Accesible Rhododendrons

I decided to take the dog for a walk in Golden Gate Park before Maggie gets home from school. Once she is here time just slips away. Between the rain and the painters, it has been difficult to find any time before Maggie gets home; but I cannot let another day go by without getting him out and about. The painters finished the touch up stuff this morning and the sun is shining.


We wandered through Rhododendron Dell. If I was asked what flower makes me think of San Francisco, I would have to say Rhododendrons. My  mother has a huge bush in front of her house and many many other houses do as well. Not ours. We've tried, but we kill them over and over. It's a good thing, then, that we live so close to Rhododendron Dell. 

This part of the park has been undergoing renovation for months and months, but today we found the gate opened and in we went. There have been back ways to access it during construction, but I rarely did. Ten years ago and past this Dell was a spectacular place filled with rhododendron bushes. There were solid flowers of all colors for several acres. The trees and shrubs aged. When a huge storm hit several years ago a lot of them were wiped out, along with many trees that shaded the whole area. There are still a lot of Rhodos in there, but not like before. The workers have done a ton of work to allow it to return to its previous splendor. It will be fun watching to come back over the next few years; but even without the wall-to-wall flowers of yesteryear, it is still lovely back in there.

I was very happy to see how much work they did to make the whole area accessible to wheelchairs, too. Before it was unpaved paths, that worked all right when it was sunny and dry, but if it rained at all you could forget that whole area. Now it is not only paved but it is clearly marked with signs for wheelchairs including the degree of slope on the various paths. There is nothing worse than heading down a path or into an area and finding out it is a dead end for wheel chairs. Steep up or downgrades can effectively be a dead end so that information will be helpful to many. I do not really know what at 18% slope is, but I would figure it out pretty fast if it were too steep. Since there are loops to this area, you can easily find an alternate accessible path. I have never seen that information before and I think it is thoughtful and thorough to include it.

Not everyone will notice the accessibility and extra effort because it does not affect them and it blends in perfectly. Since I am always complaining about lack of accessibility, I thought it only fair to tip my hat when I see something working.

Mystery Date

This is the email Maggie just sent to her brothers

Hello brothers,

Would either or both of you consider accompanying me to my prom on May 21? I will probably only stay about an hour and you guys can be off doing your own thing. If you don't help me out I will have to go with Mom (gah!), Dad (please!) or Nurse Lucy. Mom said I can't go unless someone who knows how to suction me comes along. You both know how and I've seen you two clean up nice, so I thought I would ask. Most girls wouldn't be caught dead asking their brother(s) to the prom, but as you know,  I am not most girls. I have several boyfriends but they don't drive or use the suction machine. You don't have to get me a corsage, because even if I'm not allergic to it, I will rip every petal off in about 30 seconds.

xoxox

Your sister Maggie

Monkey Monday

Monday.

Time to get back into the swing of things. The best way to to that is to have a strong cup of joe from my new Monkey cup. It's amazing -- I drink coffee and immediatlely start swinging from the scaffolding.

This weekend was great. Any weekend that starts out with a gift of a monkey mug can only be great. My sister Mary gave it to me because 1) we've had a rough go the past few weeks/months/years and 2) I love monkeys and chimps. You have to love the handle.

On Saturday we took Maggie to Golden Gate Park with Aunt Mary and made another visit to the Academy of Sciences. Sunday we went for a walk at Crissy Field. The weather was INCREDIBLE. There were a million people there and everyone had a smile on their face. Maggie pointed out the bridge for confused tourists (uhhh - it's RIGHT THERE!)  and posed in front of Alcatraz with Dad.

Saturday was #1 son's 22nd birthday. That is unbelievable to me. I know he had fun and I'm glad, but I miss the days of birthday parties with a bunch of little boys running an obstacle course or heading to the "Big Park" (the playgournd in Golden Gate park). Now the parties are different and I'm no longer invited. Ahh well. I'll just drink out of my Monkey cup and all will be well.

This week will see the completion of the house painting. It's 95% complete now and it looks fantastic! It has given us a renewed interest in things. I will post pics when the scaffolding is down.

Day Tripping

I went on a field trip with Maggie's class today. We had a great time. Most of the school is taking the California Standardized tests this week, so school is pretty dead for the non standard kids. Ms. Taylor, the teacher, planned to take them on public transportation to The California Academy of Sciences in Golden Gate Park. As luck would have it, that is only about 6 blocks form here; hence Maggie slept in, skipped the bus trip and we just walked over to meet the other students and the adults assigned to the class at 9:30AM.


The Academy of Sciences is an amazing place (www.calacademy.org),For a few years the place was closed for remodeling/rebuilding. We went through withdrawals while we anxiously awaited the opening of the new one. Now it's bigger and better than ever; there's an aquarium, planetarium, pendulum, rainforest, alligators, snakes, and stuffed wildlife or all types. Right now it's "extreme mammal" month.( I'm not sure if those are mammals who ride mountain bikes or what exactly.) Because we live so close, we always buy a membership. .

With my membership I am allowed to bring in a couple of guests; another person had a membership too, so almost no one had to pay today. That worked out well.

The displays are amazing floor to ceiling tanks. The penguins were especially rambunctious and kept coming right up to the window where Maggie and Juan were standing. There were lots of other kids there too, but three or four penguins were hanging around only these two. Check out the picture. It looks like the kids can touch the penquin, but there's about five inches of glass between them. We were joking that the penguins were interested in the wheelchair and Maggie's communication device because it was something different and interesting for them.

The kids were split into teams and assigned a list of things to find. We knocked off the albino alligator, whale skeleton, and penguins and pendulum in nothing flat. The butterflies required a trek through the rain forest - and you're not allowed to leave until you're checked for hitchhiking butterflies. The rest of the items, seahorses, the tidepool and the anaconda were down in the aquarium.

Maggie's favorite thing were the two interactive simulations of being squeezed by an anaconda and being shocked by an electric eel.

Maybe Maggie is the extreme mammal they're featuring.

Rain Rain Go Away

I like rain. Really I do. California has been on the fringe of a drought for many years – never quite enough of a snowpack to give unlimited access to water. All this precipitation - rain here and snow in the mountains - means a relief from the drought and perhaps a little breathing room with the reservoir levels. The rain, therefore, is necessary and good.

Except for those people, like us, who are painting their house. The painters cannot work in the rain and the house has to dry for a day or so after it rains before they work again.

In the 22 days since the scaffolding went up, I think the painters have been here five days. They scraped and prepped and it rained. They came back several days later and put on some hideous primer (BRIGHT turquoise) and the next day it rained. The primer stayed on for a long time and neighbors were asking politely, but with concern, if this was the color we were going with. I assured them it was not. Once they heard that the relief was palpable. My friend and neighbor Debbie said she was glad, “the color was rather…Caribbean”; that made me laugh.

On the days they are here, the guys are very friendly and nice. They see Maggie’s bus coming and they scamper down the scaffolding to move ladders and drop cloths so she can get in. She waves happily at them and laughs when they are on the scaffolding. We watched three of them climb up together the other day. For some reason they go up with their back to the scaffolding, facing out onto the street. They obviously have been doing this for a long time because they can do it really fast. They look like monkeys and it is very entertaining

After a couple more days of work interrupted by rain and dry out days, the house is starting to take shape and it will look fabulous, but it HAS TO STOP RAINING. They came this morning. YAY! The skies are threatening again and rain would ruin any work they started. Nelson, the foreman, asked me if it was going to rain, and I said it is not supposed to, but it sure feels like it. I moved the nurse’s car out of the driveway and they were going to concentrate on the back of the house. Steve asked me if I was sure it was not going to rain. I just shrugged and said, “You know, I’m not God.” (He was shocked at this news.) After about ten minutes the painters left saying they were leaving to go scrape another house. It’s the right decision, but ARRRGH!

Soon the famed California sun will come out to stay. The best weather in San Francisco is generally in May and the first part of June and then again in September and October. May 1 is just around the corner and I hope to have a freshly – and completely - painted house to welcome the sunshine.

I have to go put the nurse's car back in the driveway.

Going down?

 Everything Maggie needs she needs for her day is loaded on the back of her wheelchair. Loading it is an art form unto itself. In order to push the chair comfortably, or even to fit in the elevator, things have to be placed in the proper order. Today I was not attentive enough and we had trouble getting the elevator door closed. I need to go to grocery bagging school to improve my technique.

The back of Maggie’s wheelchair is a crowded place. Two bags are always on there. One has the emergency resuscitation bag, which has to be kept close at hand. (There is another hanging off her bed). Fortunately, we have never had to use that, but it will always be there because as soon as I remove it, she will get into trouble. The second small bag contains a spare trach and all the necessary supplies should we need an emergency trach change. That one we have used several times. You just never know when she will pull out her trach or break the ties, so we are at the ready on that one.

The next three things are big. There is the communication device, which is a bit larger and heavier than a laptop. That goes in the briefcase like bag. Every morning we have to fill the portable oxygen tank and that goes on next. The strap on that tank is a little too short and it sometimes sticks out at a strange angle. If it’s don’t right, the O2 tank will fit in the space just above the briefcase bag which has a longer strap and hangs down lower. Finally, the suction machine goes on last because we need that every two minutes. It is easily accessible because it is open to the person pushing the chair and doing the suctioning. Fortunately, there are anti tip wheels because without them, the weight of her supplies would pull the chair over backwards.

The force was not with me this morning and I was struggling to get the elevator door closed with all the equipment sticking out at various angles. You can swee in the picture (from a differen day) how tight the space is in the elevator. I get in first and pulled Maggie in behind me. By standing on my tiptoes and twisting my body just so, the door clicked shut. I held the down button for the 90-second ride down feeling as if I was in a game of twister.

As we were slowly descending, I looked up the open shaft to the rapidly darkening sky and said, 'you know what is going to happen, don’t you Maggie. There will be a downpour and this elevator will stop and I will be stuck in this position forever." She thought that was hilarious. I did not.

I did not have my phone with me and Steve was upstairs in the front of the house. He would never hear us yelling. In all likelihood, the neighbors would hear, but they would not be able to see us in the shaft and presume everything was all right.

For once, the worst did NOT happen. We made it to the bottom. The downpour started the second Maggie loaded onto the bus. I was soaked in about 30 seconds. She was looking out the window of the bus laughing at my dripping jacket and hair. I’m glad she had SOME entertainment before her school day.

Revelations

We are trying to find our rhythm here. After the illness and passing of Steve's mom and the unbelievable whirlwind of activity preparing for and attending her funeral services, everyone is knocked off their game a bit. It was exhausting physically and emotionally, but it was lovely.

All the activity revealed yet another flaw in our system. It was frustrating that I couldn't be fully present for Steve and the rest of the family. I kept leaving things before everyone else because I had to get home to Maggie or take Maggie home. The nursing situation works fine as long as I stay home to assist and/or fill in, but it does not work for any change in the (very dull) routine.

  I need to find someone who can occasionally drive Maggie and her nurse to things so that I can fully take part in other activities. The problems are not only the additional expense, but the logistics. It is so difficult to coordinate and orchestrate all the things Maggie needs that the thought of adding another layer is too much to consider.

We need to figure out a way to get more breaks. In Maggie's 16 years and one month on earth, Steve and I have been away alone together a total of 4 nights. When I get the energy we will have to do another night, but it's 18 hours of work for 24 hours away and the hassle factor is daunting.  Taking Maggie away with us is not a realistic option at all. She cannot fly anywhere because of the amount of equipment we would need to take. Even if we take a road trip we would either have to pay for a nurse to accompany us or I would have to be "on" round the clock. Neither option is doable and frankly, I'd rather stay home.

Caring for Maggie is becoming increasingly difficult and getting any breaks from the routine or time away for ourselves is nearly impossible. When I cannot orchestrate being fully present for my mother in law's funeral, you can only imagine how difficult it is to steal any time away for fun or recreation. This realizatiion may have been a gift from my mother in law to show us that we need to make changes so that we can live our life and tend to other facts of our existence as well.

Now if I could only figure out how to do that, or find a pot of gold, we would be sitting in tall cotton.