Thursday, January 13, 2011

Sealed with a Kiss (and a swear word or two).....

I'm not sure if this is incredibly cute, or horribly sad.....I overheard a conversation between the kids this morning while they were playing house (which, by the way, somehow ALWAYS means it looks like a bomb went off in here.....literally EVERY SINGLE doll, dish, stroller, blanket, etc needs to come out of every closet and toy know, so it seems more 'real'. Apparently, my kids feel more at home when they are stepping over toy landmines) So, they each had a doll they were carrying around doing this, that or the other thing.....when the conversation turned to 'treatments'. None of the babies were able to 'play' until they had each done their treatment. 'Treatment' was a breathing mask they each passed around to their babies made out of Tinker Toys. I know I should probably just be happy they were using their wonderful little imaginations, but it makes my heart hurt so bad to know that THIS is their normal. Breathing treatments. Normal. That just isn't right, damn it. Something as simple and fun as playing house has to turn into battling cystic fibrosis. That's not how I remember playing house as a kid. Not in the least bit. FUCF. FU.

Working on these felt flowers has been more therapeutic than I expected. I honestly find myself chanting in my head F.U.C.F. over and over as I'm making them. I just learned of a fellow CF mom here in town that is in the hospital with her son due to low PFT scores and other CF related issues. I JUST saw her. And he was doing ok. Now he is in the hospital. I hate it. I'm walking around with a big lump in my throat half of the time, covering it up with a dumb smile on my face. These people are fighting so hard JUST TO BREATHE. Imagine that. FIGHTING. TO. BREATHE. All while there are people out the CHOOSING to kill their lungs. Choosing to kill their lungs, while there are people like my daughter who never asked to have lung disease. Choosing to kill their lungs, so there is one less set of healthy lungs that could potentially save someone's life. Today is just one of those days where I'm angry. I'm sad and I'm angry. Cystic fibrosis never goes away. Not even for one second of one day. Not even when my sweet little babies are playing an innocent game like house.

So, when you open up your Roses for Rylan package......please know that you have not only helped raise money for CF, but you've helped save my sanity as well. Not only are they 'Sealed with a Kiss'.....but they're sealed with a swear word, too. FUCF.

1 comment:

  1. I loved this story...I can so relate to the bomb of toys exploding in the house, but it broke my heart to hear about your kids playing "treatment". Very bittersweet that they think it's normal....just like the kids in Calcutta frolicking around the street begging for money think it's "normal". Thanks for sharing. It really puts this life, toys, these life-saving treatments for our children all into perspective.