Tuesday, January 27, 2015


The other day I tried to return a call from a friend, but got her voice machine. Her son is the same age as Kaylee and they often have play dates. Recently, with winter here, her friend was sick for so long we had to postpone play dates for three weeks in a row and the week after out playdate he ended up in the hospital due to sickness. As I hung up the phone, disappointed my friend didn't answer, Kaylee came walking up to me.

"So mom, how is Ethan feeling today?"
I looked up from my phone not realizing she was standing there. Her big blue eyes were looking up at me eagerly waiting for my response. I was surprised she remembered he had been sick as it has been several weeks since a canceled playdate.

"He is all better. That was nice of you to ask about him"
Kaylee responded with relief in her voice, "That is very good news!"
and ran off to play.

So much of the time I worry CF will fill Kaylee's memories. That she will remember the times we spend in the doctors office, or the nights I wake her with my cough from the next room over, or the way I always decline chasing her through the park because my old lungs simply can't run anymore. Or the times she wants me to carry her and I make excuses because I hate to tell her no, but in reality my breath is too shallow and I have days I simply can't manage walking and holding her. Or the times I huff and puff at the top of the stairs, or the times I need to nap instead of being able to play, or all the horrendous moments CF has put in our lives.

But maybe after two years of motherhood and 30 with this god awful disease I have finally seen something good come from such an ugly part of life. At two, Kaylee has learned to think of others which is something many adults have not yet mastered. Maybe CF is giving her life lessons she could not possibly learn with a healthy mom. Maybe this disease will teach her first hand about empathy and thinking of others. Having CF be such a large part of her life may fill her memories with hardship, but maybe it will fill her heart with understanding. Maybe despite all the horrible aspects of CF it will teach my daughter about the more important parts of life, to connect with and understand others. Maybe a part of her will grow up grateful for the lessons she learned from CF rather than a hatred for all it took from her. And maybe I am learning more about accepting the life I have been given from my daughter than I ever imagined possible.


  1. I love this! Thank you. I've been working on a similar blog post, not about what my son has learned from my CF but about good in my own life I see from CF. The bad and ugly are there too, of course, but how great that you are noticing a wonderful trait developing in your sweet baby girl.

    1. The sicker I get the harder it is to find positives to CF. It was much easier when CF was more a daily hassle rather than an all consuming part of my life. However, I do think it is important to see the good in all situations because there is always a good no matter how subtle it may be.

  2. Happy to see you here again on the net.

    I have been thinking about you and your family & hope that you are ok.

    Best wishes for 2015.

    1. Thank you! 2015 is turning out to be much better than the start of 2014. Even as I wait for a hospital tune up I don't feel nearly as run down and sick as last year. Baby steps!!