Life has really been boring for Angie and John lately so I've had nothing to write about! John's been rock solid on the no-hospitalization goal we had. At the home he lives in, they've added tools like an oxygen sensor to keep close tabs on him when he does get sick. Overall though, he's just been good. We don't see him often enough but the last time we did, he was happy and healthy.
The major change for them in the past year has been age. Both Angie and John have started to need Depends more because of incontinence. Nothing else dramatically seems different.
Tuesday, July 12, 2011
Wednesday, June 15, 2011
Long lost update
It's been awhile since I posted. Partially because i've been using Livejournal for so many years that it takes awhile to switch services. But the key point now is that Livejournal is blocked from work and Blogger is not!
Saturday, August 7, 2010
My favorite Sister
She's my only sister of course but after all this time I can't imagine having a better sister. She is hysterical and generous and lovely. She makes me laugh even when I want to cry.
Sunday, July 25, 2010
Unemployment, Moving and possibilities...
I'm still in the midst of a lot of major changes. I went through an overdose of anti-anxiety pills which led to taking those completely out of the equation and learning about addiction. Because I was unable to work, I am now unemployed but receiving benefits. I came back from Gatecon with a newly inspired joy that I'd somehow lost. I've lived many different places in my life and over time, I've lost that dreamy quality and replaced it with the words of my family who, through the best of intentions, have always thought I was a bit strange for having such aspirations.
I'm not unhappy but I'm also missing something. I haven't moved in over a year and I've been in Wisconsin since 1999. I want to change that but I want to be sane about it. Leaving my family isn't something I'd do lightly. Though I am proud of where we've ended up. My sister would probably not be as deeply ingrained in our lives as she is if I hadn't impulsively pulled her out of a home to live with me 6 years ago.
The future is uncertain. I'm probably going to a convention in Atlanta in September almost entirely because people I've met elsewhere have been incredibly supportive. I'm literally at the bottom of the financial ladder but that's ok. It gives me time to plan, time to write, time to dream and then I can take flight.
No matter where I go, Angie and John will be in my heart.
I'm not unhappy but I'm also missing something. I haven't moved in over a year and I've been in Wisconsin since 1999. I want to change that but I want to be sane about it. Leaving my family isn't something I'd do lightly. Though I am proud of where we've ended up. My sister would probably not be as deeply ingrained in our lives as she is if I hadn't impulsively pulled her out of a home to live with me 6 years ago.
The future is uncertain. I'm probably going to a convention in Atlanta in September almost entirely because people I've met elsewhere have been incredibly supportive. I'm literally at the bottom of the financial ladder but that's ok. It gives me time to plan, time to write, time to dream and then I can take flight.
No matter where I go, Angie and John will be in my heart.
Tuesday, July 13, 2010
July and Gatecon
In the months since my last post:
John went into the hospital again (for the 6th time) and his blunt but kind doctor explained the process of morphine given to someone dying to me. It was painful to hear but doesn't change our decision. I will not have him suffer, I will not let him be tied down to keep him alive nor let them feed him through a tube. It sounds small but to John, eating is a Joy, one of the truly few he has control over and I will not take that from him. But, he got sick quickly and recovered quickly so all is well.
Angie is completely acting out more (yay yay yay) and her caretakers at school are being a little too helpless about it. She's growing and pushing her boundaries. She's developmentally delayed - she won't stop - you have to keep adapting and the fact that she's pushing those boundaries means she's Living! When I say acting out, I mean that she's not standing there and letting people be really loud in her face or touch her if she's not comfortable - she does what she right now knows how to do - pushes them away or 'smacks' their arm or leg (not hit but open hand with light force.) yes, she has to find another way to do it but she's non-verbal so it is a challenge.
Mom is out of work until August for her knee surgery and her workplace is treating her with such disrespect that it makes me ill. But she has ideas and there is light on the horizon.
I'm out until Monday with my own short term leave. I just got back from an amazing convention. Last month I also stopped drinking and went off some medication so lots of medical/psychological adaptations for me which is why i was off work. This month has had me completely inside my head thinking about my life and where to go with it. To have met the people I met this last weekend - both actors and convention goers - at this time in my life is priceless, timeless, special, spiritual and amazing all in one.
I also have a small shout out to this site: http://ibelieveshesamazing.com/ - I just became aware of it and I'm completely on board.
John went into the hospital again (for the 6th time) and his blunt but kind doctor explained the process of morphine given to someone dying to me. It was painful to hear but doesn't change our decision. I will not have him suffer, I will not let him be tied down to keep him alive nor let them feed him through a tube. It sounds small but to John, eating is a Joy, one of the truly few he has control over and I will not take that from him. But, he got sick quickly and recovered quickly so all is well.
Angie is completely acting out more (yay yay yay) and her caretakers at school are being a little too helpless about it. She's growing and pushing her boundaries. She's developmentally delayed - she won't stop - you have to keep adapting and the fact that she's pushing those boundaries means she's Living! When I say acting out, I mean that she's not standing there and letting people be really loud in her face or touch her if she's not comfortable - she does what she right now knows how to do - pushes them away or 'smacks' their arm or leg (not hit but open hand with light force.) yes, she has to find another way to do it but she's non-verbal so it is a challenge.
Mom is out of work until August for her knee surgery and her workplace is treating her with such disrespect that it makes me ill. But she has ideas and there is light on the horizon.
I'm out until Monday with my own short term leave. I just got back from an amazing convention. Last month I also stopped drinking and went off some medication so lots of medical/psychological adaptations for me which is why i was off work. This month has had me completely inside my head thinking about my life and where to go with it. To have met the people I met this last weekend - both actors and convention goers - at this time in my life is priceless, timeless, special, spiritual and amazing all in one.
I also have a small shout out to this site: http://ibelieveshesamazing.com/ - I just became aware of it and I'm completely on board.
Monday, April 12, 2010
Scriptfrenzy
I like to write. I have a talent for it but like any talent, it takes practice. I'd like to get serious about it now. One way I've been doing that is by entering contests, paid and unpaid. One of them is a screenwriting challenge (i've never written a screen play) for 100 pages in a month. I'm 3 pages away from 50 and I have no idea where the other fifty are going to come from. I thought about starting a second short play but really, the big story I have to tell is my own. I find talking about it in the third person helps give me perspective as to what is interesting to look at not just read.
I also bought a book called writer's market. It comes with an online addition that lets me search for types of articles to write and magazines to submit them to. First of all, I need a collection of work. Books, articles, Essays - non fiction opinion, research etc.
My blogs have helped keep my writing skill honed but its time to ante up.
Aside from my own little world, John has been sick again with pneumonia. I'm nervous and scared like any sister. Its made worse by his inability to really tell us 'i'm feeling congested or really tired' - the only sign is sleeping late and being unable to move without help. They caught it early and he was only in ICU 4 days before going home. They sent him home with O2 but we can only put it on him at night. He did come home for Easter. He was his annoying little self so you know he's feeling better.
I think he gets away with more because he's ill and ill a lot and he knows he's treated differently. He's on a lot of meds to handle his behaviors and at the home he lives at, there's a nice time out room - a sunroom with his cd player for him to chill out without being overstimulated.
The hard part of this bout with pneumonia was the doctor saying his lungs are severely damaged. there will be a time when we don't catch it and he'll not wake up. Not saying it'll happen tomorrow or this year or in five years just..it is likely to happen. Facing mortality - always hard.
Mom and I and John and Angie will be buried together or all of us cremated at the same plot. Time will tell.
I do want to write my book about Angie and John. Maybe a short story for a website would be a good start. I think there's a serious need for research on alternatives for adults with disabilities in the different regions. A comparison if there isn't one already. But that's a huge project. I wonder if I could at least get a handout from each state. Maybe one of the Down Syndrome websites has or an interest in it.
I also bought a book called writer's market. It comes with an online addition that lets me search for types of articles to write and magazines to submit them to. First of all, I need a collection of work. Books, articles, Essays - non fiction opinion, research etc.
My blogs have helped keep my writing skill honed but its time to ante up.
Aside from my own little world, John has been sick again with pneumonia. I'm nervous and scared like any sister. Its made worse by his inability to really tell us 'i'm feeling congested or really tired' - the only sign is sleeping late and being unable to move without help. They caught it early and he was only in ICU 4 days before going home. They sent him home with O2 but we can only put it on him at night. He did come home for Easter. He was his annoying little self so you know he's feeling better.
I think he gets away with more because he's ill and ill a lot and he knows he's treated differently. He's on a lot of meds to handle his behaviors and at the home he lives at, there's a nice time out room - a sunroom with his cd player for him to chill out without being overstimulated.
The hard part of this bout with pneumonia was the doctor saying his lungs are severely damaged. there will be a time when we don't catch it and he'll not wake up. Not saying it'll happen tomorrow or this year or in five years just..it is likely to happen. Facing mortality - always hard.
Mom and I and John and Angie will be buried together or all of us cremated at the same plot. Time will tell.
I do want to write my book about Angie and John. Maybe a short story for a website would be a good start. I think there's a serious need for research on alternatives for adults with disabilities in the different regions. A comparison if there isn't one already. But that's a huge project. I wonder if I could at least get a handout from each state. Maybe one of the Down Syndrome websites has or an interest in it.
Friday, February 19, 2010
Shorty
Please watch this movie: http://bit.ly/9NHMwp
Its about a man who is 56 and lives with his brother. His father was involved in the local school athletics program and Shorty (Walter) became part of the routine. Water boy, towel man, coach etc.. The documentary follows him around. Some times he sounds like a normal mundane man but his attitude and his loyalty are inspiring. You can see in the people that talk about him - strong strapping young lads playing football, old coaches, his brother, his nieces and nephews - how much he adds to their lives in ways they just never thought about.
Its available on Amazon. The significance of his age is that the average down syndrome adult dies in their mid 50's (ie 55) so being 56 is statistically significant.
Its about a man who is 56 and lives with his brother. His father was involved in the local school athletics program and Shorty (Walter) became part of the routine. Water boy, towel man, coach etc.. The documentary follows him around. Some times he sounds like a normal mundane man but his attitude and his loyalty are inspiring. You can see in the people that talk about him - strong strapping young lads playing football, old coaches, his brother, his nieces and nephews - how much he adds to their lives in ways they just never thought about.
Its available on Amazon. The significance of his age is that the average down syndrome adult dies in their mid 50's (ie 55) so being 56 is statistically significant.
Subscribe to:
Comments (Atom)
