Monday, April 30, 2012

Clean communication

I know this will come as a shock to many of you, but I am often amazed by my daughter....

On Friday night at the Giants game Maggie put this on her talker. 

If you cannot read it it says "I wash with Dad." I heard it and said "What!?!?!" You want to wash with dad? Is he dirty? Are you?" She slammed her hand down to say NO! and changed the sentence a little bit to say " I want to wash with dad."

She was clearly trying to tell me something and I wasn't getting it. Finally it dawned on me. Maggie was using "wash" because it sounds like "watch" She wanted to watch the game with Dad. She wanted to sit next to Steve for awhile. I asked her if that was right and she signed yes. And if I'm not mistaken there was the 18 year old "DUH, MOM" implied in that yes. 

Steve and I immediately switched places. If she can go to all that trouble to convey what she wants, we are going to give it to her. 

Maggie has done that type of thing before before and it always take me a while to get what she means. I need to listen instead of read it, because all of her language and communication is done by sound. Though they mean very different things, "wash" and "watch" sound very similar.

She does not really have a communication problem at all, I just need to speak her language, just like every other mother of a teenage daughter.

Sunday, April 29, 2012

Christmas in April

                                                                          Palm trees in front of AT&T park

On Friday evening, we used our Christmas present from Eddie. He gave the rest of the family tickets to the Giants-Padres game. It was a great gift and he took care to make sure the tickets were in a wheelchair accessible place and  included a parking pass so that Maggie could be part of the fun.  Quite generous and very thoughtful.

There was a slight hitch in the planning when I realized a couple of weeks ago that I  lost the tickets he sent, but with all these new fangled computers and bar scanning, the tickets were easily replaced. Of course I had to come clean with Eddie that I lost his generous gift before I could get the information I needed to get them replaced. That was embarrassing, and I was on the receiving end of a lecture I have delivered many times about being careless with my things. Turning my words back on me was a little bonus for Eddie.  When the new tickets arrived I carefully placed them in a very safe place - this time one I could remember.

Friday was a PERFECT day in San Francisco which was great because the nights can be very cold at the Giants games and I was concerned about Maggie. She was fine, though, and we were off.  Maggie was excited to be in all her Giants gear and hanging with Tim as we prepared to go.

This is how gorgeous things were when we arrived, beautiful views and big smiles.

Maggie did get a bit cold in the 5th and we added the stocking cap to complete her look

Our seats were on the club level which has an indoor area where the food vendors are. She and I went inside for a bit and she had a meltdown. I think it was just sensory overload, the crowds, the cold night air (which was very mild by SF standards), the constant noise punctuated by the cheering, etc. We also had an obnoxious drunk in front of us who ended arguing with the usher for an inning or so before getting ejected from the stadium. That was distracting for us and I'm sure Maggie picked up on that. (We had good laughs at his expense later, though.)  After she recovered from her meltdown, we went back to where our seats were but stayed inside so she could get used to the idea of going back out.

When she saw Steve and Tim sitting there she wanted to join them. (you can see the space for her wheelchair there)

Maggie made it until the 8th inning, which is far longer than I expected. She and I slowly made our way to the car and Steve and Tim watched the end of the game. By the time I got her out of the stadium, fed and loaded into the van we probably only waited 10 minutes.

The Giants lost the game, but it didn't matter, we had a great time. While driving home we decided we have to do an annual family trek to the park. We all go to several games a year, but we don't all go together and we almost never bring Maggie. It's a lot for her, but she had a great time.

Now I just have to get Eddie to pony up a gift like that every year. Better yet, we have to do it when he and Grace can join us.


Friday, April 27, 2012

Ch ch ch Changes

I participated in a panel yesterday at UCSF. I do this fairly regularly and I enjoy it. Various groups from UCSF listen to parents of patients, and in yesterday's case to an adult patient as well, while they talk about what works and what doesn't work for families when one is hospitalized. The groups are interested in the feedback because it really is their desire and mission to provide the best care possible.Yesterday's group was the Patient Satisfaction committee, who are even more interested in how to keep Patients satisfied.

As the panel wrapped up  I found out that  tangible change happened as a direct result of my participation in a panel presenting to this group a year ago.  One of the leaders told me that last year I mentioned how difficult it is to leave Maggie's bedside, even to grab a cup of coffee in the morning. She said they instituted the coffee cart on the hospital floors because they had never considered that difficulty until they heard me mention it. That was nice and gratifying.

There was polite applause from the group but that changed to laughter (by most) when I decided to strike while the iron was hot. The second she finished telling me about the change, I said, "Oh, by the way, parents really need to have a glass of wine and cheese around 5PM."

After all, there are documented health benefits and this IS a hospital, right?

Not sure that's going to happen, but you can't blame a girl for trying.

Wednesday, April 25, 2012

View from the top...

One man’s ceiling is another man’s floor.  You can be looking up or down at something depending on where you stand. And it looks different from both perspectives.
Perspective is an ever changing and fascinating concept.  It is not really the same as attitude, but it is related. Perspective is how you see (or hear) something and attitude is what you do with what you see.   I have a very positive attitude, but I still see things through the prism of my life. I generally make the best of what I see because of my attitude, but my view is skewed, just like everybody else.  For example, my first thought of new business might be wheelchair access while others see the paint color, or the window display. It is not positive or negative, it is just seeing things as they fit into our own lives. 

The way we look at something really does change everything. We all get stuck and often defensive of our particular perspective, but sometimes we need to change our perspective to get the full picture. Everyone benefits from an occasional change in perspective. If nothing else, we gain a better understanding and appreciation of our own life.  

I’ve had several opportunities to do that lately and find myself very appreciative of all the things in my life and especially appreciative of Maggie’s abilities.  Yes her abilities, not her disabilities.  Too often, I look at life through Maggie’s limitations. I always make the best of them, but I come at it from a negative perspective.  Lately, for various reasons I find myself  quite amazed and enthralled by all that my daughter has accomplished given her physical limitations. And I have to say, this change in perspective is wonderful.  

This is not to say that there aren’t still difficulties and that her care isn’t taxing and difficult to manage, because it is, and I will likely be back to complaining about that in a day or so, but not today. Today I am proud of my daughter. I am proud of her ability to communicate and tell folks what she wants and thinks. I am proud of her ability to charm people and change their negative first impression to a positive one.  I am envious of her uncanny ability to live in the moment and I am grateful for this run of good health.

Other parents of 18 year old girls are helping their daughters weigh college options and other future opportunities.  There are times that realization makes me incredibly sad because Maggie will get none of that.  Maggie doesn't live in that world. Today is not one of those times.

 Today I see Maggie in  Maggie's World, where she reigns as queen.

And I’m the Queen Mum.

Tuesday, April 24, 2012

Eddie's Birthday!

My first born is 24 today. I'm not sure how that happened. I could wax poetic about all the things he did as a baby, which seems like five minutes ago. Because he IS 24, I will show some respect and keep those stories to myself.

He is celebrating(?) his birthday on the road. He is somewhere between Las Vegas and Colorado where he is headed for another work event. Not much fun, but that's the downside of getting older. Your birthday is just a regular day. Well, Eddie, I can tell you it is definitely not a regular day to me. (*wipes away motherly tear*). Happy Birthday!

Saturday we drove down to Monterey to see him at the Sea Otter Classic, where he was working over the weekend.  Maggie stayed here with the nurse while Steve and I did a quick nine hour jaunt to take him out to dinner. I brought a birthday cake which Maggie helped me bake.

When Maggie helps in the kitchen she is usually throwing pots out of the drawer or saying over and over again, "mom, I cook."  This time I gave her a task. I told her Eddie's birthday was Tuesday and she needed to say Happy Birthday to him on her dynavox. I wasn't sure if she could do that but when I realized she was starting, I turned on the video on my phone.  It took her a minute but she got it done. Watch.

She never ceases to amaze me. 

We put that on Eddie's facebook first thing, so Maggie could be the first one to wish him a Happy Birthday. I told her that it was three days early, but she didn't care. When Maggie wants something you just do it. Life is so much easier that way. Teenage girl runs the house - not earthshaking news at all. 

We frosted the cake and I tried to get a picture with the cake on Maggie's wheelchair tray, but that cake would have had a giant hand print in it and she would have had an allergic reaction, so we opted to keep in on the counter where both she and the cake were safe.

That cake traveled from here to Monterey, California,  from Monterey to Las Vegas, Nevada and is now en route to Colorado. I do believe it's my first interstate dessert.

Happy Birthday Eduardo!

Monday, April 23, 2012

No school Monday

No school for Maggie today. There were teacher meetings or some such thing. This us the type of day off my mother used to call "janitor got a new broom day." I didn't really really get her sarcasm when I was the one with the day off.

I understand it better now.

Maggie enjoyed a fun filled morning with me. We listened to her music and then went to north beach to get Maggie's haircut. No one enjoys a haircut more than Maggie.

She enjoyed a quick  
feeding and then helped me at Safeway. She loved the pepper display I let her pick one even though nether she nor I touch the things. (she can't, I won't).

We were back here when the nurse arrived. They two of them of them are hanging out while I work.

Perhaps I should get back to that.

Sunday, April 22, 2012


The busiest weekend in recent memory is drawing to a close. It was go go go.

I laughed 1000 times yesterday at the reunion, seeing some people I have not seen since I graduated from high school back when Calvin Coolidge was president. Ok, maybe not quite that long.  I actually had a bit of laryngitis this morning from trying to talk over or with 500 other women simultaneously.I did take one serious thing away from that reunion. Seeing all those together women is making me rethink my commitment to just let my hair go gray. They all look so fabulous!

Just before the reunion started I received a text from a nurse agreeing to take the Saturday night shift so we could do our quick trip to Monterey and back. If he hadn't taken the shift, I would not have gone because there just would not have been time. The morning was a bit frantic. Every single time we decide to try something, our nursing falls through or some other glitch arises. I was bound and determined to make this work and called and texted every nurse we have for over an hour. Filling an overnight shift  for Saturday night at the last minute is not easy, but Rudy came through and we were off.

Monterey is about two hours from here. Steve picked me up from the reunion and we were there in time to take Eddie to dinner. Steve drove the entire way, which was a good thing because I fell asleep after about 10 minutes in the car and woke up in San Jose. We visited with Eddie and returned home by about midnight so we could greet the night nurse who came to our rescue. Steve drove home too, and again I slept for about half of the ride. This happens every time we take any kind of road trip because I actually relax and BAM! I'm out like a light.  I decided maybe I shouldn't complain about being tired since he did all the work while l snoozed. He slept in today and had a free day of puttering.

This morning I set Maggie up with her talker and the first thing she said was "Mom, I miss you." I was gone for 12 hours and she very sweetly let me know that was really not acceptable to her. I just smiled and said, "I missed you too Mag, but I always come back, don't I?"

The weekend wrapped up with a wonderful afternoon spent with Elizabeth who I was meeting in person for the first time. We are blogging friends, and fellow warriors in this life with disabled teenaged daughters. Maggie told jokes and charmed her and her friend Jody, who I also know. I met Elizabeth through Maggie World (virtual) and I met Jody through Maggie's World (actual). Now Elizabeth can slide into the "actual" slot as well.  Seems like she had been there for years.  We connected like old friends and talked for hours.

I took her to the airport and said goodbye and drove home with a big smile on my face. It was a great ending to a great weekend. I solved the nursing crises, spent time with my husband and son, reunited with old friends and connected with a new one.

Of course it's not really over. Maggie is off school tomorrow for some teacher day or something. That means another day of activity.

Time for another nap.

Saturday, April 21, 2012

Wild weekend whirlwind

It is the calm before the storm. My weekend plans, which were already full, just became ridiculously so.

Today I am headed to an all year high school reunion. I went to St. Rose Academy, a girls Catholic school that closed following the 1989 earthquake because the building was damaged beyond repair. They finished out that school year with girls scattered here and there but closed forever in June 1990. That means the youngest St. Rose girl graduated 22 years ago.

Incidentally, I was not in that class.

They had one of these once before and over 900 women showed up. I hear today it's more like 500 - but who knows if there was another late rally. Either way it will be a ton of laughs.

My son Eddie, who lives in southern California,  is in Monterey this weekend at the Sea Otter Classic. Steve and Tim were going to drive down to see him and take him out to dinner. Eddie's birthday is Tuesday and he will be en route to Colorado for another big Bike event, so this was to be his birthday fandango.  The nurse would be here during the day while I went to the reunion and then in the evening, Maggie and I were going to head to another Birthday party. Our friend Michael Aicardi just opened the San Francisco Baseball Academy and he is celebrating his birthday there tonight. But now I have to cancel that appearance.

All plans are out the window because we found out at 9:30 last night that Tim could not get off work. Steve really does not want to drive to Monterey and back all alone and I would like to see Eddie. It was time to reshuffle.  The same nurse was here last evening and I asked if we could switch things around today. She is always very accommodating.

Now Steve is going to watch Maggie while I'm at the reunion until the nurse arrives at  2:00PM. They are heading to the park together. He will then pick me up at the reunion around 3 and the two of us will head to Monterey. It's a 2 hour drive. We will have dinner and drive back. The night nurse is coming at 10PM tonight so Maggie will be covered.  It will be a very long and tiring day, but I'm glad to get to wish Eddie a Happy Birthday in person.

Of course the downside of the nurse arriving at 10PM means that she will leave at 6:00AM and I have to be ready to rock and roll bright and early tomorrow. Then I will finally get to meet Elizabeth, author of one of my favorite blogs a moon, worn as if it were a shell.. I hope she understands why I'm so tired.

And just because that's how things work, Maggie is off school on Monday. Looking forward to Tuesday for a nice long nap.

Update - And now the nurse cancelled for tonight and I won't get any sleep. FABULOUS!

Wednesday, April 18, 2012

Prom Date!!!

The PROM is approaching!! And Maggie has a DATE!

Tyre's mom called on his behalf to ask if Maggie would accompany Tyre to the prom on May 4. I responded on her behalf that she would love to. His mom asked her dress color so Tyre could get the matching shirt and accessories and get Maggie a corsage. (I suggested she skip that as Maggie will either methodically tear it to pieces or be allergic to it.)

No, this is not Victorian England where parents are arranging suitable dates for their offspring, it's parents of two non-verbal disabled teenagers conveying messages.

Of course attending the prom with Tyre means that both of them will arrive in separate wheelchair vans driven by their respective parents, and their "dancing" will be limited to having folks move their wheelchairs in unison, but that's how things roll in Maggie's World.

Maggie is already excited. She loves the build up, she loves getting ready and then she has so much fun in the short time she actually  spends at the prom. 

Mission High School has invited the special ed kids to attend at no charge for the past couple of years. I presume that is the case again, but I'm not sure. If Maggie needs to buy a ticket, of course we will do that. This year is is taking place at the Museum of the African Diaspora, which should be pretty cool. 

I read the other day that the average amount a single high school spends on Prom is $1,078  Not per couple, mind you. Per person. Can you imagine? That staggering amount includes the dress or tux, the ticket to the dance, the limo rides, the hair, nails, makeup, shoes and jewelry etc. .

Maggie is single-handedly bringing that average waaaaay down. As noted, she likely gets to go for nothing, which is a start. Her friend Anne Marie (who also provided her beautiful birthday party dress) gave her a beautiful dress to wear. There will not be any limo or hair or nail costs. We do have to find some shoes, but considering her feet are still in baby sized shoes, that's not an outrageous expense. 

We did buy something, though. Maggie and I went out the other day to shop, thinking perhaps a nice hair ornament would work. We came up empty on that score, but we did find a "tennis bracelet that will match her dress perfectly and we went for that. Now we just needs shoes and stockings. . 

The prom is a right of passage. Everyone should get a chance to go. Although Maggie's experience is very different from those of her non disabled peers, I doubt any of them have more fun than she does. 

And if they're spending $1,078 each, this is one of those times  I am thankful Maggie is anything but "average"

Monday, April 16, 2012

Jeez Mom!!

The nurse that comes on Sunday nights does almost all of the morning routine for me. I love that. I don't have to lift Maggie or fill the oxygen tank, or stuff the dynavox into her bag. She even takes the tray downstairs on her way out. That gives me an extra 10 - 15 minutes in the morning, which is great.

Really all I have to is complete the package. Sometimes that means adjusting a mis-matched outfit, but not today. I changed her scarf, which was already wet and needed changing and brushed her hair and she was set. The last thing I do before we leave is feed Maggie. She is fed slowly overnight, but that stops around 6:30. She's not hungry per se, but she can't make it to the next feeding either.  I give her a bolus of food so she starts out full and on schedule for her day.

This morning I did the finishing touches and said, "All I have to to is feed you Maggie and you can go to school."

Immediately after that I was sidetracked by something. Five minutes later I was in her room drawing a complete blank on what needed to be done. I said, "Maggie I came in her to do something but I can't remember what it is." (All you young people out there, stop laughing. It will happen to you too).

I looked at Maggie and she just raised up the bottom of her shirt to show me her feeding tube. RIGHT! You need to be fed. She was reminding me!!

 I thanked her profusely and she laughed her head off quite proud of herself.

She was laughing WITH me, not AT me. Right?

Saturday, April 14, 2012

No Place Like Home

A frustrating morning is turning out alright.

Steve needed to bring his car to the dealer for some recall item. I laughed when I heard him make arrangements to drop it off at 7:00AM on Saturday. He's not really an early morning guy. But it made sense. He needs the car all week and dropping it off early Saturday insures it will be done today. Still 7:00AM is early for him, especially when he arrives after 11:00PM from an overnight trip to court in a distant county.

I thought what the heck, we'll make an adventure out of it. Maggie and I would pick him up at the dealer and the three of us could go out to breakfast. At 6:55 AM I had to yell at him to get out of bed and get the car down there. Maggie and I left about 15 minutes after he did and picked him up. At the last moment I took pity on the dog and invited him along. That was a tactical error because it further limited our options.  Now we needed to find a place to eat outside so the dog wouldn't freak out. But it was a little cold, so the outside patio had to be in the sunshine for Maggie and for us.

We wandered about, but many places like that cater more to the Brunch set and weren't even opened yet. We headed down by AT&T Park, because its Giants opening weekend and everything is in celebration mode. Not really many breakfast places down there - but lots of taverns. Didn't seem right for us. Maggie started coughing and as we turned to suction her, I realized I forgot the suction machine. We had to rush home. (It was just too early for me too)
We dropped off the dog and started out again, this time in our neighborhood. The neighborhood places are small and don't really fit Maggie's chair. I'm not making an ADA statement here. She would sort of fit and no one would turn us away, but it's not very comfortable.  Steve suggested another neighborhood across town and I said No. I'm not driving any place else. I was irked. Something as simple as breakfast out was too complicated for us.

This stuff gets old.

We gave up, went to Safeway, bough some eggs and came home. Of course I dropped the bag of groceries and lost three eggs in the crash which only added to my frustration.

When we arrived, our back deck was bathed in sunlight and protected from the cool breeze. I made scrambled eggs and toast and we found exactly what we were looking for. Dorothy was right. After all of our searching, it turns out there really is no place like home.

Maggie enjoyed that but she was ready to move on to the next adventure. She didn't have much fun riding around town in the dawn's early light either. She just worked her Dynavox until she assured Steve they needed to head to the park. They took the dog leaving me a few minutes of peace.

I'm going back out to the deck with the paper. 

Thursday, April 12, 2012

If, Then

I don't know if this is a San Francisco phenomenon or if it happens everywhere, but almost anytime you call the City  or State you end up talking to a person for whom English is their second language. Many people complain bitterly about this, but that doesn't bother me.  People blame the accents but I don't think it's the accents that make it difficult. It's the bureaucracy speak.

After spending three days in a morass of red tape, I can safely say that Bureaucracy has its own language. And that language does not have any words for "please", "thank you" or "maybe."  It is limited to a structure of "if, then."  If you received that paper, then you must complete it. It doesn't matter how ludicrous, it's just IF, THEN.  If you have three heads, then you MUST wear three hats. It is rule based.

Maggie of course, does not fit in an IF, THEN world. Never has. never will. And it is my job as her advocate to break through that to get answers. It is frustrating. But I am persistent and eventually get what I need. This time I may have waited to long to begin the discussion, but hopefully I have prevented an error from occurring. IF that is the case, THEN I will be happy

Maggie receives Medi-cal, the California program for Medcaid. Medi-cal has been a complete lifesaver for us. Even with our private insurance, there is absolutely no way we could have kept Maggie at home and healthy without this program. It pays for things the insurance doesn't cover or only partially covers. It also used to pay for the nursing, though that is now paid through another program.

Medi-cal is now going to a managed care model, but the few beneficiaries like Maggie, who have private insurance, are not supposed to sign up for a managed care plan. Because of that I ignored the packet of material that arrived in January about choosing plans. It was sitting on the table in the hall for weeks unopened. Last week Maggie received a letter saying the State of California would choose a program for her if they didn't get a response by April 14. Hmmm. Maybe there's a problem here. I started to call.

The number in the packet is Health Care Options, only for making the choice or questions about the choices. IF there were other types of questions, THEN I had to call Medi-cal. OK. call medi-cal. IF she received the packet THEN she must choose a plan. Call Health Care Options. Lather rinse repeat until on about the 4th call to medi-cal, the woman tells me Maggie does NOT have private insurance. Yes, I assure her, she does. She always has. IF the computer says she doesn't THEN she doesn't.


But she's right. It doesn't matter what I say, it matters only whats in the system. This woman is actually helpful and tells me I have to fix it with Social Security. Oh joy. Another huge bureaucracy. But I have a secret weapon. I have the direct line of the guy who did Maggie's intake for SSI and I still have to give him other information. I can call someone directly. It takes a day or so to connect, and he confirms that the private insurance is not in the system. (I must have checked some box incorrectly.) That is fixed. I start the other calls again. Three or four calls later, a woman in Sacramento tells me to instruct Social Security to advise medi-cal of the change and then call back on Monday and see if the records have been updated. I wonder why a federal office of Social Security would have to report to a State medi-cal office (things usually flow the other way), but I do as instructed. As anticipated, my contact at Social Security says, we don't really have any direct contact with them.

I decided to walk away from it and hope for the best. First. though I sent a letter explaining what was happening and that I would check back on Monday. Of course, they are FORM people. I'm quite sure they won't know what to do with a letter with complete sentences. Letters are "maybe" things. That does not compute in Bureau-speak.

IF I have to start this all over again, THEN I am going to scream.

Wednesday, April 11, 2012


I learned more about Maggie's wheelchair falling over when she came home from school. Apparently it wasn't such a slow fall*, but a crash and she landed a little to her side. The driver stopped the bus on the hill in the middle of traffic to fix things. Her nurse said Maggie was shaking with fear, but physically unhurt.

I called the classroom to check on her before I went to the dentist because I knew I would be out of touch for a while. The teacher said she was working and happy so I didn't worry. I knew, though that there would be more when she came home. And there was.

Her physical therapist comes on Tuesdays to work with Maggie in the walker. This is very difficult for Maggie. She is never upright and it's a bit scary.  I'm sure you can figure out what happened. As soon as we put her in the walker she started to melt down. This has happened before, but this time it was different. Maggie was inconsolable. We immediately took her out and put her in the chair, but she could not stop crying. After a few minutes I took her out of the chair and sat with her on the couch while she just cried out all her fear.

It would have broken your heart. She was so sad and so frightened and all the hugs and kisses and reassurance could not make it go away. It was the exact same reaction she had when her wheelchair fell over in middle school. She waited until she got home to mom and then completely fell apart. She finally recovered after about 45 minutes of solid crying. By then she was exhausted. So was I.

When her bus arrived this morning her regular driver was back (that was a sub yesterday.) He knew what happened and took no offense when I said, Please use the tie downs.

They got to school without incident.

*no one told me it went over slowly, I think I just saw it that way in my mind and wanted to believe it.

Tuesday, April 10, 2012

Great start to a Tuesday

Maggie is out the door and onto the bus and I come back inside to begin my routine of ignoring everything I need to do so I can read the paper, check facebook, etc.

About 10 minutes after they leave I get  phone call from the nurse. Maggie's wheelchair tipped over backwards on the bus as it was chugging up Fulton Street.  Maggie stayed in the chair as it went over. She has seven buckles keeping her in that chair and all were secure. Seems the substitute driver didn't completely secure the tie downs.

Maggie is fine and safe, though a bit frightened.

 I, however, have an incredible stomach ache.

Monday, April 9, 2012

Easter Recap

Hope all who celebrate had a Happy Easter. We went to a fun and raucous Easter Brunch at my mom's house. I believe we were 26 total with lots of siblings and cousins. It was fun. I never sat down to eat at the Brunch because I snagged so much bacon while I was cooking in the morning.

I was in charge of the meat and I cooked a ridiculous amount of bacon and sausage. This is 9lbs of Bacon and there are 3 lbs of sausage underneath that.  Vegetarians should avert their eyes. Of course it was too much and I gave out meat party bags to Tim and two nephews.

Maggie loves these gatherings with her cousins. there were 10 or so out of a total of 20 cousins there ranging in age from 17 to 27.  The vibrant energy of this crowd together cracks her up. And every cousin checks in with her, and of course she adores the attention. My nephew Jeff turned 18 yesterday so there was cake and singing, which is also hilarious in Maggie's view of the world.  Maggie wore her fancy Greek sandals, and in our own little Easter miracle, they stayed on her feet until we got home. Actually she lost one in the driveway as we arrived home, but that is a new record.

We came home and I read my book while Steve and his dad watched the masters on television. We had a quiet dinner of Easter ham. This was the traditional Easter dinner when Steve was growing up and it is for many others as well. Not me, though. I absolutely HATE ham and had vegetables and potatoes for dinner. Maggie and I hung out while Steve took his dad home. She snoozed in her chair, exhausted from a day of celebration and  revelry.

Back to the grind today. And there will be no cured meat of any kind allowed in this house for a week or so.

My letter to the editor is in the SF Chronicle today. It doesn't appear they edited it at all. Three or four others also took issue with the suggestions that the city charge $500 for a handicapped placard. You have to scroll down a bit to get to it.

Friday, April 6, 2012

Just got a call. San Francisco chronicle will print my letter to the editor - or some version of it - on Monday.

See yesterday's post for a preview.

Thursday, April 5, 2012

NIMHS (Not in MY Handicapped Spot)

San Francisco is embroiled in yet another parking debate. It appears that we will now have to pay for meters on Sundays. People are outraged, but I'm not really sure why. It was bound to happen. Sunday is no longer the "day of rest" it once was. Stores are opened and people are out doing the same things they do on Saturdays. I don't want to pay, but I will. Or I'll get more parking tickets, because those are bound to happen too.

Of course those with handicapped placards don't have to pay for meters. Not in San Francisco or anywhere else in California. (I'm pretty sure that's the case in most if not all states, but I'm not sure of that.) If Maggie is with us, we put up the placard and we get to park for free. Some take great issue with that. To them I say: wanna trade problems?

This letter to the editor was in the Chronicle this morning:

Make everybody pay

We can open up more parking by charging a fee for disabled placards. $500 a year for a placard would make dishonest people think twice about applying. It would be small fee to pay for convenience for a truly disabled person. Nothing should be free of charge. Also, make handicapped parking available to all after 9 p.m. Kerry Mark, San Francisco Read more:  

Because people with disabilities aren't allowed out after 9?  *Shakes head*  Kerry Mark, whoever you are, you should not upset me so early in the morning. 

I just submitted this response to the Chronicle . I wonder if they will print it. 

I circle streets looking for a space that will allow room to lower my daughter’s wheelchair ramp and unload her giant wheelchair with the additional 50 lbs of medical equipment hanging off of it.  This one won’t work because there is a tree blocking the path of the ramp, that one has newspaper racks, a third would only allow the ramp to open into traffic.  Every handicapped space is filled and nearly every meter downtown has a car with a handicapped placard in the window.  Where are all these handicapped souls? They certainly don’t attend the meetings.
When I  witness seemingly healthy able bodied individuals bounding  out of vehicles with a handicapped placard in the window, I  try to give them the benefit of the doubt. Many disabilities are invisible; but many people use handicapped placards illegally.

Instead of Kerry Marks’ ludicrous and cold hearted suggestion that a $500 annual fee be imposed to obtain a handicapped parking placard, (letter April 5) how about some rigorous enforcement against those who obtain and use them unlawfully.  Imposing a significant fine on the scofflaws would bring in far more revenue that imposing fines on the truly disabled.  Sally Coghlan McDonald, San Francisco

I feel better already.

Wednesday, April 4, 2012

Attention Huddled Masses

I have been in a funk all week. Truth be told, there are days this life gets old. This year it hits in Holy Week. Fitting, I suppose.  We can only hope Easter week brings relief.

I wish I could explain the funk, but I can't. It's likely a combination of things. Maggie was off school last week and every vacation is just a little more difficult for me. Planning every minute of the day around Maggie's needs is physically, mentally and emotionally taxing. By the end of the week I am completely exhausted from the increased amount of lifting and maneuvering I have to do. In addition to that I have attended a couple of legal seminars on special needs trusts and meeting the needs of the special needs population - especially as they age. It made me very sad and very very tired.

Things will only get more difficult. Services are minimal and additional massive cuts in services are coming. One speaker I heard today warned that the services for the developmental disabled population could well go the way of mental health services in California. Mental health services in California used to be "okay" and today they are abysmal. In many counties they are non existent.  According to this guy, the California model of services for the Developmentally Disabled is the best in the country and we want to preserve it. (note: I take serious issue with the model living up to the reality these days.)  It was depressing to hear.

Of course there is always hope. One woman spoke of quality of life, a phrase that makes me shudder in the medical world, but one which is so important in the social services arena. She said for most of us the quality of our life is not measured by three meals and a bath and neither should that be sufficient for the disabled population. A quiet voice in the wind that must rise to a chorus.

I had to hurry home from that seminar because I had arranged for a Canadian doctor to come her and learn about how we handle everything. As if on cue I fielded a couple of phone calls regarding small Maggie issues while she was here. Despite the interruptions, this visit also gave me hope. She is specializing in the care of developmentally disabled adults. WOW! This is cutting edge stuff. I'm not sure such a thing even exists here. If this bright young woman is willing to devote her career to this, others will follow.

My family, and I'll bet the families of most of the people reading this, are somewhere in the middle of the pack. We are the middle class, some upper middle, some lower middle, but all middle. The extremes define the middle. One extreme is the rich and powerful, the other is the weak and vulnerable. Everybody is mad at the rich and powerful because they push the middle down. Why don't we all celebrate and protect the weak and vulnerable. They push the middle up. We will all look and feel better.

Somehow, someway, we all have to make people understand that the Maggie's of this world are not only a part of society and a part that needs to be protected and served, but a part that needs to be revered and honored. Then we have to convince the lawmakers of the same things, and they have to allocate the resources to make that happen. Or we have to find resources elsewhere.

We will all benefit.

Tuesday, April 3, 2012

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

Monday, April 2, 2012

Back to School

Maggie's Spring Break is over and I'm not sure who was happpier, her or me. Probably her.

She didn't get to have much fun, that's for sure. Even though we were able to get the car back on time on Friday afternoon, her wheelchair broke on Sunday meaning we couldn't really go anywhere, my excellent duct tape repair notwithstanding. It was fixed by Tuesday and then the rain started. She also spent all of Thursday morning at UCSF for a scheduled pulmonology appointment and tests. Bleak.

We did manage a trip to Macy's Union Square on Wednesday. We need a new chair for the nurses. The last one was really cheap and it didn't last at all, so we bought a nicer chair. It will arrive on Thursday. Maggie thinks watching me try out chairs is just about the funniest thing in the world, so that was a high point. Also, it is the Spring floral show at Macy's and the first floor was beautiful.

We went to the mall on Saturday and Maggie helped me shop for Sees Candy. If you have never tried Sees Candy, I can tell you you are missing something wonderful. I put this picture on facebook and about 15 people responded mentioning their favorite Sees candy. Maggie can't eat it, of course, but she had fun looking at all the beautiful selections.

Sunday the sun was out and it was a perfect day to head to the park. It was a tad chilly when you were out of the sun, but in the sunshine it was juuuuuust right.

She isn't really smiling in any of these, but she gave a HUGE grin when she saw Nurse Janice this morning. She lives for school!

Only about 8 weeks of school left, then we have to come up with more diverse outings.