The Importance of NOT Being Earnest

Several of you have forwarded me this post from the Huffington Post about the woman responding to a nasty note on her windshield chiding her for parking in the disabled spot. Turns out the woman was legally and more than justified parking there. She has two disabled children, one of whom has invisible disabilities.  Mom writes an eloquent and impassioned response to this anonymous note leaver.

Good for her.

I guess.

Frankly, I wouldn't have bothered. As my friend Elizabeth pointed out, it's too exhausting to be that earnest. If I ever had that level of earnestness and need to have people understand our life, I left it behind years ago. People don't understand and it's not my job to make them understand. I couldn't if I tried. And that's OK -- or not OK -- but that's just the way it is.

Don't get me wrong, I would have made fun of the person to no end. I would have tossed invectives like confetti, but I wouldn't have bothered explaining myself or my life to anyone. Especially not to someone who is so nervy and so cowardly at the same time. Nervy: S/he was willing to raise the issue. Cowardly: only willing to do so in an anonymous and chiding manner. This is not to say that my way is better; I doubt it is, I just know that's what I would do.

 I would not have taken even a moment to bother trying to figure out this person's life, which the mom sees as "Black and White." That assumption is just as offensive as the note, and I suspect its entirely wrong. Who knows what drove this person to leave this note. Maybe it is a disabled individual, maybe it is the parent, child or sibling of a disabled person. I doubt that person's life is black and white at all. At least they recognized the issue, even if they went about dealing with it in a ham handed fashion.

Still, Mom was right to be offended by the note. It was offensive to target her specifically, especially when the note leaver was so clearly mistaken. I raise the issue of the problems with handicapped parking all the time, but I do it generally. I don't target anyone specifically. Even in my general comments, I have been wrong plenty of times and you have educated me. There are both general and specific problems with this issue, but it's a lot safer and smarter to keep comment general and not target people specifically.

My general instructions for today are the same as many other days.

•  Don't take handicapped spots illegally. 
• Don't use handicapped placards illegally. 
• Be careful about judging those who have the placards. 
• Many people have invisible disabilities. 
• Many are stealing their grandmother's placard. 
• But you just don't know which is which. 
• If you are seriously moved enough to questions someone (as I was last week), tell a cop, if you can find one. It's their job to check, though it seems like a very low priority. 
• Finally, don't explain yourself to anyone other than a cop. It's just none of their business.

When you have the letter and spirit of the law in your favor, you don't have to explain yourself. Many years ago I was verbally accosted by a woman who decided I was using the placard illegally. She couldn't see Maggie because the windows in the van are tinted. I ignored her.  I wasn't dong anything wrong and I knew she was going to feel stupid when she shut up long enough to take in the reality of the situation. She jawed at me for several minutes not noticing I was loading Maggie into a small wheelchair. (Before the ramp days). She kept it up, infuriated that I wouldn't respond to her. Finally she stopped for air and realized what was going on.  And then she started stammering incoherently.

 I'm not going to lie. That was a delicious moment for me.

Cinderella on the Hunt

As we often do, we hit the Mall on Saturday. Parking was without incident and we were in the mall in record time.  Generally it takes us so long to get going we have to whip through so the nurse isn't locked outside waiting for us to get home. Not this time. We arrived around 11AM and the nurse was arriving at 1, so we had plenty of time to stroll.

We entered Macy's at one end of the and made out way to the middle of the mall. There Maggie chose to take the elevator UP and continue on the second floor. We went down one side all the way to Nordstrom, and started up the other side. We went all the way back to Macy's. I bought a pair of pants and as I was paying I noticed this

Maggie had lost a shoe

This is not unusual. Maggie's feet are so tiny and pliable, that it is difficult to keep shoes on her. Often once the shoe goes, the sock follows suit. Maggie looks like a small field goal kicker from a former NFL era.

The sock was still on, so the shoe could be nearby. I asked the clerk if anyone had turned in a shoe, but alas, it was not going to be that easy. We wound back through the departments we utilized, but nothing. We made our way back to the mall entrance stopping at an especially central and very busy cashier station to ask before we left the store.

I could feel the disapproval of the women in line as I interrupted the busy clerk, but that quickly changed to sweet concern. The clerk couldn't hear me at first, so I pointed to Maggie's shoeless foot and said "She dropped a shoe, did anyone turn it in here?" The ladies in line all clucked their concern but I just said airily, "Oh thanks, but don't worry. this happens all the time. She's Cinderella and she's trolling for Prince Charming." Maggie laughed uproariously at that. The ladies tittered politely.

We made our way back down the mall, looking on ledges and in corners for the errant shoe. At the food court I asked a woman if there was a lot and found because we were missing a shoe, but she didn't speak English and suggested I go to Aldo and buy Maggie some designer shoes. No. But thanks. If we are going to lose shoes, they are not going to be expensive shoes.

We continued our quest. We were getting close to the other end of the mall and I figured it was gone forever. Two women were walking in our direction talking about something that was likely stolen. Turns out they were referring to a single shoe. As they passed us the view behind them opened up and there it was.

 

All in all a good trip to the mall, though Prince Charming remains elusive.

I wrote most of this early this morning before putting Maggie on the bus. I noticed a familiar sight and had to grab this shot while we were downstairs waiting for the bus to arrive

Maybe Prince Charming is at school.

Digging out

Maggie checking out her new driver

Maggie and I are both adjusting nicely to her being back in school.

She is seeing her friends, meeting her new bus driver, getting to know her new teacher and a new aide in the classroom and learning lots of things. In fact, she informed me last night that the Quail is the State Bird of California, a fact of which I was previously unaware.

I am getting back in to the schedule that I seem to need to function. It took me a lot of years to admit that because I like to think of myself as someone who goes with the flow;  but the truth is I like a schedule, especially when it comes to Maggie. It makes everything else easier. I spent the past few days digging out from underneath the piles of paper and work that has accumulated during the past few weeks when I didn't have any time to get things done. Bills have been paid, the dog has been to the vet, the men came to change the windows etc etc.  I did get all the legal work I have to do into one organized pile, but I left Maggie within reach and she decided they would be better on the floor. And she thought that was hilarious! She is very helpful.

This afternoon after Maggie arrived home, I helped the nurse get her situated and we did the procedures together. At the same time I was trying to locate the property tax bill and finish my malpractice insurance renewal. Done and almost done. I had to stop because I had to get to the bank before it closed. Perhaps order will be restored next week.

I ran out of the house on my thrice weekly run around the neighborhood, the bank, the cleaners, the pharmacy, the supermarket etc etc. The stuff has been sitting at the cleaners for weeks.  As I was leaving the house, the nurse handed me an empty bottle of one of Maggie's prescription meds.

I brought it with me because the pharmacy was one of my stops. Most of Maggie's meds are automatically renewed and with luck, the refill would be waiting for me when I got there. As I waited for the man in front of me to finish at the window, the clerk noticed me with the empty bottle and laughed. She said I hope you got a cart.I didn't really get the joke until it was my turn. Oh yes, that med was ready and so were several others. I definitely needed the cart.

We are stocked up now, but there will be more. There is always more. 

 I will be digging out for a while yet. In fact I can only hope it will be done before Christmas vacation 

First Day of School

SING IT WITH ME!
For this who can't see the video below click here https://m.youtube.com/watch?v=4DComGO8JYo

Grumpy

I know I may catch some flack for this, but I'm going to say it anyway.

I do not believe that the four young adults who purchased a bicycle at Target, rode it out of the store and did circles around their small suv, got in and rearranged the seats so the new bike would fit, made sure everyone was watching their antics, then climbed in - two of them sprawled in the back with the bike were AT ALL disabled and they should not have been parked in that wheelchair accessible spot. And we did NOT enjoy waiting while you entertained yourself for an extra 10 minutes either. If there had been a cop in the vicinity, I would have flagged him down.

Oh my aching back.

My back hurts.

Not in the laid out, "Oh my God, I need Valium right now!" way. I've been there and that is no fun at all. This is more of an "Oh my God I am a thousand years old and really really tired" way.  It's the nagging backache up one sometimes has in the morning, but it sticks round all day long. I am so worn out from all the lifting of Maggie  and maneuvering of her wheelchair that my body is on strike.

I have spent the past several weeks living my life in two hour segments. How much can I get done before I have to help the nurse lift Maggie for a procedure or before the nurse goes home? It is exhausting and very difficult to get anything accomplished besides simple errands.

On Wednesday afternoon I had 30 minutes to go to the bank and Safeway before I had to be home to help Maggie. As I sat in the bank waiting for the woman to copy some papers, I was thinking about how much more I needed to get done in a short amount of time and how much my back hurt. It was 4PM and I'm sure I looked exhausted.The bank manager decided to strike up a conversation with me, saying "are you done for the day?" I just looked at him and gave him a thin smile and said, "I am never done for the day."

The good news is that there is a cure for this particular ailment. it's called THE BEGINNING OF THE SCHOOL YEAR and its only 72 hours away. I have to keep Maggie entertained for the next three days and then she goes back to school. That's at least six lifts and four loading/unloading of the wheelchair onto a vehicle each day that will be done by someone other than me. My vertebrae and the connecting tissue are all looking forward to that.

The last few days will be tough, though, because Steve is fishing in Canada and Tim is house/cat sitting in Marin. That means I can't ask them to help with any lifting. The nurse will be here 8 hours a day and then again overnight, so I really have only 24 of the 72 hours that fall to me. That means I am down to the final 20 or so lifts. Not that I'm counting or anything.

Funny, I used to dread the end of summer.

How times change when we reach 1000 years old.

Five years

I started this blog in August 2008. That means you have been following our life with Maggie's for five years. Thank you for that.

When I realized I hit the five year mark I started going back through the blog. I see dozens (or hundreds) of pictures of a little girl smiling or laughing from her wheelchair. Maggie's shining personality makes this life one of wonder. Really, she makes it all look so easy.

Of course it is not easy and there's plenty of that too. I started writing this blog as a release of my fears. At the time our home nursing was in peril and I was panicking at the thought that Maggie would have to be placed outside our home. Maggie was very unstable in those days and I doubted then (and now) if she could survive without the attention she gets here. I started sharing stories that I thought we would no longer get to experience because she wouldn't be able to live with us.

That didn't happen. The Regional Center vendorized me and I have been taking care of staffing and paying the nurses ever since and just get reimbursed by the State. It's been a ton of work, but Maggie has had very consistent care. Her erratic health finally stabilized and, though maintaining that is a ton of work, all is well in Maggie World.

Though the original reason changed, I continued to write the blog. I loved sharing Maggie's stories and found that many people enjoyed reading about them. Our "normal" is anything but and people are interested. I like to think that a few attitudes about the disabled have been altered because of Maggie.

I don't have stories every day anymore, which is a good thing. Many of the stories were of close calls and emergencies and hospital stays. Those are happily on the back burner now (knocks wood); and the backlog of stories from Maggie's early days are well chronicled now. I find myself writing something and then realizing I've told it before. No need to broadcast my addled brain anymore than necessary. We are sticking to fresh and new stories.

The stories will continue as long as Maggie and her life continues to inspire, and I don't see that ending anytime soon. For now Maggie and I are off to attack another day. Perhaps we will tell you about it tomorrow.

Thank you for you interest in our World.

Mini adventures

One more full week until school starts! Both Maggie and I are ready for that because we both need the structure that the school year brings. To be honest, I need it more than Maggie does. I have had a very difficult time getting anything accomplished in the past month because I don't have my required stretches of uninterrupted time.

I spend a lot more time caring for and entertaining Maggie, both of which can be quite exhausting. To make matters worse, I get a lot less sleep. I can never sneak off to bed early because there is no nurse here in the evening. They come in the morning on the days I work and in the early afternoon on the days I don't. That leaves anywhere from 3 to 6 hours in the evening for me and Maggie to further bond.  I have deal with Maggie's needs, suctioning, feeding etc until the night nurse arrives. Maggie absolutely refuses to stay in her bed even with me in the room if Dad is in the front room.(or visa versa) Often all three of us Maggie, Steve and I, are sound asleep in various chairs in the front room when the night nurse gets there. By the time I give her report and get upstairs into bed I am wide awake from the interruption. Oh well, 10 more days. We can make it.

We are trying to continue our adventures though they are limited to a few days a week now. It's just too much to try to do more than that. Two days a week is plenty for her and more than plenty for me. We are limited to short jaunts because of Maggie's constant needs but we do live in a tourist mecca, so there is no shortage of things to do.

This week we went right into the belly of the beast and headed for Union Square to go shopping. We didn't buy anything - we almost ever do - but it is fun for Maggie to be part of the action. We went through several floors of Macys and other stores and then went over to watch the cable cars go by. Maggie thought those were hilarious.

 Thursday our friend Anne Marie was visiting (of the prom dress fame!) We headed to the Asian Art museum in Civic Center. I searched for an accessible parking spot for a while, but finally gave up and went underground to the Civic Center Garage. We went down two levels to find parking, unloaded Maggie, attached her pole and her dynavox and hooked up the switches. We put her shoes back on (she kicks them off constantly) and made out way to the elevator. There for the first tie we saw the sign that read "Elevators Closed. Please use stairs. Sorry for the inconvenience."

It took a minute to compute even though an overly helpful man was offering to help with the stairs. (absolutely impossible to carry Maggie and her wheelchair full of equipment up two flights of stairs. It's well over 200 lbs) I declined his kind offer and his request/demand for $5. We drove up one  level to ask for instructions on what to do.

I told the guy at the kiosk that I had a wheelchair and he said gruffly, well there's plenty of handicapped parking. Right, say I, but how do I get her out of the lot with the elevators out of order. "Take the stairs like everyone else." Really? again, we have a wheelchair. Why don't we just walk up the car ramp "No ma'am pedestrians are not allowed on the ramp." well dude, it's either the elevator or the ramp so you are just going to have to let us. (note this whole thing took at least 20 minutes for which I had to PAY) He relented.



I pushed her up the hill to the street level, but of course there was no cut out for the wheelchair and getting her onto the very high curb wasn't going to happen. We had to walk in traffic behind a line of parked cars to reach the corner where we could get back on the sidewalk.  I was exhausted by the time we reached the museum, which is visible behind us in the picture above.

 The girls enjoyed themselves and the museum was lovely and soothing and almost made it all worthwhile.

Almost.

Throughout the visit I was worrying about getting her back DOWN the hill. Up is not nearly as bad as down. Down is scary.  We made it without incident, though.

It really is too bad we only get to do these things twice a week.

Shoeless Joe

 "I felt bad because I had no shoes until I met a man with no feet.*"

This is one of my favorite sayings. It's sums up my attitude toward life pretty well.

 Let's face it, we are shoeless here.  We have a tough assignment in life keeping Maggie happy and healthy, but we have the ability, the support and the desire to pull it off. Others have it so much harder that we have to stop sometimes and be thankful for the soft sand under our bare feet.

It's all a question of perspective. If I can find a positive way you look at things, it becomes so much easier to handle.Take my career for example. For a couple of years I really mourned that loss. Then Maggie's needs required more advocacy.  Perhaps instead of losing my career as an attorney I was supposed to acquire the skills I need to help Maggie (and others) live the best life they can. Whether true or not, it is certainly more comforting to consider there was some method to the madness.

My greatest lesson in perspective has come from working at the hospital. Every day I see parents dealing with as much or more than I do with additional complicating factors. Some are far from home, some don't speak English, some are losing their children. Most are walking their paths with grace, thankful their situation isn't as bad as that of someone else. As I walk home after working, I find myself thankful that we live so close to a major medical center and thankful that I have the tools to navigate the complicated systems we find ourselves part of.

Our life is not a bed of roses, certainly, but it is not all thorns either. We have found a place in our shoeless life that works for all of us. Yesterday I was thinking about all of this as I put Maggie in her chair. She gave me a huge grin and all was right with the world.

My moment of philosophical stasis was quickly interrupted, though. As I pulled the shoulder harness over the top of the chair to secure Maggie, I knocked the pole off the back of her chair. The pole, which weighs at least ten pounds, is the one used to hold the dynavox in place on the front of her chair.
It fell straight down onto my big toe. I cannot tell you how much that hurt. I screeched and probably let out a string of expletives. Steve came running in from the front room to see what had happened.

Though I snapped at him choosing to lecture me at that moment,  the irony of his comment wasn't lost on me. He looked at the bruise forming on my toe and said,
 "Maybe you should wear shoes."

Maybe I should.  Life would be easier.



*author unknown but according to answers.com it is attributed to poetry from the Gulistan of Sa'di published in 1259