Pray for a cure.

I have to admit I've been a little down lately. I'm finding myself feeling more and more frustrated and overwhelmed by everything it takes to care for Kelsie and manage her CF. I'm just tired. I'm tired of giving her medicine all day. I'm tired of carrying pills and applesauce with us everywhere we go. I'm tired of filling a spoon with applesauce, opening up 4 capsules, and sprinkling them on top of a little mound of applesauce every day every time Kelsie eats. I just want to be able to feed my baby a snack or give her a sip of milk without having to pull out this whole set up. Im tired of doing chest pt every day, for at least 40 minutes a day. I'm tired of having to carry a mental checklist around with me everywhere I go to make sure Kelsie has had enough fat and calories, enough enzymes (but not too many) enough salt, enough fluids, enough chest PT, and the list goes on... No I'm not asking for a vacation or time away from her. That's not what I want at all! I just want her not to have to deal with any of this ever again. I want a cure. A miracle. Or to just wake up to find it was all a nightmare and that my beautiful baby girl really doesn't have cystic fibrosis. I just want none of these treatments to be necessary anymore.


I feel guilty every time I complain about what I have to do to keep her healthy. There is NOTHING I wouldn't do for her! No matter how much extra time it takes out of my day or how much anxiety it causes me, I will never stop doing what is needed to take care of her. I also feel guilty because I know one day she will take over her own care and at that point I will no longer be the one having to give her meds...she will! And SHE will have to do all of this every day!! It will wear on her, I know it will. Yes, it will become "normal" for her, but it will also be extra tasks added to her day and it will not be what her friends are doing. She will have to make time for her treatments every single day when there will undoubtedly be things she would rather be doing. And there will be a lot more treatments than there are today! It will become exhausting. And she will want to be non-compliant. But she can't. Not if she wants to stay healthy and prevent long term lung damage. I will be there to gently remind her of that and help her through it when she feels like giving up. I just hope I can instill in her the perseverance and resilience to overcome the burden of this illness.

Pray for a cure.