Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Rosemary, You are amazing - whether your children realize it or not! Love, On Friday, January 9, 2004, at 07:12 PM, ROSEMARY3FOR3wCF@... wrote: > e > You are NOT NOT NOT alone...OMG - I have those days more often than > not. My > sister, who I never listen to once said " STOP comparing your life to > theirs > [kids with cf]. They don't know any better. You are thinking of you > childhood. " For the most part she is right. I too am the MOTHER FROM > HELL.........breathe dammit. I have even told them how LUCKY they > are, how years ago kids died > from CF because they didn't have all the treatments (vest, breathing, > medicine, etc.) that we have today. I acknowledge it sucks but that > we MUST do it - > end of story. One thing I am finding is that as they age it gets > easier with > TIME. Now that they stay up LATE they actually get free time between > dinner > and bedtime - ok so its only an hour but when they went to bed at 9 it > was > awful........I would be doing dishes and setting up their meds. > > CF is isolating. Drs. keep us separate. We are scared talking to > others for > fear their child is better/worse so I think it holds us back. I was > married > to a great guy - he just can't cope. 9/11 pushed him over the edge - > he was > there. Now he drinks...I am happy when he passes out - it making > pushing the > vest over the basturds toes easier....... > > Last year was the first time I realized families go out at night. Be > flexible. Do treatments before dinner and go out after. I was/am a > rigid person. > With CF you MUST learn flexibility. You must learn patience. > > The patience to sit in a drs office, lab, etc. for hours......... > the patience to spend hours on hold with insurance, drs. etc. > the patience when the CF Center loses your lab results, ct, etc. > the patience when people say " she looks so healthy " > the patience when people whine about stupid things...... > the patience to pick up prescriptions that aren't ready > the patience to spell your LAST NAME for the 100th time > the patience to be PLEASANT and enterain your child while experiencing > all > these frustrations since children take their cues from us. If we > snap/yell/cry > they too will...... > > I have hole on the inside of my mouth from biting the sides of my > mouth in > order to keep my mouth SHUT!!!!!!! > > You are not alone.......my major fear is that my children with die > thinking I > was the horrible person and not realizing that all the nagging, > whining, > yelling was to help them. I remember hating my mother when I was a > teen thinking > she was trying to ruin my life. It wasn't until I was in my 20's - > late teens > that I realized how wonderful she was. It wasn't til I had kids that > I truly > appreciated all she did and sacrificed for me. It wasn't til she > died that > I realized I experienced the worst pain in my hole life - until my > children's > diagnosis. Her death was horrific and I was SO sad......but I can > truly > eqate it with receiving the children's diagnosis. > > The ones the can COPE are the ones that can talk about it. My husband > doesn't talk about it and cannot cope........... > > Please, feel free to vent or contact me privately.......we are all > here for > each other. > > Love, Rosemary > > > > Quote Link to comment Share on other sites More sharing options...
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