I just read something that my wife forwarded to me from a yahoo group that she belongs to. The group is for other parents with daughters who have the same syndrome that my daughter has. What this mother wrote was so true to how I feel. It's the latter half of the letter that really got to me. I want so much for my daugher, and I try not to wish things for her form a selfish point of view.... (The conversations we may never have, hearing her tell me "I Love You Daddy", cheering for her at highschool/college graduation, walking her down the isle and giving her away to the love of her life at her wedding, hugging and laughing with my grandchildren......
Here is what I read that lead me to my rant:
Last night I drove up to Just for Kids and Nicole was awake... she was fussing and feisty... the nurse asked me if I wanted to give her a benydryl... to calm her down.. I said no this is probably the only exercise she gets.. and she's probably just raging against the world for giving her such an extreme challenge... The nurse said she is such a pretty child that she came in today and although Nicole wasn't on her shift she... held her for a while... Nicole is the same age as this nurses daughter... I thanked the nurse for doing this and then I talked to Nicole and started toI exercise her... by moving her arms and legs... she would resist as I moved her arms and as I pushed on her leg she would push against it... It didn't seem unpleasant to her just seemed like spotting someone at the gym while she did her thing... then I sat her up for a while... at first she arched her back and wanted back down but then she seemed to be ok with sitting... her head doesn't flop around so much and she's actually seeming to get some muscle tone in her arms and legs... the head she.. kind of balances it in about a 30 degree upward tilt and then when it goes out of balance flops forward... I held my hand in front of her face to keep her head from falling forward and she finally quieted down sitting here like this gazing at me.. kind of like... ok now what... I could see sleepiness come over her and after a few minutes laid her back... as she started to go to sleep she kept having recurring... jerks... like when you start to go to sleep and jerk as your nervous system goes to relaxation mode... only hers were recurring.. Watched her for about 15 more minutes as she went through this just to see if any of them would turn into seizures... I caressesd her head and prayed for her... and felt she is so damned vulnerable... not just a child with ordinary challenges... but a child with beauty and angelic qualities... but with extreme challenges... I wanted to cry and I wanted to just hold her and protect her from the world... she just continued to look at me with her one beautiful open eye.. Damn this... I am old... have lived my life... but she... has yet to see a sunset... to play with a toy bear.. to smell a Christmas Tree.. to torment a boy... to fall in love... to ... to... to.. And then she slept and... I had to leave...
.....I just needed to get it out...
peace
Here is what I read that lead me to my rant:
Last night I drove up to Just for Kids and Nicole was awake... she was fussing and feisty... the nurse asked me if I wanted to give her a benydryl... to calm her down.. I said no this is probably the only exercise she gets.. and she's probably just raging against the world for giving her such an extreme challenge... The nurse said she is such a pretty child that she came in today and although Nicole wasn't on her shift she... held her for a while... Nicole is the same age as this nurses daughter... I thanked the nurse for doing this and then I talked to Nicole and started toI exercise her... by moving her arms and legs... she would resist as I moved her arms and as I pushed on her leg she would push against it... It didn't seem unpleasant to her just seemed like spotting someone at the gym while she did her thing... then I sat her up for a while... at first she arched her back and wanted back down but then she seemed to be ok with sitting... her head doesn't flop around so much and she's actually seeming to get some muscle tone in her arms and legs... the head she.. kind of balances it in about a 30 degree upward tilt and then when it goes out of balance flops forward... I held my hand in front of her face to keep her head from falling forward and she finally quieted down sitting here like this gazing at me.. kind of like... ok now what... I could see sleepiness come over her and after a few minutes laid her back... as she started to go to sleep she kept having recurring... jerks... like when you start to go to sleep and jerk as your nervous system goes to relaxation mode... only hers were recurring.. Watched her for about 15 more minutes as she went through this just to see if any of them would turn into seizures... I caressesd her head and prayed for her... and felt she is so damned vulnerable... not just a child with ordinary challenges... but a child with beauty and angelic qualities... but with extreme challenges... I wanted to cry and I wanted to just hold her and protect her from the world... she just continued to look at me with her one beautiful open eye.. Damn this... I am old... have lived my life... but she... has yet to see a sunset... to play with a toy bear.. to smell a Christmas Tree.. to torment a boy... to fall in love... to ... to... to.. And then she slept and... I had to leave...
.....I just needed to get it out...
peace
