easy to let the morning slip by and not get out. Once the nurse is here I have to tend to my stuff, so I need to make sure we are up and out early.
We are just a couple of blocks from the museum and the Academy of Sciences, which are both enjoyable. A morning at the zoo is a must and trips downtown to dad’s office, and shopping at Union Square, dog walks at Crissy Field or in Golden Gate Park, and maybe even a road trip or two to visit cousins in the North Bay. We will be girls on the go in August.
Now I am tired.

Hot Town Summer in the City

In these last few days of Summer I am trying to fill our days with outings. There is so much to do that the hours just tick by. It's very easy to let the day slip by and wait for the nurse to get here; but if that happens, Maggie doesn't get out at all. That's just not fair. She needs just as much fresh air and stimulation as the next person. So we got all the medical stuff done, and took off. About 20 minutes after I put her in the wheelchair we actually got downstairs. It was one of those times that leaving the house was impossible, I forgot the food and tubes, couldn't find my purse, Maggie's shoes came off, etc etc. Undaunted, we marshaled on.

Getting out of the house is always an adventure with Maggie. We live in San Francisco, a city of tall buildings with lots of stairs. Not exactly the easiest place to live with a wheelchair. Many years ago we had a lift (elevator) installed outside. It's a platform lift that is open to the elements. Not elaborate by any means, but a godsend. We go out Maggie's room, (which used to be the breakfast room) onto a deck and get into the lift. The new wheelchair just fits; but Maggie has to have someone with her. So the attendant, me, another family member or her nurse, has to stand on tip toes wedged in sideways to fit. The lift goes slowly - 9 ft per minute - so getting from the main floor to the garage level takes a couple of minutes. It's not a comfortable ride.

Once downstairs we have to get into the van to go. Happily we have a new van. Well, it's actually used, but new to us. I press a button and the door opens and the ramp comes down. That's slick. The chair locks in and we're ready to go. I have discovered, however, that I have to stand there and hold Maggie's hand while the door is closing because she could get her hand caught in the ramp as it folds up. You can see why it takes so long to get anywhere.

This morning we went with the dog to Crissy Field for a walk. The sweeping views and the walking path are perfect for all of us. The dog has fun, and Maggie ALWAYS has fun. It's easy to push her chair and enjoy the looming Golden Gate Bridge that feels so close you can touch it. On a nice day it looks like this.

But not today. Summer in San Francisco does not mean barbecues and beaches. We have to wait for the end of September for our nice weather. Summer means sweaters and foghorns. It was incredibly foggy today. Beautiful Crissy Field and its sweeping views looked like this:That's pretty much the same view as above. The Golden Gate Bridge is right there, I swear. Ironically along the walking path there was a lovely display of globes decorated in various ways to illustrate how we can stop global warming. I pulled Maggie's hat over her ears, zipped up my fleece jacket and read those with great interest. We were hoping for a little warming, but it was not to be today. It's August 21 and we had to cut our walk short because we were freezing. We loaded back into the car and went to the grocery store. When we needed to recreate our outing to Crissy Field we went to the frozen foods section. Maggie still had fun - she lives for adventure. The dog, not so much.