We are - slowly - adjusting to the loss of George. The arguments over the kids bites - mostly because the people in question are not being open - or even kind - about it all in my opinion. I don't think they are doing any favors to themselves, and ESPECIALLY not to the kids or my sister.
We are working on getting C's house ready - the downstairs is first, and things are to be moved in this weekend. Should be interesting.
25 November 2008
15 November 2008
This wasn't supposed to happen!
My sister's fiance, George, lost his battle with AML early this morning. respiratory and heart
failure, 4 days after his diagnosis. A good man who passed too soon at 34, father of 3.
This should have been their wedding shower celebration day.
This wasn't supposed to happen! They were supposed to marry, live together for 50+ years, raise their kids, .....this is so wrong. WRONG dammit. I'm torn between anger and tears - mostly for my sister and the kids, but partially for me. She was getting everything she hoped for finally - and gave me hope and it it just too terrible for words. I want to do more than cry, comfort, plan, - I want to destroy something.........and it won't do any good whatsoever. I'm trying NOT to imagine all my sister must be thinking - what all the kids must be thinking - because I break down every time.
I know taht the worst despair will ease, but I'm afraid of the time it will take, of how far the wounds will go....of losing my grip on sanity, on hope for the future, on faith that things will work out for the best - I'm so tired of it all right now part of me wants to just....disappear? quit? none of it will help...so I've got to do what I've done for so long - put one foot in front of the other and try to maintain the illusion that all will be well............
failure, 4 days after his diagnosis. A good man who passed too soon at 34, father of 3.
This should have been their wedding shower celebration day.
This wasn't supposed to happen! They were supposed to marry, live together for 50+ years, raise their kids, .....this is so wrong. WRONG dammit. I'm torn between anger and tears - mostly for my sister and the kids, but partially for me. She was getting everything she hoped for finally - and gave me hope and it it just too terrible for words. I want to do more than cry, comfort, plan, - I want to destroy something.........and it won't do any good whatsoever. I'm trying NOT to imagine all my sister must be thinking - what all the kids must be thinking - because I break down every time.
I know taht the worst despair will ease, but I'm afraid of the time it will take, of how far the wounds will go....of losing my grip on sanity, on hope for the future, on faith that things will work out for the best - I'm so tired of it all right now part of me wants to just....disappear? quit? none of it will help...so I've got to do what I've done for so long - put one foot in front of the other and try to maintain the illusion that all will be well............
12 November 2008
Social Security
Yet again the SSA has "reviewed my account" and discovered that they owe me money....
but wait...didn't they just say that I owed THEM money? This is only the 4th or 5th time they've recalculated this in the last few months....can't they make up their mind?
Because of this, my youngest loses her health insurance for the month of December - and she still has a couple thousand dollars of medical bills every month.......so now what am I supposed to do? The 50 they are to send me will NOT cover the difference, so I'm screwed. I've asked if they could pay it out over a few months so that she doesn't lose her coverage, but the answer was no.....which did NOT make my day any better.
My insurance (COBRA) ends this month, so now neither my daughters nor myself will have insurance...........
Hope nothing happens in December.
but wait...didn't they just say that I owed THEM money? This is only the 4th or 5th time they've recalculated this in the last few months....can't they make up their mind?
Because of this, my youngest loses her health insurance for the month of December - and she still has a couple thousand dollars of medical bills every month.......so now what am I supposed to do? The 50 they are to send me will NOT cover the difference, so I'm screwed. I've asked if they could pay it out over a few months so that she doesn't lose her coverage, but the answer was no.....which did NOT make my day any better.
My insurance (COBRA) ends this month, so now neither my daughters nor myself will have insurance...........
Hope nothing happens in December.
cancer strikes again
This time, my soon-to-be brother-in-law. Diagnosed yesterday with AML (leukemia). Currently in ICU>
He and my sister just bought a house two weeks ago...marriage scheduled for 31 December....
He has three kids
This is really NOT what they needed.
He and my sister just bought a house two weeks ago...marriage scheduled for 31 December....
He has three kids
This is really NOT what they needed.
07 October 2008
today
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.
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.
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.
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