Guest guest Posted January 14, 2012 Report Share Posted January 14, 2012 I truly love that while we all have the commonness of our precious children who happen to have ds, we also have our individual feelings, emotions, expectations, and life experiences. We, like our kids with ds, are unique in our views. Good for us. This thread has made me re-appreciate my girl whom I adore so much. I value and honor all of your views - some I share and some I don't...but I nonetheless value and honor them. What I hope everyone either already gets or can get to is a place of peace in each person's heart regarding our children. Which doesn't mean accepting ds or not accepting ds, but rather feeling at peace that your child is who he/she is - hopefully we shepherd our kids to the best of our imperfect abilities and cherish what they can and cannot do. My heart aches to the point of no sleep at times over my daughter's lack of a good social life - it eats me up....but in 2012, I'm going to conquer it or die trying. I will probably never be truly happy until my kid is out of school - that has been a nightmare for us a lot of the time - not always, but often enough. Her heart defects, surgeries, therapies, etc have taken an enormous toll on me/our family...but I still feel nothing but gratitude for the gift of my daughter and her Down syndrome genes. We live in a world that worships so much of quick, rapid, perfect...folks spend so much time comparing/contrasting themselves and their children (I call it " deficit thinking " ) blah, blah, blah...there is much to be learned from the one whose abilities are not as much as we parents would wish for for our children. And speaking strictly for myself, I find a multitude of blessings from my kid due to the fact she is pure love - the rest can be good, bad, heartbreakingly hard, funny, awful...you get the point. But for pure love, she's the bomb. She lives it, receives it, gives it, is it. I am so lucky to witness what she does and be her mom. I'll take the ds. She is who she is because of and in spite of it. I sincerely pray for peace and joy in all of our hearts. We are in this together. Godspeed always, Eleanor On Jan 14, 2012, at 11:02 AM, Carol AnCel wrote: > 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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