Tuesday, May 17, 2011

Days

Most days I am ok. Most days I can carry on with our daily lives with some level of normalcy (as normal as it can be with a 2 year old...ha ha!) although CF is never really that far from my mind. After all, daily doses of enzymes and trying to fanagle a 2 year old into a shaking vest twice a day are firm reminders that we are in fact, fighting to keep our girl healthy. Most days I can do our routine things without much deep thought about CF. At least not the deep thoughts I used to have after Reese was first diagnosed. Now this is our life...this is OUR normal.

But some days are just plain hard. Some days I get sucked into the stories of precious young lives taken far too soon. Some days I go to a resource website or a social media group for a question and I happen to glance at the grim news from another mom of a CFer. Some days I want to scream at the top of my lungs and just BEG God for this to all just go away.

But ALL days, this is our reality and CF is part of our life. So ALL days I thank God for our girl and for the time He gives us with her. ALL days I love her more and more. ALL days I look at her and am so so so proud of her. ALL days I do whatever I can to make sure she stays healthy. ALL days she inspires me. ALL days she is full of sparkle and life.

And ALL days I pray for a cure.

http://www.cff.org/great_strides/emilypetoske7240

2 comments:

  1. Ok girl! I'm bawling!! Exactly!!! That's it! No matter what! Some days it just gets you! This evil insidious disease that we fight & fight sometimes wins. But it is NOT going to beat you & Reese. We ARE going to Beat it! CF IS going to mean Cure Found!! You have my prayers and thoughts and hugs each and everyday. Love to you all!

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  2. What a sweet ode to your little girl, Em. I completely felt every word you wrote. I was thinking today, wouldn't it be pretty stinkin' cool to have a blog post entitled, "WE HAVE A CURE!" Until that day we will beg God for that cure, and walk alongside each other as we fight for our babies!!! Love you.

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