Dear Abigail,

You are a superhero – you can make smoke come out of your mouth with your nebulizer.  You can make the earth shake with your vest.  You can have an extra arm (or two) with a PICC line.  You wear a mask to hide the sneaky smile on your face, and because it’s cool to wear a mask.  But you are a superhero for more than just that.  You are strong because you do these and other medications every day, and because you are fighting this disease with everything you have.  You are powerful because you have so many people around you, lifting you up over fences, breaking down doors, and fighting alongside you.  You are a superhero, and don’t ever forget it!

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But don’t let your superhero cape get caught in the little things.  There are doctor’s visits and hospitals and more medications than you care to count.  There are colds and viruses and times when you don’t want to get out of bed.  But you are still a superhero because you keep fighting.  You get out of bed, and with other people’s help, you’re able to get things done.  You keep fighting.

There will be days when you feel like giving up.  There will be days when you don’t want to do this any more.  There will be days, weeks, months, years – when it seems like there is no end to the cycle of medications, doctors visits, hospitalizations, and feeling terrible every day.  There will be days – good and bad.  Sometimes the good days are few and far between, and it feels like the gloomy skies and rain will never end.  But you have been blessed.

People may treat you differently because you’re a superhero, and it may not always be good.  People may laugh at you, but others will help you out.  People may give you a hard time, but others will play with you because you’re fun to be around, and they won’t care about your disease.  They may even think that your superhero powers are cool.  Some people may tell you that you can’t do things – like play outside, have your prince charming, be anything you want to be.

But I’m here to tell you that you can do things.  Lots of things.  Run, sing, walk, play an instrument, have friends sleep over, play a sport, dream, love, and so much more!  As you grow up, you’ll see people around you that are doing different things than you are.  They may go out every night when you have to stay in a few nights a week.  They may get done with their homework and go to the softball field when you have to sit at home and do medications.  They may have more dates with cute boys than you do.  They may have a part time job and you don’t.

But here’s the thing: God has a plan for you, and He has from the very beginning.  He put you in the family you’re in, so that you could grow up loved.  He put you in the position to get fantastic medical care, so that you could learn how to take care of yourself.  He gave you a beautiful smile that lights up other people’s worlds.  He gave you the ability to run around and play sports and stay active.  He gave you the drive to keep fighting CF every day.  He gave you people around you to lift you up and carry you when  you need them to.  He gave you a voice to be heard in the CF community and everywhere else.  He gave you the chance to go to school and learn about history and science and literature and sports.  He gave you life.

You were born into this world at an incredible time.  The Human Genome Project (this effort let primarily by Dr. Francis Collins) has discovered the gene for our disease.  They have named the protein that is defective in our disease.  Thousands of researchers all over the world are working to find new therapies and potential cures for us.  We are blessed.  Beyond blessed, really.  I can tell you from personal experience that it’s not easy to get up every day and keep fighting.  But there are people who help me every day.  And God keeps putting more people in my life who continue to encourage and inspire me, including you.  I can tell you from other’s experiences that Prince Charming does exist (although he usually comes without the horse!) and that when the time is right, God will place the right man in your life.  Regardless of what people may say, know this: you are beautiful, inside and out, and your CF doesn’t change that.  Don’t let it dictate who you are or what people think about you.  You are beautiful and don’t let anyone ever tell you differently.  I can tell you from personal experience that it is possible to do well in school and to go on to college and even graduate school, to have a job and still be healthy at the same time.  Yes, it can be difficult, and it’s not a bad idea to take some time off sometimes to take care of yourself, but it is possible.  I can tell you from personal experience that you have so many people working for you and for CF in the scientific community – I am one of them.  I can tell you that you are a superhero, and that you are beautiful, and that your CF makes you stronger, but you have to believe it too.

Thirty-seven is just a number.  Don’t let it scare you, in fact, don’t even think about it.  Live your life like today is your last day, but go ahead and plan for the future.  None of us know when we’ll go home to heaven, but those of us with shorter life expectancies may have a better idea of how short life really is.  But that doesn’t mean that we shouldn’t plan for fifty or sixty or a hundred years from now.  We should dream and plan and love like everyone else, and then we should do it.  Go outside and play.  Put out a job application.  Go on a date.  Apply to college, graduate school.  Love people.  Take care of yourself.  Listen to your doctors.  Do your medications.  Stay active.

And say thank you.  To the people who have raised you since you were a baby – parents, grandparents, aunts, uncles; to the people who have helped you stay healthy – doctors, nurses, social workers, technicians, phlebotemists, secretaries, nutritionists, physical therapists; to the people who have loved you from afar – other CF patients, church family, and others; to God.

You truly are beautiful, and you are a superhero.  Don’t ever let anyone tell you differently.  Don’t let your CF stop you from doing things – enjoy life, inspire people around you, and live.  Live because you can, and because you fight for every day.

Love,

Kristen