This is the week we set aside to give thanks. I like to think I give thanks regularly, but it is good to have this designated time to reflect and remember all that we have to be thankful for.
I am thankful for many things. My family, immediate and extended, is something I am particularly grateful for. These people are a source of support and love for me. My life is centered around them and I have a great life because of them.
I had occasion to see many of the extended - extended family this weekend, cousins and their families, and I am grateful for the connection to so many people. As you get older, relationship with cousins takes a back seat to keeping up with siblings and nieces and nephews. In my family, it has to or the sheer number of people would overwhelm us all. There were 31 cousins in my generation and I cannot even tell you how many there are in the next generation or the one that is coming up behind that. We do not see each other often, other than chance meetings on the street. People talk about only seeing relatives at weddings and funerals. However, this family is so huge; we cannot include everyone at weddings, so it is mostly funerals.
This weekend it was Bobby, my cousin’s son, who died so suddenly last week. The services were lovely; the right blend of celebration of his life and sadness at his passing. And the place was packed, there were hundreds of people there. Bobby touched so many people in his short life; and he lived his life with a passion and exuberance that was contagious. His fiancé, parents, siblings, aunts, uncles, and cousins were devastated by losing him. But I think they were lifted up, a little bit, from the outpouring of affection for him, and the appreciation of his well lived life.
I participated in the services, as did many of my siblings and other cousins. I felt very close to all of them, even as I tried to keep the appropriate distance from those closest to Bobby to let them grieve together as his immediate family. Bobby’s grandparents all predeceased him, so my mom and her brother and sister represented that generation. The three of them walked out of the church arm in arm giving great respect to their late sister’s grandson. It was lovely to see, even though the occasion was sad. There were many bittersweet moments like that.
At a couple of points, I felt out of time, as though we were all little kids in Grandpa’s house on Christmas Eve over 40 years ago. (I’m not saying this makes sense and I cannot explain the gray hair or all these extraneous kids.) I knew, even with all the time that has passed, and the huge responsibilities we all have every single day, that these people are family and will support me if something happens to Maggie. And that is just “my side” of the family. Steve’s family is just the same, and there are a lot them too.
I do not want anything to happen to Maggie and I hope it will not. However, we live on a precipice. And losing a member of the family, especially Bobby, cannot help but raise fears. I can tell you this; it is powerful to know there are so many people out there who will stand beside me in time of crises.
I am thankful for my family..
Monday, November 24, 2008
Friday, November 21, 2008
Sure, Maybe!
The Holidays are here. That means parties, activities, and gatherings of all types. We do more in the last six weeks of the year than we do in six months. What do you do when you cannot get it all done? Just say no, and sit home with a movie and a fire in the fireplace. (Oh, wait, those are not allowed here in Nor Cal right now, we have to wait for the rain). There are worse things.
In our case, getting it all done includes all the holiday hustle and bustle that everyone else has. But we have additional considerations and responsibilities before we can take part in any social activity.
If it is an adult event, and kids are not invited, our issues are like those of someone with small children needing a sitter, but a bit more complicated. We need to get a nurse. Lately this has not been a problem and our fingers remain crossed for the holidays. In addition, frequently we have to hire an assistant for the nurse, someone who can lift Maggie and help with the care. This is more of a wild card. If we were in an age group where our friends had small children, this would not be that big of a deal. But we’re not. Most of our friends have grown children and haven’t had to consider this for a long long time. In fact, they’ve never had to consider the added complexities.
Sometimes folks are hurt when we cannot join in a given activity. It is often difficult for people to understand that one or both of us cannot make a certain outing. Often one of us will go alone, something we are very comfortable doing. (It’s either that or no one ever goes out.) Though we are comfortable doing it, it does not make either of us happy.
If it’s something kids are invited to there are even more things to consider:
1) Is Maggie included? I mean really included? Let’s face it; she freaks many people out. I do not want to take her places where she’s not welcome.
2) If so, can she physically get into the place – is there access? Public places are accessible but private homes are not. If there is access, is it meaningful. Just because you can get a wheelchair into a place doesn’t mean you can maneuver once inside. Will we be off in a corner to keep out of the way? No thanks.
3) What about the activity itself? Can Maggie take part, even as an observer, without getting stressed out? Movies are out because of her visual impairment. She cannot see or cannot process the moving images and the volume and the dark would freak her out.
4) Is it too cold for her? She gets sick easily.
5) Is it too crowded? That is just stressful for both of us. In addition to the maneuverability issue, there is practicality. Does Maggie really want to stare at everyone’s butt? Probably not.
6) Will she have fun? If yes, then let’s go and we will figure out 1-5 later.
7) Is she healthy enough? It’s December, everyone is sick. Winter’s are the hardest time of year for her (and everyone) health wise, But if Maggie gets sick it often means the hospital, no a day or two in bed. If she’s not up to it, then 1-6 are immaterial.
So please understand. We are operating in a world with different rules. We are not dissing you. We want to be able to do what we want when we want to do it. However, we do not enjoy that privilege.
And here is the secret,
That’s ok.
Therefore, if we are invited to anything, our answer is “Sure...Maybe!” What that means is: If
all of the above pieces fall neatly into place, we would love to come. However, there is good chance they won’t.
And then we stay home with a movie and a fire in the fireplace.
So it’s all good.
In our case, getting it all done includes all the holiday hustle and bustle that everyone else has. But we have additional considerations and responsibilities before we can take part in any social activity.
If it is an adult event, and kids are not invited, our issues are like those of someone with small children needing a sitter, but a bit more complicated. We need to get a nurse. Lately this has not been a problem and our fingers remain crossed for the holidays. In addition, frequently we have to hire an assistant for the nurse, someone who can lift Maggie and help with the care. This is more of a wild card. If we were in an age group where our friends had small children, this would not be that big of a deal. But we’re not. Most of our friends have grown children and haven’t had to consider this for a long long time. In fact, they’ve never had to consider the added complexities.
Sometimes folks are hurt when we cannot join in a given activity. It is often difficult for people to understand that one or both of us cannot make a certain outing. Often one of us will go alone, something we are very comfortable doing. (It’s either that or no one ever goes out.) Though we are comfortable doing it, it does not make either of us happy.
If it’s something kids are invited to there are even more things to consider:
1) Is Maggie included? I mean really included? Let’s face it; she freaks many people out. I do not want to take her places where she’s not welcome.
2) If so, can she physically get into the place – is there access? Public places are accessible but private homes are not. If there is access, is it meaningful. Just because you can get a wheelchair into a place doesn’t mean you can maneuver once inside. Will we be off in a corner to keep out of the way? No thanks.
3) What about the activity itself? Can Maggie take part, even as an observer, without getting stressed out? Movies are out because of her visual impairment. She cannot see or cannot process the moving images and the volume and the dark would freak her out.
4) Is it too cold for her? She gets sick easily.
5) Is it too crowded? That is just stressful for both of us. In addition to the maneuverability issue, there is practicality. Does Maggie really want to stare at everyone’s butt? Probably not.
6) Will she have fun? If yes, then let’s go and we will figure out 1-5 later.
7) Is she healthy enough? It’s December, everyone is sick. Winter’s are the hardest time of year for her (and everyone) health wise, But if Maggie gets sick it often means the hospital, no a day or two in bed. If she’s not up to it, then 1-6 are immaterial.
So please understand. We are operating in a world with different rules. We are not dissing you. We want to be able to do what we want when we want to do it. However, we do not enjoy that privilege.
And here is the secret,
That’s ok.
Therefore, if we are invited to anything, our answer is “Sure...Maybe!” What that means is: If
all of the above pieces fall neatly into place, we would love to come. However, there is good chance they won’t.
And then we stay home with a movie and a fire in the fireplace.
So it’s all good.
Thursday, November 20, 2008
Taking Part
Maggie is fairly well known in the education and medical circles in San Francisco. I am not talking famous or anything, but her extensive disabilities and medical problems mean that we interact with many professionals in both worlds. Because we live right in the city close to the medical center and the universities, we are accessible to those professionals when we need them and occasionally when they need us. This week we were needed. And we take part whenever we can. It's important to pay back the people and systems who have helped us.
On Monday, I participated in a study through UCSF regarding the impact on families caring for disabled teenagers and plans for the future. This was part 3 of this study. It was interesting and thought provoking. Looking ahead is something I do very rarely and with great trepidation. I did realize, however, that my outlook has changed since Part 1 of the study eight months ago. Maggie’s health is far more stable now than it was then. My thoughts about the future are not as grim as they used to be. That is a good thing.
On Monday, I participated in a study through UCSF regarding the impact on families caring for disabled teenagers and plans for the future. This was part 3 of this study. It was interesting and thought provoking. Looking ahead is something I do very rarely and with great trepidation. I did realize, however, that my outlook has changed since Part 1 of the study eight months ago. Maggie’s health is far more stable now than it was then. My thoughts about the future are not as grim as they used to be. That is a good thing.
Tuesday I took part in the Family Advisory Council meeting at UCSF. We meet regularly, every month or two. They want family input on various issues, for the past year, it has been input the design of the new children’s hospital. We actually had impact on several things, and that felt good.
Wednesday we had a speech student from San Francisco State University. He had to interview a family dealing with AAC. (AAC is Assistive and Augmentative Communication – that is what Maggie’s communication device is, but there are many many different things that fit into this category.) Unlike the UCSF study, this focus was now, the present, not the future. He asked good questions that were difficult to answer. For example, does Maggie ever communicate her frustration at not being able to do what other kids do? The answer is easy, no. She does not communicate it, and in all honesty, I do not believe she feels frustration.
But now it’s in my head.
Those of you who know Maggie know that she is a very happy kid. I may be delusional, but she is happy with her life, at least when she is at home and not in the hospital. Remember, this is the only life she has known. I think she views her situation differently than we do. We are projecting our own fears and desires onto her but she does not share those. In fact, I from her viewpoint that is not a wheelchair, but a throne and she is the queen. We are but the subjects here to do her bidding.
But now I have to wonder.
Damn college kid, making me think.
Tuesday, November 18, 2008
Re-defining Special
Maggie is in special education. That term, "special ed", evokes different responses from people. There are still those who giggle, or tease; there are those who resent everything about it, finding it unnecessary and expensive; and there are those who cannot imagine life without it. As you may have guessed, I fall into the latter group.
Special ed is a relatively new concept. Before 1975, when congress passed the Education for Handicapped Children Act, kids with special needs either stayed home from school or were institutionalized. I graduated from high school in 1974. I would have been excluded from school if I had special needs.
Special ed is an ever-evolving concept. It changes and refines every year. It includes the most physically disabled, like Maggie, and the child who appears perfectly fine but cannot learn in the way most children do. It takes place in almost every school in special day classes and regular classes. It is not perfect but any means, but neither is typical education. It will take a few more generations to get rid of the bias and the concept of funds being “deviated” from regular ed. It will arrive in full when it is no longer considered “special education”, but just education. But that is a long way off.
The evolution of special ed and the services many children need was and is accomplished mainly through the outrage of parents and educators. Maggie’s state of the art program in San Francisco Unified exists because of parents, and mostly mothers, who could not get what their children needed 10 or 15 years earlier and made noise about it. My hat is off to them. And I hope I am doing my part for those kids who will follow Maggie.
One of those women is my cousin Mickey. Her oldest son Bobby was born in 1976 and had special needs. Mickey, as a mother and a teacher herself, kept fighting to get him what he needed. Because she is such a lovely person, she fought with the system rather than against it and made friends instead of enemies along the way. She relocated to an area that was more beneficial to Bobby’s education. And Bobby flourished. When I say flourished, I mean as a person, not as a person with special needs. Because of his mom and her ability to get his needs met, Bobby finished school, got a job and lived independently. He met a girl, fell in love and asked her to marry him.
He grabbed the brass ring.
What more do any of us want for our kids?
Bobby died last Friday at 32 years of age. I don’t know as I write this what took him, but I know he died in his own apartment watching ESPN, something he loved to do. The world is quieter and a lot less jovial now. Bobby was larger than life, in every respect. His personality was huge and filled every room he entered. He was the life of every party and every gathering. I will miss him and so will everyone who ever met him.
Thanks Bobby, and thanks to your mom Mickey, for making “special” so special.
Special ed is a relatively new concept. Before 1975, when congress passed the Education for Handicapped Children Act, kids with special needs either stayed home from school or were institutionalized. I graduated from high school in 1974. I would have been excluded from school if I had special needs.
Special ed is an ever-evolving concept. It changes and refines every year. It includes the most physically disabled, like Maggie, and the child who appears perfectly fine but cannot learn in the way most children do. It takes place in almost every school in special day classes and regular classes. It is not perfect but any means, but neither is typical education. It will take a few more generations to get rid of the bias and the concept of funds being “deviated” from regular ed. It will arrive in full when it is no longer considered “special education”, but just education. But that is a long way off.
The evolution of special ed and the services many children need was and is accomplished mainly through the outrage of parents and educators. Maggie’s state of the art program in San Francisco Unified exists because of parents, and mostly mothers, who could not get what their children needed 10 or 15 years earlier and made noise about it. My hat is off to them. And I hope I am doing my part for those kids who will follow Maggie.
One of those women is my cousin Mickey. Her oldest son Bobby was born in 1976 and had special needs. Mickey, as a mother and a teacher herself, kept fighting to get him what he needed. Because she is such a lovely person, she fought with the system rather than against it and made friends instead of enemies along the way. She relocated to an area that was more beneficial to Bobby’s education. And Bobby flourished. When I say flourished, I mean as a person, not as a person with special needs. Because of his mom and her ability to get his needs met, Bobby finished school, got a job and lived independently. He met a girl, fell in love and asked her to marry him.
He grabbed the brass ring.
What more do any of us want for our kids?
Bobby died last Friday at 32 years of age. I don’t know as I write this what took him, but I know he died in his own apartment watching ESPN, something he loved to do. The world is quieter and a lot less jovial now. Bobby was larger than life, in every respect. His personality was huge and filled every room he entered. He was the life of every party and every gathering. I will miss him and so will everyone who ever met him.
Thanks Bobby, and thanks to your mom Mickey, for making “special” so special.
Monday, November 17, 2008
I pity the fool
One of my boys, I believe #2, had an assignment many years ago that impressed me. He was in about the 6th grade. The assignment was to write a paragraph explaining the difference between pity and compassion. That’s an excellent assignment, for a 6th grader and for everyone. Try it, it’s not easy.
In the past few days one friend wrote of some health difficulties and told readers their pity was not welcome. I completely understand and agree with that sentiment. In addition there was a comment referring to the compassion one felt for my life with Maggie. I understand, agree with, and deeply appreciate that sentinment.
In the past few days one friend wrote of some health difficulties and told readers their pity was not welcome. I completely understand and agree with that sentiment. In addition there was a comment referring to the compassion one felt for my life with Maggie. I understand, agree with, and deeply appreciate that sentinment.
Why? What’s the difference. Many people use these terms interchangeably, and indeed each is listed as a synonym for the other in thesaurus and the dictionary. Despite the dictionary definitions, however, these two words have different meaning to me and to many other people.
Apparently Neitzche wrote extensively on the subject and didn’t like either emotion.
The best explanation I saw is that pity offers despair and compassion offers hope.
The following are my personal observations:
Both Pity and compassion recognize suffering, but pity sees it in passing and compassion stops to understand. Compassion recognizes suffering on multiple levels and wants to relieve it.
Pity is haughty. Compassion is humble
Pity is judgment. Compassion is acceptance.
Pity is distant. Compassion is intimate.
Pity is not helpful. Compassion is action, or at least desire to take action. Compassion is helpful.
In short, pity sees the situation and compassion sees the humans (or animals) in the situation.
When Mr. T. said “I pity the fool” he was using the term accurately. He was looking down on his subject, he thought them a fool. And indeed they were if they messed with him. " I feel compassion for the fool" just wouldn't pack the same punch.
All of this is subjective, of course. And the variables are several – both in the person offering pity or compassion and the person on the receiving end. One can feel compassion that is (mis)interpreted as pity and their kindness is rebuffed. On the receiving end, one may expect more than one will get. Both lead to hurt feelings on one or both sides. But when it works it really works.
Just knowing there are people out there who care and are offering their support by whatever means, prayers, good wishes, a shoulder, large sums of cash (just in case….) fills my heart and makes every day a little easier.
Friday, November 14, 2008
Weekend antennae
Home again. The quick trip was entertaining, but tiring. That is a lot of driving in two days. The boys were happy to see me and were on their BEST behavior. My sister and I did our part for the economy and left some money in the Casino. Not much, but enough.
As we were leaving the hotel yesterday, I received a call from Maggie’s school nurse. Maggie was having problems. She was ok on the bus ride and at first, but started having problems shortly after arriving at school. I was four hours, 200 miles and one large mountain range away. I told her to call my husband if Maggie needed to come home. He was on standby. I suggested she give Maggie some oxygen to see if that helped. Apparently it did. Maggie bounced back and about half way home she called back to tell me that. The second half of the drive was a lot less stressful. It’s funny, but sometimes 30 minutes of oxygen just gets her engine revved up again. Then she doesn’t need it anymore.
Something is brewing with her, though. She is not “sick” per se, but something’s off. She went to school today, and the nurse will call if there is anything specific that I can call the pediatrician or the pulmonologist about. We will lie low again this weekend and see what decides to show itself.
I hate knowing that something is looming, especially when it’s Friday. I know I can reach her pediatrician anytime because she is a great friend of mine. However, a lot of Maggie’s stuff requires the specialists at UCSF. If something hits over the weekend, you get whatever doctor is “on”. Since there are approximately 10,000,000 doctors at UCSF, chances are extremely low that it will be a doc that knows Maggie. The docs that know Maggie and me are more comfortable with my skills and judgment. The weekend docs generally err on the side of caution, which is a good thing; but inevitably, their advice is “just bring her into the ER.” Then it is 10 hours of tests to rule things out and when they are still stumped, it’s “let’s just admit her to see what’s going on.”
Do not get me wrong. If Maggie needs to be in the hospital, that is where I want her and UCSF is great. However, if Maggie does not absolutely need it, we can take better care of her here. Therefore, I am hoping whatever is brewing either 1) goes away, 2) waits until Monday 3) shows itself to be something that does not require a call to the doctor. Keep your fingers crossed.
As Thanksgiving approaches, I have to remember all the things I am thankful for. Though I complain a lot about the machinations of the place, I am very thankful that I live so close to UCSF and can get Maggie the help she needs, even when it aggravates me.
Have a good weekend all.
As we were leaving the hotel yesterday, I received a call from Maggie’s school nurse. Maggie was having problems. She was ok on the bus ride and at first, but started having problems shortly after arriving at school. I was four hours, 200 miles and one large mountain range away. I told her to call my husband if Maggie needed to come home. He was on standby. I suggested she give Maggie some oxygen to see if that helped. Apparently it did. Maggie bounced back and about half way home she called back to tell me that. The second half of the drive was a lot less stressful. It’s funny, but sometimes 30 minutes of oxygen just gets her engine revved up again. Then she doesn’t need it anymore.
Something is brewing with her, though. She is not “sick” per se, but something’s off. She went to school today, and the nurse will call if there is anything specific that I can call the pediatrician or the pulmonologist about. We will lie low again this weekend and see what decides to show itself.
I hate knowing that something is looming, especially when it’s Friday. I know I can reach her pediatrician anytime because she is a great friend of mine. However, a lot of Maggie’s stuff requires the specialists at UCSF. If something hits over the weekend, you get whatever doctor is “on”. Since there are approximately 10,000,000 doctors at UCSF, chances are extremely low that it will be a doc that knows Maggie. The docs that know Maggie and me are more comfortable with my skills and judgment. The weekend docs generally err on the side of caution, which is a good thing; but inevitably, their advice is “just bring her into the ER.” Then it is 10 hours of tests to rule things out and when they are still stumped, it’s “let’s just admit her to see what’s going on.”
Do not get me wrong. If Maggie needs to be in the hospital, that is where I want her and UCSF is great. However, if Maggie does not absolutely need it, we can take better care of her here. Therefore, I am hoping whatever is brewing either 1) goes away, 2) waits until Monday 3) shows itself to be something that does not require a call to the doctor. Keep your fingers crossed.
As Thanksgiving approaches, I have to remember all the things I am thankful for. Though I complain a lot about the machinations of the place, I am very thankful that I live so close to UCSF and can get Maggie the help she needs, even when it aggravates me.
Have a good weekend all.
Wednesday, November 12, 2008
Having Maggie home from school yesterday was not fun. Sorry, but sometimes it is just difficult.
We started out having fun. We took a short spin around the neighborhood with the dog. All quiet on the western front. (Veteran’s Day reference) Then we went to get Maggie her flu shot. That went smoothly as well – she did not even react to the shot. Puh-leaze. After all this girl has been through, a flu shot is peanuts in a world of elephants.
We went to Mountain Lake Park so the dog could play at the dog park. That was great. Maggie loved all the dogs. They are always a friendly bunch there. Because the dog park is unfenced, people have to have control of their dogs. We walked the long way back to the car and Brisco found a smelly puddle of mud to roll in. The ride home was not pleasant. However, squirting him with the hose when we got home was hilarious. Brisco did not really think so, but Maggie enjoyed that immensely.
We came in the house and Maggie was due for feeding and everything else. As I was getting the feeding ready, she pulled out her trach. It was just the two of us at home and re-tying the trach really takes three hands. Especially when she is in the chair with the headrest covering her neck. Maggie cannot be counted upon as a helping hand, so I had to do it on my own. I grabbed the emergency supplies and reinserted the trach. I could not figure out how to hold it and tie it at the same time because I needed a hand to lean her forward in the wheelchair. I considered just holding it there for 30 minutes until the nurse arrived, but realized that was ridiculous. I could not even leave her to open the front door. I held the trach in place with one hand and threaded one side with the other. Then I leaned her forward and basically held her in place with my hand on the trach. (Ouch) I was quite impressed with myself when I got it re-tied in short order.
Before I could even reach around to pat myself on the back, it came out again. The trach was broken. The little flange where it is threaded had a slit in it and the tie came right off. We had to do it again. All in ten minutes. I grabbed a new one and did the whole thing again. My heart was pounding. I felt very vulnerable and I really felt the weight of the world on my shoulders.
Maggie was and is fine. She pulls and pulls on the thing and eventually it comes out. We have tried to teach her not to do this, but we have been unsuccessful. She knows exactly what she is doing, but she cannot stop herself. As I told someone yesterday, this behavior is somewhere between teenage obstinance and obsession.
But there may have been a breakthrough today. She knew I was upset. I hooked up her talker after these back-to-back incidents and she just said, “Mom is mad.” I said, “Yes Maggie, mom is mad. You have to stop doing that.”
Maybe that will work. I hope so. The nurse arrived and a little later, the nurse’s aide arrived. I made a cup of tea and went upstairs. I did not intend to take a nap, but I fell sound asleep for about an hour. That was good.
So this morning I am putting Maggie on the bus and leaving town. My sister is coming with me. I am going to visit the boys at school. I’m sure they will be thrilled to see me. Sadly, the economy is so bad that the hotel room is practically free. Well, not sad for me, I guess. I have not been up there since Tim left and it is time to check in. I will be back before she gets home tomorrow afternoon. Dad is in charge. Nurses are here and lined up for virtually every hour I am gone.
Moreover, since the boys are in Nevada, I will do a little gambling and hope my luck changes.
So I’ll post again on Friday.
We started out having fun. We took a short spin around the neighborhood with the dog. All quiet on the western front. (Veteran’s Day reference) Then we went to get Maggie her flu shot. That went smoothly as well – she did not even react to the shot. Puh-leaze. After all this girl has been through, a flu shot is peanuts in a world of elephants.
We went to Mountain Lake Park so the dog could play at the dog park. That was great. Maggie loved all the dogs. They are always a friendly bunch there. Because the dog park is unfenced, people have to have control of their dogs. We walked the long way back to the car and Brisco found a smelly puddle of mud to roll in. The ride home was not pleasant. However, squirting him with the hose when we got home was hilarious. Brisco did not really think so, but Maggie enjoyed that immensely.
We came in the house and Maggie was due for feeding and everything else. As I was getting the feeding ready, she pulled out her trach. It was just the two of us at home and re-tying the trach really takes three hands. Especially when she is in the chair with the headrest covering her neck. Maggie cannot be counted upon as a helping hand, so I had to do it on my own. I grabbed the emergency supplies and reinserted the trach. I could not figure out how to hold it and tie it at the same time because I needed a hand to lean her forward in the wheelchair. I considered just holding it there for 30 minutes until the nurse arrived, but realized that was ridiculous. I could not even leave her to open the front door. I held the trach in place with one hand and threaded one side with the other. Then I leaned her forward and basically held her in place with my hand on the trach. (Ouch) I was quite impressed with myself when I got it re-tied in short order.
Before I could even reach around to pat myself on the back, it came out again. The trach was broken. The little flange where it is threaded had a slit in it and the tie came right off. We had to do it again. All in ten minutes. I grabbed a new one and did the whole thing again. My heart was pounding. I felt very vulnerable and I really felt the weight of the world on my shoulders.
Maggie was and is fine. She pulls and pulls on the thing and eventually it comes out. We have tried to teach her not to do this, but we have been unsuccessful. She knows exactly what she is doing, but she cannot stop herself. As I told someone yesterday, this behavior is somewhere between teenage obstinance and obsession.
But there may have been a breakthrough today. She knew I was upset. I hooked up her talker after these back-to-back incidents and she just said, “Mom is mad.” I said, “Yes Maggie, mom is mad. You have to stop doing that.”
Maybe that will work. I hope so. The nurse arrived and a little later, the nurse’s aide arrived. I made a cup of tea and went upstairs. I did not intend to take a nap, but I fell sound asleep for about an hour. That was good.
So this morning I am putting Maggie on the bus and leaving town. My sister is coming with me. I am going to visit the boys at school. I’m sure they will be thrilled to see me. Sadly, the economy is so bad that the hotel room is practically free. Well, not sad for me, I guess. I have not been up there since Tim left and it is time to check in. I will be back before she gets home tomorrow afternoon. Dad is in charge. Nurses are here and lined up for virtually every hour I am gone.
Moreover, since the boys are in Nevada, I will do a little gambling and hope my luck changes.
So I’ll post again on Friday.
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