Thursday, January 6, 2011

A moment to grieve.

The girls are fighting over toys, over whats on TV, over anything they can think to fight about....I'm frustrated. Nights like tonight I want to lose it. Nights like tonight I want to look my children in the eye and explain to them that there is a very good chance that their lives as a dynamic duo may be short....shorter than most....I want to sit them down and explain just how serious this whole CF thing is and try and get through to them that fighting over silly dolls and toys is not what they should be doing....they should be holding on to each other for dear life.....they should be doing anything, anything but fighting.....

I would never do that though. That would be absurd.

I cant help but feel it from time to time though. The pressure of not knowing when or how this disease will progress is immense....its suffocating.

I sit in front of the computer alone and in the dark. I watch the videos and listen to the songs. You know the ones...."Breathe" by Matt Scales, "Angels in Waiting" by Tammy Cochran...yeah, those. I take my moment to grieve all over again and again and again....I know it will never end....there is no end.

I want to take this away from her so badly. It shouldn't be her, it should be me.

Its just not right.

It doesn't make sense.

Not a whole lot in my life has made much sense though....I suppose I should be accustomed to such chaos and confusion....

I just cant wrap my head around this sometimes though.

But I can fight. That's what I do. That's how I cope. Medicines, treatments, calories....I fight it in my mind. I fight it in my heart. If only that were all it took....CF would have been history long, long ago.

Oh how I wish that were the case.

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