RE: (unknown)Krisitine

[Guest guest]

e

I know how you feel, I think we all feel the same way at one time or

another, and just when you think you have it all under control you realize

you dont have any control at all. My son lives life to the fullest and

enjoys each day . We know the monster is under the bed we just pray he

stays there. Keep living and loving your daughter and let her live her life.

We parents need to know which battles to fight and which ones to let go.

Yes there will be a time when she wont want to do her meds but she will

realize after a few days that she doesnt feel so good. Keep your chin up

today.

>

>Reply-To: cfparents

>To: cfparents

>Subject: (unknown)

>Date: Thu, 08 Jan 2004 20:48:53 -0000

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>

>You are right! We all know how you feel and have felt it ourselves.

>It's so unfair and we hurt for our babies with cf. As a grandma, I

>hurt for my daughter and for her baby. BUT... like you said, we

>can't spend to much time grieving about what might be or has been.

>It doesn't do anyone any good. I hope that your sad feelings end

>soon.

>

>Gale

>

> > Well, today is one of those days when my emotions have overtaken

> > me. My life is not one to complain about. I have a husband who

> > loves me, whom I dearly love, two wonderful children, two dogs, a

> > horse, a roof over my head and food in the fridge. Bills are paid,

> > the weather is beautiful, and here I sit in tears. Why? I don't

> > know. Of course I know, there is a monster in my house, in my life

> > and I do not like it. I want it to go away, but it won't. I try to

> > protect my daughter from the things that will harm her, but I

>cannot

> > protect her from this. Over the holidays we neglected her

> > treatments and now it is time to get back on track. I take for

> > granted the fact that she has made it half way through the flu

> > season without even a sniffle, so missing a treatment here or there

> > should be ok? I guess I am beating myself up that my baby has to go

> > through 3 hours of treatments a day. When is she allowed to have a

> > life? Well if you don't do the treatments, she won't have a life.

> > Great, that makes me feel better. She absolutely hates doing

> > treatments. Currently we are doing 28 days of Tobi, vest 20 minutes

> > x2 and pulmozyme 1x a day. I have tried everything, from being the

> > meanest Mom in the UNIVERSE, to bribery. Yes this is a small

>battle.

> > How do I explain to her that if she does not do these treatments

>she

> > will get very sick? It is very hard for me when the two of us are

> > struggling and negotiating treatments to not blurt out " if you

> > don't do them you could die! " But sometimes that is what I want to

> > say. That is my pain, my burden. I cannot tell her this because I

>am

> > afraid she will give up, not care, or rebel and " speed up " the

> > process( not now, but perhaps in her teenage years). Natalia's post

> > really touched me when she said that " she feels sad " , I don't want

> > my daughter to feel sad! I don't want her to be in the position of

> > where she has to fight for her life, and this just kills me. So I

> > come back to reality, I do not know what is going to happen next

> > week, next year, in 20 years, I have to get through today, and I

> > will think about tomorrow later. Today things are good, everyone is

> > happy and healthy.

> > I won't apologize for rambling, I just needed to throw this out

> > there. I know, I know, stay positive, don't let it get you down

> > etc... but, today it has gotten me down. Have you ever had a dream

> > where you are being chased and you cannot run away? Your feet move

> > like a cartoon character, yet you don't go anywhere? Today, I can't

> > get away. I could go to the beach, or sit out on my patio in the

> > warm sun, but then I would be alone with my thoughts and right now,

> > that is not a good place to be. I can't sit and watch tv, that just

> > drives me up the wall. My attention span is too short. Clean the

> > house, mop the floor.....yeah right. Ok, turn some " happy music " on

> > really loud and clean the house and mop the floors. Or better yet,

> > type to the group, throw my feelings out into cyberspace and know

> > that I am not alone. Someone, somewhere will know how this feels.

> >

> >

> > e, mom to 10 wcf and Ian 13 nocf

>

>

>-------------------------------------------

>The opinions and information exchanged on this list should IN NO WAY

>be construed as medical advice.

>

>PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

>TREATMENTS.

>

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