Thursday, March 24, 2011

Go-Go Gadget Arms

As a mommy, it's my job to fix the boo-boo's. You put a little disinfecting ointment on the owie, slap a Bandaid on it, give a little kiss to the forehead and off they go. But what happens when you can't fix it. When I can't fix it. Better yet, when I can't fix her. What happens when they just haven't made a Bandaid that fits this owie? You know what's enough to keep a mother awake at night?? When you know that they know how to make that Bandaid, but unfortunately they just can't afford it. The government won't give them the funding they need to research and produce that exact Bandaid. So, they rely solely on people like you and me, to go out there and raise money. Average people like you and me who know how important that damn Bandaid is. Sure, we have some preventative Bandaids that may keep their little knees from getting scratched up for a little while...but give them some time. The Bandaids will wear down, the boo-boo's will come, and the permanent scarring will eventually come, too. The permanent lung scarring that will make Rylan feel like she is breathing threw a tiny straw, all day long. These Bandaids just aren't doing the trick.

I love my daughter. I love everything about her. Including the 'imperfections'. I remember another CF mom explaining it like this....'a gift is not about the packaging, it's about what's inside.' Ry's 'packaging' may not work perfectly all of the time, even with all the preventative Bandaids we slap on her, but I can tell you what's inside that packaging is a miracle in and of itself. To elaborate on that thought even more, a gift isn't just about the packaging, or even what's's meaningfulness comes from the GIVER of the gift and the gift's intention. Rylan is a gift from God, plain and simple. And there isn't one moment of any day that I'm not beyond thankful for her. For EVERYTHING she is. I thank God every day for picking ME to be her mommy. Every. Single. Day. He gave her to me with the knowledge that I would be the exact kind of mommy she needs. Most days I don't feel deserving of that role, but every day I strive (and fail a LOT) to be just that kind of mother. The kind of mother that God wants me to be....

With all of that is one of those days where I'm failing. I'm tired. Better yet, I'm exhausted. And I just want a break from it all. I want a break from living, breathing (ha, what a wonderful pun NOT intended), thinking, planning, dealing, dosing, disinfecting, fighting CF. I know with all the chaos and devastation in the world, MY problems are the last ones I should be complaining about.....but I just need to let it all roll out of my mouth for a minute. If you could hear how hard I'm smacking the keys on my laptop you would probably run for the hills. I just want ONE day off. That's it. One day. One day where I'm not consciously or SUBconsciously thinking about it all. Planning fundraisers, writing letters, posting requests on Facebook, always asking people for, money, money. That's all it would take. MONEY. Something so absurd and earthly as money. The science is there for my little girl to breathe easy for the rest of her life. The money is not. That's a pretty good reason for me to just be pissed off. It's as if the magic pill is sitting right there....but my 'Go Go Gadget' arms just can't reach it.


  1. And this is where God comes in......He gives you strength just when you think you don't have another ounce in you. He gives you peace in the midst of the storms. And he wraps his arms around you and promises to love you beyond the love even you as a mommy feel for Rylan. You are a WONDERFUL mother, and it wasn't by chance that God chose you. He knew you had exactly what it would take to care for his child. You are amazing, and your love for your kids is amazing. I love you dear friend!

  2. I hear you on the wishing for a day off. It gets overwhelming sometimes. I feel you on this one.

    Sending you lots of love...

  3. Hope your days since this post have been better! You are definitely allowed to have a pissed off, mad at the world here and there!