Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 Wow, quite a loaded question and it drums up so many emotions, even 5 years later I have a difficult time expressing it. Mostly what comes to mind are very strong emotions, but a few things that can be put onto paper do stick out. Sleep, or lack of sleep is first, I agree, I have no idea how I did it. So take any help you can to get your rest - like on an airplane, put on your own oxygen first, then you can better help your child. And as my grandma said, when people ask " How DID You Do it? " YOu answe what choice did I have, its my child - I just DO! But definitely sleeping will help you do it in a more sane manner! Another thing I would say is to remember, that our children ARE NOT CHARGE Syndrome - it does not define them. CHARGE Syndrome means something different for each child. When you read possibilites - rememer- our children each have some of the characteristics of the syndrome and they dont have others - so dont jump to conclusions. It doesnt help to worry about what they MIGHT HAVE - you have plenty enough to worry about. Also, something a NICU nurse asked me at the time struck a cord, but it took me a while to soak it in. She asked " Is Lucas any LESS PRECIOUS now then before you found out he has CHARGE? " The answer was of course not, but it took me a while to fully understand that. Yes, he is more difficult to care for, and my world was altered, but is just as precious and amazing and wonderful as any child is - no MORE SO as he is so strong and teaches people so much. Lastly, I think the book, " You will Dream New Dreams " helped me in the long nights that I tube fed and breast pumped. The book showed me that even though its a different journey, its still OK, and eventually even a more AWESOME life with amazing lessons to be learned. I could go on forever, but its still emotionally draining, so thats my two bits! Lacey (mom to 5 yr old Big-boy Lucas) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2007 Report Share Posted June 10, 2007 lacey wonderful thouights u wrote there > > Wow, quite a loaded question and it drums up so many emotions, even 5 > years later I have a difficult time expressing it. Mostly what comes > to mind are very strong emotions, but a few things that can be put > onto paper do stick out. Sleep, or lack of sleep is first, I agree, I > have no idea how I did it. So take any help you can to get your rest - > like on an airplane, put on your own oxygen first, then you can better > help your child. And as my grandma said, when people ask " How DID You > Do it? " YOu answe what choice did I have, its my child - I just DO! > But definitely sleeping will help you do it in a more sane manner! > > Another thing I would say is to remember, that our children ARE NOT > CHARGE Syndrome - it does not define them. CHARGE Syndrome means > something different for each child. When you read possibilites - > rememer- our children each have some of the characteristics of the > syndrome and they dont have others - so dont jump to conclusions. It > doesnt help to worry about what they MIGHT HAVE - you have plenty > enough to worry about. > > Also, something a NICU nurse asked me at the time struck a cord, but > it took me a while to soak it in. She asked " Is Lucas any LESS > PRECIOUS now then before you found out he has CHARGE? " The answer was > of course not, but it took me a while to fully understand that. Yes, > he is more difficult to care for, and my world was altered, but is > just as precious and amazing and wonderful as any child is - no MORE > SO as he is so strong and teaches people so much. > > Lastly, I think the book, " You will Dream New Dreams " helped me in the > long nights that I tube fed and breast pumped. The book showed me that > even though its a different journey, its still OK, and eventually even > a more AWESOME life with amazing lessons to be learned. I could go on > forever, but its still emotionally draining, so thats my two bits! > Lacey (mom to 5 yr old Big-boy Lucas) > > > -- stand up and speak up!!!!!!! and dont let the world hold you back just go for it Quote Link to comment Share on other sites More sharing options...
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