Re: e-long-winded---RESPONSE

January 9, 2004

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

January 9, 2004

Takes me right back to my days of earlier motherhood! n