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...


  1. Halloween decorations? What are those??? ;) I'm pretty proud of the fact that I finally slapped an autumn-y wreath on my door, it only took me 5 weeks. ;) I so understand these sentiments! Because of my fibromyalgia and chronic fatigue I am very limited in what I can do on a day to day basis. I often feel bad for giving Kate a sick mom too, but I try to remind myself of just how much love and care I have to shower her with, and hope that will make up for it, you know?

  2. I think the wreath is a fantastic job! LOL I agree with you that our overwhelming love for our children needs to make up for our physical limitations. We have heard again and again that the greatest gift you can give your children is your time, and goodness knows we can do that even though it's often from a couch.


Thank you for taking the time to comment. Please check back as I sincerely try to write back on any comments given.