Friday, February 11, 2011

"She seems so normal..."



When I was pregnant I was so excited each time. A new child is a world of endless possibilities! I often have joked on this blog that Harmon will be a world famous food critic b/c he is so picky about his food. Callum will be a star quarterback b/c already he can throw a mean ball. My dreams for Rachel are no less. CEO, prima ballerina for the NYC Ballet, first female President of the United States... you name it there is nothing my little ones, all of them, can't do!

Now the future seems fuzzier to me. I just got out of a meeting explaining that I need to register Rachel for long term community resources and care. Care that she might need in adulthood. I don't think that possibility even dawned on me. That she could need help even into adulthood. After all why would the future CEO of a Fortune 500 need disability services. She isn't disabled when I see her. When I see her she is perfect. People tell me "she seems so normal" and I always want to tell them: she is better than normal... she is amazing!

Just a month ago I was anxiously looking for summer programs like gymnastics to get her involved in and now she will be doing "special programs" instead so she can learn to use her body better and not be in so much pain. I have to fill out forms for Social Security Disability, DD Waiver Services, Early Intervention, etc. Not fun! I keep thinking this is a dream and I'm going to wake up from it but it is serious and it is life long altering condition for her. I don't think I want to wrap my mind about all of that.

I know tonight I promise I will work on "getting my loving on" as I talked about last night and try to put this behind me for a least a day or two. It is hard b/c every time I'm coping than I get hit with more news. Chris and I need help more than ever and so I'm more grateful than ever for the friends who have come by dropping off cookies or giving us virtual support. As I always say, I can't let myself get too down b/c Rachel isn't down or depressed. She is smiling, even as she struggles and looks in pain she still smiles! That is what I need to do too. Rachel is filled with endless possibilities CP and all!
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1 comment:

  1. AmyFebruary 13, 2011 at 8:25 PM

    She is perfect. And wonderful. And is a fighter. She can still be all those things you hope for her. She will just have to fight harder than anyone else. And you know she is a fighter.

    I read a blog today that was very poignant. It helped me out a lot. I think it might help you, as well.
    http://jennymatlock.blogspot.com/2011/02/practicing-for-horrible-things.html
    I love you. Keep up the courage. Remember, President Hinckley promised that if we keep on going, it will all work out. Find the smiles and the strength to keep going and it will all work out in the end. Amen to that!

    ReplyDelete

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Friday, February 11, 2011

"She seems so normal..."



When I was pregnant I was so excited each time. A new child is a world of endless possibilities! I often have joked on this blog that Harmon will be a world famous food critic b/c he is so picky about his food. Callum will be a star quarterback b/c already he can throw a mean ball. My dreams for Rachel are no less. CEO, prima ballerina for the NYC Ballet, first female President of the United States... you name it there is nothing my little ones, all of them, can't do!

Now the future seems fuzzier to me. I just got out of a meeting explaining that I need to register Rachel for long term community resources and care. Care that she might need in adulthood. I don't think that possibility even dawned on me. That she could need help even into adulthood. After all why would the future CEO of a Fortune 500 need disability services. She isn't disabled when I see her. When I see her she is perfect. People tell me "she seems so normal" and I always want to tell them: she is better than normal... she is amazing!

Just a month ago I was anxiously looking for summer programs like gymnastics to get her involved in and now she will be doing "special programs" instead so she can learn to use her body better and not be in so much pain. I have to fill out forms for Social Security Disability, DD Waiver Services, Early Intervention, etc. Not fun! I keep thinking this is a dream and I'm going to wake up from it but it is serious and it is life long altering condition for her. I don't think I want to wrap my mind about all of that.

I know tonight I promise I will work on "getting my loving on" as I talked about last night and try to put this behind me for a least a day or two. It is hard b/c every time I'm coping than I get hit with more news. Chris and I need help more than ever and so I'm more grateful than ever for the friends who have come by dropping off cookies or giving us virtual support. As I always say, I can't let myself get too down b/c Rachel isn't down or depressed. She is smiling, even as she struggles and looks in pain she still smiles! That is what I need to do too. Rachel is filled with endless possibilities CP and all!
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1 comment:

  1. AmyFebruary 13, 2011 at 8:25 PM

    She is perfect. And wonderful. And is a fighter. She can still be all those things you hope for her. She will just have to fight harder than anyone else. And you know she is a fighter.

    I read a blog today that was very poignant. It helped me out a lot. I think it might help you, as well.
    http://jennymatlock.blogspot.com/2011/02/practicing-for-horrible-things.html
    I love you. Keep up the courage. Remember, President Hinckley promised that if we keep on going, it will all work out. Find the smiles and the strength to keep going and it will all work out in the end. Amen to that!

    ReplyDelete

Subscribe to: Post Comments (Atom)