finding my ways with frederick's ataxia

actually it is about finding my ways with the circumstances of life, all of them put together, but why i name only frederick's ataxia, it is probably because this one is the biggest challenge that life has given me........to my beloved daughter, to the angel who would have been a pretty n chirpy young girl by now..........she is still pretty, but this FA is torturing her to no limits.......her breathing is becoming more n more difficult, her tongue more paralyzed, but she is stronger than me i suppose.....trying to tell me something,which my senses are not able to decipher...........and when i talk to her, anything and everything , she likes it and one very significant development i can see is , that now she knows that she can do something on her own to get over with a coughing bout or even a seizure..........during such discomforts i have been watching her from a distance and telling her ....mithi will push it hard............and i can see the change in her approach, as earlier she would get annoyed and teary eyed, visibly shaken and extremely exhausted after every such bout.........now she fights her way through it and though her face gets red n eyes teary due to the impact, she feels relieved after it and contented at her little victory...........i cheer her up and do what she likes the most......kissing all over her face.

i am not trying to write a literary piece, but there is definitely a purpose, writing all this is helping me find new ways...........the most important being, how i learnt to get doing all this writing blogs which earlier i thought was impossible cuz mithi will be neglected and i will not be able to keep undivided attention towards her...............earlier i used to keep her next to my chair and physically touching her with my elbow or feet so that she knows that mama is close to her..........meanwhile typing on the computer and talking to her in between , fearing she might feel isolated or neglected...........now when i am done with her daily chores, i tell her that it is time to rest for mithi and mama will do her work.......she understands when i tell her that mama will come to you whenever she calls..........sometimes she makes a sound to call me n sometimes it is just a harried breathing pattern that i have to catch, but now she knows that mama will come when she needs her.

i just pray this bloody FA does not give her any more pain and that she becomes stronger to fight with it.............my purpose to write all this is partially directed towards other people who are affected with FA or have a family member who is affected with it.......i find many people who google search for frederick's ataxia, come to this blog and read it......i really would like to exchange ideas and solutions and suggestions with them as we can create a dialogue between us and may get benefited....i request all those people to post a comment on this blog and let me know more.....any suggestions are more than welcome.......i would love to get sugestions where i am wrong or what else can be done to improve the living conditions of a FA patient..............querries are also welcome.
i take a great care of nutrition in her food and intend to share what type of food i give to her............which is keeping her as comfortable as can be.........the problems of a sedentary patient like her are many and i would really like to make a link with others in the same situation.............i would like to know how it can be dealt with in a better way or if i may help others...............please let me know.........