I can not pretend to imagine what you are going through right now, but please try to remember what CF has taught you about not worrying tomorrow and enjoying right now. Even if those happy moments are few and far between. I know that is easier said than done. You sound like a dedicated mother who does everything in her power to fight for her children and always will. I admire your courage in all of this. You and your child were given these challenges because God knows you can handle them, even though it certainly is not fair. I am not a religious person, but I truly believe this.
It is a lot of weight to carry on your shoulders so I hope you have found an outlet for some of it. Even if it's crying in the shower. Ask a friend or family member to watch the kids for a day and get some fresh air.
All of my best to you and yours,
Lauren