Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 charge doesnt go it just cant or if it does then we r dead arent we now ive just confused my self coz even the dead person ahs charge coz thats wat the died of istn it maybe you cold go of mail for a while take a holiday this place is over helming i knwo or lurk sometimes i get a little overhelmeed by everyone in here and im a charger LOL so imagine soem of the newer parents their heads would be spinning of their necks hugs ellen > > Hi All, > Thank again for such a deep discussion. I did see you post DeeDee, > Thanks! > > And I got yours Tia!! > > I am overwhelmed right now. I am ready for CHARGE Syndrome to be done > now. I think I am in denial...like it really might have an obscure > cure. One would think that I have accepted this as part of our family. I > keep wondering when its going to fade away. I am sooooo impatient with > right now. And I feel so terrible about it. But I am at a loss. How > do I accept that this not going to fade or go away? I am in contact with > another mom whose daughter is following similar delevopment patterns like > . How do I encourage her when I feel at such a loss? Right now I > can't tell if she has " CHARGE " behaviours or what is going on. > > I am truly sad. > > I love this girl so much and I just do not know what to do, where to go, > or how to help her. > > Keeping up with life, this list, my job and my famliy as a whole... > > A vent for me but no one I know knows how I feel right now and I just > don't know where to go. I feel like I should be stronger.... > > A bad night...until tomorow.... > Colleen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 charge doesnt go it just cant or if it does then we r dead arent we now ive just confused my self coz even the dead person ahs charge coz thats wat the died of istn it maybe you cold go of mail for a while take a holiday this place is over helming i knwo or lurk sometimes i get a little overhelmeed by everyone in here and im a charger LOL so imagine soem of the newer parents their heads would be spinning of their necks hugs ellen > > Hi All, > Thank again for such a deep discussion. I did see you post DeeDee, > Thanks! > > And I got yours Tia!! > > I am overwhelmed right now. I am ready for CHARGE Syndrome to be done > now. I think I am in denial...like it really might have an obscure > cure. One would think that I have accepted this as part of our family. I > keep wondering when its going to fade away. I am sooooo impatient with > right now. And I feel so terrible about it. But I am at a loss. How > do I accept that this not going to fade or go away? I am in contact with > another mom whose daughter is following similar delevopment patterns like > . How do I encourage her when I feel at such a loss? Right now I > can't tell if she has " CHARGE " behaviours or what is going on. > > I am truly sad. > > I love this girl so much and I just do not know what to do, where to go, > or how to help her. > > Keeping up with life, this list, my job and my famliy as a whole... > > A vent for me but no one I know knows how I feel right now and I just > don't know where to go. I feel like I should be stronger.... > > A bad night...until tomorow.... > Colleen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Colleen- Aubrie's been driving me crazy lately with her " quirks " also. It's not " behaviors " as such -- I mean, nothing naughty or destructive or violent. Just difficult to maintain patience with sometimes. Not that I know exactly how you feel, but I think most of us can project ourselves into you spot if we haven't been there ourselves. Hang in. And keep venting if it helps. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Colleen- Aubrie's been driving me crazy lately with her " quirks " also. It's not " behaviors " as such -- I mean, nothing naughty or destructive or violent. Just difficult to maintain patience with sometimes. Not that I know exactly how you feel, but I think most of us can project ourselves into you spot if we haven't been there ourselves. Hang in. And keep venting if it helps. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Colleen- Aubrie's been driving me crazy lately with her " quirks " also. It's not " behaviors " as such -- I mean, nothing naughty or destructive or violent. Just difficult to maintain patience with sometimes. Not that I know exactly how you feel, but I think most of us can project ourselves into you spot if we haven't been there ourselves. Hang in. And keep venting if it helps. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Colleen, I've walk your road before, and have revisited it a few times.. even recently. Don't feel bad for one second. I have prayed that God take Meagan in her sleep because I felt I could not be the mommy she needed, and because I couldn't watch her suffer any longer. To this day, I still second guess myself....and it's been 17 months! You only have these feelings because of the deep love you carry for your child. I used to be so afraid to tell people I didn't want to be Meggy's mommy. But, I now realize that it is because I wanted the best for her, and I didn't think I could give that to her. You do what you can, and in your child's eyes, it IS the best. You will get overwhelmed, but that is what we are here for. CHARGE may not " fade away , but it will get better. You will get used to her, and she will even begin to appear " normal " to you. I hope that isn't offensive to anyone...just sharing what I have felt personally. -- Re: Just a Hi charge doesnt go it just cant or if it does then we r dead arent we now ive just confused my self coz even the dead person ahs charge coz thats wat the died of istn it maybe you cold go of mail for a while take a holiday this place is over helming i knwo or lurk sometimes i get a little overhelmeed by everyone in here and im a charger LOL so imagine soem of the newer parents their heads would be spinning of their necks hugs ellen > > Hi All, > Thank again for such a deep discussion. I did see you post DeeDee, > Thanks! > > And I got yours Tia!! > > I am overwhelmed right now. I am ready for CHARGE Syndrome to be done > now. I think I am in denial...like it really might have an obscure > cure. One would think that I have accepted this as part of our family. I > keep wondering when its going to fade away. I am sooooo impatient with > right now. And I feel so terrible about it. But I am at a loss. How > do I accept that this not going to fade or go away? I am in contact with > another mom whose daughter is following similar delevopment patterns like > . How do I encourage her when I feel at such a loss? Right now I > can't tell if she has " CHARGE " behaviours or what is going on. > > I am truly sad. > > I love this girl so much and I just do not know what to do, where to go, > or how to help her. > > Keeping up with life, this list, my job and my famliy as a whole... > > A vent for me but no one I know knows how I feel right now and I just > don't know where to go. I feel like I should be stronger.... > > A bad night...until tomorow.... > Colleen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 - Having had 2 family members I have prayed that they quietly die, I do know what you mean. It is a brave thing to admit, because it sometimes seems cold and uncaring, but the love for that person and wanting what is best for them drives that prayer, not a desire to have them gone. Hugs to you. Fortunately, I think Colleen's concerns are of a far different type - a child who is doing so well, has overcome so much, and then these " quirks " that sometimes get in the way and you just want it gone so it can be easier for your child in school and life as compared to wanting it easier for them medically when they are young. I am so glad you are part of the list. Kim > > Colleen, I've walk your road before, and have revisited it a few times.. > even recently. Don't feel bad for one second. I have prayed that God take > Meagan in her sleep because I felt I could not be the mommy she needed, and > because I couldn't watch her suffer any longer. To this day, I still second > guess myself....and it's been 17 months! You only have these feelings > because of the deep love you carry for your child. I used to be so afraid to > tell people I didn't want to be Meggy's mommy. But, I now realize that it is > because I wanted the best for her, and I didn't think I could give that to > her. You do what you can, and in your child's eyes, it IS the best. You will > get overwhelmed, but that is what we are here for. CHARGE may not " fade away > , but it will get better. You will get used to her, and she will even begin > to appear " normal " to you. I hope that isn't offensive to anyone...just > sharing what I have felt personally. > > > -- Re: Just a Hi > > charge doesnt go it just cant or if it does then we r dead arent we now ive > just confused my self coz even the dead person ahs charge coz thats wat the > died of istn it maybe you cold go of mail for a while take a holiday this > place is over helming i knwo or lurk sometimes i get a little overhelmeed by > everyone in here and im a charger LOL so imagine soem of the newer parents > their heads would be spinning of their necks hugs ellen > > >> >> Hi All, >> Thank again for such a deep discussion. I did see you post DeeDee, >> Thanks! >> >> And I got yours Tia!! >> >> I am overwhelmed right now. I am ready for CHARGE Syndrome to be done >> now. I think I am in denial...like it really might have an obscure >> cure. One would think that I have accepted this as part of our family. I >> keep wondering when its going to fade away. I am sooooo impatient with >> right now. And I feel so terrible about it. But I am at a loss. > How >> do I accept that this not going to fade or go away? I am in contact with >> another mom whose daughter is following similar delevopment patterns like >> . How do I encourage her when I feel at such a loss? Right now I >> can't tell if she has " CHARGE " behaviours or what is going on. >> >> I am truly sad. >> >> I love this girl so much and I just do not know what to do, where to go, >> or how to help her. >> >> Keeping up with life, this list, my job and my famliy as a whole... >> >> A vent for me but no one I know knows how I feel right now and I just >> don't know where to go. I feel like I should be stronger.... >> >> A bad night...until tomorow.... >> Colleen >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Kim/, You've just helped me understand my own thoughts at times. I love Carmen so much it hurts, and at times I find myself wishing this would all end for her and for me--I've felt terribly guilty for feeling that way, but absorb it and let it be the way I feel at that moment. However, I've never realized why I've felt that way and how it might be justified through love itself. Thank you--it is brave indeed, and so insightful to the human heart and to the struggles that those with special needs kids feel. B. > >> > >> Hi All, > >> Thank again for such a deep discussion. I did see you post DeeDee, > >> Thanks! > >> > >> And I got yours Tia!! > >> > >> I am overwhelmed right now. I am ready for CHARGE Syndrome to be done > >> now. I think I am in denial...like it really might have an obscure > >> cure. One would think that I have accepted this as part of our family. I > >> keep wondering when its going to fade away. I am sooooo impatient with > >> right now. And I feel so terrible about it. But I am at a loss. > > How > >> do I accept that this not going to fade or go away? I am in contact with > >> another mom whose daughter is following similar delevopment patterns like > >> . How do I encourage her when I feel at such a loss? Right now I > >> can't tell if she has " CHARGE " behaviours or what is going on. > >> > >> I am truly sad. > >> > >> I love this girl so much and I just do not know what to do, where to go, > >> or how to help her. > >> > >> Keeping up with life, this list, my job and my famliy as a whole... > >> > >> A vent for me but no one I know knows how I feel right now and I just > >> don't know where to go. I feel like I should be stronger.... > >> > >> A bad night...until tomorow.... > >> Colleen > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 - Those feelings are so hard to share -- but I think it's critical for our sanity to share them somewhere safe. I have one friend that I can tell all those " unmentionable " feelings with. And this is another safe place to share that. I think it is empowering and a relief for others to know that the thoughts they are so ashamed of are shared by others -- and are nothing to be ashamed of. When Aubrie was a baby and we were driving over 4 hrs round trip a few times a week for drs and therapies, I would cry and cry in the car and sometimes think it'd be best for my son and husband if we just had a terrible car crash. Now, I didn't really want that to happen and wasn't suicidal -- but the thought was there that we were just suffering and burdensome. Horrible way to feel. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Colleen, Ellen is right, this place is overwhelming at times. I am so glad I had a vacation. I am rejuvenated and can see the flowers through the trees again. Yes, life with a person who has CHARGE is never ending and is at times more difficult than people can understand. But but but... I am now looking back from where we were to where we are and I can honestly say I am a better person because I have a child who has CHARGE. Not only am I a better person, my family is closer than most, we focus on the real joys instead of the ones we perceive will make us happy, like things or money, and we can just be happy to be in this world together. The struggles are hard, so very hard that they take your breath away, but the joys are even higher and happier. Even with all that happy talk I also have to say that I don't think I would have made it this far, or that Patty wouldn't have made it this far if we hadn't had counseling. That has been imperative to all of us, and I am proud to say that. I am proud to say I am human, have been weak and have needed the help of others. And I am sure I will be weak again and will need to reach out again. How good is it that we can reach out! The only hard part was finding the right fit for me. Worse was finding the right one for Patty. If you feel like you can't go on anymore realize that is normal and you can get through it. Take it one day at a time. Don't look too far into the future or you will be overwhelmed. No one is God and knows the future. Heck, I haven't even been close. That's the fun of life. Then when all is quiet and your child is asleep look at her, really look at her and you will see the quiet joy, love and strength she has within her and you will be able to carry on. If all else fails, take a bath. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
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