Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 i am sorry but the futre does look so bleek for my grandaughter caitlyn since i came on this sight i have learnt alot but getting rather worried i have heard of sleep partys when the chargers dont need much sleep good and bad things about the findo opp that caitlyn will be hving shortly and autism to in charge children and bullying at scool i know caitlyn is only nearly 1 year old but we have think about there futre s it all sounds like this year all over again fighting for everything for them it is so hard in the north east you get no help or support my daughter is only 19 years old she is the mum of caitlyn though kellie does a fantastic job and caitlyn is doing well i dont think kellie could cope with another year like this one i know they say it gets easyer but they have not sorted out her vision or hearing yet i know it can take years to totaly understand the full exent of a childs vision and hearing but life is like a roller coster up one day down the next good news one day bad the next caitlyn is blind in one eye she a cyst on the other eye and colinbolma in both eyes of the retner they dont know how she sees what she sees they just say she is making good use of what ever vusion she has well i will stop moaning and going on this sight is such a help and thanks to all in charge land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 Rita, you mentioned Northeast--where are you and Caitlyn? pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 The future will certainly e interesting, I think the nissen funduplication will be okay, it was a big turning point for Cai, think positively it will help. I am amazed at the medical advances that take place, so even if it looks bleak now, it may be different in a year. IanW ritaskeoch wrote: > > > i am sorry but the futre does look so bleek for my grandaughter caitlyn > since i came on this sight i have learnt alot but getting rather Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 Please don't get too overwhelmed by the " too much information " that is going on with this email group. In my opinion, the first few years are so overwhelming but you have to focus on the today - in a few years you can worry about all this other stuff! This is a wonderful support group - and you don't have to read everything if it just makes you worry. Just focus on the messages that will help you! CHARGE is one heck of a roller coaster and the ups are great--like my daughter signing " more horse " because she wants to be bounced on my legs! Just take it day by day - especially the first few years! Lori Myers Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (4). Dallas, Texas caitlyn s charge i am sorry but the futre does look so bleek for my grandaughter caitlyn since i came on this sight i have learnt alot but getting rather worried i have heard of sleep partys when the chargers dont need much sleep good and bad things about the findo opp that caitlyn will be hving shortly and autism to in charge children and bullying at scool i know caitlyn is only nearly 1 year old but we have think about there futre s it all sounds like this year all over again fighting for everything for them it is so hard in the north east you get no help or support my daughter is only 19 years old she is the mum of caitlyn though kellie does a fantastic job and caitlyn is doing well i dont think kellie could cope with another year like this one i know they say it gets easyer but they have not sorted out her vision or hearing yet i know it can take years to totaly understand the full exent of a childs vision and hearing but life is like a roller coster up one day down the next good news one day bad the next caitlyn is blind in one eye she a cyst on the other eye and colinbolma in both eyes of the retner they dont know how she sees what she sees they just say she is making good use of what ever vusion she has well i will stop moaning and going on this sight is such a help and thanks to all in charge land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Rita- Yes, it can be very bleak. The best thing you can do is find a positive attitude and let that carry over to your daughter and granddaughter. We can't change the bad parts, but we can change our attitude towards it. We all have our pity-party moments when we are overwhelmed with it all. But we let it pass over and through us and then on we go. I think of it like this. My reality has some very beautiful parts, but it also has some very dark corners full of huge dust-bunnies and cobwebs. In order to face each day, I shine the spot light on the good stuff. But there are times when I have to shine the light in the corners and deal with what I find there. Being able to shift the spotlight from area to area has been a skill I've had to learn - and still work on. It's emotionally very difficult. But we get better and better at it over time. Life in CHARGEland is definitely a roller coaster. Life is always a roller coaster. But I think our highs are higher and our lows are lower than a typical life coaster. Hang in there. I know you can't imagine how it will ever be ok. But trust that it will. Somehow, you and Kellie and Caitlyn will get to a place that feels " ok " . That ok might not look like any ok you've ever seen before. And you may not know how you got there. But you will. You can't make it happen. All you can do is face each obstacle with all the courage you can muster, enjoy every good moment, and keep your mind and heart open. And trust that it will come. Michele W Aubrie's mom 9 yrs CHaRgE and 15 yrs, wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Very true. Very inspirational. This applies to all of us here. Thank you Liz -- RE: caitlyn s charge Rita- Yes, it can be very bleak. The best thing you can do is find a positive attitude and let that carry over to your daughter and granddaughter. We can't change the bad parts, but we can change our attitude towards it. We all have our pity-party moments when we are overwhelmed with it all. But we let it pass over and through us and then on we go. I think of it like this. My reality has some very beautiful parts, but it also has some very dark corners full of huge dust-bunnies and cobwebs. In order to face each day, I shine the spot light on the good stuff. But there are times when I have to shine the light in the corners and deal with what I find there. Being able to shift the spotlight from area to area has been a skill I've had to learn - and still work on. It's emotionally very difficult. But we get better and better at it over time. Life in CHARGEland is definitely a roller coaster. Life is always a roller coaster. But I think our highs are higher and our lows are lower than a typical life coaster. Hang in there. I know you can't imagine how it will ever be ok. But trust that it will. Somehow, you and Kellie and Caitlyn will get to a place that feels " ok " . That ok might not look like any ok you've ever seen before. And you may not know how you got there. But you will. You can't make it happen. All you can do is face each obstacle with all the courage you can muster, enjoy every good moment, and keep your mind and heart open. And trust that it will come. Michele W Aubrie's mom 9 yrs CHaRgE and 15 yrs, wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 we r allwasy in a roler coaster but it gets easier as u get used to dealing with it all i reckon LOL > > Very true. Very inspirational. This applies to all of us here. > > Thank you > > Liz > > -- RE: caitlyn s charge > > Rita- > > Yes, it can be very bleak. The best thing you can do is find a positive > attitude and let that carry over to your daughter and granddaughter. We > can't change the bad parts, but we can change our attitude towards it. We > all have our pity-party moments when we are overwhelmed with it all. But > we > let it pass over and through us and then on we go. > > I think of it like this. My reality has some very beautiful parts, but it > also has some very dark corners full of huge dust-bunnies and cobwebs. In > order to face each day, I shine the spot light on the good stuff. But > there > are times when I have to shine the light in the corners and deal with what > I > find there. Being able to shift the spotlight from area to area has been a > > skill I've had to learn - and still work on. It's emotionally very > difficult. But we get better and better at it over time. > > Life in CHARGEland is definitely a roller coaster. Life is always a roller > > coaster. But I think our highs are higher and our lows are lower than a > typical life coaster. > > Hang in there. I know you can't imagine how it will ever be ok. But trust > that it will. Somehow, you and Kellie and Caitlyn will get to a place that > > feels " ok " . That ok might not look like any ok you've ever seen before. > And you may not know how you got there. But you will. You can't make it > happen. All you can do is face each obstacle with all the courage you can > muster, enjoy every good moment, and keep your mind and heart open. And > trust that it will come. > > Michele W > Aubrie's mom 9 yrs CHaRgE and 15 yrs, wife to DJ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Beautiful posting, Michele. ina --- Michele Westmaas wrote: > Rita- > > Yes, it can be very bleak. The best thing you can > do is find a positive > attitude and let that carry over to your daughter > and granddaughter. We > can't change the bad parts, but we can change our > attitude towards it. We > all have our pity-party moments when we are > overwhelmed with it all. But we > let it pass over and through us and then on we go. > > > > I think of it like this. My reality has some very > beautiful parts, but it > also has some very dark corners full of huge > dust-bunnies and cobwebs. In > order to face each day, I shine the spot light on > the good stuff. But there > are times when I have to shine the light in the > corners and deal with what I > find there. Being able to shift the spotlight from > area to area has been a > skill I've had to learn - and still work on. It's > emotionally very > difficult. But we get better and better at it over > time. > > > > Life in CHARGEland is definitely a roller coaster. > Life is always a roller > coaster. But I think our highs are higher and our > lows are lower than a > typical life coaster. > > > > Hang in there. I know you can't imagine how it will > ever be ok. But trust > that it will. Somehow, you and Kellie and Caitlyn > will get to a place that > feels " ok " . That ok might not look like any ok > you've ever seen before. > And you may not know how you got there. But you > will. You can't make it > happen. All you can do is face each obstacle with > all the courage you can > muster, enjoy every good moment, and keep your mind > and heart open. And > trust that it will come. > > > > Michele W > Aubrie's mom 9 yrs CHaRgE and 15 yrs, wife to > DJ > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Want to start your own business? Learn how on Yahoo! Small Business. http://smallbusiness.yahoo.com/r-index Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 hi we are from chester/le/street co durham were are you from do you know any one from north east > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 hi thanks ian gues i just felt sorry for caitlyn and kellie every thing is so slow and most off the time at a stand still but you have to remain possitive eh hopefully things can only get better for all charge children eh rita hows cai > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 hi yes it is centianly like a roller coaster caitlyn is waving now to every one and every thing she also started to clap her hands just wish this findo opp was over but then in jan she is getting her iars draind and gromits put in which caitlyns mum had to have done so it should improve caitlyns hearing which is nil at the moment she is also getting some special boots made for her so thats a big improvment how is your little charger doing thanks rita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 hi yes i am usually a very strong person i watched my mum die of cancer when kellie my oldest child was not even one year old ii had to face life life without a mum and god was it hard then when kellie was 16 my father died of cancer to i was his main carer so over the years i have learned to become hard but with kellie only been 19 i feel like i have to fight for jer and caitlyn and i still mother kellie she has learned from me to be strong she allways tells me its only with my strenght she gets through every day but i feel like caitlyns mum to i feel every thing kellie feels the fustrasion i try to sheild kellie i give her hope when i might not have any but i never let her know that i have learnd through life to be strong for people and i will always be strong for kellie she will never see me give up or get down i have to be strong for her or she would crack i see kellie every day even if its only for 1 hr but she knows she hsa just got to pick up the phone and we will be there for her 24/7 and its through this she can go on dont worry i make keep her strong even though i dont know how she gets through each day but one smile a wave from caitlyn makes every day worth while thanks for your kind thopughts rita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Rita- What a fabulous gift you are giving to Kellie and Caitlyn by being there for them! So many people find that their extended family (even parents) are not accepting and supportive of their child with CHARGE. How awful to feel alone like that. Your support and strength will truly get them through. My mom has provided that for me - and I can't begin to imagine life without that support. Michele W Aubrie's mom _____ From: CHARGE [mailto:CHARGE ] On Behalf Of ritaskeoch Sent: Monday, December 11, 2006 4:26 PM To: CHARGE Subject: Re: caitlyn s charge hi yes i am usually a very strong person i watched my mum die of cancer when kellie my oldest child was not even one year old ii had to face life life without a mum and god was it hard then when kellie was 16 my father died of cancer to i was his main carer so over the years i have learned to become hard but with kellie only been 19 i feel like i have to fight for jer and caitlyn and i still mother kellie she has learned from me to be strong she allways tells me its only with my strenght she gets through every day but i feel like caitlyns mum to i feel every thing kellie feels the fustrasion i try to sheild kellie i give her hope when i might not have any but i never let her know that i have learnd through life to be strong for people and i will always be strong for kellie she will never see me give up or get down i have to be strong for her or she would crack i see kellie every day even if its only for 1 hr but she knows she hsa just got to pick up the phone and we will be there for her 24/7 and its through this she can go on dont worry i make keep her strong even though i dont know how she gets through each day but one smile a wave from caitlyn makes every day worth while thanks for your kind thopughts rita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Hi , I live in New England--Boston, MA. When you said North East, I was thinking up here. But youare talking Durham, NC? If not, what state do you live in? pam Re: caitlyn s charge hi we are from chester/le/street co durham were are you from do you know any one from north east > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Hi Rita, Cai is doing fine, but he had some injections yesterday, if ever I have seen a glance that spoke volumes, it was the look he gave the doctor after the second jab. Then last night the night nurse forgot to open the valve for his food to get pumped in, the machine didn' alarm and pumped, but the milk stayed in the bag, poor little mite was starving hungry when I discovered it. Ian ritaskeoch wrote: > > > hi thanks ian gues i just felt sorry for caitlyn and kellie every thing > is so slow and most off the time at a stand still but you have to > remain possitive eh hopefully things can only get better for all charge > children eh rita hows cai > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Pam Rita's from over here. Durham (the city and county) is in the NE of England. Best wishes Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 and beautiful country to over ther emums got friends in cornwal never been there but have seen pics and alot of english citys shaire aussie names like brighton and exectro and places like that > > Pam > > Rita's from over here. Durham (the city and county) is in the NE of > England. > > Best wishes > > Simon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 oh thought ian rote that but yes love to meet u all simon u no my cousins called simon to LOL > > and beautiful country to over ther emums got friends in cornwal never been > there but have seen pics and alot of english citys shaire aussie names like > brighton and exectro and places like that > > > > > > Pam > > > > Rita's from over here. Durham (the city and county) is in the NE of > > England. > > > > Best wishes > > > > Simon > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.