The Cystic Fibrosis Foundation recently released their newest promotional film for their fundraising activities, entitled .  Click the link if you want to take a look.

When I watched it, there were a lot of thoughts running through my head, which I will try to put into some sort of order here.  Right now, science and school are my life.  Singing is my solace, my praise to God in the hard times and the good times.  One of my biggest fears is that my CF will one day take away my ability to sing, and I will lose the greatest way I have to praise my Maker.  I cannot imagine how difficult life was for my parents nearly 23 years ago when I was born.   I know from some journal entries that it was incredibly hard and that they were surrounded by an incredible pastor who cried with them instead of offering meaningless words.  Did they think of worst-case scenarios?  Do they still?  I’ll be honest, I do.  But it is not in hopelessness – it is in the faith that I will meet my God face to face when that happens, and I take great comfort in that.  As I get older, I know that CF will begin to dictate more of what I can and cannot do.  That is difficult for me, someone who tries to do everything by herself, and is reluctant to ask for prayer, let alone help.  I’ve always been the one who people come to when things go wrong, for advice, for strength, for prayer, for help (particularly with chemistry homework).  It’s hard for me to be the other person, the one who goes to others.  Too often I shut myself up in my room, with my own thoughts and fears, when what I really need is someone to rely on.  “Staring down this number” – yes, I do that.  I work really hard so that I can accomplish as much as possible for the Kingdom before God takes me home.  I have a real sense of how short life really is, and that drives me to do what I do in the time that I have.  I view every day as a gift, and I want to use it for His glory.  Yes, I stare down the number 37, while many of the rest of you don’t even know what your life expectancy is.  I want to fit in, do the things that you all do, go to a bar and have a drink with friends – I can’t because of a med I’m on right now that has a deadly interaction with alcohol, and I don’t want to have to explain that to people.  I want to be able to dream decades into the future – to see myself with someone, starting a family and teaching.  I want to stay up until midnight just because I can.  I want to be able to sleep in until ten minutes before class some morning.  I want to go on vacation without lugging pounds of medical equipment with me.  I want to go through TSA security, just once, without getting stopped for the “questionable package of liquids and air compressor” that I’m carrying.  I want to fit in, be like everyone else.  But I can’t.  Because I don’t.  It’s hard to live with CF, and it’s hard to watch someone you love live with CF.  How do I ask someone else to carry that burden, to be tied down by the early expiration date, “different” girl.  How do I ask someone to love me, knowing that I carry so much baggage?  How could I ever burden someone else with the medical bills, insurance claims, medication lists, doctor’s visits, and everything else that defines my life with CF?  I’ve never been afraid of dying, per say, but of whom I’ll leave behind.  I’m afraid of becoming too attached to people because I know that, very likely, I will leave them on this Earth, and meet up with them in Heaven.  I’m afraid to let people in, because I don’t want to hurt them.

I’ve never told anyone this before, in these words.  It’s going to take a lot for me to hit that publish button and let you all see a glimpse into my heart and into my life.  What I don’t want is pity.  I know that this is what I’ve been handed in life, and I will make the best of it and serve God with every day I have.  But that doesn’t mean that it’s not difficult sometimes.

“You have to be the change, you have to be the hope.”  I’m not called to be the voice of the CF population for CFF – they would probably fire me from volunteering for my realism.  I have been called to be a voice, a scientist, a scholar, a teacher, a friend, a sister, a daughter, a colleague, a follower of Christ, and to have CF.  I believe with my whole heart that no matter how difficult each day and each circumstance may seem, God can use me in a more powerful way than I ever could do on my own.

You who are reading this, even you who are not: Thank you.  You are part of the reason I get up in the morning and can face a new day.  You are the encouragement I need, the friends and family that I value, and inspire my hope – that someday there will be a cure, and I keep striving toward that goal, not with the intention of doing it for myself, but for others living with CF.  Thank you for strengthening my faith through your own stories and struggles, for crying with me, laughing with me, singing with me, forcing me to dance, praying for me, and for loving me.  I can never hope to repay you for your kindness.

It truly is by God’s grace and provision that I sit here writing this, and it is to Him that I give all glory, honor and praise.