e/vent

[Guest guest]

e,

This is a mother of an almost 2 year old giving advice to a mother

of a ten year old so take it for what it is worth. I envision Zach

and me having huge battles about treatments someday. I already have

to play WWF to do TOBI. He is still too small for a vest so we do

it manually. He likes it and falls asleep.

This is the conversation I imagine I will have with him someday.

I wish I could let you skip treatments, but I can't. Your lungs may

become damaged if I do. I am not saying you will get sick tomorrow

or next week or next year if we skip, but what I do know is that

when you do get sick we might not be able to fix it. Your lungs are

like your teeth. When you get your teeth cleaned the dentist might

say you have a cavity that needs to be filled. You didn't even know

it was there because it didn't hurt at all. But the cavity must be

filled so that the rest of the tooth does not rot and fall out.

Once a tooth falls out, another will not grow back. Besides that a

rotten tooth is a horrible and painful experience. Your lungs are

like that. Your lungs could become damaged like having cavities.

You might never know anything is wrong because you can't feel it,

but it is still there. If they rot (so to speak) it will be a

horrible and painful experience and I never want that for you. That

is why you must do your treatments - to keep your lungs healthy. I

understand that no one in the world would ever want to brush their

teeth for three hours a day to keep their teeth healthy, but you

must do your treatments to keep you lungs heathy.

I can't change that you must do the treatments, but I will do

whatever it takes to make it bearable for you. If I need to hold

your hand for three hours, I will do it. If I need to sing

Jinglehimer Schmidt for three hours, I will do it. If you

want to squirt me with a squirt gun after each treatment, have at

it. I want the best for you and will help you anyway I can. I want

you to be the healthiest cf kidn on the planet.

This may sound corny, but maybe the mothers of older kids can add to

this or give some better ideas.

I know how you feel about being down. Some days walks in and

says " What is wrong? " and I snap, " I want a *()$!@#? cure! " .

That is when he takes over and gives me break. I could be nice and

say " I need a break. " , but that is so unlike me.

I hope you have a better day tomorrow!

Sara

> 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