Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 Michele and , I know what you mean about the future. I have been doing this for 4 years now, which is by no means a long time, but in other ways it has been an eternity. I wish I could say that it gets easier but it just depends on your definition. Compared to the newborn days, Austin is much easier now medically. I think in that respect most parents would agree. Healthy kids are better prepared to do other things. I don't know if anybody here on the list has come across the day where things just all resolve and the family is " normal " . I think that the definition of " normal " just changes. Things continue to be as involved for Austin, we are just now involved in different things. We are really focused on education now where in the past it was therapy, therapy, therapy. Communication continues to be a key. How to get it and how to foster it so that Austin can have language--in whatever form it may take. Sometimes, I have to remind myself, my family and Austin's " Village " (this is what I call all of his helpers -- by the way, I think it really does " Take A Village " to raise our Charger's) that he is only four and that sometimes a four year old just doesn't want to do what we want him to do! :-) Anyway, I know this isn't the answer you are looking for but only time will tell us what the real answers are and we just have to keep up the hard work alongside our kids!! Take care, Jacque Clifton Austin's mom Rose Hill, KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 Michele, There are moments when it is easier, but I know that my mother (age 85) still worries about me and my siblings, and I worry all the time about my other 4 children as well as . I think it is part of parenting. But I have found that the CHARGE issues are not as constant in intensity, but are always there. Tim Hartshorne Michele Westmaas wrote: > > > I need a bit of encouragement about the future. Aubrie is doing so > well > in so many ways. Our biggest concern now is her growth and > development. Will there ever come a time when we can just " live " > without worrying about something? I wish I could just play with her > without having thoughts of therapy going thru my mind and what new > skill > I need to be coaxing out of her. And when people ask " How's Aubrie? " , > > wouldn't it be nice to say, " Same old, same old. Nothing new. " Or > just > rattle off all the new things she's doing as you would with a healthy > baby. Not rattling off her accomplishments with the feeling that > " it's > about time " . > > Has life gotten carefree for anyone? > > Michele > mom to Aubrie (16 mos) CHarGE and (7 yrs), wife to DJ, in IL > westml@... > > ---------------- > ------------------------------------------------------- > Is ONElist important to you? Has it changed your life? > http://www.onelist.com > Come visit our new web site and share with us your stories > ---------------------------------------------------------- > ------------- > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a > member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 Michele, I keep telling myself that by the time Jillian is in kindergarten, she will blend right in with the others, but in the back of my mind, I still have a fear of vision problems(as of now, we know of none) hearing problems, speech problems, etc,. I think no matter what is wrong with our kids, (even the healthy ones) we will worry. We are mom's (and Dads). It's our job. Heck, who even knows what my future may be, I could be stricken with cancer, so we never know what the future holds. Foley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 Michele, I know how you feel, I was talking to a good friend that I'd made in hospital who has a little baby with Di, and she was frustrated that things were going slowly and that her daughter was just starting to stand. She's worried that she is so delayed, she is 13 mos and standing holding onto things. As I sat there and listened, knowing how she felt, I decided not to tell her that at 14 mos, Kennedy is not even SITTING up yet. I did encourage her that her daughter wasn't too delayed if she was doing all that at 13 mos after all she'd been through though. I know this probably doesn't help much, but I do know how you feel... It'll come though, I do believe that, when she's ready, but I can't make my feelings go away when I get down sometimes about things like that. I think it's normal to feel worried about the future, etc. My two cents.. Mom to Kennedy 14 mos old CHARGEr, 9, 7 and wife to Graeme New Brunswick Canada gweir@... http://www.geocities.com/SunsetStrip/Palms/5716/index.html >> >> >> I need a bit of encouragement about the future. Aubrie is doing so >> well >> in so many ways. Our biggest concern now is her growth and >> development. Will there ever come a time when we can just " live " >> without worrying about something? I wish I could just play with her >> without having thoughts of therapy going thru my mind and what new >> skill >> I need to be coaxing out of her. And when people ask " How's Aubrie? " , >> >> wouldn't it be nice to say, " Same old, same old. Nothing new. " Or >> just >> rattle off all the new things she's doing as you would with a healthy >> baby. Not rattling off her accomplishments with the feeling that >> " it's >> about time " . >> >> Has life gotten carefree for anyone? >> >> Michele >> mom to Aubrie (16 mos) CHarGE and (7 yrs), wife to DJ, in IL >> westml@... >> >> ---------------- >> ------------------------------------------------------- >> Is ONElist important to you? Has it changed your life? >> http://www.onelist.com >> Come visit our new web site and share with us your stories >> ---------------------------------------------------------- >> ------------- >> 4th International CHARGE Syndrome Conference, Houston, Texas, July >> 23-25, 1999. >> For information about the CHARGE Syndrome Foundation or to become a >> member please contact marion@.... > > > > >------------------------------------------------------------------------ >Have you visited our new web site? >http://www.onelist.com >Onelist: Helping to create Internet communities >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 Michele, I know what you mean. I constantly worry about Jack's future but then again I also worry about Elise's too. like Tim said I guess it's just part of being a mum. I don't think you ever stop worrying. I also get quite frustrated sometimes when people ask how Jack is. Most of the time I just say " he's getting on fine " as I really can't be bothered going into all the details. Anyway, the people who really know Jack i.e. my close friends and family know all the gorey details and I know that they are genuinely interested. Sometimes I think other people ask out of politeness but don't really want to know all the details. Anyway, sorry I'm not much help but I do feel the same way. I just don't know what to do about it!! Elaine mum to Elise(6yrs) & Jack(20mths) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 1999 Report Share Posted April 7, 1999 Michele Westmaas wrote: > > > > I need a bit of encouragement about the future. Aubrie is doing so well > in so many ways. Our biggest concern now is her growth and > development. Will there ever come a time when we can just " live " > without worrying about something? I wish I could just play with her > without having thoughts of therapy going thru my mind and what new skill > I need to be coaxing out of her. And when people ask " How's Aubrie? " , > wouldn't it be nice to say, " Same old, same old. Nothing new. " Or just > rattle off all the new things she's doing as you would with a healthy > baby. Not rattling off her accomplishments with the feeling that " it's > about time " . > > Has life gotten carefree for anyone? > > Michele > mom to Aubrie (16 mos) CHarGE and (7 yrs), wife to DJ, in IL > westml@... > Michele, I have to say, most times I just let try to be himself and be a kid, without that therapy junk in the way. Yes of course we work with him daily on speech and walking and of course my all time favorite, eating, but I have decided not to get too hung up on it. When I look at my son, I see an adorable little boy, who will someday, grow up to either teach other handicapped kids or work in genetics or some other type of research and maybe figure out what happened to him. Maybe I am reaching high, I don't know, but this is how I feel at the moment. He has such an understanding of everything, that the walking and eating and slow down of motor skills really doesn't bother me too much, and I feel if the mental capability is there than everything else will come. Keep your spirits up and try to enjoy the things Aubrie does just like you did with you son. Debbie Matasker mom to 23 mths! already, 4 Quote Link to comment Share on other sites More sharing options...
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