Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Hi , I just wanted to send you a hug. This listserv can be overwhelming when you first join, so many messages, so many children's problems to read about and not just now but older children too still struggling at times. It can be that the shock and realisation that your precious child may have some challenges ahead is too much to cope with all at once. I have known other Mum's log on and leave immediately as they were shocked at the volume of info, the battles people were facing, the bits of Charge they didn't know about or feared might be up ahead. But I would say persevere, keep reading and you'll also discover the wonderful bits about life in ChargeLand. There are alot of achievements, surprises and successes too...I look forward to reading more about your lovely little boy. My son is 3 now and what a Star he is.... is (Mum to , 3, UK) > > My child is no better than yours. I am so overwhelmed with > everything. This is all new to me. I have never talked on a group > website. I have never been on the internet this long. I just truly > needed to find people that were going through what I am going > through. I look on the charge syndrome web site and I see children > in the worse. My child (thank god) does not have the worst > condition. No trach, no apnea, no palsey, nothing. He is just the > most grateful child that you could ever know. --- > > In CHARGE , " and > Melton " > wrote: > > > > Very good point Ellen...what a boring world it would be. > > > > I didn't understand the message either. I don't understand if we > scare her > > because our children are worse off then her own???...I don't know. > That > > actually pains my heart. I never wanted my daughter to be " worse > off " . I > > would love to say she is " perfect " in every way. But she's not. But > what I > > have learned, is that she is perfect in God's way. And, I am very > lucky to > > learn life lessons that no one else will understand unless faced > with this > > type of lifestyle. One of those lessons I've learned is seeing > beyond the > > scary differences and accepting them as new normals. Seeing a child > as > > different " not only hurts the child, but hurts those that love that > child. > > This is something that I wish people could truly understand. > > > > Anyhow, Ellen I found this during one of my early morning bible > studies...I > > wanted to share it with you. > > > > " As he went along he saw a man blind from birth. His disciples > asked him, > > Rabbi, who sinned, this man or his parents, that he was born > blind?' > > Neither this man nor his parents sinned,' said Jesus, 'but this > happened so > > that the work of God might be displayed in his life.' " - 9:1- > 3 > > > > Love you sweetie! > > , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, > and big > > brother 5 next month, married to the best daddy in the world > for 10 > > years! > > > > The mention of my child's name might make me cry. Not mentioning my > child's name will break my heart. Unknown > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 alexis ur right there r times when even i find this list can b overhelming and im 21 there r times when i think if im over helmed imagine some of the newer ones > > Hi , > > I just wanted to send you a hug. This listserv can be overwhelming when > you > first join, so many messages, so many children's problems to read about > and > not just now but older children too still struggling at times. It can be > that the shock and realisation that your precious child may have some > challenges ahead is too much to cope with all at once. I have known other > Mum's log on and leave immediately as they were shocked at the volume of > info, the battles people were facing, the bits of Charge they didn't know > about or feared might be up ahead. > > But I would say persevere, keep reading and you'll also discover the > wonderful bits about life in ChargeLand. > There are alot of achievements, surprises and successes too...I look > forward > to reading more about your lovely little boy. My son is 3 now and > what > a Star he is.... > > is (Mum to , 3, UK) > > On 5/28/07, heatherszmigiel heatherszmigiel@...> > wrote: > > > > My child is no better than yours. I am so overwhelmed with > > everything. This is all new to me. I have never talked on a group > > website. I have never been on the internet this long. I just truly > > needed to find people that were going through what I am going > > through. I look on the charge syndrome web site and I see children > > in the worse. My child (thank god) does not have the worst > > condition. No trach, no apnea, no palsey, nothing. He is just the > > most grateful child that you could ever know. --- > > > > In CHARGE ps.com>, " and > > Melton " > > wrote: > > > > > > Very good point Ellen...what a boring world it would be. > > > > > > I didn't understand the message either. I don't understand if we > > scare her > > > because our children are worse off then her own???...I don't know. > > That > > > actually pains my heart. I never wanted my daughter to be " worse > > off " . I > > > would love to say she is " perfect " in every way. But she's not. But > > what I > > > have learned, is that she is perfect in God's way. And, I am very > > lucky to > > > learn life lessons that no one else will understand unless faced > > with this > > > type of lifestyle. One of those lessons I've learned is seeing > > beyond the > > > scary differences and accepting them as new normals. Seeing a child > > as > > > different " not only hurts the child, but hurts those that love that > > child. > > > This is something that I wish people could truly understand. > > > > > > Anyhow, Ellen I found this during one of my early morning bible > > studies...I > > > wanted to share it with you. > > > > > > " As he went along he saw a man blind from birth. His disciples > > asked him, > > > Rabbi, who sinned, this man or his parents, that he was born > > blind?' > > > Neither this man nor his parents sinned,' said Jesus, 'but this > > happened so > > > that the work of God might be displayed in his life.' " - 9:1- > > 3 > > > > > > Love you sweetie! > > > , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, > > and big > > > brother 5 next month, married to the best daddy in the world > > for 10 > > > years! > > > > > > The mention of my child's name might make me cry. Not mentioning my > > child's name will break my heart. Unknown > > > > > > Quote Link to comment Share on other sites More sharing options...
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