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.

Summertime and the living is....

...regimented.

Summer is my least favorite season.

This is not historically true. When my kids were in school it was a break in the routine and we always managed a week or so away with various shorter trips thrown in for good measure. When I was college age, it was time for ROAD TRIPS! We would pick up and go at the last minute because two of us had the same days off. Didn't matter where we went, we just went. When I was a kid summer was SUMMER!! No school! no schedules!

Now with Maggie's ever increasing nursing needs, a week away is impossible and short trips are unwieldy, there are never two days off in a row. Ever. It's Oh NO, it's summer! no school and no schedule. What in the world are we gong to do to fill the time?

This reality hit home Sunday. Eddie and Grace were in Monterey with Grace's parents and Tim told us Saturday he wanted us to head down there (The boys haven't seen each other since before Christmas.)  Monterey is about 2.5 hours from here so it's doable as a day trip. Long day, but doable.

Not doable for Maggie, though. It's too much. Too much for her. Too much for me. There was a nurse scheduled to work for 8 hours, but that wasn't enough to get there and back and have any kind of visit. Steve offered to stay with Maggie so I could go, and if it were the school year I would have jumped at that. But not in the summer. I would be wrecked for Monday and I have to be ON for Miss Maggie. It was easier to just stay home.

Steve and Tim went to Monterey.
Maggie and I hit the museum.
Again.

Sunday night my sister Joan called saying she unexpectedly had Thursday and Friday off and was making an impromptu trip to Tahoe. Lake Tahoe is Summer to me. We spent every summer there when I was a kid and my parents had a house up there that we used regularly until they sold it in 1999. My sister Ellen and my brother Pat have been posting fantastic pictures of hikes they are taking together and separately in the Tahoe area. I have been drooling over those pictures.

Joan asked, Did I want to join her? A road trip? To TAHOE? Why yes! Yes I do! With every fiber of my being. The San Francisco fog is particularly thick this year and the thought of sun on my face is almost intoxicating. But...I can't. There are 8 hours in each day that don't have nursing coverage and Steve is working and Tim can't do the nursing procedures. Besides, Tim started his new job on Monday.

 So I had to pass.

I don't mean to whine, really I don't. I feel very lucky that we have so much nursing support because that's the only way Maggie can stay at home. It's the irony that summer, when most people get to enjoy a little freedom, I am the most stuck.

And what about Maggie? I worry about Maggie getting too bored. We do the same things all the time. We listen to her music. We go to the mall. We go to the museum. We go to Safeway. we go to the park. Today we are going to Best Buy AND Safeway, just to keep things interesting. Maggie needs to break up the routine as well. Camp was a great diversion, but that's done now. Of course Maggie has the uncanny ability to revel in the present. She is delighted to be wherever she is.
And she's with me.

Today is July 30. School starts August 19. It will be the Maggie and Mom show for the next 21 days.

Let us know if you need anything at the mall.

Dog Days Ahead

The Dog Days of Summer suggest relaxing afternoons in the hot sun. Those dogs do not live in San Francisco and care for a disabled teenager. Here it is cold and foggy and we will do anything but laze. 

Today is the last day of summer school. From 1:15ish today until 7:30ish AM on August 19 I need to keep Maggie entertained during the hours she is normally in school. That is not easy. I'm tired just thinking about it.

Maggie needs a lot of stimulation and entertainment to keep her satisfied. She is a bright interesting young woman who needs intellectual, social and emotional input but because of her physical limitations, she cannot do anything for herself. That means it's up to me (or someone) to provide that input.

Fortunately, Maggie is so engaged that she enjoys every outing, so it's not terribly difficult to find things to do, it's the actual DOING of them that is hard. It's mentally and emotionally stimulating for her and physically exhausting for me. It means that much more lifting and manipulating wheelchairs and just being "on." When you hang with Maggie you have to be "at the ready" every minute to jump in with the suction machine or a feeding or other interventions. There is no down time whatsoever.

Things will be complicated a bit more this summer because of my schedule. I have always worked from home and still do, but now I have something more.  For the past several months I've been working outside the house three mornings a week while Maggie is in school. I work as a Parent Liaison at UCSF Benioff Children's hospital, helping parents of hospitalized kids navigate the hospital stay getting information and (non-medical) needs to the people who can help. I like doing it and plan to continue during the next few weeks that Maggie is out of school, though I'm cutting the hours back a little bit.  That will take more juggling and will give me even less free time, but sometimes that's just the way it is.

Next week Maggie has Girls Rock! camp every morning. She does love that. I will take her in the mornings and stay on the days I'm not working. She will have to have the nurse with her on the other days.  But I am still her transportation. I will pick her up when the camp is over and take her home.

The nurses are here with Maggie, so she will be safe and well cared for, but she will not be entertained when I'm at work. A couple of the nurses will take her for walks if time permits, but others insist she stay in. I yield to their professional assessment/opinion while they're here. But once they're gone, it's up to me again. I will just have to find things for us to do in the early evenings for a few weeks. When Steve is home we can do things together, but most outings will be before he gets home in the evening. Maggie is already looking forward to Summer evenings at the Mall!!

For the first few days entertaining Maggie will be a cinch. Her brother Tim returns today after 6+ months in Chicago. Maggie is beyond excited to see him again and just having him in the house will entertain her to no end. He can take her for the occasional outing as well and that will be so much cooler than hanging with mom.
Of course he will find a new job and have his own schedule, but initially that will be a big help. I'm sure he will do some of the lifting for me as well.

So I am holding my breath and jumping into the dog days of summer. We will hit all the sights and sounds of San Francisco over the next few weeks.

Stay tuned for a local travel log.

  

Mama Bear, with authority

Camp Mom starts today. Maggie is finished with school and we have two weeks until Summer school starts. That means I am chief cook and bottle washer for the next two weeks. We will have an outing every day, but I have no idea what those will be. Maggie is about the easiest person in the world to entertain, she takes absolute joy in the moment and is perfectly happy with an outing to the mall.  The mall is the easiest, but it drives me to drink so we have to mix it up a bit.

Generally we just have to fill the mornings and the nurse comes around 1 or so. That way I can split up the hours. Today the nurse is not coming until 3:00PM because we need to cover the hours this evening as I have tickets to the Giants game. (Seats are non accessible, so Maggie is out for this one.)

We do, however have to be home at 1:30 as the inspector from the court is coming. I filed papers to be Maggie's conservator and the court sends someone out to determine if Maggie really needs to be conserved. The hearing is in July and the inspector has to file a report for the judge before that time.  It's a good thing that they investigate. Once someone is conserved they really lose a lot of rights. They cannot run their own affairs, handle their own money or make their own decisions. Care must be taken that there are no shenanigans going on.

In Maggie's case it is really a formality. Obviously, one who cannot care for her own physical needs must have someone looking after and advocating for her. It is also pretty clear I'm not trying to take over her life to control her vast wealth. (She has about $80.)   It is for her protection and ours. Now that she's 18, she is an adult. Without a conservatorship, people don't have to check in with me on decisions involving her.  In a worst case scenario, doctors could prevent me from making decisions or even being informed about her health status. I'm not too worried about that but it would be stupid not to be prepared.

 I will have to report to the court annually to show what we did with her money, report where she is living etc. That's totally worth it to be able to shut people up who attempt to manipulate her, or us,  in any way. If the conservatorship is granted, I will have the courts permission to continue to act as Mama Bear, without the hibernation.  I think I know how to do that job.

Off to figure out some entertainment for the morning. Too bad she's not into drinking coffee and chatting. That would be my activity of choice.

Warning: Wild Weekend ahead!!

Lots going on around here this weekend. There are dinners and picnics and graduations and Bay to Breakers. Fortunately the sun came out for the first time in days, so perhaps we can enjoy all - or at least some of - the activities without the miserable gray fog we've had in recent days. I do wish these things were spread out over different weekends so we could enjoy everything, but it's a busy time of year and there are lots of things going on.

Graduation time is busy even when there are no graduates in your house. This weekend alone there are three graduation events, one nephew graduating from college, one from high school and our good friend Lexi from law school. We have to miss the one for Jeff, my nephew who is graduating from high school. We just cannot be in three places at once. I'm certain he will party heartily without us and know we wish him well.

It is very difficult to organize Maggie's care when there are busy weekends with a lot of activities. She still needs all of her things right  on schedule, even when the schedule is crazy. Generally we divide and conquer, Steve hitting one thing and me another, but that wouldn't work this weekend. I had to beg on Jeff's party because it's in Santa Rose and I just cannot get there with Maggie unless I have Steve or someone to help me.  There is a dinner tonight for Matt, my nephew finishing USF and we will leave Maggie home with the nurse. Tomorrow there is Matt's graduation ceremony and a picnic and then Lexi's graduation ceremony and a dinner following. I don't think we are even expected at  Lexi's ceremony and I had to beg off from Matt's ceremony because I can't get a nurse for that and get one for the dinner. And taking Maggie to a lengthy and crowded graduation ceremony is not my idea of fun. Nor is it hers.

Fortunately the picnic is within walking distance from us in Golden Gate Park. Maggie and I will walk over there and join the fun so she can see the cousins, aunts and uncles and Matt's friends who will be there. Before that, though I have to take her with me downtown to get some law books I need. I plan to have Tim walk around with her while I'm doing my legal thing and then we will be back here before the picnic even starts.

Sunday is Bay to Breakers and we always walk into the park to watch the throngs of runners go by. The elite runners do the 7.6 mile race in about 25 minutes. The hoards of other runners take quite a bit longer. We are guaranteed to see lots of costumes which are very entertaining and several naked bodies, which are not. (I'll spare you the pictures of the naked runners)

It's not like things let up after this weekend either.  Memorial Day weekend is the 75th anniversary of the Golden Gate Bridge and we will be hitting a few of those events, and then more graduations the next weekend. and the weekend after that. Maggie's last day of school is next Friday. I have to ramp up Camp Mom again too.

I need a nap.

And in case I forget, I have to congratulate all the graduates: Matt and Jeff and Lexi this weekend, and Jack and Nick whose celebrations are in the next few weeks.

Girls Rock!

My role as camp director is on hiatus once again. Maggie is in Girls Rock Camp every morning this week.  It is like an empowerment camp for girls middle school through high school. These particular girls are all clients of California Childrens' Services, though, which means they have some physical issues that require therapy. Often their differences set them apart from their peers and limit normal social interaction. Hence the "Empowerment" is more like catch up. They do crafts, learn about nutrition, their bodies etc. It is a safe place to ask questions they may not be able to ask in the normal social setting. It's not really appropriate for Maggie  but the social opportunity is great.   Of course Maggie  can't go alone, she has to have someone with her. That someone is me. Instead of Camp director, I am Maggies' aide. We go to camp together.

Don't be jealous.

Maggie didn't last long yesterday. She was grumpy and the activities were particularly inappropriate for her. She is the only one there in a wheelchair, and surprisingly there is very little accommodation  to include her. She started to cry about two hours in and we left. Hopefully today will be better.

The crying is not like Maggie at all, but we are all still exhausted from last week. That was a lot of change for Maggie to handle. She was a trooper, but I think it just completely wore her out. Couple that with my sleep deprivation hangover and you begin to see how miraculous it is that anything is getting accomplished this week.

The sleep deprivation hangover is pretty much gone now. Yesterday was the worst - it always hits me harder on day 2.. I stayed up all night Saturday because the nurse cancelled. I slept a bit Sunday morning, so I felt "OK" but just clueless about the time. The shortage catches up with me the NEXT day which was yesterday. It's not a tiredness but more of a spaciness. For example, when Maggie and I left camp we went to the pharmacy to pick up some meds. I sat at a stop sign (not a traffic light) for about 3 minutes waiting for it to give me "go" sign. A car going the other way stopped and then proceeded giving me a strange look. My first thought: what's your problem, buddy? Then it hit me. Oh. I guess I can go. Best not to drive in those situations.

Today is a new day and we have another night's sleep under our belts. We might just be the most energetic  girls at Camp today. I have caffeine to help get me there. Maggie has to rely on her sparkling personality.

 And her peppy aide.

Checking in to end the week

Quiet week for blogposts. I am trying to take advantage of this time that Maggie is in school to get a lot of things done. School is out next Thursday and then it will the Maggie and Mom show for four weeks until school starts again. It will be very difficult to get anything done then so I'm donig my best now.

The time approaches for our great floor sanding and refinishing extravaganza and I have been getting rid of things left and right in anticipation of our need to completely empty the first floor of the house. My office is completely out of the dining room and in a dedicated room upstairs. There is a bed in my office in case everyone is home at once, but it has officially been changed from a bedroom to an office.

This change was necessary because I am trying to do a little more (paid)  legal work and want to be up and running by the time Maggie goes back to school in Mid august.. I cannot run a practice from the dining room with Maggie and the nurse right there. I need some space.  It's nice because the room is really a sun room and it is full of light. Good thing it's so bright. I have yet to decorate. In fact the only thing on the wall is the card my husband gave me for our anniversary a few years ago. I love this picture. It's hanging just above my computer and it makes me laugh every time I look at it.

Kind of explains a lot, doesn't it.

I think Miss Maggie is ready for summer school to be over. She has been falling asleep every day. She still loves going to school, but I don't think there is enough to entertain her and she's bored. Maybe it was just too many changes with a new site and a new teacher. She adores "Mr. Kyle" but she can't seem to stay awake. And she's not sick.

I have to start planning Mom Camp II for the next four weeks. The week we spend at Uncle Pat's house will be a something very different, but it will be hard on all of us. Caring for Maggie anywhere else will be tricky but it's a great option because he has a bedroom on the ground floor and we can get Maggie in and out easily. Also it's very near the zoo, so Maggie and I can get acquainted with the apes and giraffes. She also has Girls Rock camp the first week of August, but I really have to go with her to that. I can send her nurse, but I will probably do it myself to make sure she really gets int here and takes part in everything. We will take in the Picasso exhibit at the DeYoung Museum and I'm certain have a few trips to the mall, Maggies' favorite outing in the world.

Hope everyone has a great weekend. No holidays or fireworks this weekend. But we will make our own fun.

Camp Closed, Gone Fishin

Camp Mom is closed until July 15. Both Mom and Maggie are delighted.  Summer school starts today and Maggie was chomping at the bit to get back to her routine. yesterday she worked on telling me with her Dynavox saying, "Mom I go to school tomorrow. Bus please" Once she had those entire sentences formulated she "said" them 500 times. I think she was ready to go back. 

Of course  this will not be the routine Maggie is used to. Summer school is held at a different site (John O'Connell High school)  and there will be a different teacher and likely a few additional kids in her class. Resources are short and things get combined in the summer, but she will adapt.Nurse Janice is still assigned to Maggie and I believe a few of the paras (classroom aides) from Mission are assigned to her class, so there will be enough familiarity to keep Maggie happy. It might be Monday before she feels totally comfortable, but it is an adventure. 

Her day will be shorter and I have no idea what the program will entail, but I am not worried about it in the least.  I treat summer school more like summer camp. It's fun, it's something to do and she actually derives some educational benefit from it. That's perfect. I will pop in a few times over the course of the five weeks, but they have enough to figure out on the first day without me getting in the way. 

On our last adventure before summer school we were cruising around town and I decided to show Maggie where she would be going to summer school. John O'Connell high school is in a mixed use area with trendy lofts and warehouses along with small businesses and family homes. Maggie looked at the building but I don't think she understood that she would be going to school there. She has to experience it first hand before something like that would work. It's only a mile or so from Mission High and she laughed her head off as we drove by there. 

So, these are my first hours alone in 13 days. Maggie is not here. The nurses are not here. Steve left for work. The house is quiet. I do not hear Lady Gaga singing. Ahhhhh. My first few hours of alone time have been luxurious.  I have a million things to get done and projects that need attention, but for now I'm just taking a couple of hours off.  

Camp is out of session. And that is OK with me.

Camp Mom

And so Summer vacation begins. When I was a kid, there was nothing better than waking up on that first day of summer vacation. No more school. The days and weeks of summer stretched out luxuriously in front of you.

Now it's my least favorite week of the year. Summer still stretches out, but it doesn't feel luxurious anymore. The only time I have to myself is the time Maggie spends in school. Now I have to be on 24 hours a day. Maggie and I have fun together but it is exhausting to think about all the lifting and physical requirements ahead. It's never as bad as I imagine because we will find a rhythm, but the anticipation is less than delightful. We have 10 days until summer school begins and then a month after it ends.

In addition to the physical demands on me, summertime is hard on Maggie. School is Maggie's social and recreational center as well as her academic center. It's fine that everyone needs a break from the academic rigors of school, but there are zero social or recreational opportunities for Maggie when school is out.  That means old mom becomes social director and camp counselor for a few weeks.

On the plus side, though, Maggie is about the easiest person in the world to entertain. Yesterday we went looking for a new mattress. Every time Steve or I laid down on a mattress to try it out (which was frequent) Maggie laughed so hard she would have trouble breathing. The poor salesman didn't know how to react. We would laugh and jump up and suction her. That made her laugh too. 

So we will begin our summer today. We will go somewhere every morning. Might be the park, or the museum or shopping. It doesn't matter because Maggie will love it. If I get too worn out we can go back to the mattress store and lie down. That will keep her entertained and I can rest. 

If anyone has ideas for outings that we can do in a couple of hours, feel free to share.