Wednesday, October 9, 2013

Those Peaceful Moments

Last night as I relaxed with my daughter on the couch, her chest rising and falling so peacefully from the sleep which finally found her, I felt that overwhelming sense that all would be okay. We haven’t had the easiest of weeks since we are battling teething, a growth spurt, and stranger anxiety all at once. We’ve had more fussy times than happy times, and if I go to put Sydney down or walk out of her line of sight, there is often a meltdown. But in that one instant, I hear her soft sigh of contentment and see a flicker of a smile cross her lips, and I know that it will all be fine and that tomorrow is a new day; my heart is filled with joy and serenity. 

Sunday, October 6, 2013

Days like these...

The house is a complete mess.
The dishes are stacked a mile high in the sink.
Halloween decorations are tucked in a bin still.
We ate Subway for dinner.
It's after midnight, and I'm just getting my second neb/vest in for the day.
My sugar has bottomed out three separate times today.
My cough feels gross, and I'm beyond exhausted.

It's days like these where I feel guilty that my daughter has a sick mom. A mom who has to conserve her spoons for the important things and has to worry about how much sleep she has gotten. A mom who has to sit attached to machines for an hour (or more) each day and who takes a ridiculous number of pills. A mom who struggles to walk up and down the stairs sometimes, and a mom who wakes her daughter up with coughing and hacking. 

Cystic Fibrosis slows me down in ways I hate to even admit. I have so many fun ideas, places to go, things to see, but they often get pushed aside because I need to do a treatment or take a nap. My daughter is 4 1/2 months old so for right now it's okay, but it's not going to be easy for her to understand when she's 4 or 5 years old. I just pray there's a cure around the corner. I really need this cure. I need to be here for my daughter as an active part of her life.

Vesting with my baby girl!
Please...please let there be a cure...