a rambling heart
One of the important things ( I erased most only because I do not believe there is a set order and since my Journey continues and I know not what the future feels like, I could not use the word most as I hope for a future of some kind) I have learned through all of the trials and tribulations of late, is that rest is essential and the failure to do so is pure self mutilation, although I believe my need to continue to move as much as I am able again and again, when I am rested and I am taking my medication properly, I have a greater ability to function iif my function that day is as 'simple' as conversing on the tele.
I have become a sort of (my body has become) balance, whereby off too far to one side or too far to another causes physical symptoms that effect the mind and spirit as well. Today has been the first day since my parents left that I took the time to make what I had to work with, a home that felt like, although not mine, I belonged. And Tuesday morning my parents return. Last week was the energy started negative, possibly intentional, and it has taken me this long to calm my system and some of what was pressing then continues to be pressing today, the importance equal and the outcome to be watched quite carefully as I can only suffer as long as their is no resolution and clearly, not knowing where nor whether your hospice given and taken medical records still exist, is beyond important to me, it is essential.
And although I know by law they must be preserved and kept and viewed per my request, I am in a situation where Journey Hospice shut its doors, failing to give me access or the ability to obtain my records after beginning to ask for a copy almost a month ago, before I knew of any shutdown, refusal to provide life or death medication as well as nursing and aide care.
To know my respite facility, as kind and genuine as they could be for me and Ashley Marie, has not been paid baffles me, saddens me and embarrasses me , believing that the gross negligence of Journey is somehow my issue, the furthest thing from the truth. To watch an administrator of a hospice, in front of an APS worker (this he was unaware of until shortly there after) threaten me with signing a grossly mis-stated and untrue letter or face NOT receiving medication baffles me.To know I was one day from being out of crucial, life or death medication (which not all are) scared me, telling me I still hold fear about that which I write, my terminal disease.
Seeing Dr. V. alone, patient to doctor, encouraged me although the news I received was anything but encouraging. Watching the dogs relate to my presence, demanding my full attention, my offering such, acceptable and rewarding by a trick, a gesture or a pat of love and Ashley Marie knows not much passed pleasing her 'papa'. To watch the little one, very independent, follow the leader, funny and knowing that they felt what I felt and served as further signs as to my physical, mental and emotional state.
I am allowing myself to be an adult, jaded and then some, but an adult with all the responsibility that comes with it and like any vacation I have taken, friends I have visited, it takes a few days but the outcome, real. I want to live again. I want to fight and I see a purpose, an independence so once taken for granted, now, yearned for as a delicacy. Its not an indication of a son/parent relationship that has gone astray, it is a son/parent relationship that has no foundation and thus is only what it can be, me a child of no more than 17, when I left for college, my parents believing they cater to me, not knowing who me is, as I did not walk into their home at the age of 17, but as an adult with what possibly and most likely was thought to be a terminal illness. And when the second and third opinions confirmed what my mind was already telling me, I entered a world which no other could experience, not out of want, but out of not knowing, not feeling, not being.
I am not better, more knowledgeable and therefore wiser. I am not less grateful. I am not changing except for physical manifestations I too can see. I just am and right now, it is o k.
I have become a sort of (my body has become) balance, whereby off too far to one side or too far to another causes physical symptoms that effect the mind and spirit as well. Today has been the first day since my parents left that I took the time to make what I had to work with, a home that felt like, although not mine, I belonged. And Tuesday morning my parents return. Last week was the energy started negative, possibly intentional, and it has taken me this long to calm my system and some of what was pressing then continues to be pressing today, the importance equal and the outcome to be watched quite carefully as I can only suffer as long as their is no resolution and clearly, not knowing where nor whether your hospice given and taken medical records still exist, is beyond important to me, it is essential.
And although I know by law they must be preserved and kept and viewed per my request, I am in a situation where Journey Hospice shut its doors, failing to give me access or the ability to obtain my records after beginning to ask for a copy almost a month ago, before I knew of any shutdown, refusal to provide life or death medication as well as nursing and aide care.
To know my respite facility, as kind and genuine as they could be for me and Ashley Marie, has not been paid baffles me, saddens me and embarrasses me , believing that the gross negligence of Journey is somehow my issue, the furthest thing from the truth. To watch an administrator of a hospice, in front of an APS worker (this he was unaware of until shortly there after) threaten me with signing a grossly mis-stated and untrue letter or face NOT receiving medication baffles me.To know I was one day from being out of crucial, life or death medication (which not all are) scared me, telling me I still hold fear about that which I write, my terminal disease.
Seeing Dr. V. alone, patient to doctor, encouraged me although the news I received was anything but encouraging. Watching the dogs relate to my presence, demanding my full attention, my offering such, acceptable and rewarding by a trick, a gesture or a pat of love and Ashley Marie knows not much passed pleasing her 'papa'. To watch the little one, very independent, follow the leader, funny and knowing that they felt what I felt and served as further signs as to my physical, mental and emotional state.
I am allowing myself to be an adult, jaded and then some, but an adult with all the responsibility that comes with it and like any vacation I have taken, friends I have visited, it takes a few days but the outcome, real. I want to live again. I want to fight and I see a purpose, an independence so once taken for granted, now, yearned for as a delicacy. Its not an indication of a son/parent relationship that has gone astray, it is a son/parent relationship that has no foundation and thus is only what it can be, me a child of no more than 17, when I left for college, my parents believing they cater to me, not knowing who me is, as I did not walk into their home at the age of 17, but as an adult with what possibly and most likely was thought to be a terminal illness. And when the second and third opinions confirmed what my mind was already telling me, I entered a world which no other could experience, not out of want, but out of not knowing, not feeling, not being.
I am not better, more knowledgeable and therefore wiser. I am not less grateful. I am not changing except for physical manifestations I too can see. I just am and right now, it is o k.
posted by the warrior at 3:22 PM
1 Comments:
I'm confused. Are you parents in denial of your illness....or your age...or both? Where is their maturity? You deserve the respect of an adult, even (especially) if you are back home only for the illness. I can't change your folks. I can't do anything. Except PRAY for you and those parents. I continue to follow your blog, and wish for your miracle.
LeeAnn
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