Archives
February 2006
Saturday, February 25, 2006
1:41:00 PM PST
I dont want this... ok you can check that one off the stages "of comming to
terms," I went through it. If I get a badge saying I went through the "I
dont want this" stage will it be over? " I don't want this" "I never signed up for this" "I never expected this" "I want this to go away" "I want my old life back" are all badges, steps, stages that we go through. And while she seems to be getting worse, going down, you are reluctantly walking up those steps, collecting your unwanted badges, your unfortunate trophies, your undesired awards. And as time goes by and you look behind yourself you realize you are coping, you are learning and you are making progress. Much faster than her progress though. Because you are OK, you are normal, you are wired to be successful, she is not~
What do i want?
I want a clean and orderly house, beautiful happy children, that make the
world a better place through their own good choices.... Guesss I can still
have all this. You want to go backwards and recapture what you had before. You want to be in one of those movies where everything turns backwards, and all that was broken is fixed, and all that had fallen down is righted, and everything swirls and swoops and is sucked back up into that perfect time that you were comfortable in. You want that, and yet you are a realist, and so you are stuck. You don't want to go forward because that would mean acceptance of what you don't want, and you can't go backwards, you can't make things the way they were, and you don't know how to make things better now, so you stay stuck, in a molten emotional morass, where nothing will be solid, eveything keeps melting away~ Who says that the world cannot be a better place just because there is chaos. All of history reveals times of chaos before stability. You, we, she are all human, we are all capable of making changes, making things better, organizing that which is disorganized. And truth be told our damaged children are the banners, the beacons, the public announcements that you cannot treat a human being with anger, violence, neglect, abuse, and expect them to blossom and bloom like all the other well tended flowers in the garden. Our hurt children are that one straggly, wiry, wormy, mishappen plant that we spend a little extra time in nurturing it, wondering how to make it perfect. What do we do? It doesn't respond to the extra fertilizer, the watchful watering, the endless pruning. And yet we don't give up on it. Some would pull it up and throw it away, and explain to ourselves it is better to spend our time on those that are doing well, bearing fruit, blooming wildly. And yet, we keep going back to that straggely little life and choose to give it a little extra of our time, with no guarantees that it will survive, and no guarantees that it will be as beautiful, or as verdant, or as breathtaking as the rest in our garden. But as time does, it eventually rewards you. And your efforts, your attention, your care will bear fruit. Perhaps not as lush, as colorful, as abundant, but because of your attention, that sweet, mopey, seemingly worthless little life will branch out, and bud, and then blossom. In it's own way, the little runt of the garden, the one that took the most time, the one you told yourself you should of let it go will grow, and there will be a flowering that you never expected, you never expected to care, you never thought you would care. But you did, and you do, and you realize later that you saved that little scrubby little mite.
As I go through the 'commming to terms' I have a hard time dealing with the
mundane everydaystuff of keeping a 'clean and orderly home'. Someone
outside looking in would say "why all the trouble. you knew she had
'special needs' when you started this, there is nothing new here." Or they
would say "special needs what special needs?" I guess I realise now that one
can never really know what another person struggles with in daily life. This part of "coming to terms" is a transforming experience, it is a priorities shift, an emotional paradigm that is passing from one form, state or level to another. Some of those things that were priorities before become not as important. In the life of a damaged child, love, nurturing, support, attention are what they will remember, not the orderliness of the house, the cleanliness of the floors. Why all the trouble? Who knew what she would be like? Who could have guessed the open drain of attention she would be. No one saw it coming, no one~ Raising these children is a challenge few would take, and even fewer would understand. In everyones lifetime at one time or the other we cross paths with someone with a disabled child, someone challenged, or someone incapacitated. We look, but we look right through them, over them, pass them. We don't really know or care what a completely different life they have than our own. We try to be empathetic, or compassionate, but it is rather shallow because we really don't want to know what their lives are. It is too confusing, too frightening to know. Anyone who has not had a "special needs" child cannot even come close to
understanding their difficulty. Jewel looks, acts, like any other child at
the playground. But everything is backwards and upside down in raising this
child.
When we bring these children into our lives, these children so difficult, so damaged, so unrelenting in their behaviors, we are somewhat cheated. Our reality is misrepresented, distorted, falsified, because they " look normal". "What could be wrong with this beautiful child". "They don't look like they have a problem in the world". "How could they, they are perfect?" And yet we soon find their disability is "hidden" , it lurks beneath that adorable face, that false charm, that adorable personality. Perhaps their disability is the most incidious because no one can see it, so to them it doesn't exist. And we are left looking like liars, or whiners, or pity mongers and yet only we know the truth. We live it, we deal with it, we understand it, we know it, even if the world outside of our lives does not.
Do you think the Lord placed these children with us because he knew we had
"special abilities" to help these children with their "special needs".
Because, I can not see how even wonder woman could hold up to the
difficulties this causes and I can forsee it causing in the future. Some say God only gives us what we can stand. God knows what you do not. God knows that you are frightened with the prospects of your life with this child, God knows your mixed emotions, your confusion, and even your worst hiddne secret, your hate. God understands that we hate what we can't understand. God sees we cannot relate, that we are angry at our own inability to accept. God knows when we hate ourselves for feeling out of control, robbed of our "other" life, hate a child. Who? We? hate a child, that could never happen and yet it leaches itself out of our thoughts, and strangles us with self hate and self loathing for thinking those thoughts. God knows and understands this is a human condition, and he knows it will pass, and you will find your center, you will begin to find your way.
When I am over whelmed and "just need a break" from it all. I dont care
that Jewel needs attention. But if I forget it then she is causing trouble.
If she cannot go 5 min without attention, how will I stay sane? May the
Lord grant me with these abilities... You know how to find your own balance, and if and when that means walking away from Jewel when you are overwhelmed, you will learn to do it. And do it without self doubt, or guilt. She will still be there when you have found respite, when you feel like you can go back to her with a restfullness that is what you need to keep your sanity, your equalibrium.
Where would I be without you ladies who know and have gone through this.
I want to cheat and skim through the chapters of 'comming to terms'. Cant
you just tell me the stages I will go through and I take 30 mins out and
experience each stage, and get it over with, and get back to a clean house? Jeanine You can cheat~ You can just jump and make the leap, and pass over all the inertia, and hanging on. It's up to you to make that choice, to know when you are there. A lot of the "cheating" comes from our inner self, that says I am a compassionate person who will strive to understand this child, I am empathetic person who will make an effort to appreciate the good in this child, a person who will realize what I need to know. I don't understand now, but I will let the understanding come. We all makes those leaps, sometimes we leap and sometimes we crawl, but we all eventually make it. And a new order will come from your dedication, your tolerance, and your intuition~
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1:41:00 PM PST
Some metaphores for dealing with a child with disabiliteis
I again have read everything you ladies wrote to me. Sorry I did not replyI am not sure if you ever come to terms~ you never in your deepest heart of hearts want to let go of the hopes, wishes and desires. You don't want to let go of the lifeline that was keeping you attached to that boat which personified all the best qualities you saw in Jewel. It's a bit terrifying to let go, to let "all that might have been" float away, to know that you can't save her, you can't make her that perfect person you saw~ So you are left still hanging on, while she tugs, and pitches, and pulls every time she has a meltdown, every time she rages, everytime she doesn't understand even the simplest of things.
earlier. I seem to be having more difficulty 'comming to terms' with the
RAD FASD in Jewel then would seem logical. Of course was it Elain that
said there is no right way to emotions.
I dont want this... ok you can check that one off the stages "of comming to
terms," I went through it. If I get a badge saying I went through the "I
dont want this" stage will it be over? " I don't want this" "I never signed up for this" "I never expected this" "I want this to go away" "I want my old life back" are all badges, steps, stages that we go through. And while she seems to be getting worse, going down, you are reluctantly walking up those steps, collecting your unwanted badges, your unfortunate trophies, your undesired awards. And as time goes by and you look behind yourself you realize you are coping, you are learning and you are making progress. Much faster than her progress though. Because you are OK, you are normal, you are wired to be successful, she is not~
What do i want?
I want a clean and orderly house, beautiful happy children, that make the
world a better place through their own good choices.... Guesss I can still
have all this. You want to go backwards and recapture what you had before. You want to be in one of those movies where everything turns backwards, and all that was broken is fixed, and all that had fallen down is righted, and everything swirls and swoops and is sucked back up into that perfect time that you were comfortable in. You want that, and yet you are a realist, and so you are stuck. You don't want to go forward because that would mean acceptance of what you don't want, and you can't go backwards, you can't make things the way they were, and you don't know how to make things better now, so you stay stuck, in a molten emotional morass, where nothing will be solid, eveything keeps melting away~ Who says that the world cannot be a better place just because there is chaos. All of history reveals times of chaos before stability. You, we, she are all human, we are all capable of making changes, making things better, organizing that which is disorganized. And truth be told our damaged children are the banners, the beacons, the public announcements that you cannot treat a human being with anger, violence, neglect, abuse, and expect them to blossom and bloom like all the other well tended flowers in the garden. Our hurt children are that one straggly, wiry, wormy, mishappen plant that we spend a little extra time in nurturing it, wondering how to make it perfect. What do we do? It doesn't respond to the extra fertilizer, the watchful watering, the endless pruning. And yet we don't give up on it. Some would pull it up and throw it away, and explain to ourselves it is better to spend our time on those that are doing well, bearing fruit, blooming wildly. And yet, we keep going back to that straggely little life and choose to give it a little extra of our time, with no guarantees that it will survive, and no guarantees that it will be as beautiful, or as verdant, or as breathtaking as the rest in our garden. But as time does, it eventually rewards you. And your efforts, your attention, your care will bear fruit. Perhaps not as lush, as colorful, as abundant, but because of your attention, that sweet, mopey, seemingly worthless little life will branch out, and bud, and then blossom. In it's own way, the little runt of the garden, the one that took the most time, the one you told yourself you should of let it go will grow, and there will be a flowering that you never expected, you never expected to care, you never thought you would care. But you did, and you do, and you realize later that you saved that little scrubby little mite.
As I go through the 'commming to terms' I have a hard time dealing with the
mundane everydaystuff of keeping a 'clean and orderly home'. Someone
outside looking in would say "why all the trouble. you knew she had
'special needs' when you started this, there is nothing new here." Or they
would say "special needs what special needs?" I guess I realise now that one
can never really know what another person struggles with in daily life. This part of "coming to terms" is a transforming experience, it is a priorities shift, an emotional paradigm that is passing from one form, state or level to another. Some of those things that were priorities before become not as important. In the life of a damaged child, love, nurturing, support, attention are what they will remember, not the orderliness of the house, the cleanliness of the floors. Why all the trouble? Who knew what she would be like? Who could have guessed the open drain of attention she would be. No one saw it coming, no one~ Raising these children is a challenge few would take, and even fewer would understand. In everyones lifetime at one time or the other we cross paths with someone with a disabled child, someone challenged, or someone incapacitated. We look, but we look right through them, over them, pass them. We don't really know or care what a completely different life they have than our own. We try to be empathetic, or compassionate, but it is rather shallow because we really don't want to know what their lives are. It is too confusing, too frightening to know. Anyone who has not had a "special needs" child cannot even come close to
understanding their difficulty. Jewel looks, acts, like any other child at
the playground. But everything is backwards and upside down in raising this
child.
When we bring these children into our lives, these children so difficult, so damaged, so unrelenting in their behaviors, we are somewhat cheated. Our reality is misrepresented, distorted, falsified, because they " look normal". "What could be wrong with this beautiful child". "They don't look like they have a problem in the world". "How could they, they are perfect?" And yet we soon find their disability is "hidden" , it lurks beneath that adorable face, that false charm, that adorable personality. Perhaps their disability is the most incidious because no one can see it, so to them it doesn't exist. And we are left looking like liars, or whiners, or pity mongers and yet only we know the truth. We live it, we deal with it, we understand it, we know it, even if the world outside of our lives does not.
Do you think the Lord placed these children with us because he knew we had
"special abilities" to help these children with their "special needs".
Because, I can not see how even wonder woman could hold up to the
difficulties this causes and I can forsee it causing in the future. Some say God only gives us what we can stand. God knows what you do not. God knows that you are frightened with the prospects of your life with this child, God knows your mixed emotions, your confusion, and even your worst hiddne secret, your hate. God understands that we hate what we can't understand. God sees we cannot relate, that we are angry at our own inability to accept. God knows when we hate ourselves for feeling out of control, robbed of our "other" life, hate a child. Who? We? hate a child, that could never happen and yet it leaches itself out of our thoughts, and strangles us with self hate and self loathing for thinking those thoughts. God knows and understands this is a human condition, and he knows it will pass, and you will find your center, you will begin to find your way.
When I am over whelmed and "just need a break" from it all. I dont care
that Jewel needs attention. But if I forget it then she is causing trouble.
If she cannot go 5 min without attention, how will I stay sane? May the
Lord grant me with these abilities... You know how to find your own balance, and if and when that means walking away from Jewel when you are overwhelmed, you will learn to do it. And do it without self doubt, or guilt. She will still be there when you have found respite, when you feel like you can go back to her with a restfullness that is what you need to keep your sanity, your equalibrium.
Where would I be without you ladies who know and have gone through this.
I want to cheat and skim through the chapters of 'comming to terms'. Cant
you just tell me the stages I will go through and I take 30 mins out and
experience each stage, and get it over with, and get back to a clean house? Jeanine You can cheat~ You can just jump and make the leap, and pass over all the inertia, and hanging on. It's up to you to make that choice, to know when you are there. A lot of the "cheating" comes from our inner self, that says I am a compassionate person who will strive to understand this child, I am empathetic person who will make an effort to appreciate the good in this child, a person who will realize what I need to know. I don't understand now, but I will let the understanding come. We all makes those leaps, sometimes we leap and sometimes we crawl, but we all eventually make it. And a new order will come from your dedication, your tolerance, and your intuition~
Written by cedesigns6 Blog about this entry |
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