Just click on each "card". They are in order if you go clockwise on the pages, but it doesn't really matter. Enjoy!
 |
 |
| Make a Smilebox postcard |
Sunday, August 30, 2009
Trying something new
A friend sent us a slide show on Smile box so I wanted to give it a try. Here's a photo rendition of Maggie's august. Let's see if it works
Just click on each "card". They are in order if you go clockwise on the pages, but it doesn't really matter. Enjoy!
Just click on each "card". They are in order if you go clockwise on the pages, but it doesn't really matter. Enjoy!
Thursday, August 27, 2009
Those who don't know history...
You may recall Maggie had some medical tests last month. I found out yesterday – over a MONTH AFTER the tests were done – that there may be a problem. They want her to have an “uncomfortable” test to determine if she needs more abdominal surgery. Mama said no. She already had that surgery. Someone needs to read the history of the patient. Just a thought.
I feel very fortunate to live so close to UCSF (Univ of California, San Francisco), a top-notch pediatric care center. Maggie was actually born at a different hospital but they just do not have the depth of resources and specialists that Maggie needs and we switched over to UC. It is one of the best in the country if not the world and I can walk there in 20 minutes. Maggie is alive today because of that place. And sometimes in spite of it.
However, it is a huge academic hospital. That means there are many doctors shifting around. They do a few years at UCSF and then become the head of some department at another institution. Specialists have come and gone from Maggie’s life. We have stayed in one place and have had three different neurosurgeons, different general surgeons, and different neurologists. We have added specialists like Pulmonology. The GI doctor has been the same, but because we started out at a different hospital, even he and his nurse practitioner (who I adore) do not know Maggie’s complete history. They have it, of course, they just weren't part of the team when some things happened.
Apparently, in the month since this test was done, various specialists have been “presenting” Maggie at their department meetings. The test revealed an abnormality in her intestines and they have been discussing what they “need” to do about it. No one bothered to call me for over a month, but they presented her case at a pediatric surgery meeting and decided on a course of action. I am not complaining about privacy issues or anything like that, but a phone call to me may have saved a lot of time and resources. I believe the abnormality they saw is in fact the surgical repair that was done the day she was born.
The Nurse practitioner from one department called to tell me that ped surgery, a separate department, ordered this “uncomfortable” test for Maggie. She thought she was breaking bad news to me about a physical anomaly in my daughter, but of course, I already knew.
I said, simply,”I know, she was born with it and they repaired it the day she was born along with five other anomalies. I need to know 1) if they are familiar with her history, 2) what they would do if the test showed what they suspect and 3) what would happen if we did not address it. I am not putting Maggie through any painful or uncomfortable procedures unless I am CONVINCED they are absolutely necessary and that we would take the next step if needed. Moreover, they will have a hard time convincing me about its necessity when no one even called to tell me about this for a MONTH. I’m sure this is the textbook response to a test result like that, but someone needs to understand that the textbooks rarely apply to Maggie.” She agreed and will have the surgeons call me directly.
A-Yup. Good idea.
Remember my daughter is now 15 and has had over 70 major surgeries. Her insides are like a patchwork quilt. And we are not going back in there now.
“If it ain’t broke don’t fix it” does not quite apply. It is more of “it was broke, it’s already been fixed, and that’s why it looks different. Do your homework before you put a child through painful procedures. And here’s a thought. Call her parents to get input.”
That's probably too long to catch on as a saying.
I feel very fortunate to live so close to UCSF (Univ of California, San Francisco), a top-notch pediatric care center. Maggie was actually born at a different hospital but they just do not have the depth of resources and specialists that Maggie needs and we switched over to UC. It is one of the best in the country if not the world and I can walk there in 20 minutes. Maggie is alive today because of that place. And sometimes in spite of it.
However, it is a huge academic hospital. That means there are many doctors shifting around. They do a few years at UCSF and then become the head of some department at another institution. Specialists have come and gone from Maggie’s life. We have stayed in one place and have had three different neurosurgeons, different general surgeons, and different neurologists. We have added specialists like Pulmonology. The GI doctor has been the same, but because we started out at a different hospital, even he and his nurse practitioner (who I adore) do not know Maggie’s complete history. They have it, of course, they just weren't part of the team when some things happened.
Apparently, in the month since this test was done, various specialists have been “presenting” Maggie at their department meetings. The test revealed an abnormality in her intestines and they have been discussing what they “need” to do about it. No one bothered to call me for over a month, but they presented her case at a pediatric surgery meeting and decided on a course of action. I am not complaining about privacy issues or anything like that, but a phone call to me may have saved a lot of time and resources. I believe the abnormality they saw is in fact the surgical repair that was done the day she was born.
The Nurse practitioner from one department called to tell me that ped surgery, a separate department, ordered this “uncomfortable” test for Maggie. She thought she was breaking bad news to me about a physical anomaly in my daughter, but of course, I already knew.
I said, simply,”I know, she was born with it and they repaired it the day she was born along with five other anomalies. I need to know 1) if they are familiar with her history, 2) what they would do if the test showed what they suspect and 3) what would happen if we did not address it. I am not putting Maggie through any painful or uncomfortable procedures unless I am CONVINCED they are absolutely necessary and that we would take the next step if needed. Moreover, they will have a hard time convincing me about its necessity when no one even called to tell me about this for a MONTH. I’m sure this is the textbook response to a test result like that, but someone needs to understand that the textbooks rarely apply to Maggie.” She agreed and will have the surgeons call me directly.
A-Yup. Good idea.
Remember my daughter is now 15 and has had over 70 major surgeries. Her insides are like a patchwork quilt. And we are not going back in there now.
“If it ain’t broke don’t fix it” does not quite apply. It is more of “it was broke, it’s already been fixed, and that’s why it looks different. Do your homework before you put a child through painful procedures. And here’s a thought. Call her parents to get input.”
That's probably too long to catch on as a saying.
Wednesday, August 26, 2009
Queries from Stranger Part II
This is part two in a (probably) three part series. I am going to start this one the same way. When I wrote about the need for many parents of special needs kids to act as ambassadors to the non-disabled world, I commented on how difficult that can be when people say stupid things. People wanted to know some of the stupid things said and my reactions. I can relay a few of those, but it is difficult to recreate the emotion of the moment, or the context of some of the comments.
Initially I wrote a long piece listing various examples, but trying to capture 15 years of idiocy in one entry is too whiny, which is not how I feel. Besides, focusing on the stupid or offensive things subordinates the kind things people do or say. The kind things astound me. Nonetheless, inquiring minds want to know, and I want to tell. Therefore, I will just put the idiocy and into general categories and serve them up slowly along with the responses.
The first category was “Who’s at fault?” You can read that here Maggie World: Queries from Stranger Part I http://sfmaggie.blogspot.com/2009/07/queries-from-stranger-part-i.html#links
The second category is one I will label “Why was she born” A question I got all the time when Maggie was little (but not so much anymore) was, “Did you know she would be like this before she was born?” Or “Didn’t you have an amnio?”It is difficult to convey the tone of voice here. Think of it as high pitched and incredulous
There were times and contexts that neither question was offensive. I frequently speak in front of groups and open myself up to questions and I would expect questions about medical history then. If I am talking to another parent who is trying to figure out issues with their own child, or having an intimate conversation with a friend, those types of questions are perfectly appropriate.
Other times it is incredibly offensive. Strangers in the park, at the museum, in the grocery store or even at the doctor’s office simply do not get to make these inquiries and neither do casual acquaintances. First of all, it is very intrusive. I do not ask people questions about their medical information or that of their children and expect others to offer the same courtesy. Many of Maggie’s medical conditions and most of her disabilities are obvious, and people seem to think that changes the rules. It does not.
Secondly, the implication often is that I would CERTAINLY be better off, and so would Maggie, if Maggie were never born. Sorry. That does not work for me and I am willing to say not for Maggie either. Think what you want about pro-choice or pro-life. Those do not apply once the child arrives. In addition, societal questions about costs of care etc cannot be addressed on an individual or anecdotal basis. They have to be addressed at a policy level. I am her mother. Guess where I am going to fall on those types of questions. I should not have to defend my child’s existence in the world.
My responses when the context made it offensive were generally one of the following:
1) Ignore the question completely and just stare quizzically until they get uncomfortable. This is very effective.
2) Tell them it is none of their business. I did this, but not very often, because then I have to defend myself from the offense they take “Hey I was just interested, obviously you’re sensitive about this...etc
OR
3) Smile brightly and say, “We had every single test!” (Which is true, by the way and all indicated she was perfectly healthy.) “And we were thrilled to learn we were having a girl after two boys!” That is the best one. It presumes the question to be innocent (even when the context dictates otherwise). It lets the person know how happy I am to have a daughter without addressing the value judgment implied in their question. Honestly, it was often difficult to muster the (pretend) enthusiasm when someone has offended you. It is worth it, though, to see the confused look on the faces. Moreover, it makes them ill at ease. If they want to proceed, they really have to pry, which many do not want or mean to do. If they persist, I can use #2 without worrying about hurting their feelings.
Now that Maggie is 15, I do not really get questions like these anymore, which is ironic because now I could handle them better than I could when she was little.
Still to come…religious questions, animal comparisons and random advice. Hmmm. This may be more than three parts. Stay tuned
Initially I wrote a long piece listing various examples, but trying to capture 15 years of idiocy in one entry is too whiny, which is not how I feel. Besides, focusing on the stupid or offensive things subordinates the kind things people do or say. The kind things astound me. Nonetheless, inquiring minds want to know, and I want to tell. Therefore, I will just put the idiocy and into general categories and serve them up slowly along with the responses.
The first category was “Who’s at fault?” You can read that here Maggie World: Queries from Stranger Part I http://sfmaggie.blogspot.com/2009/07/queries-from-stranger-part-i.html#links
The second category is one I will label “Why was she born” A question I got all the time when Maggie was little (but not so much anymore) was, “Did you know she would be like this before she was born?” Or “Didn’t you have an amnio?”It is difficult to convey the tone of voice here. Think of it as high pitched and incredulous
There were times and contexts that neither question was offensive. I frequently speak in front of groups and open myself up to questions and I would expect questions about medical history then. If I am talking to another parent who is trying to figure out issues with their own child, or having an intimate conversation with a friend, those types of questions are perfectly appropriate.
Other times it is incredibly offensive. Strangers in the park, at the museum, in the grocery store or even at the doctor’s office simply do not get to make these inquiries and neither do casual acquaintances. First of all, it is very intrusive. I do not ask people questions about their medical information or that of their children and expect others to offer the same courtesy. Many of Maggie’s medical conditions and most of her disabilities are obvious, and people seem to think that changes the rules. It does not.
Secondly, the implication often is that I would CERTAINLY be better off, and so would Maggie, if Maggie were never born. Sorry. That does not work for me and I am willing to say not for Maggie either. Think what you want about pro-choice or pro-life. Those do not apply once the child arrives. In addition, societal questions about costs of care etc cannot be addressed on an individual or anecdotal basis. They have to be addressed at a policy level. I am her mother. Guess where I am going to fall on those types of questions. I should not have to defend my child’s existence in the world.
My responses when the context made it offensive were generally one of the following:
1) Ignore the question completely and just stare quizzically until they get uncomfortable. This is very effective.
2) Tell them it is none of their business. I did this, but not very often, because then I have to defend myself from the offense they take “Hey I was just interested, obviously you’re sensitive about this...etc
OR
3) Smile brightly and say, “We had every single test!” (Which is true, by the way and all indicated she was perfectly healthy.) “And we were thrilled to learn we were having a girl after two boys!” That is the best one. It presumes the question to be innocent (even when the context dictates otherwise). It lets the person know how happy I am to have a daughter without addressing the value judgment implied in their question. Honestly, it was often difficult to muster the (pretend) enthusiasm when someone has offended you. It is worth it, though, to see the confused look on the faces. Moreover, it makes them ill at ease. If they want to proceed, they really have to pry, which many do not want or mean to do. If they persist, I can use #2 without worrying about hurting their feelings.
Now that Maggie is 15, I do not really get questions like these anymore, which is ironic because now I could handle them better than I could when she was little.
Still to come…religious questions, animal comparisons and random advice. Hmmm. This may be more than three parts. Stay tuned
Tuesday, August 25, 2009
Anniversary
It has now been a year that I've been writing this blog. I started because of the change in nursing. I was overwhelmed because the agency dropped Maggie (and all kids like her) and we had to take it on ourselves.That means I 've been doing that for a year too. I'm still overwhelmed by that, but having this space to dump my thoughts has been very helpful. I've connected with so many people because of this blog too.
Thanks for listening to me and for tuning in to Maggie's World. And it is Maggie's World, We all just happen to live here too.
Thanks for listening to me and for tuning in to Maggie's World. And it is Maggie's World, We all just happen to live here too.
Monday, August 24, 2009
Big Day
Maggie’s bus just left taking her to Mission High School. I am heading over there in a little bit to help her settle in. Maggie was excited and nervous. Change is not easy for Maggie. She gets familiar with her surroundings, and the people around her and once she establishes a routine she’s very pleased. Everything is new. New bus driver, new kids on the bus, new building, more (and bigger!) kids, new teacher, new classroom, new schedule etc. Thankfully, she has the same nurse, which is a huge help. Nurse Janice knows Maggie very well and will be a huge comfort to her. It will take a week or so for Maggie to feel at all comfortable with anything else and then several more weeks for it to become her new routine.
I am overwhelmed with emotion. I’m excited for her to start this new adventure and worried about the changes, and the bigger kids and all the other things mom’s worry about when their kid starts high school. I’m proud of her too. Mostly, though, I feel relieved and thankful. I can’t believe it. To be honest, I never thought we would see this day.
We have learned to live in the moment. We don’t look ahead because we know we can’t plan anything with Maggie. Her health is so tenuous and the logistics so difficult that making plans is difficult. As I sit here right now, I realize that I never really considered her as a teenager or as a high school girl. That was self protection. To be honest, I never thought she would survive this long. She has not only survived, she is thriving. And I’m overwhelmed.
Here is the tough chick waiting for her bus on the first day of high school. You will note the bright orange scarf around her trach. That is a survival scarf; it contains all sorts of tips for surviving in the wilderness. It was a gift from my brother Pat and family. Pat, who also starts his first day of high school today as a teacher (!) says ANYONE going to a public high school in San Francisco needs to know how to survive.
Maggie could write the book.
I am overwhelmed with emotion. I’m excited for her to start this new adventure and worried about the changes, and the bigger kids and all the other things mom’s worry about when their kid starts high school. I’m proud of her too. Mostly, though, I feel relieved and thankful. I can’t believe it. To be honest, I never thought we would see this day.
We have learned to live in the moment. We don’t look ahead because we know we can’t plan anything with Maggie. Her health is so tenuous and the logistics so difficult that making plans is difficult. As I sit here right now, I realize that I never really considered her as a teenager or as a high school girl. That was self protection. To be honest, I never thought she would survive this long. She has not only survived, she is thriving. And I’m overwhelmed.
Here is the tough chick waiting for her bus on the first day of high school. You will note the bright orange scarf around her trach. That is a survival scarf; it contains all sorts of tips for surviving in the wilderness. It was a gift from my brother Pat and family. Pat, who also starts his first day of high school today as a teacher (!) says ANYONE going to a public high school in San Francisco needs to know how to survive.Maggie could write the book.
Sunday, August 23, 2009
Sunday Walk
This morning Maggie, Brisco and I walked over to Safeway to get some OJ for breakfast. I was in charge of pushing Maggie's chair and Maggie was in charge of holding Brisco's leash.
I can tell you this much. Brisco was VERY concerned when I walked three steps ahead to take these shots. He did not like me leaving my post. I'm supposed to be behind that chair steering carefully.
Friday, August 21, 2009
The Boyz are in the House!
Maggie is always happiest when both of her brothers are around. Her entire face lights up when the three of them are together. Tim is already here and Eddie was home for the weekend a couple of weeks ago. Maggie just held court please as she could be that they were hanging out.
Tim (19) is holding Maggie (15) and Eddie (21) is mugging for the camera (for a change)
Thursday, August 20, 2009
Clean the what, now?
Brisco is the family dog. He is 11 and may be the greatest dog in the world. Happily, Brisco the wonder dog is better. I don't think he posted about his problem, but it is resolved.
He had a rather delicate problem. I believe the official diagnosis was ruptured anal gland. (YEOWCH!) I didn't run right to the vet. This dog never has any medical problems. Other than his shots, I think he's only been to the vet three times in his life, I considered whether or not this was a problem for a day or so. The dog was acting fine, but I was not comfortable with things so in we went. It was probably already getting better by the time I took him in , but I had to be sure.
It was not an emergency visit, yet it still cost $395 (ZOMG!) The office visit was a mere $53, the blood tests (all negative) were $190 and the medicine was and other $130+. As I paid the woman at the desk she asked if I wanted to make a donation for the shelter upstairs. I smiled and said, "I think I just did."
The pharmacy tech instructed me how to give the anti-biotics. Then she gave me a small vial of a blue liquid and instructed me to dilute it 10X with water and then gently spray the "anal area" a few times a day and then wipe it to keep it clean.
I'm sorry, spray the what? where?
This 1 oz magic bottle of blue butt relief cost $23. My husband was sure it was windex. (He may be right)
As I drove home from the vet with a sad dog, and an empty wallet I carefully considered the situation.
It is not often that I feel overwhelmed by my situation, but at that moment I did. I said to the Heavens: "You know, I have a 15 year old daughter whose diaper I have to change 8-10 times a day and I'm OK with that.. I don't complain about that. It's part of the deal, I get that. But I have to draw the line at the dog."
I stood my ground. The magic blue butt relief sits on the counter. It was never opened. Brisco recovered
I'm willing to re-sell it cheap. Even if you don't have the same problem, your windows will sparkle.
He had a rather delicate problem. I believe the official diagnosis was ruptured anal gland. (YEOWCH!) I didn't run right to the vet. This dog never has any medical problems. Other than his shots, I think he's only been to the vet three times in his life, I considered whether or not this was a problem for a day or so. The dog was acting fine, but I was not comfortable with things so in we went. It was probably already getting better by the time I took him in , but I had to be sure.
It was not an emergency visit, yet it still cost $395 (ZOMG!) The office visit was a mere $53, the blood tests (all negative) were $190 and the medicine was and other $130+. As I paid the woman at the desk she asked if I wanted to make a donation for the shelter upstairs. I smiled and said, "I think I just did."
The pharmacy tech instructed me how to give the anti-biotics. Then she gave me a small vial of a blue liquid and instructed me to dilute it 10X with water and then gently spray the "anal area" a few times a day and then wipe it to keep it clean.
I'm sorry, spray the what? where?
This 1 oz magic bottle of blue butt relief cost $23. My husband was sure it was windex. (He may be right)
As I drove home from the vet with a sad dog, and an empty wallet I carefully considered the situation.
It is not often that I feel overwhelmed by my situation, but at that moment I did. I said to the Heavens: "You know, I have a 15 year old daughter whose diaper I have to change 8-10 times a day and I'm OK with that.. I don't complain about that. It's part of the deal, I get that. But I have to draw the line at the dog."
I stood my ground. The magic blue butt relief sits on the counter. It was never opened. Brisco recovered
I'm willing to re-sell it cheap. Even if you don't have the same problem, your windows will sparkle.
Wednesday, August 19, 2009
Zoo Landing
Maggie finally had a real outing yesterday. There was no making games out of chores, running errands or any such thing. We met Nurse Janice and her twins at the zoo. Maggie and I had a great time. The twins are two and were very sweet and entertaining. When the lion was sleeping, they just yelled GET UP. To their delight, it did.
The highlight was the feeding of the grizzly bears. We just happened to arrive at the exhibit at the perfect time. I noticed a woman placing things around the very large open space in the exhibit and said, I would not want her job. (The grizzlies were in an adjoining display and could not get to this woman.) Of course, she was putting food around and the bears find it, simulating a natural experience. The visitors stand in front of a glassed in viewing area to watch. There is a large pond in the display, one side of which is against the glass. Hence, the visitors can see under the water as well as above it.
As we arrived, I heard some children delighting in the fish swimming in the pond and overheard one docent say quietly to the other, “don’t get attached to that fish, kid.” I knew what was coming. The grizzlies came running in, started bounding around the edge of the pond and then SPLASH, in she went and grabbed that fish in her mouth. It was something to see. My adrenaline was pumping, but the kids seemed unfazed by the whole thing. They had their noses pressed up against the glass. The grizzlies were so focused on their food, nothing else mattered. It rather reminded me of dinner at our house when the boys were young teenagers.
Maggie loved it. She was cracking up the whole time. The footplate fell off her wheelchair somewhere around the penguins and she thought that was hilarious. The kids at the zoo were ignoring the animals and staring at Maggie. She did not care and neither did I. Their mothers did. I kept seeing moms scolding their kids after we walked away. I just leaned down and said to Maggie “Ooooh. He’s in truuuuuubbble.” We laughed our heads off.
All this fun was at a bargain price to boot. I think the price of the zoo was $25.50, $12 for me and $5.50 for Maggie (more if you are not a resident of San Francisco). In addition, there was an $8 parking fee. I gave the woman my credit card and she said, “Are you sure you want to charge it, it’s only $5.50.” Perplexed I said, “$5.50 TOTAL?” “Yes. She needs a companion/caregiver and there’s no charge for you and parking is free for the disabled.” Say whaaaa? Deal of the century, I do not mind telling you. I said, “Mag, I just hang out with you and stuff happens for me.”
She grinned – but I think she wants the extra $20.
The highlight was the feeding of the grizzly bears. We just happened to arrive at the exhibit at the perfect time. I noticed a woman placing things around the very large open space in the exhibit and said, I would not want her job. (The grizzlies were in an adjoining display and could not get to this woman.) Of course, she was putting food around and the bears find it, simulating a natural experience. The visitors stand in front of a glassed in viewing area to watch. There is a large pond in the display, one side of which is against the glass. Hence, the visitors can see under the water as well as above it.
As we arrived, I heard some children delighting in the fish swimming in the pond and overheard one docent say quietly to the other, “don’t get attached to that fish, kid.” I knew what was coming. The grizzlies came running in, started bounding around the edge of the pond and then SPLASH, in she went and grabbed that fish in her mouth. It was something to see. My adrenaline was pumping, but the kids seemed unfazed by the whole thing. They had their noses pressed up against the glass. The grizzlies were so focused on their food, nothing else mattered. It rather reminded me of dinner at our house when the boys were young teenagers.
Maggie loved it. She was cracking up the whole time. The footplate fell off her wheelchair somewhere around the penguins and she thought that was hilarious. The kids at the zoo were ignoring the animals and staring at Maggie. She did not care and neither did I. Their mothers did. I kept seeing moms scolding their kids after we walked away. I just leaned down and said to Maggie “Ooooh. He’s in truuuuuubbble.” We laughed our heads off.
All this fun was at a bargain price to boot. I think the price of the zoo was $25.50, $12 for me and $5.50 for Maggie (more if you are not a resident of San Francisco). In addition, there was an $8 parking fee. I gave the woman my credit card and she said, “Are you sure you want to charge it, it’s only $5.50.” Perplexed I said, “$5.50 TOTAL?” “Yes. She needs a companion/caregiver and there’s no charge for you and parking is free for the disabled.” Say whaaaa? Deal of the century, I do not mind telling you. I said, “Mag, I just hang out with you and stuff happens for me.”
She grinned – but I think she wants the extra $20.
Monday, August 17, 2009
Adventures Abound!
One week until school starts. I feel terrible. August was going to be the month Maggie and I had daily adventures. There have been adventures, certainly, but nothing too fun for her. Tomorrow we are heading to the zoo, though, so that will be good. In the meantime we are creating adventures wherever we find ourselves.
Maggie has been asking for various things on her talker and I am trying to comply for a couple of reasons. I want to make her happy and I want to encourage her to understand the power of communication. It's been a learning experience for both of us.
Maggie loves to "cook" as she calls it. That means she hangs out in the kitchen throwing dishtowels and lids to pots while I prepare a meal. When I asked her to point to the stove and she just looked lost. We learn through experience. Maggie sees the stove all the time and knows that I cook on it, but she didn't have any reason to connect the word "stove" to the big box on the kitchen. How often do you actually call something by its name. When I said where is it "Hot" - she pointed to the stove immediately. Of course that makes sense because I always position her where she can't reach it and tell her she can't touch that because it's "Hot".
It's time to start explaining things as I go along. I used to do that all the time when she was little, but sort of dropped the habit. Now that she has a deeper understanding of things, it's time to start again. When I made macaroni salad the other night (because Maggie kept saying "picnic") I had her put her hand in the cold water, and had her feel the macaroni before I cooked it. I told her it was going in the very hot water (which I did not let her touch, thenkyouverymuch). Then I gave her the cooked macaroni to squish in her hands. It was as thought I could see her understanding the process. She thought it was hilarious when at dinner I told Steve and Tim that we were having picnic food because Maggie requested it and that she helped make the macaroni salad. Their ooohs and ahhs were right on the mark.
Today our adventures will have to be close to home. Tim is taking the car all day, so Maggie and I will be forced to hang in the neighborhood. That's fine. Considering we had an adventure in our own kitchen, we know there are plenty of things to explore and learn right here.
We may go wild and head downstairs to the washer and dryer. It's time she started earning her keep around here.
Maggie has been asking for various things on her talker and I am trying to comply for a couple of reasons. I want to make her happy and I want to encourage her to understand the power of communication. It's been a learning experience for both of us.
Maggie loves to "cook" as she calls it. That means she hangs out in the kitchen throwing dishtowels and lids to pots while I prepare a meal. When I asked her to point to the stove and she just looked lost. We learn through experience. Maggie sees the stove all the time and knows that I cook on it, but she didn't have any reason to connect the word "stove" to the big box on the kitchen. How often do you actually call something by its name. When I said where is it "Hot" - she pointed to the stove immediately. Of course that makes sense because I always position her where she can't reach it and tell her she can't touch that because it's "Hot".
It's time to start explaining things as I go along. I used to do that all the time when she was little, but sort of dropped the habit. Now that she has a deeper understanding of things, it's time to start again. When I made macaroni salad the other night (because Maggie kept saying "picnic") I had her put her hand in the cold water, and had her feel the macaroni before I cooked it. I told her it was going in the very hot water (which I did not let her touch, thenkyouverymuch). Then I gave her the cooked macaroni to squish in her hands. It was as thought I could see her understanding the process. She thought it was hilarious when at dinner I told Steve and Tim that we were having picnic food because Maggie requested it and that she helped make the macaroni salad. Their ooohs and ahhs were right on the mark.
Today our adventures will have to be close to home. Tim is taking the car all day, so Maggie and I will be forced to hang in the neighborhood. That's fine. Considering we had an adventure in our own kitchen, we know there are plenty of things to explore and learn right here.
We may go wild and head downstairs to the washer and dryer. It's time she started earning her keep around here.
Friday, August 14, 2009
3rd Circle of Corporate Hell
I have already begun the huge job of dealing with my aunt's estate. It will be a ton of work for a few months and then it will be done. I have to wait to get into the thick of the financial stuff, but for now I have been going through papers, stopping the newspaper, forwarding the mail, turning off the phone and the cable, etc. I explain the situation, give them my name and address for final bills etc. Each thing is a little step forward. Done, check! I don't have to think about them anymore.
Until last night.
I received this call from comcast, her cable TV provider.
C: this is comcast, I would like to speak to Alice please
Me: pausing "she's not here". ( that made me sad)
C ( a bit impatiently) Can I at least leave a message for her.
Me: well, you're going to have to , she passed away 2 weeks ago.
She was flummoxed for a minute but went right into her pitch. I stopped her and said, if you want her to buy anything shes not interested. (still trying to keep it light)
She said in a very matter of fact way (obviously reading from something , "well, I have information that she reduced or canceled her serviced and did not return the box or the remote."
dramatic pause by me....Well...see... she died. And I told the representative that yesterday when I canceled the service.
C -( Matter of factly), Ok. when can you return the box.
M - You are going to have to come and get it. The comcast guy is in her building every single day and I can leave it with the doorman.
C. Please hold.
M holding {and now fuming} ...
after a while.. C . "we can send you a box/kit and you can UPS it back to us."
Me (digging in) no. you are going to have to come and get it. She lived in a hig rise, comcast is in there every day.
I will have to transfer you to customer care. Please be aware this call may be recorded for quality purposes
M: too late for that. But go ahead and transfer me
C:Ok, first, What is your name...
Sally McDonald
C : VALLEY?
No, Sally.
C. NALLY?
Me: {spelling} S A L L Y.
Oh Sally, sweetie, I'm sorry. {"sweetie?".... really?... I didn't say a word}
can you hold while I transfer you to customer care.....
yes.
One more thing -- ok and her address was assisted living place?
Me (exasperated} NO! it was downtowh highrise apartment. She transferred the service back to her home when she returned. I specifically discussed this with the guy yesterday because i wanted to make sure there was no confusion. Service was fine, box is fine, remote is fine, It worked at the new address. I'm happy to give them back to you, but I want you to come and get them.
Please hold.
L O N G H O L D T I M E (lilke 10 minutes)
thank for waiting sally, we appreciate your patience, i'm going to put you back on hold.
fine - but I don't have any of her paperwork here, it's all at her house.
Please hold
a n o t h e r l o n g w a i t.
I'm sorry ma'am I can't reach anyone in customer service in your area as the offices are closed (ya think> it's 8:45 PM)
I can give you an 800 number and you can call t....
ME: No. If they want it they can call me. This has been offensive from start to finish.
C L I C K.
Valley/Nally/Sally: POURS LARGE GLASS OF WINE and briefly wonders if her aunt is making prank calls from Heaven. .
Until last night.
I received this call from comcast, her cable TV provider.
C: this is comcast, I would like to speak to Alice please
Me: pausing "she's not here". ( that made me sad)
C ( a bit impatiently) Can I at least leave a message for her.
Me: well, you're going to have to , she passed away 2 weeks ago.
She was flummoxed for a minute but went right into her pitch. I stopped her and said, if you want her to buy anything shes not interested. (still trying to keep it light)
She said in a very matter of fact way (obviously reading from something , "well, I have information that she reduced or canceled her serviced and did not return the box or the remote."
dramatic pause by me....Well...see... she died. And I told the representative that yesterday when I canceled the service.
C -( Matter of factly), Ok. when can you return the box.
M - You are going to have to come and get it. The comcast guy is in her building every single day and I can leave it with the doorman.
C. Please hold.
M holding {and now fuming} ...
after a while.. C . "we can send you a box/kit and you can UPS it back to us."
Me (digging in) no. you are going to have to come and get it. She lived in a hig rise, comcast is in there every day.
I will have to transfer you to customer care. Please be aware this call may be recorded for quality purposes
M: too late for that. But go ahead and transfer me
C:Ok, first, What is your name...
Sally McDonald
C : VALLEY?
No, Sally.
C. NALLY?
Me: {spelling} S A L L Y.
Oh Sally, sweetie, I'm sorry. {"sweetie?".... really?... I didn't say a word}
can you hold while I transfer you to customer care.....
yes.
One more thing -- ok and her address was assisted living place?
Me (exasperated} NO! it was downtowh highrise apartment. She transferred the service back to her home when she returned. I specifically discussed this with the guy yesterday because i wanted to make sure there was no confusion. Service was fine, box is fine, remote is fine, It worked at the new address. I'm happy to give them back to you, but I want you to come and get them.
Please hold.
L O N G H O L D T I M E (lilke 10 minutes)
thank for waiting sally, we appreciate your patience, i'm going to put you back on hold.
fine - but I don't have any of her paperwork here, it's all at her house.
Please hold
a n o t h e r l o n g w a i t.
I'm sorry ma'am I can't reach anyone in customer service in your area as the offices are closed (ya think> it's 8:45 PM)
I can give you an 800 number and you can call t....
ME: No. If they want it they can call me. This has been offensive from start to finish.
C L I C K.
Valley/Nally/Sally: POURS LARGE GLASS OF WINE and briefly wonders if her aunt is making prank calls from Heaven. .
Thursday, August 13, 2009
Girls on the Go
Time for another sporadic check-in. Jeez I have so much to do I haven't had two minutes to write anything.
Today I took Maggie on our daily outing. We left about 8:45. We drove Tim to work and then drove out ot the beach where my brother lives to drop off a box of stuff he forgot. We chatted with him for a few minutes and then headed for the Mall. I've been promising Maggie a trip to the mall for a while now. We were almost there when my mom called. I pulled over to talk to her, which took another 10 minutes of so. Finally we arrived parked right near the elevator and I started unloading Maggie. It was 10:05. She was in desperate need of suctioning after all that time riding around.
It was then I realized I forgot the suction machine. That is a first for me. I tried not to panic. I cleaned her trach the best I could and got back in the car to drive home. It's probably 4 or 5 miles to the mall and it takes about 10-15 minutes, depending on traffic. That was the L O N G E S T ride home I can ever remember. I was so afraid her trach was going to clog off.
Maggie was fine. I ran in the house and grabbed the machine and ran back down to the car. I suctioned her and she just looked at me, annoyed that we were parked in front of the house and she hadn't even been out of the car yet. It took a while for me to calm down from the "close call" that may not have been close at all. Once my heart rate returned to normal I realized she really is much better since they did that procedure last month. That is BY FAR the longest she has ever gone without suctioning.
I asked her if she wanted to go back to the mall and she signed yes and gave me a big smile. SO we headed back over there, walked around and didn't buy anything. Just like teenage girls -- only one of us is a wee bit long in the tooth for that game.
Today I took Maggie on our daily outing. We left about 8:45. We drove Tim to work and then drove out ot the beach where my brother lives to drop off a box of stuff he forgot. We chatted with him for a few minutes and then headed for the Mall. I've been promising Maggie a trip to the mall for a while now. We were almost there when my mom called. I pulled over to talk to her, which took another 10 minutes of so. Finally we arrived parked right near the elevator and I started unloading Maggie. It was 10:05. She was in desperate need of suctioning after all that time riding around.
It was then I realized I forgot the suction machine. That is a first for me. I tried not to panic. I cleaned her trach the best I could and got back in the car to drive home. It's probably 4 or 5 miles to the mall and it takes about 10-15 minutes, depending on traffic. That was the L O N G E S T ride home I can ever remember. I was so afraid her trach was going to clog off.
Maggie was fine. I ran in the house and grabbed the machine and ran back down to the car. I suctioned her and she just looked at me, annoyed that we were parked in front of the house and she hadn't even been out of the car yet. It took a while for me to calm down from the "close call" that may not have been close at all. Once my heart rate returned to normal I realized she really is much better since they did that procedure last month. That is BY FAR the longest she has ever gone without suctioning.
I asked her if she wanted to go back to the mall and she signed yes and gave me a big smile. SO we headed back over there, walked around and didn't buy anything. Just like teenage girls -- only one of us is a wee bit long in the tooth for that game.
Tuesday, August 11, 2009
Eunice
Eunice Kennedy Shriver died last night. She was 88 and had a very full life. There was a lot of tragedy and loss, certainly, but there was a lot of wonder as well. Eunice Kennedy Shriver is credited with creating the Special Olympics. In fact, I read this morning that she held the first “Olympics” in 1962 in her own backyard. Today there are over 3 million athletes participating in Special Olympics. Maggie is one of them.
Originally, the Special Olympics were only for the mentally disabled. The poster child often had Down’s syndrome. Over the years, it has expanded into all sorts of disabilities including physical
disabilities like those that Maggie has. Where else would Maggie ever get the chance to compete in a power wheelchair race and get cheered wildly for taking over 10 minutes to go about 50 feet. The smile on her face was as big as I have ever seen.
Of course, Special Olympics are not without its critics. Many object because it is not inclusive – it separates the disabled form the community. That is true, it does. However, someone needs a reality check. These athletes would be excluded anyway because could not compete with typical kids. They would be last, they would not be picked, and they would be left out…again. Those who object can simply stay away, no one is forcing them to participate or compete. It is all about having fun. It is all about creating fun for kids who do not have enough fun in their lives. If you want to criticize that, go right ahead. I will be over here avoiding your bad karma.
Can you imagine what it took to get Special Olympics off the ground? It took Kennedy determination and dedication and all the financial resources that come with that. In addition, though, Eunice Kennedy Shriver had to change attitudes. She had to convince her own family to share the biggest secret of their lives. She had to convince them to tell the world about their sister Rosemary and her own mental disabilities. Rosemary Kennedy and other disabled individuals born before 1950 were hidden. They lived in institutions, they were not part of society, they were not part of their families, they were not part of our world.
Attitudes have changed in the past generation or so, due in large part to the Special Olympics showing happy kids. Everyone can relate to happy kids, even if they happened to be disabled. Of course, there is a long way to go. I can only hope there is another person like Eunice Kennedy Shriver to lead us into the light and show us all the wonder and life in all children, regardless of abilities.
Originally, the Special Olympics were only for the mentally disabled. The poster child often had Down’s syndrome. Over the years, it has expanded into all sorts of disabilities including physical
disabilities like those that Maggie has. Where else would Maggie ever get the chance to compete in a power wheelchair race and get cheered wildly for taking over 10 minutes to go about 50 feet. The smile on her face was as big as I have ever seen.Of course, Special Olympics are not without its critics. Many object because it is not inclusive – it separates the disabled form the community. That is true, it does. However, someone needs a reality check. These athletes would be excluded anyway because could not compete with typical kids. They would be last, they would not be picked, and they would be left out…again. Those who object can simply stay away, no one is forcing them to participate or compete. It is all about having fun. It is all about creating fun for kids who do not have enough fun in their lives. If you want to criticize that, go right ahead. I will be over here avoiding your bad karma.
Can you imagine what it took to get Special Olympics off the ground? It took Kennedy determination and dedication and all the financial resources that come with that. In addition, though, Eunice Kennedy Shriver had to change attitudes. She had to convince her own family to share the biggest secret of their lives. She had to convince them to tell the world about their sister Rosemary and her own mental disabilities. Rosemary Kennedy and other disabled individuals born before 1950 were hidden. They lived in institutions, they were not part of society, they were not part of their families, they were not part of our world.
Attitudes have changed in the past generation or so, due in large part to the Special Olympics showing happy kids. Everyone can relate to happy kids, even if they happened to be disabled. Of course, there is a long way to go. I can only hope there is another person like Eunice Kennedy Shriver to lead us into the light and show us all the wonder and life in all children, regardless of abilities.
Monday, August 10, 2009
Silver linings
There are always good things in bad situations. All you have to do is look.
Even though last week was consumed with details of planning and attending my aunt's funeral, which was tiring and sad, it was wonderful to connect with cousins and other relatives.
As I was looking through a giant box of jewelry from my aunt's apartment I had a brilliant idea. My aunt had a ton of stuff - not valuable, just accessories that she wore beautifully. Things that look ridiculous on most women were always just right on her. I floated the idea of all the women wearing one of her necklaces at the funeral. My cousins and sisters were all for it. There were probably 40 or 50 of us bejeweled in AM's finery at the funeral.
Another good thing was more personal. My cousin Peg from Seattle spent some time at my house on Saturday before getting her flight back. Because she lives in Washington she has not spent much time with Maggie. We sat on the back deck having some cheese and crackers while Maggie sat in her chair listening to her nurse Josephine read a book. I attached the talker and Maggie told Peg jokes and "conversed" with us. I watched as Peg realized how smart Maggie really is.
Don't get me wrong, people believe me. They believe what I'm saying. But experiencing it first hand is something different. And (selfishly) I love to watch the realization hit home. As Maggie bored of talking with us she maneuvered her talker and said "Josephine, Book please." Peg just looked surprised and delighted. She said, Wow!, she wants Josephine to continue reading."
I just smiled. Fortunately Peg was so taken with Maggie's smarts that she annoyed her rudeness. She was DONE talking to us.
Finally I also learned that my cousin's son Davis is an "almost daily reader" of this blog. So hey Davis!! Now I know I have a connection all the time. That's better than a silver lining.
Even though last week was consumed with details of planning and attending my aunt's funeral, which was tiring and sad, it was wonderful to connect with cousins and other relatives.
As I was looking through a giant box of jewelry from my aunt's apartment I had a brilliant idea. My aunt had a ton of stuff - not valuable, just accessories that she wore beautifully. Things that look ridiculous on most women were always just right on her. I floated the idea of all the women wearing one of her necklaces at the funeral. My cousins and sisters were all for it. There were probably 40 or 50 of us bejeweled in AM's finery at the funeral.
Another good thing was more personal. My cousin Peg from Seattle spent some time at my house on Saturday before getting her flight back. Because she lives in Washington she has not spent much time with Maggie. We sat on the back deck having some cheese and crackers while Maggie sat in her chair listening to her nurse Josephine read a book. I attached the talker and Maggie told Peg jokes and "conversed" with us. I watched as Peg realized how smart Maggie really is.
Don't get me wrong, people believe me. They believe what I'm saying. But experiencing it first hand is something different. And (selfishly) I love to watch the realization hit home. As Maggie bored of talking with us she maneuvered her talker and said "Josephine, Book please." Peg just looked surprised and delighted. She said, Wow!, she wants Josephine to continue reading."
I just smiled. Fortunately Peg was so taken with Maggie's smarts that she annoyed her rudeness. She was DONE talking to us.
Finally I also learned that my cousin's son Davis is an "almost daily reader" of this blog. So hey Davis!! Now I know I have a connection all the time. That's better than a silver lining.
Wednesday, August 5, 2009
Just passing through
Just want to check in to say you won't be seeing any new posts until next week. My aunt's sudden passing means 50 million things have to be done in the next few days. I have about 48 million done already.
Of course all of this happens when Maggie is out of school. I said I was looking for different kinds of outings to keep her entertained, but meeting the medical examiner, taking trips to make arrangements at the cemetery and gathering photos for a memory board were not on my "to do" list. My mother said Maggie can write the best "what I did on my summer vacation" essay when school starts in a few weeks.
In the flurry of activity, I have had the opportunity to speak to numerous cousins, my uncle and all of my siblings and several of their kids. We have laughed over many things as memories of my aunt are shared. I am reminded, once again, how very lucky I am to be part of this amazing family.
Of course all of this happens when Maggie is out of school. I said I was looking for different kinds of outings to keep her entertained, but meeting the medical examiner, taking trips to make arrangements at the cemetery and gathering photos for a memory board were not on my "to do" list. My mother said Maggie can write the best "what I did on my summer vacation" essay when school starts in a few weeks.
In the flurry of activity, I have had the opportunity to speak to numerous cousins, my uncle and all of my siblings and several of their kids. We have laughed over many things as memories of my aunt are shared. I am reminded, once again, how very lucky I am to be part of this amazing family.
Monday, August 3, 2009
A San Francisco Original
I have written several times about my aunt Alice Marie, or A.M., as she is known. I’ve written about how she fell and had to go into the hospital, about how she had to go into assisted living, about how she wanted to go home, about moving her home and just last week about shopping with her and Maggie at Trader Joe’s. However, I never really wrote about her. And now she is gone.
A.M passed away at home just one month after leaving assisted living. She was an independent woman from the start, so it is fitting that she would be back on her own and living independently when she passed. She was, in many ways, a woman ahead of her time. She had a career, never married or had kids, and lived life on her own terms.
Her several siblings married and produced 32 children between them. I had five aunts, but AM was the aunt who was different from the rest. She drove a Volkswagen bug when the rest of us had station wagons. Forty years ago, she moved downtown, which was wild, and sold her car because she didn’t need one. That was unheard of. She and her friend Shirley used to rent cars when they wanted to go somewhere. We thought that was exotic.
My sister Ellen reminded me that when she came to visit there was always a bag filled with goodies, food treats that were either things we generally did not have in our house or, more likely, things that did not last more than five minutes in our house. Christmas meant a gift from A.M. that was always wrapped in the same wrapping paper. For years. All those nieces and nephews received gifts always wrapped in the same paper. (I always wondered how big that roll was.) You knew immediately which gift was from A.M. The gifts themselves were always something unique. Not extravagant, but thoughtful; and because it came from A.M., we generally thought it was exotic, too.
A.M had a well-developed sense of humor and strong opinions. She intertwined the two freely, which could be sidesplitting and exasperating at the same time. The next generation, my kids and their cousins etc, found her especially hilarious because she would say things that other people in their grandparent's generation would never say. Moreover, she would say them in a very colorful way. That was part of the exasperation for my generation, because many of us had become the staid middle agers that she never was.
A.M. was proud of her strong family ties, and proud of her independence, too. She was generous with her love and she would give you the shirt off her back if you needed it. She asked only for love in return. She was much loved and will be greatly missed.
St. Peter will have his hands full dealing with her at the pearly gates.
A.M passed away at home just one month after leaving assisted living. She was an independent woman from the start, so it is fitting that she would be back on her own and living independently when she passed. She was, in many ways, a woman ahead of her time. She had a career, never married or had kids, and lived life on her own terms.
Her several siblings married and produced 32 children between them. I had five aunts, but AM was the aunt who was different from the rest. She drove a Volkswagen bug when the rest of us had station wagons. Forty years ago, she moved downtown, which was wild, and sold her car because she didn’t need one. That was unheard of. She and her friend Shirley used to rent cars when they wanted to go somewhere. We thought that was exotic.
My sister Ellen reminded me that when she came to visit there was always a bag filled with goodies, food treats that were either things we generally did not have in our house or, more likely, things that did not last more than five minutes in our house. Christmas meant a gift from A.M. that was always wrapped in the same wrapping paper. For years. All those nieces and nephews received gifts always wrapped in the same paper. (I always wondered how big that roll was.) You knew immediately which gift was from A.M. The gifts themselves were always something unique. Not extravagant, but thoughtful; and because it came from A.M., we generally thought it was exotic, too.
A.M had a well-developed sense of humor and strong opinions. She intertwined the two freely, which could be sidesplitting and exasperating at the same time. The next generation, my kids and their cousins etc, found her especially hilarious because she would say things that other people in their grandparent's generation would never say. Moreover, she would say them in a very colorful way. That was part of the exasperation for my generation, because many of us had become the staid middle agers that she never was.
A.M. was proud of her strong family ties, and proud of her independence, too. She was generous with her love and she would give you the shirt off her back if you needed it. She asked only for love in return. She was much loved and will be greatly missed.
St. Peter will have his hands full dealing with her at the pearly gates.
Subscribe to:
Posts (Atom)