Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Hi Crystal! The part I like the best, after seeing you and Eva, was the feeling Ashworth expressed: " We made it. We can do this. " You are a " Supermama " , as are all our Charge Mom's. ;-) in Ma. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 About 2 weeks ago we had a playdate for EI and the Chicago Tribune was there. Well today it was in the Metro section with our picture. Its so cool the 1st line has CHARGE Syndrome in it, I was so happy to see that!! Its on Eva's site along with a link incase you can't read the small print... http://www.babysites.com/sites/crystalm1476/ ID: EvaNichole Password: Butterfly Thanks, Crystal and Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 The article looks great - love that picture of you too! You can't get to the Chicago Tribune link - you have to be a registered member... www.chargesyndrome.info > > About 2 weeks ago we had a playdate for EI and the Chicago Tribune was > there. Well today it was in the Metro section with our picture. Its so > cool the 1st line has CHARGE Syndrome in it, I was so happy to see > that!! > Its on Eva's site along with a link incase you can't read the small > print... > http://www.babysites.com/sites/crystalm1476/ > ID: EvaNichole > Password: Butterfly > > Thanks, > Crystal and Eva > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Cool!! Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of supermama95 Sent: Tuesday, November 14, 2006 9:57 AM To: CHARGE Subject: Eva is in the newspaper!! About 2 weeks ago we had a playdate for EI and the Chicago Tribune was there. Well today it was in the Metro section with our picture. Its so cool the 1st line has CHARGE Syndrome in it, I was so happy to see that!! Its on Eva's site along with a link incase you can't read the small print... http://www.babysite <http://www.babysites.com/sites/crystalm1476/> s.com/sites/crystalm1476/ ID: EvaNichole Password: Butterfly Thanks, Crystal and Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 To register to their link it doesnt cost anything. I did just so I could read it...LOL! Crystal > > > > About 2 weeks ago we had a playdate for EI and the Chicago Tribune was > > there. Well today it was in the Metro section with our picture. Its so > > cool the 1st line has CHARGE Syndrome in it, I was so happy to see > > that!! > > Its on Eva's site along with a link incase you can't read the small > > print... > > http://www.babysites.com/sites/crystalm1476/ > > ID: EvaNichole > > Password: Butterfly > > > > Thanks, > > Crystal and Eva > > > > > > > > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Thanks! I liked that too, he is such a great man and he loves all the kids he sees. Since I have to take my 3 year old with me also he helps me with him. Crystal and Eva > > Hi Crystal! > The part I like the best, after seeing you and Eva, was the feeling > Ashworth expressed: > > " We made it. We can do this. " > > You are a " Supermama " , as are all our Charge Mom's. > > ;-) > in Ma. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 Hey I think this is the same link i got just now about Eva being at that play place. Thats really cool! One thing though that makes me sad is how everyone focuses on kids and will support kids with dissabilities but once they get past the kid stage into adulthood, noone cares. noone will help or wants to see dissabild adults. Recently I got a comment from a stranger on the bus saying I was lazy and should pay for my public transit instead of using my free pass. I just ignored this person becaus I know im not lazy and that person ive seen before and he is just generaly a jerk anyways, (sometimes i swear he just rides the one dang bus rute to insult the world but thats another story). Still its a very common attitude by people who dont have dissabilities to view disabled as lazy. Sometimes I feel noone wants to face the reality that those dissabled kids will become dissabled adults and need just as much support from the community as those cute little kids with their stories in newspapers that are made to seem " tragic and missrible " . Id like to see some stories about dissabled adults in the newspaper. But I guess we are just lazy adults who dont try to get jobs and just want government cheques, who ever wants to read about that? -- It does hurt, I know. Kindness and caring, love, kind of melts all those defences and then all the hurt and need comes up and it HURTS. It's natural to want to keep those feelings down, and the defenses up. That's why it's easier to try to make people hate us. We can cope with people beign angry with us or whatever, but kindness just cuts through all those walls. ~ Para... Faith, no matter what we believe in is an important motivator in life. There are reasons why something is the way it is, though we dont always know why. Problems are never a way to punish us, sometimes they are a way of making us better and stronger, more compasionate and knowlegable people inside. We may worry, we may feel down on the world but we must always remember that faith is what brings us together and that god, no matter what we call him or her has not punnished us, only trusted us with an extra special gift. ~ Me My Blog Space: http://neutralufo.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 wow its just to cute > > To register to their link it doesnt cost anything. I did just so I > could read it...LOL! > Crystal > > > > > > > > About 2 weeks ago we had a playdate for EI and the Chicago > Tribune was > > > there. Well today it was in the Metro section with our picture. > Its so > > > cool the 1st line has CHARGE Syndrome in it, I was so happy to > see > > > that!! > > > Its on Eva's site along with a link incase you can't read the > small > > > print... > > > http://www.babysites.com/sites/crystalm1476/ > > > ID: EvaNichole > > > Password: Butterfly > > > > > > Thanks, > > > Crystal and Eva > > > > > > > > > > > > > > > > > -- > > " It is far better to grasp the universe as it really is than to > persist in > > delusion, however satisfying and reassuring. " --Carl Sagan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 lol i thought that when i was reading her page i no eva and everyone of us dotn spend the hole tiem in drs rooms or surounded by them we might have one or two and ;yes soemtiems hepas but not every single day unless of course we r in hosp and once we get to audulthood we just need the right people to help us and try avoid the stupid ones its not easy i find them all the time those stupid ones but its true i hate it when they make me feel im worth nothing and that i really am lazy soemtiems i think they want to believe that so they dotn have to help me hmmmmmmmmmmmmmmmm xx ellen > > Hey I think this is the same link i got just now about Eva being at that > play place. Thats really cool! > > One thing though that makes me sad is how everyone focuses on kids and > will > support kids with dissabilities but once they get past the kid stage into > adulthood, noone cares. noone will help or wants to see dissabild adults. > Recently I got a comment from a stranger on the bus saying I was lazy and > should pay for my public transit instead of using my free pass. I just > ignored this person becaus I know im not lazy and that person ive seen > before and he is just generaly a jerk anyways, (sometimes i swear he just > rides the one dang bus rute to insult the world but thats another story). > Still its a very common attitude by people who dont have dissabilities to > view disabled as lazy. > > Sometimes I feel noone wants to face the reality that those dissabled kids > will become dissabled adults and need just as much support from the > community as those cute little kids with their stories in newspapers that > are made to seem " tragic and missrible " . Id like to see some stories about > dissabled adults in the newspaper. But I guess we are just lazy adults who > dont try to get jobs and just want government cheques, who ever wants to > read about that? > > -- > It does hurt, I know. Kindness and caring, love, kind of melts all those > defences and then all the hurt and need comes up and it HURTS. It's > natural > to want to keep those feelings down, and the defenses up. That's why it's > easier to try to make people hate us. We can cope with people beign angry > with us or whatever, but kindness just cuts through all those walls. ~ > Para... > > Faith, no matter what we believe in is an important motivator in life. > There > are reasons why something is the way it is, though we dont always know > why. > Problems are never a way to punish us, sometimes they are a way of making > us > better and stronger, more compasionate and knowlegable people inside. We > may worry, we may feel down on the world but we must always remember that > faith is what brings us together and that god, no matter what we call him > or > her has not punnished us, only trusted us with an extra special gift. ~ Me > > My Blog Space: http://neutralufo.blogspot.com/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 Chantelle, I understand completely what you are saying and there are just so many people in this world that are " blind " to everything that is not " normal " . I wonder about what Eva is going to have to put up with when she is older and who she will have to deal with. I think you are so bright and intelligent and I know you would love a change in the world and we are the only ones that can help do that. Maybe if you write to your local newspaper or news you could let them know how you feel and maybe they can help you get started and tell your story. The only way to help the " blind " people is by opening their eyes. They don't always know the whole story and they sometimes jump the gun to their own conclusions. Hugs, Crystal mom to (10), (3), and Eva (19 month old CHARGEr) wife to Dan in Illinois > > Hey I think this is the same link i got just now about Eva being at that > play place. Thats really cool! > > One thing though that makes me sad is how everyone focuses on kids and will > support kids with dissabilities but once they get past the kid stage into > adulthood, noone cares. noone will help or wants to see dissabild adults. > Recently I got a comment from a stranger on the bus saying I was lazy and > should pay for my public transit instead of using my free pass. I just > ignored this person becaus I know im not lazy and that person ive seen > before and he is just generaly a jerk anyways, (sometimes i swear he just > rides the one dang bus rute to insult the world but thats another story). > Still its a very common attitude by people who dont have dissabilities to > view disabled as lazy. > > Sometimes I feel noone wants to face the reality that those dissabled kids > will become dissabled adults and need just as much support from the > community as those cute little kids with their stories in newspapers that > are made to seem " tragic and missrible " . Id like to see some stories about > dissabled adults in the newspaper. But I guess we are just lazy adults who > dont try to get jobs and just want government cheques, who ever wants to > read about that? > > > -- > It does hurt, I know. Kindness and caring, love, kind of melts all those > defences and then all the hurt and need comes up and it HURTS. It's natural > to want to keep those feelings down, and the defenses up. That's why it's > easier to try to make people hate us. We can cope with people beign angry > with us or whatever, but kindness just cuts through all those walls. ~ > Para... > > Faith, no matter what we believe in is an important motivator in life. There > are reasons why something is the way it is, though we dont always know why. > Problems are never a way to punish us, sometimes they are a way of making us > better and stronger, more compasionate and knowlegable people inside. We > may worry, we may feel down on the world but we must always remember that > faith is what brings us together and that god, no matter what we call him or > her has not punnished us, only trusted us with an extra special gift. ~ Me > > My Blog Space: http://neutralufo.blogspot.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 Chantelle, I agree with you 100%. It is unfortunate that you are facing this-especially when you are working harder than many people!!! pam > > > > > Hey I think this is the same link i got just now about Eva being at that > play place. Thats really cool! > > One thing though that makes me sad is how everyone focuses on kids and will > support kids with dissabilities but once they get past the kid stage into > adulthood, noone cares. noone will help or wants to see dissabild adults. > Recently I got a comment from a stranger on the bus saying I was lazy and > should pay for my public transit instead of using my free pass. I just > ignored this person becaus I know im not lazy and that person ive seen > before and he is just generaly a jerk anyways, (sometimes i swear he just > rides the one dang bus rute to insult the world but thats another story). > Still its a very common attitude by people who dont have dissabilities to > view disabled as lazy. > > Sometimes I feel noone wants to face the reality that those dissabled kids > will become dissabled adults and need just as much support from the > community as those cute little kids with their stories in newspapers that > are made to seem " tragic and missrible " . Id like to see some stories about > dissabled adults in the newspaper. But I guess we are just lazy adults who > dont try to get jobs and just want government cheques, who ever wants to > read about that? -- Pamela J. , M.A., CAGS Licensed Educational Psychologist Deafblind Program Perkins School for the Blind 175 N. Beacon St. Watertown, MA 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 Chantelle- I've thought about this a lot! Ever since Aubrie was a baby, I've wanted to take out a huge ad in the paper saying " Remember how much you value her now when she's an awkward teen! " and " Give her and others the same care and attention when they are adults as you are doing now when she's an adorable little girl " . I don't know the answer, but I sure have seen and felt what you're talking about! Michele W Aubrie's mom _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Chantelle McLaren Sent: Tuesday, November 14, 2006 10:10 PM To: CHARGE Subject: Re: Re: Eva is in the newspaper!! Hey I think this is the same link i got just now about Eva being at that play place. Thats really cool! One thing though that makes me sad is how everyone focuses on kids and will support kids with dissabilities but once they get past the kid stage into adulthood, noone cares. noone will help or wants to see dissabild adults. Recently I got a comment from a stranger on the bus saying I was lazy and should pay for my public transit instead of using my free pass. I just ignored this person becaus I know im not lazy and that person ive seen before and he is just generaly a jerk anyways, (sometimes i swear he just rides the one dang bus rute to insult the world but thats another story). Still its a very common attitude by people who dont have dissabilities to view disabled as lazy. Sometimes I feel noone wants to face the reality that those dissabled kids will become dissabled adults and need just as much support from the community as those cute little kids with their stories in newspapers that are made to seem " tragic and missrible " . Id like to see some stories about dissabled adults in the newspaper. But I guess we are just lazy adults who dont try to get jobs and just want government cheques, who ever wants to read about that? Quote Link to comment Share on other sites More sharing options...
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