Thursday brings a break in the storms but it will only last until this afternoon. Hopefully it will hold off until we get Maggie back from her doctor appointment this afternoon. She's not sick, it's maintenance. We have reached some sort of magical place of equilibrium in her health and I will do whatever it takes to keep her there. Think of it as a tune up. Today it's the GI doctor and I have to make an appointment with the pulmonologist and a few other specialists too.
Maggie's run of good health has me contemplating activities that I generally would never consider. For example, last night I went to an informational meeting at the Jewish Community Center about a Special Needs Family Camp that is sponsored by Jewish Learning Works. The camp is held for one weekend in May and it sounds fantastic, 48 hours of fun for both the kids and their families. The kids with special needs have so much support and activities, and there's something for kids of every ability. There are activities for the siblings and parents together with and apart from each other and from their special needs sibling/child. Parents find support in one another and can relax and enjoy their family time without anyone judging the peccadilloes of these special needs children. My friend Jennifer goes with her teenage daughter and loves it. In fact I learned about the Camp from a video she posted of her daughter Rae telling jokes at the talent show at Camp.
It is, of course, designed for Jewish families with a ton of Shabbat and other services built in. We are not Jewish, but I have always loved Judaism and its services and traditions. In fact my friend Melissa often asks me "Are you sure you're not Jewish?" I already knew from Jennifer that gentiles are certainly welcome and I clarified and felt that last night. I told them people at the meeting last night that my daughter Mary Margaret McDonald has a very ethnic name, but it's not the same ethnicity as theirs.
As with everything, this camp is not really designed to meet Maggie's needs. They have "shmira" where the kids are basically babysat in the cabins at night so the parents can get together for wine and community. A big part of the effectiveness of this camp is meeting other families, and I would want to take part in that. But Maggie needs more than custodial care. There are other times that the kids are doing an activity while parents do another. In response to my question, they said you are never apart for more than 30 minutes at a time. I smiled and said I can't be away from her for more than a minute. There are plenty of staff for the kids, but Maggie needs a nurse or at least someone comfortable enough to suction her every 30 seconds. It's too much to ask that they have someone trained or comfortable enough to do that. I am welcome to bring someone along who can care for Maggie.
As I left the meeting, I was tempted to give it a try. There is just nothing recreational for Maggie. This could be fun and we can hang out with Jennifer and Rae. The people at the meeting were great and encouraging. Clearly Maggie would be welcome with open arms.
Then I came home and wondered how I would handle all the equipment. I would have to bring all her meds, the oxygen, the nebulizer, the suction etc etc.etc. In addition, I would have to be the nurse both nights and sleep would be fleeting. I don't want to bring a nurse with us because I want Maggie to be able to get in there and mix it up.
I have to think about it.
I wish having fun wasn't so difficult.
_______________
If you are interested in learning more about this camp go to www.jewishlearningworks.com. The camp director is Cheryl Cohen.
Thursday, November 29, 2012
Wednesday, November 28, 2012
Waiting for Godot
It's raining. Really raining. I actually wrapped Maggie in a giant plastic raincoat this morning because I was afraid we would be soaked going down to the bus in the elevator. Mercifully, the downpour stopped just in time to get her on the bus. Now it's started again, but I'm drinking coffee in the warm house and she is safely at school, so it's fine. The sound of the raindrops on the window is sort of comforting
Until you hear water hit somewhere away from the window and you can't figure out where. That is not comforting. I will find it eventually.
I am stuck in the house today and not simply because it's raining. Tim has my car all day. He sold his truck but needs to get to work, so he gets the money from the sale and I don't have a car. Interesting how that works out. It doesn't matter today, though because and I have to wait for the stove guy AGAIN. I believe this is the eighth scheduled visit regarding the purchase of our new stove on October 26. They didn't show up for all of them, mind you, but I've spent half of November waiting for these jokers.
1) Initially they delivered the stove and could not install it because there was an electrical outlet in the way. That one is on us. Our former stove was duel fuel and this one is not. We paid a contractor $100 to move the 220 electrical line and rescheduled the install.
2) They came out the next week and discovered that the opening was not wide enough for the new stove. (We had the granite installed after the old stove and they cut it to fit instead of making a standard cut. The guy can do it himself, but I had to pay $125. I complained that the guy had not mentioned it the week before - because Steve could have cut if for nothing. They knock $30 off the price and I said OK. Only problem is the guy cut too far and left a one inch slice/hole in my granite. I was not pleased. Steve even less so.
After damaging my granite, they took the old stove down, brought the new one up (16 stairs) and did the install. The guy then noted that the new stove was defective because it was leaking gas. He suggested they install it and I call sears to get someone out here to fix it. I said no. Take it away. I'm not keeping a defective stove and please bring my old stove back up here because I have to have SOMETHING (the stove top worked on the old one but the oven did not.) They tried to weasel out of it because of the steps, but I insisted.
They did not like me.
I was really torn up about that.
And so was my granite.
3) They came back the next week with the new stove and installed it fine, but did not fix the granite. In addition we noted that the drawer on the stove was hanging at an angle. That was not an install problem, I had to get Sears out here. Drawer needs repair and granite needs repair but stove works. Some progress.
4) Sears comes out and fixes the drawer. That works fine.
5) Installer sends someone out to do the granite repair. Nice enough guy. He is putting things together and I notice the stuff he intends to use is bright white. I said no. It has to match. He says, "don't worry, we will go over it with a marker." I just looked at him and said, "you know I do wipe down the counters every day and the marker will just wear off. It HAS TO MATCH." He leaves promising to call me back in an hour after heading to get the right stuff. He never calls back.
6) They arrange to come back Wednesday before Thanksgiving. I try to time my pies etc so the oven is not blasting hot when they get here. I needn't have worried. They never showed up.
7) They reschedule for Monday and the guy calls me saying he'll be here in an hour. I ask if he has matching stuff and he says it's clear. Sigh. I am ready to allow it, but call Steve who says absolutely not. We don't have to settle and he's right. Steve calls the owner and describes the exact fix he expects. They call off the guy en route to my house (though I had already waited most of the morning)
SO now it's number 8. But it's 10AM and I haven't heard a word form them yet. I don't want to get in the shower and miss them. I don't want to do anything. I just want this to be finished.
This stove better last me the rest of my life.
________________________________________
Update: one hour later. I called to see where the guy was and found out he can't do it today - AFTER I waited three hours for him to show. No one bothered to call me. He did come by and explained what he needs to do to fix it and he wasn't prepared today. Lovely. So reschedule #9 will be made at some point. I just texted the owner and said I want my $95 back or I will start charging him for waiting time which he cannot afford. My hourly rate is quite high.
Until you hear water hit somewhere away from the window and you can't figure out where. That is not comforting. I will find it eventually.
I am stuck in the house today and not simply because it's raining. Tim has my car all day. He sold his truck but needs to get to work, so he gets the money from the sale and I don't have a car. Interesting how that works out. It doesn't matter today, though because and I have to wait for the stove guy AGAIN. I believe this is the eighth scheduled visit regarding the purchase of our new stove on October 26. They didn't show up for all of them, mind you, but I've spent half of November waiting for these jokers.
1) Initially they delivered the stove and could not install it because there was an electrical outlet in the way. That one is on us. Our former stove was duel fuel and this one is not. We paid a contractor $100 to move the 220 electrical line and rescheduled the install.
2) They came out the next week and discovered that the opening was not wide enough for the new stove. (We had the granite installed after the old stove and they cut it to fit instead of making a standard cut. The guy can do it himself, but I had to pay $125. I complained that the guy had not mentioned it the week before - because Steve could have cut if for nothing. They knock $30 off the price and I said OK. Only problem is the guy cut too far and left a one inch slice/hole in my granite. I was not pleased. Steve even less so.
After damaging my granite, they took the old stove down, brought the new one up (16 stairs) and did the install. The guy then noted that the new stove was defective because it was leaking gas. He suggested they install it and I call sears to get someone out here to fix it. I said no. Take it away. I'm not keeping a defective stove and please bring my old stove back up here because I have to have SOMETHING (the stove top worked on the old one but the oven did not.) They tried to weasel out of it because of the steps, but I insisted.
They did not like me.
I was really torn up about that.
And so was my granite.
3) They came back the next week with the new stove and installed it fine, but did not fix the granite. In addition we noted that the drawer on the stove was hanging at an angle. That was not an install problem, I had to get Sears out here. Drawer needs repair and granite needs repair but stove works. Some progress.
4) Sears comes out and fixes the drawer. That works fine.
5) Installer sends someone out to do the granite repair. Nice enough guy. He is putting things together and I notice the stuff he intends to use is bright white. I said no. It has to match. He says, "don't worry, we will go over it with a marker." I just looked at him and said, "you know I do wipe down the counters every day and the marker will just wear off. It HAS TO MATCH." He leaves promising to call me back in an hour after heading to get the right stuff. He never calls back.
6) They arrange to come back Wednesday before Thanksgiving. I try to time my pies etc so the oven is not blasting hot when they get here. I needn't have worried. They never showed up.
7) They reschedule for Monday and the guy calls me saying he'll be here in an hour. I ask if he has matching stuff and he says it's clear. Sigh. I am ready to allow it, but call Steve who says absolutely not. We don't have to settle and he's right. Steve calls the owner and describes the exact fix he expects. They call off the guy en route to my house (though I had already waited most of the morning)
SO now it's number 8. But it's 10AM and I haven't heard a word form them yet. I don't want to get in the shower and miss them. I don't want to do anything. I just want this to be finished.
This stove better last me the rest of my life.
________________________________________
Update: one hour later. I called to see where the guy was and found out he can't do it today - AFTER I waited three hours for him to show. No one bothered to call me. He did come by and explained what he needs to do to fix it and he wasn't prepared today. Lovely. So reschedule #9 will be made at some point. I just texted the owner and said I want my $95 back or I will start charging him for waiting time which he cannot afford. My hourly rate is quite high.
Tuesday, November 27, 2012
Supply Side Economics
Yesterday I ordered some respiratory supplies for Maggie. The people at California Home Medical are very patient with me as I try to describe what I need. I'm sure they all have names and numbers but I describe them in my own way, i.e., "those bottles that screw onto the mist machine and that little tube adapter thing that allows me to connect the oxygen tubing to the mist." Sometimes it takes a while, but I always get what I need.
I only wish I had things where the nurse can get what they need. Maggie's room is full to bursting and we have so many supplies in the house that the overflow is stored in the basement. It is uncanny. The nurse always discovers that she needs something the moment I get undressed to go to bed or, failing that, the moment I drift off to sleep. It's as though the universe knows I'm off duty.And upstairs. And whatever is needed is two flights down in the basement.
Last night the nurse and I exchanged pleasantries as she readied herself for the night. I asked, "are you all set: and when she said yes, I went to bed. I was changed and moving toward the bed when I heard "Sally, don't you have any more suction catheters?"
Arrrgh! I guess she was NOT set.
I started to get redressed when I imposed on Tim who was watching a movie in his room. I told him exactly where they were because I had a late night call for supplies on Saturday night too and saw a whole box them. He wasn't thrilled, but he scampered down the two flights of stairs for me and brought the nurse what she needed.
This morning I needed to grab some supplies for the school nurse and I saw everything out of place and several boxes opened. The picture gets about half of the supplies. Obviously, I wasn't that clear when I told Tim where to find what he needed, but to his credit, he figured it out on his own and didn't call me for help. Kudos to him for that.
Saturday night I had been in bed about 15 minutes and had just drifted to sleep when the phone rang. The nurses call from their cell phones to the house phone in the night if they need help. I was up with a start and ran down to see what the problem was.
It was the mist bottle on the air compressor not working. I generally have several of those in my enormous stash of supplies downstairs. That took me to the basement at midnight looking through boxes of tubes and filters for the various machines. There were diapers, pads, suction catheters, urinary catheters, suction canisters, wipes, feedings, and feeding bags, g-tube supplies, oxygen tubing galore and various bibs and bobs to make everything work together. But not a single mist bottle. Nothing.
I tried to think of a way to rig up things so she could get the mist she needs. Straight oxygen without the mist is very drying and she has to have the oxygen. I was looking in all the boxes and trying to be creative when the nurse called down and said "Never mind, I got it to work, it just wasn't on properly."
I let out a heavy sigh and went back to bed, now wide awake and unable to sleep. Thank God for my Kindle Fire and Words with Friends. Steve, who never fully woke up from that call mumbled, "Is she ok?" I looked over at him, jealous of his closed eyes and relaxed state, and said,
"She's fine, but I am slowly going out of my mind."
He didn't respond. He was back to sleep.
I only wish I had things where the nurse can get what they need. Maggie's room is full to bursting and we have so many supplies in the house that the overflow is stored in the basement. It is uncanny. The nurse always discovers that she needs something the moment I get undressed to go to bed or, failing that, the moment I drift off to sleep. It's as though the universe knows I'm off duty.And upstairs. And whatever is needed is two flights down in the basement.
Last night the nurse and I exchanged pleasantries as she readied herself for the night. I asked, "are you all set: and when she said yes, I went to bed. I was changed and moving toward the bed when I heard "Sally, don't you have any more suction catheters?"
Arrrgh! I guess she was NOT set.
I started to get redressed when I imposed on Tim who was watching a movie in his room. I told him exactly where they were because I had a late night call for supplies on Saturday night too and saw a whole box them. He wasn't thrilled, but he scampered down the two flights of stairs for me and brought the nurse what she needed.This morning I needed to grab some supplies for the school nurse and I saw everything out of place and several boxes opened. The picture gets about half of the supplies. Obviously, I wasn't that clear when I told Tim where to find what he needed, but to his credit, he figured it out on his own and didn't call me for help. Kudos to him for that.
Saturday night I had been in bed about 15 minutes and had just drifted to sleep when the phone rang. The nurses call from their cell phones to the house phone in the night if they need help. I was up with a start and ran down to see what the problem was.
It was the mist bottle on the air compressor not working. I generally have several of those in my enormous stash of supplies downstairs. That took me to the basement at midnight looking through boxes of tubes and filters for the various machines. There were diapers, pads, suction catheters, urinary catheters, suction canisters, wipes, feedings, and feeding bags, g-tube supplies, oxygen tubing galore and various bibs and bobs to make everything work together. But not a single mist bottle. Nothing.
I tried to think of a way to rig up things so she could get the mist she needs. Straight oxygen without the mist is very drying and she has to have the oxygen. I was looking in all the boxes and trying to be creative when the nurse called down and said "Never mind, I got it to work, it just wasn't on properly."
I let out a heavy sigh and went back to bed, now wide awake and unable to sleep. Thank God for my Kindle Fire and Words with Friends. Steve, who never fully woke up from that call mumbled, "Is she ok?" I looked over at him, jealous of his closed eyes and relaxed state, and said,
"She's fine, but I am slowly going out of my mind."
He didn't respond. He was back to sleep.
Friday, November 23, 2012
the day after Thanksgiving.....
San Francisco's Union Square, the heart of the shopping district on Black Friday 2012. We just went down to watch this, not to shop.
And so it begins...
And so it begins...
Wednesday, November 21, 2012
I'm thankful for...
Some of the things I'm thankful for.................
Nice weather after the rain, making pies with Maggie, bursting refrigerator, my healthy mom, my healthy kids, my healthy husband, all my siblings and Steve's siblings and all their spouses and children, living in San Francisco, the way Maggie's music entertains her every time she hears it, even though we've all heard it 10,000,000 times. my mother who makes me laugh,the nurses that care for Maggie, the equipment that I complain about that keeps her alive and happy, people who read my blog, autumn colors, the smell of the onions and celery cooking as I start the stuffing, having the pies ready, my new working stove that only took five tries to install, gourds, Maggie talking about Thanksgiving on her dynavox, Arguello Super and their fabulous turkeys, the fact that I can pick up the turkey in the morning and keep everything else in the fridge, Eddie and Grace's safe travels to Grace's parents house, thanksgiving napkins and my canoe and oar napkin holders that I forgot about until I started setting the table, good china and a reason to use it, GIANT wine glasses, the almost set table.
And so much more......
Happy Thanksgiving everyone.
Nice weather after the rain, making pies with Maggie, bursting refrigerator, my healthy mom, my healthy kids, my healthy husband, all my siblings and Steve's siblings and all their spouses and children, living in San Francisco, the way Maggie's music entertains her every time she hears it, even though we've all heard it 10,000,000 times. my mother who makes me laugh,the nurses that care for Maggie, the equipment that I complain about that keeps her alive and happy, people who read my blog, autumn colors, the smell of the onions and celery cooking as I start the stuffing, having the pies ready, my new working stove that only took five tries to install, gourds, Maggie talking about Thanksgiving on her dynavox, Arguello Super and their fabulous turkeys, the fact that I can pick up the turkey in the morning and keep everything else in the fridge, Eddie and Grace's safe travels to Grace's parents house, thanksgiving napkins and my canoe and oar napkin holders that I forgot about until I started setting the table, good china and a reason to use it, GIANT wine glasses, the almost set table.
And so much more......
Happy Thanksgiving everyone.
Tuesday, November 20, 2012
Injured reserve
The constant lifting and dealing with heavy equipment takes its toll on parents of the disabled. In the 18.5 years that I have cared for Maggie I have had my share of injuries.I have injured both shoulders, my back, my neck, jammed my fingers, and sustained countless bruises from walking into pieces of equipment. Somehow, in all this time I have never run over my foot with the wheelchair. Until yesterday.
OW!
I was unloading the chair from the van, which requires some twisting and pulling - both of the chair and of my various muscles. I was in an awkward position as I started lowering it down the ramp. It started to pick up speed and obviously I can't let go or she will crash. In regaining control, I didn't have time to move my foot and wham-o. Holy moley, that was painful.
Of course I was not wearing the shoes I ALWAYS wear - Dansko clogs. Those would have saved me. I think they could stop a freight train.
OW!
I was unloading the chair from the van, which requires some twisting and pulling - both of the chair and of my various muscles. I was in an awkward position as I started lowering it down the ramp. It started to pick up speed and obviously I can't let go or she will crash. In regaining control, I didn't have time to move my foot and wham-o. Holy moley, that was painful.
Of course I was not wearing the shoes I ALWAYS wear - Dansko clogs. Those would have saved me. I think they could stop a freight train.
instead I was wearing these little moccasins and never stood a chance
I thought I broke one or two toes, but they seem to be only bruised. Just something to add to my injury list.
\
Maggie thought it was hilarious when I started dancing around and spewing expletives. She is hoping I will add a couple of those words to her dynavox.
I think not.
Monday, November 19, 2012
Holly Daze
Would someone kindly explain to me how Thanksgiving week arrived already? Seems like I lost a month or so somewhere along the line.
Maggie is off school on Wednesday so she and I will make the stuffing and pies and set the table together. I like to have all that stuff done by Wednesday night so Thursday is just a matter of cooking. No baking, no other prep. There's plenty to do without worrying about readying the house.
I am hoping to take Tim and pop over to my mom's to say hello to "my side" of the family, who are gathering there. We will have dinner here, but it would be nice to say hello to nieces and nephews I haven't seen for a while. Hope that works out, timing wise. We shall see.
We will be 10 this year, down from our 16 from last year.. Eddie is not coming home, he and Grace are headed up to her parents house. Steve's sister and her family are going to her mother in law's house, so its just Steve's brother and his family, my father in law and Josephine, one of Maggie's nurses who doesn't have any family here. If anyone out there needs a place to be for Thanksgiving, let me know. We have room and lots of food.
Not sure what the plans are for the weekend following. We will see Steve's family more over the weekend but schedules are conflicting. I will just wait and see what we can do. I cannot take Maggie to a lot of places and may have to miss those gatherings. I used to just drag her around and pretend it wasn't a problem, but I can't pretend anymore. It would be nice if she could be included in things, but if the destination or planned activity is too much for Maggie,we just stay back. She's always invited, but unless you are living the logistics, people don't realize what is entailed in getting her places. Doesn't matter, Maggie and I have fun no matter what we do.
I can tell you this, I will NOT be shopping on Black Friday.*shudder* I find the whole thing to be a distasteful display. Saw this picture on facebook and it cracked me up.
And now with the stores opening on Thanksgiving night, sheesh! Nothing is sacred anymore.
So, let the Holidaze begin!
I should be back before Thursday, but just in case, Happy Thanksgiving week folks.
I am grateful that you spend time reading this blog!
Maggie is off school on Wednesday so she and I will make the stuffing and pies and set the table together. I like to have all that stuff done by Wednesday night so Thursday is just a matter of cooking. No baking, no other prep. There's plenty to do without worrying about readying the house.
I am hoping to take Tim and pop over to my mom's to say hello to "my side" of the family, who are gathering there. We will have dinner here, but it would be nice to say hello to nieces and nephews I haven't seen for a while. Hope that works out, timing wise. We shall see.
We will be 10 this year, down from our 16 from last year.. Eddie is not coming home, he and Grace are headed up to her parents house. Steve's sister and her family are going to her mother in law's house, so its just Steve's brother and his family, my father in law and Josephine, one of Maggie's nurses who doesn't have any family here. If anyone out there needs a place to be for Thanksgiving, let me know. We have room and lots of food.
Not sure what the plans are for the weekend following. We will see Steve's family more over the weekend but schedules are conflicting. I will just wait and see what we can do. I cannot take Maggie to a lot of places and may have to miss those gatherings. I used to just drag her around and pretend it wasn't a problem, but I can't pretend anymore. It would be nice if she could be included in things, but if the destination or planned activity is too much for Maggie,we just stay back. She's always invited, but unless you are living the logistics, people don't realize what is entailed in getting her places. Doesn't matter, Maggie and I have fun no matter what we do.
I can tell you this, I will NOT be shopping on Black Friday.*shudder* I find the whole thing to be a distasteful display. Saw this picture on facebook and it cracked me up.
So, let the Holidaze begin!
I should be back before Thursday, but just in case, Happy Thanksgiving week folks.
I am grateful that you spend time reading this blog!
Thursday, November 15, 2012
Gratitude and sadness for a man named Tim
As I was parallel parking the car yesterday I heard that little "ding" that let me know I had an email. Often I don't even hear the tone and, even if I do, I generally ignore it when I'm out and about. But I was just about to run a bunch of Maggie errands and took a minute to read it after the car was stopped.
The email advised me that a man named Tim died yesterday morning. Tim was a middle aged man with significant disabilities.I did not know Tim, but I have corresponded with his sister Lisa who reads this blog regularly. She related to my stories about Maggie because she grew up with Tim as her brother. She adored her brother. In fact their relationship made me think of the relationship my son Tim has with Maggie.
In a time when it didn't happen very often and against the advice of doctors and the "establishment", Tim grew up at home with his family. There were not many support services in place and getting him an education was extremely difficult. But he grew up surrounded by the love of his family and thrived. Eventually Tim had to live away from his family to get an education but his family was near him and spent a lot of time with him. From all I have learned from his sister, Tim was a delight to be around. And now he's gone and his family is devastated.
Reading that email made me very sad and I mourned for this man across the country that I do not know. I sat in my car on Clement Street and started to cry. Tim lived his life in quiet grace, yet was largely invisible to society. That's true for many people, but especially for the disabled. Even though I didn't know him, Tim wasn't invisible to me.
Tim was a pioneer and raised by a family of pioneers. He stayed home at a time when "those kids" didn't. He was an integral part of his family, who made many sacrifices to give him the kind of life he - and everyone - deserved. They did it with love and dedication. They did it without the support I get for Maggie. The sacrifices that people like Tim and his family made a generation ago woke people up and because of that there is more support for the Maggies of today's world.
After a few minutes I got out of the car and went in to buy the supplies I needed for Maggie. It struck me how lucky I was to be able to get what I need so close to home because the world is just a little bit easier than it used to be. There is still a long way to go and I hope the next generation will benefit from Maggie's sacrifices as well. For now, I thank Tim and his family and families like his from the bottom of my heart.
Spend a moment today and send a prayer or a good thought to this lovely family who is mourning the loss of their son, and brother. And if you have a family member with a disability, send some gratitude to this family for their part in making our lives just a little bit easier.
Rest well, Tim.
The email advised me that a man named Tim died yesterday morning. Tim was a middle aged man with significant disabilities.I did not know Tim, but I have corresponded with his sister Lisa who reads this blog regularly. She related to my stories about Maggie because she grew up with Tim as her brother. She adored her brother. In fact their relationship made me think of the relationship my son Tim has with Maggie.
In a time when it didn't happen very often and against the advice of doctors and the "establishment", Tim grew up at home with his family. There were not many support services in place and getting him an education was extremely difficult. But he grew up surrounded by the love of his family and thrived. Eventually Tim had to live away from his family to get an education but his family was near him and spent a lot of time with him. From all I have learned from his sister, Tim was a delight to be around. And now he's gone and his family is devastated.
Reading that email made me very sad and I mourned for this man across the country that I do not know. I sat in my car on Clement Street and started to cry. Tim lived his life in quiet grace, yet was largely invisible to society. That's true for many people, but especially for the disabled. Even though I didn't know him, Tim wasn't invisible to me.
Tim was a pioneer and raised by a family of pioneers. He stayed home at a time when "those kids" didn't. He was an integral part of his family, who made many sacrifices to give him the kind of life he - and everyone - deserved. They did it with love and dedication. They did it without the support I get for Maggie. The sacrifices that people like Tim and his family made a generation ago woke people up and because of that there is more support for the Maggies of today's world.
After a few minutes I got out of the car and went in to buy the supplies I needed for Maggie. It struck me how lucky I was to be able to get what I need so close to home because the world is just a little bit easier than it used to be. There is still a long way to go and I hope the next generation will benefit from Maggie's sacrifices as well. For now, I thank Tim and his family and families like his from the bottom of my heart.
Spend a moment today and send a prayer or a good thought to this lovely family who is mourning the loss of their son, and brother. And if you have a family member with a disability, send some gratitude to this family for their part in making our lives just a little bit easier.
Rest well, Tim.
Tuesday, November 13, 2012
Designing Woman
After distractions galore, I am trying to get back to normal posting. I know I said that last week but we had guests over the weekend and there was never a moment to sit down and write. And I have a lovely story to share.
I have many friends from grammar school and high school and friends that I've met through work, through Steve, the boys and Maggie, but I really have only one friend from college with whom I am in regular contact. It is my college roommate, Clare, who lives in Stockton with her teenage daughter Anne Marie. They make the two hour trek to San Francisco regularly and we always spend some time and laughs together.
Anne Marie has always referred to Maggie as her friend, and treats her as such. This is most unusual. Little kids tend to be a little afraid of Maggie and older kids are generally busy doing other things. Not Anne Marie. She was never afraid of Maggie or her equipment in the least. The two of them used to read Junie B. Jones books together and share music. As they got older, Ann Marie treated Maggie like a peer. I love that.
In addition to being a sweetheart, Anne Marie is quite artistic and has an excellent fashion sense. When I complemented her on a dress she was wearing at a party, she said she was going to give it to Maggie. That dress arrived on their next visit, along with the prom dress Maggie wore last year. Both dresses had to be altered a bit to fit Ms. Maggie's little girl frame, but they were grown up dresses and she loved both.
I have many friends from grammar school and high school and friends that I've met through work, through Steve, the boys and Maggie, but I really have only one friend from college with whom I am in regular contact. It is my college roommate, Clare, who lives in Stockton with her teenage daughter Anne Marie. They make the two hour trek to San Francisco regularly and we always spend some time and laughs together.
Anne Marie has always referred to Maggie as her friend, and treats her as such. This is most unusual. Little kids tend to be a little afraid of Maggie and older kids are generally busy doing other things. Not Anne Marie. She was never afraid of Maggie or her equipment in the least. The two of them used to read Junie B. Jones books together and share music. As they got older, Ann Marie treated Maggie like a peer. I love that.
In addition to being a sweetheart, Anne Marie is quite artistic and has an excellent fashion sense. When I complemented her on a dress she was wearing at a party, she said she was going to give it to Maggie. That dress arrived on their next visit, along with the prom dress Maggie wore last year. Both dresses had to be altered a bit to fit Ms. Maggie's little girl frame, but they were grown up dresses and she loved both.
Now Anne Marie is in high school and she has an independent assignment for this year. She can choose to do anything that is approved, but she has to plan and execute it on her own. If it doesn't work out, that's ok because often projects don't work. The lesson is in the planning and the trying. Anne Marie contacted me to ask if it was ok if she could use Maggie for her project. When I heard what it was, I jumped at the chance.
She is going to design and make a dress for Maggie to wear to her prom this year. She wants to make sure it is something that will work for Maggie with her wheelchair and her trach and all her other bells and whistles. I was delighted and Maggie was over the moon! She loves the hand me downs, but imagine, an AMH original design!!!
Clare and Anne Marie came over a couple of weeks ago so that Anne Marie could interview Maggie about what she wants and what special things are needed. Here they are conferring away. Anne Marie is showing Maggie one of the several designs she had already drawn, including one with a removable scarf for Maggie's trach. I was blown away by her creativity and her thoughtfulness.
Maggie loved every single one of them and when Anne Marie asked about colors, Maggie said yes to all of them. It didn't really narrow her choices much, but it definitely demonstrated how excited Maggie is about this. We also talked about the pesky straps that come up through Maggie's legs making dresses almost impossible to wear. (We always have matching shorts underneath) Anne Marie will take that into consideration when she finalizes her designs.
I will keep you updated as the project moves forward. We anticipate more meetings and perhaps a fitting or two as well.
If Anne Marie's teacher is reading this, please give her an A. She has made one girl and her mother extremely happy. And that should count for something.
Thursday, November 8, 2012
Kunckle sandwich
I have been pulled away from my regular postings over the past few weeks. Between the World Series, Halloween and the Election, there were just too many distractions. It's time to get back to the Queen Bee herself, and focus on Maggie. There are lots of things to catch up on from the past few weeks. And I will start spinning those yarns asap.
For now I leave you with this picture of Maggie's scraped up knuckles.
We are not 100% sure how this happened, but I asked her if she punched someone out and she laughed wickedly and said YES! I asked how they liked her knuckle sandwich and we almost had to revive her because she was laughing so hard.
That's my girl!!
"No bright-eyed, blushing, breathless baby-doll baby. No Sir. "
(lyric From the "Sadder but Wiser Girl" from the Music Man
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Gratitudes:
November 7 - Glad the election is over and that I won't get any more emails. jusk mail or robo calls and that we can all get back to "normal" or maybe even better than normal.
November 8 - Thankful for my brother Pat who had entertained me forever and I wish him a very happy birthday today.
For now I leave you with this picture of Maggie's scraped up knuckles.
We are not 100% sure how this happened, but I asked her if she punched someone out and she laughed wickedly and said YES! I asked how they liked her knuckle sandwich and we almost had to revive her because she was laughing so hard.
That's my girl!!
"No bright-eyed, blushing, breathless baby-doll baby. No Sir. "
(lyric From the "Sadder but Wiser Girl" from the Music Man
______________________________________________________________
Gratitudes:
November 7 - Glad the election is over and that I won't get any more emails. jusk mail or robo calls and that we can all get back to "normal" or maybe even better than normal.
November 8 - Thankful for my brother Pat who had entertained me forever and I wish him a very happy birthday today.
Tuesday, November 6, 2012
Vote!!
Today I am grateful that I live in a country where I have the right and freedom to vote for the candidates of my choice without fear of reprisal. We take this freedom for granted here in the United States because we have always had it. Citizens of many countries would be very grateful for the opportunity that we treat so casually.
Please vote!
Sunday, November 4, 2012
Garbage Cop
A couple of weeks back I posted about the ridiculous amount of garbage we put out every week. Our extra large cans are always overflowing with trash, recycling and compost. I hate to point fingers, but it's Maggie. She generates more garbage and laundry than the rest of us combined. She has little tiny feet and a HUGE carbon footprint. I don't know if the garbage cops saw that post or if its just coincidental, but each week since I've posted that there has been a notice on one or more of my cans flagging some sort of issue.
The first week there was a notice on the compost bin and the next two weeks there have been notices on the trash and recycle bins. Each of these notices are the same and have circled pictures that I presume are supposed to tell us that something is in the wrong bin. I guess those are for ease of reading, but I cannot for the life of me figure out what we are doing wrong. We are conscientious about separating things in the proper bins. The strange little picture communication is more of a waste of resources than whatever it is I am doing wrong. I have ignored them and placed them in the correct receptacle.
On Friday morning something roused me from sleep early. I heard something outside and wondered if someone was going through my car. I peered out the window and did see someone going through my garbage which was out on the street awaiting pickup. That happens, people go through the recycling to snag the bottles and cans that they can recycle for cash. It's distasteful and illegal, but it is also harmless.
Then I saw the flashlight, the clipboard and the bright official yellow vest. His head was way down into the trashcan and his butt practically up in the air and he was looking around with his flashlight. I realized I was witnessing the garbage cop in action.
I think my head exploded a little bit. I don't know if that guy works for the City or for the garbage company who is paid by the city, but either way....is this a necessary use of resources?
Without being terribly graphic, let me remind you that my 18 year old daughter wears diapers and she has zero control over bowels or bladder. There are at least 60 diapers and relevant accessories in that garbage bin every week. I don't thing he was actually opening the plastic trash bags that they are placed in, but who knows. He may want to look, but I really don't care to.
I'm certain with the amount of garbage we produce there will be the occasional item in the wrong bin, especially if someone is going to inspect with a flashlight. But we are 99% compliant. And last time I checked, 99% was still an A.
This week I believe the garbage and recycling will stay inside the garage until I put Maggie on the bus. I presume the garbage cop doesn't come back when it's light because he would be out of work if people realized what is going on.
That's why I had to share.
_________________
November gratitudes, continued
Nov 3rd - old friends and getting to spend Saturday with some of the best
Nov 4th - paint that changes a little girls purple room to young woman's beige room and her big brother and dad who did the work.
Don't forget to vote tomorrow. Californians: Please Vote yes on 30 so that people besides garbage cops can keep their jobs.
Friday, November 2, 2012
Gratitude
It's November, the month of Thanksgiving. Thanksgiving Day is always so busy preparing the food, setting the table, and doing the dishes that we can forget what it's all about which is gratitude. Gratitude for the people and things in your life and in your heart. So, as I've done in (some) years past, I'm going to take advantage of the entire moth of November and express my gratitude for at least one thing for each November day.
November 1 - grateful for the wheelchair repairman coming through and fixing a problem that was making Maggie tip over. (also if you read yesterdays post with the three repairs I had, this was the ONLY one that worked, making me triple grateful)
November 2, grateful it's Friday and my last morning madness for a couple of days. The race out the door in the morning is never easy. also grateful for my sister Kate who has a birthday today.
Thursday, November 1, 2012
Little House on the Prairie Day
October, for all of its World Series glory was a tough month for us, equipment wise. The car locking system suddenly decided to stop working, the oven went crazy just as a guest was arriving for dinner one night and . Maggie's wheelchair continues to be problematic.
The wheelchair repair guy is coming today. We await a headrest that will work better but he won't fix that today because there is a more immediate problem. The chair has tipped over twice this week with Maggie in it. Something is amiss and Maggie is able to recline the seat when she gets excited. If all the equipment is hanging on the back when that happens the chair falls over backwards. Not good. Both times her nurse has been right behind her to break the fall, but that won't always be the case. When I described the situation in an email the guy said he thinks he knows what the problem is. I hope so. Maggie arrives at 2:00 today, He is coming here at 3:00PM.
Of course, he may arrive just as the new stove is delivered, because they are coming sometime between 2:30 and 6:30. I have been without an oven since October 17 when it decided to go completely crazy just as our friend Austin was arriving for dinner.It is old and it is the one mismatched appliance in the kitchen. I think the electronic panel is what broke, but we are replacing it. We have been waiting for it to go, but blowing out when it did was not great. (We barbecued, it worked out fine.) Steve had to turn off the circuit breaker just so we could turn the oven off. I've been lighting the gas burners with a match ever since. Probably 75% of my cooking is on top of the stove anyway, but it will certainly be nice to get an oven and broiler back again.
Now the car. Last Monday I arrived home in the blinding rain and noticed the automatic door lock didn't make a noise when I pressed it. I presumed the doors were already locked and thought nothing of it. When I came out in the morning the car was unlocked. The whole system just wouldn't work. Not on my key or in the car. Weird. I figured it must have shorted out in the rain, but I never noticed anything happening. I checked my car manual but there is no fuse for that system. Weird. There was a way to enable and disable the system and I figured somehow it was disabled. I followed the instructions and heard all the right beeps, but the locks still won't work. Weird. I lived with it for 10 days. It is a pain to deal with it manually, but not the end of the world. Still, with winter rains coming I need it fixed. I cannot open the door and lower the ramp to load Maggie unless the door will unlock and I can't have her sitting in the rain while I do it manually.
I took the car in the morning and Steve picked me up. I may have to wait until the morning to get it because I have to wait for the wheelchair and oven guys.
Sure they had bitter cold coming through cracks in the walls and just squeaked by in a hardscrabble life, but Laura Ingalls Wilder never had to deal with a state of the art oven and wheelchair and an automatic locking system that won't work.
So I'm stuck here and going to deal with thing in the house. Right now I'm off to attack Maggie' room and get rid of some of the stuff in there. Tim is going to paint it and this is my chance to purge!! Little House in the City will be slightly less crammed if I get this done.
Anyone need a judges' bench that fits over a wheelchair tray?
Nothing sadder than a leftover Halloween Costume
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