Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 I just want you to know that what you are feeling, WE HAVE ALL FELT! If anyone says differently, than they are full of baloney :0)  There are times when I feel exactly like you do...it happens. Don't let anyone tell you it's wrong, because it's not. Ds or any diagnosis is hard to take sometimes. There is not one person who wishes your daughter did not have Ds other than you. If I could cure , I would. I don't believe Ds is who she is...I have raised her the same way regardless of her diagnosis. We do a protocol called Changing Minds Foundation and most people don't agree with what I do, but that's okay. I do what I do in the best interest of my child, not anyone else's.  You keep your head up and be proud that you reached out for help...that's HARD!  Much love! Graham Kay Independent Sr. Beauty Consultant 832-816-7992 www.marykay.com/jendmoyers ________________________________ From: gratitudehomeschool <gratitudehomeschool@...> Sent: Friday, January 13, 2012 10:54 AM Subject: Joy Thread.  The replies mostly were very helpful. I feel a need to defend myself though! I do have A LOT of Joy in my life from my faith in GOD. I do have A LOT of love for my daughter with DS. Her DS though is a daily trial that wears on the joy, my faith, and our family. She is an amazing person. She would be a girl version of my second son if her body was healthy. I cry when I see her frustration at not being able to 'do' what she wants to do and thinks of doing. I cry when she can not get the words out that she wants to say. Her internal frustration is difficult for me to watch. Her occasional aggression, that comes from the frustration, is difficult to watch. Is she happy a lot of the time. Of course! Is our family without any joy. NO! We have a lot of JOY; but our joy does not come from DS. Our joy comes from the LORD and DS is a daily strain on it. I wrote the threads because DS is taking a toll on our family and on her. I care and love her deeply. Deeply enough to wish she had a healthy body so that she could express all that she has and is inside. I know DS can not be helped, but I would do anything and give anything to give her a body that functioned. You are an amazing group of people, and over all I really was touched deeply by your sharing and stories. Over all, they were helpful. Blessings, Carin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 Hi ! How long have you been using protocol? Have you noticed a difference? I just looked at their web-site. One of my most recent questions has been the question of whether or not DS is a degenerative ??? The reason I ask is that the first 4 - 6 months our dd now 2, was completely normal. Completely. She even looked normal. Normal muscle tone, rolled on her side, sat on laps, responded to name, found her feet, etc..etc..etc. She even said her first word at four months. Then it began to slow, but it wasn't until the second year that DS was completely obvious. Now she talks less than she did at one. She took a little longer to learn to crawl, but has been on the verge of walking for a year. It just seems like it is slowing down to me, and it makes me wonder what is really going on at a biological level. Thank you for your message . I have never met a mom in person with a DS child who wasn't extremely positive about its blessings. A bit tough on us new moms... who are still processing the grief. For me the grief process has been very slow. Partly because the first year she progressed.. sentences, crawling, moving, etc. Partly because of surgeries. The closer she gets to her third Birthday without walking the harder it has become. So thank you for your kind words. God Bless, Carin > > I just want you to know that what you are feeling, WE HAVE ALL FELT! If anyone says differently, than they are full of baloney :0) >  > There are times when I feel exactly like you do...it happens. Don't let anyone tell you it's wrong, because it's not. Ds or any diagnosis is hard to take sometimes. There is not one person who wishes your daughter did not have Ds other than you. If I could cure , I would. I don't believe Ds is who she is...I have raised her the same way regardless of her diagnosis. We do a protocol called Changing Minds Foundation and most people don't agree with what I do, but that's okay. I do what I do in the best interest of my child, not anyone else's. >  > You keep your head up and be proud that you reached out for help...that's HARD! >  > Much love! > > Graham > Kay Independent Sr. Beauty Consultant > 832-816-7992 > www.marykay.com/jendmoyers > > > ________________________________ > From: gratitudehomeschool <gratitudehomeschool@...> > > Sent: Friday, January 13, 2012 10:54 AM > Subject: Joy Thread. > > > >  > > The replies mostly were very helpful. > > I feel a need to defend myself though! > > I do have A LOT of Joy in my life from my faith in GOD. I do have A LOT of love for my daughter with DS. > > Her DS though is a daily trial that wears on the joy, my faith, and our family. She is an amazing person. She would be a girl version of my second son if her body was healthy. I cry when I see her frustration at not being able to 'do' what she wants to do and thinks of doing. I cry when she can not get the words out that she wants to say. Her internal frustration is difficult for me to watch. Her occasional aggression, that comes from the frustration, is difficult to watch. Is she happy a lot of the time. Of course! Is our family without any joy. NO! We have a lot of JOY; but our joy does not come from DS. Our joy comes from the LORD and DS is a daily strain on it. I wrote the threads because DS is taking a toll on our family and on her. I care and love her deeply. Deeply enough to wish she had a healthy body so that she could express all that she has and is inside. I know DS can not be helped, but I would do anything and give anything to > give her a body that functioned. > > You are an amazing group of people, and over all I really was touched deeply by your sharing and stories. Over all, they were helpful. > > Blessings, > Carin > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2012 Report Share Posted January 14, 2012 I TOTALLY get that!! And I do feel that way at times. I am not a big fan of DS at all. I do not see it as something wonderful or something I wish on myself. I do get very sad watching my daughter struggle at times to do what SHE wants... to express herself. No question. I deal with it by finding ways for her to be the best she can be, find her the tools and means to do what she wants AND working hard to raise money for research to find TREATMENTS that will offer real help for the cognitive/tone/speech issues she is battling. http://www.dsrtf.org/ If there were a total, safe cure right now. She would be FIRST in line :-) I would miss her the way she is now, but I would never dream of keeping her this way for ME. DS is a disease. I will always be fighting it and looking for a cure. This is not a popular view in the DS community, but it's mine. And I DO Love my daughter and I am also very, very PROUD of her. You can have all those feelings at one time and be perfectly sane and rational. Carol Mom to , 10!!!! *Club Layton* <http://clublayton.blogspot.com/> Where games are played, and friends are made! *A big THANK you to :* Layton Athletics <http://laytonathletics.com/> 5402 Austin Court Ringwood, IL 60072-9404 (815) 728-9700 *for their generous *donation* of their building for our activities!!* On Fri, Jan 13, 2012 at 10:54 AM, gratitudehomeschool < gratitudehomeschool@...> wrote: > ** > > > The replies mostly were very helpful. > > I feel a need to defend myself though! > > I do have A LOT of Joy in my life from my faith in GOD. I do have A LOT of > love for my daughter with DS. > > Her DS though is a daily trial that wears on the joy, my faith, and our > family. She is an amazing person. She would be a girl version of my second > son if her body was healthy. I cry when I see her frustration at not being > able to 'do' what she wants to do and thinks of doing. I cry when she can > not get the words out that she wants to say. Her internal frustration is > difficult for me to watch. Her occasional aggression, that comes from the > frustration, is difficult to watch. Is she happy a lot of the time. Of > course! Is our family without any joy. NO! We have a lot of JOY; but our > joy does not come from DS. Our joy comes from the LORD and DS is a daily > strain on it. I wrote the threads because DS is taking a toll on our family > and on her. I care and love her deeply. Deeply enough to wish she had a > healthy body so that she could express all that she has and is inside. I > know DS can not be helped, but I would do anything and give anything to > give her a body that functioned. > > You are an amazing group of people, and over all I really was touched > deeply by your sharing and stories. Over all, they were helpful. > > Blessings, > Carin > > > Quote Link to comment Share on other sites More sharing options...
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