frustration. had to go to Social Security and prove that my income is NOT what they claim....shouldn't have to do this because my income is reported to the gov't every time they write a check, wouldn't you think?
despair...how to help my youngest manage her learning - post-transplant/chemo/radiation left her with damage, but how to re-train/bypass her problems? Dunno. oldest just doesn't comprehend what she is reading in any subject. She gets things like" they went to the store" but any interpretation/rephrasing just doesn't compute. hard to explain here but she is failing most math papers, social studies, and reading....
she has major science project and wants to work with someone, but her choices are way less than wise...and she doesn't really understand what she wants to do anyway. Proposal required by thursday.........due in three weeks..........grrrrrrrrrrrrrrr
emotions flipping big time today. don't want to see any of the other humans on this planet. prefer not to see any animals either. not gonna happen, but not an easy day.
had to fix my car - again - to the tune of $375 - so no reunion this weekend for me (20th high school). mixed emotions about that.
07 October 2008
16 June 2008
new perspectives
It is amazing to me that in such a short time your perception of a situation can change by so much. Not that it is of earth-shattering importance to anyone outside of myself and my family, but it is a new perspective on things.
Old boyfriend: not paying a bill that I'm now being hounded about because I was stupid enough to neglect to close the account - NOT fair, but since I am unable to contact him it just drives home the stupidity of myself last spring. Admittedly there were VALID medical situations going on but it doesn't help anyone now.
Eldest daughter: finally getting a grip on the fact that my ex isn't going to provide a "perfect alternate family" for her. Wise of her, considering the last time he saw her (by his choice) was March! he doesn't even call her - if she wants to talk to him we have to do it. He isn't good at answering email either. Basically unless I put her in front of his face he ignores her. His wife tries to help, but it hasn't been very successful. She also realized how close her sister came to dying - more than once - during her fight with cancer, and how fragile she still is.
Myself? The medical profession discovered one of the probable "main causes" of some of my health issues, and hopefully it will help solve many of them. I also know that I haven't dealt well with all that has gone on, whether or not it was from one of my choices or from someone else's, and that it can no longer be put off. No, I'm not looking forward to it, but I can no longer afford not to do so.
Youngest daughter: in summer school to help her 'catch up' from missing most of kindergarten. her port-a-cath is scheduled for removal on Friday, if the pulmonary test goes well on Thursday. It is a major milestone, but I am having nightmares about it. Entirely because of past events, and entirely understandable. Her post-transplant issues are also well within "normal", which I am thankful for yet somehow I feel (and she feels!) that everything from the past should have been 'enough'!
Ah well. Life is never "fair" or "smooth" around here, but things are a million gazillion times better than a year ago. Hold on to the good stuff!
Old boyfriend: not paying a bill that I'm now being hounded about because I was stupid enough to neglect to close the account - NOT fair, but since I am unable to contact him it just drives home the stupidity of myself last spring. Admittedly there were VALID medical situations going on but it doesn't help anyone now.
Eldest daughter: finally getting a grip on the fact that my ex isn't going to provide a "perfect alternate family" for her. Wise of her, considering the last time he saw her (by his choice) was March! he doesn't even call her - if she wants to talk to him we have to do it. He isn't good at answering email either. Basically unless I put her in front of his face he ignores her. His wife tries to help, but it hasn't been very successful. She also realized how close her sister came to dying - more than once - during her fight with cancer, and how fragile she still is.
Myself? The medical profession discovered one of the probable "main causes" of some of my health issues, and hopefully it will help solve many of them. I also know that I haven't dealt well with all that has gone on, whether or not it was from one of my choices or from someone else's, and that it can no longer be put off. No, I'm not looking forward to it, but I can no longer afford not to do so.
Youngest daughter: in summer school to help her 'catch up' from missing most of kindergarten. her port-a-cath is scheduled for removal on Friday, if the pulmonary test goes well on Thursday. It is a major milestone, but I am having nightmares about it. Entirely because of past events, and entirely understandable. Her post-transplant issues are also well within "normal", which I am thankful for yet somehow I feel (and she feels!) that everything from the past should have been 'enough'!
Ah well. Life is never "fair" or "smooth" around here, but things are a million gazillion times better than a year ago. Hold on to the good stuff!
28 May 2008
Reactions
I'm sitting here when I'm supposed to be asleep trying to reconcile the current facts of life.
E has reached 13 months post-bone-marrow-transplant; she had her 'last' BMA/LP today and results will take awhile. She no longer climbs or even walks as easily as she used to do; running is very difficult, stairs are better, but still must be negotiated with care. She is slowly gaining ground when speaking, but has not reached pre-transplant level. Learning in general is still slower than before also. Her body is slowly recovering, but I have to wonder what will be left, what will cause problems later in life, etc. You'd think that I could just bask in the wonder that she WILL HAVE a "later in life", wouldn't you? So why am I so afraid of the answers to all these evaluations? Even the weekly blood counts are scary.
These treatments have stolen a large part of childhood for her that she will never recover, left scars that will always exist. Now i have to put her into summer school so that she has a better shot at 1st grade, so I have already caused her to give up most of the first real summer she has had since she was 18 months old! And yes, I feel guilty about that too. But she needs it - she has missed most of kindergarten this year, and does not yet have the skills needed for 1st grade. Even though she will be missing some of each week, I am hoping that summer school is the right solution instead of some type of private tutor? At least the summer school is paid for already - she qualifies.
My eldest, J, is developing into a pre-teen going on 18. She is definitely developing her 'inner moxie' as her karate teacher said - hard to believe sometimes that she IS so old; 5th grade this fall, taking trips with competition team and girl scout troop without family and everything.
Myself? I'm dealing with my own issues, but a few things seem to be straightening out somewhat. I'm afraid to trust in that, too.
If you get a chance, stop and admire the nature around you - it is never exactly the same from moment to moment.
E has reached 13 months post-bone-marrow-transplant; she had her 'last' BMA/LP today and results will take awhile. She no longer climbs or even walks as easily as she used to do; running is very difficult, stairs are better, but still must be negotiated with care. She is slowly gaining ground when speaking, but has not reached pre-transplant level. Learning in general is still slower than before also. Her body is slowly recovering, but I have to wonder what will be left, what will cause problems later in life, etc. You'd think that I could just bask in the wonder that she WILL HAVE a "later in life", wouldn't you? So why am I so afraid of the answers to all these evaluations? Even the weekly blood counts are scary.
These treatments have stolen a large part of childhood for her that she will never recover, left scars that will always exist. Now i have to put her into summer school so that she has a better shot at 1st grade, so I have already caused her to give up most of the first real summer she has had since she was 18 months old! And yes, I feel guilty about that too. But she needs it - she has missed most of kindergarten this year, and does not yet have the skills needed for 1st grade. Even though she will be missing some of each week, I am hoping that summer school is the right solution instead of some type of private tutor? At least the summer school is paid for already - she qualifies.
My eldest, J, is developing into a pre-teen going on 18. She is definitely developing her 'inner moxie' as her karate teacher said - hard to believe sometimes that she IS so old; 5th grade this fall, taking trips with competition team and girl scout troop without family and everything.
Myself? I'm dealing with my own issues, but a few things seem to be straightening out somewhat. I'm afraid to trust in that, too.
If you get a chance, stop and admire the nature around you - it is never exactly the same from moment to moment.
26 February 2008
sadness
It's more than I can grasp
more children falling ill with cancer, more relapses
more 'unknown' hopes
more known fears
more weakness
more sadness
more darkness
another person with "cause unknown".
~~~~~~~~~~~~~
This time, it is me.
more children falling ill with cancer, more relapses
more 'unknown' hopes
more known fears
more weakness
more sadness
more darkness
another person with "cause unknown".
~~~~~~~~~~~~~
This time, it is me.
27 October 2007
By George, I think she's got it!
3rd place in sparring - at her first tournament! I think J's found something she enjoys and is good at doing. She started in August, and we are very proud of her. She's proud of herself, too!
20 October 2007
Rather random thoughts....
Saturday. For once I'm alone in the house, and it is very quiet when the dogs aren't barking.
What does life matter? It depends upon the situation, I think.
To my children, I matter. To the world in general, I am pretty sure I don't exist.
I have few friends, an extended family that is, to say the least, an experience. I thought I had a boyfriend, but right now I couldn't say for sure. Which probably means that I *don't* have one.
I want to love and be loved by one man, but I've given up on trying. There are many things in my life that are skewed, that drain the time and focus from anything outside the family which creates challenges for trying to do anything else. I know that I am not the only one living between what is necessary and what is hoped for in my life. Neither am I the only one who has large problems/issues.
Some people, knowing what the situation is in my life, express amazement, I guess is what you would say, for the ability of us to simply handle life. Between the health, monetary, and personal areas of my life, most usually say that they wouldn't be able to keep going.
IMO, what keeps me going is a mixture of hope that things will improve, faith that these challenges are for a reason, and the (not-so-simple) refusal to quit or run away. Quitting is something I decided about 18 years ago was NOT an option. Running away is what I would like to do some times, but I somehow get myself past that point one way or another - and no, I couldn't really explain how. Hope that things will improve is part stubbornness and part past experience - things may improve and always change a little from the current situation. Kind of like when people say "if you don't like the weather, just wait five minutes."
Faith that this means something, to someone is because of past experience from both sides of the issue - the example of others as well as the few times that I know I made a difference. I hope that I've made a positive difference for more people/situations than I know right now.
Every day I have to keep myself moving; some days it is as little as a few seconds at a time and some days it can even be an hour or so at a time. I trust that if I keep moving, keep handling things that the hoped for change will come. That I *can* manage to take the next step, face the next challenge, and move past the old ones with a little more wisdom.
~M
What does life matter? It depends upon the situation, I think.
To my children, I matter. To the world in general, I am pretty sure I don't exist.
I have few friends, an extended family that is, to say the least, an experience. I thought I had a boyfriend, but right now I couldn't say for sure. Which probably means that I *don't* have one.
I want to love and be loved by one man, but I've given up on trying. There are many things in my life that are skewed, that drain the time and focus from anything outside the family which creates challenges for trying to do anything else. I know that I am not the only one living between what is necessary and what is hoped for in my life. Neither am I the only one who has large problems/issues.
Some people, knowing what the situation is in my life, express amazement, I guess is what you would say, for the ability of us to simply handle life. Between the health, monetary, and personal areas of my life, most usually say that they wouldn't be able to keep going.
IMO, what keeps me going is a mixture of hope that things will improve, faith that these challenges are for a reason, and the (not-so-simple) refusal to quit or run away. Quitting is something I decided about 18 years ago was NOT an option. Running away is what I would like to do some times, but I somehow get myself past that point one way or another - and no, I couldn't really explain how. Hope that things will improve is part stubbornness and part past experience - things may improve and always change a little from the current situation. Kind of like when people say "if you don't like the weather, just wait five minutes."
Faith that this means something, to someone is because of past experience from both sides of the issue - the example of others as well as the few times that I know I made a difference. I hope that I've made a positive difference for more people/situations than I know right now.
Every day I have to keep myself moving; some days it is as little as a few seconds at a time and some days it can even be an hour or so at a time. I trust that if I keep moving, keep handling things that the hoped for change will come. That I *can* manage to take the next step, face the next challenge, and move past the old ones with a little more wisdom.
~M
26 August 2007
Gaining ground
So, in the effort to regain control over my sanity, I am still not working...even the government agreed that I am screwed up. That is only partially a good thing, in my view.
Anyhow. I am starting Chorale again, along with singing in the church choir. Yep. Me at church. I'm giving another try at being with a group of christians. I hope that this time it is better. My girls both need it, so here we go. I love being in the choir, so that's a good thing.
On the suggestion of my mother, which rather surprised me by the way, I am working at the Spirit Acres Equine Rescue twice a week. I've not worked with horses (or stables, for that matter) since I was 12! A lot of exercise, and some work with horses. Not too much right now, but I'll get there. All those years of working with 11 to 14 year olds actually helps when dealing with these stallions! I Of course, I'm bringing them fresh water and food so at least that part is easily explained!
My goal tomorrow is to get J up, prepared, and to school without rushing her. This means that I should already be asleep, but for whatever reason it isn't happening again tonight.
Part of me is getting better at accomplishing things that need to be done, but I still fail more than AI should. Frustrating and depressing, frankly. Hard to keep going.
Relationship wise, I'm happy, but wondering if I'm always going to be 'invisible' to everyone as part of this couple. I guess it is because we are both gun-shy about doing so. Things are getting better, it is just taking longer than I like. Or he likes, for that matter. Just when he gets things set up to improve things something else spazzes out. I have to keep reminding myself (and him sometimes) that the overall picture is much improved ...
My ex called yesterday and needed me to go and sign papers about the time-share we had...apparently he never got the papers done to remove my name five years ago! Time consuming, but pretty easy.
J needs new glasses. I realized today that the ones she has are way too small...
Someone I helped this last year/spring apparently has decided that I don't exist...which hurts, but I guess I should have known better. Now I have to figure out how to deal with the fallout, because of it. I really would like to slap him or something - not useful, I know, but my temper would like to do it anyhow.
I have to go to TX DHHS tomorrow. I don't feel comfortable doing so, but I don't have a choice, either.
Enough. Enough. Enough....I'm off to bed.
Anyhow. I am starting Chorale again, along with singing in the church choir. Yep. Me at church. I'm giving another try at being with a group of christians. I hope that this time it is better. My girls both need it, so here we go. I love being in the choir, so that's a good thing.
On the suggestion of my mother, which rather surprised me by the way, I am working at the Spirit Acres Equine Rescue twice a week. I've not worked with horses (or stables, for that matter) since I was 12! A lot of exercise, and some work with horses. Not too much right now, but I'll get there. All those years of working with 11 to 14 year olds actually helps when dealing with these stallions! I Of course, I'm bringing them fresh water and food so at least that part is easily explained!
My goal tomorrow is to get J up, prepared, and to school without rushing her. This means that I should already be asleep, but for whatever reason it isn't happening again tonight.
Part of me is getting better at accomplishing things that need to be done, but I still fail more than AI should. Frustrating and depressing, frankly. Hard to keep going.
Relationship wise, I'm happy, but wondering if I'm always going to be 'invisible' to everyone as part of this couple. I guess it is because we are both gun-shy about doing so. Things are getting better, it is just taking longer than I like. Or he likes, for that matter. Just when he gets things set up to improve things something else spazzes out. I have to keep reminding myself (and him sometimes) that the overall picture is much improved ...
My ex called yesterday and needed me to go and sign papers about the time-share we had...apparently he never got the papers done to remove my name five years ago! Time consuming, but pretty easy.
J needs new glasses. I realized today that the ones she has are way too small...
Someone I helped this last year/spring apparently has decided that I don't exist...which hurts, but I guess I should have known better. Now I have to figure out how to deal with the fallout, because of it. I really would like to slap him or something - not useful, I know, but my temper would like to do it anyhow.
I have to go to TX DHHS tomorrow. I don't feel comfortable doing so, but I don't have a choice, either.
Enough. Enough. Enough....I'm off to bed.
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