This is within my little Catholic corner of the world. You may have a vibrant, active church circle. So pray for us.
One problem that parents of older children with CF (or any chronic condition) face is indifference. In the beginning years, when every hospitalization was horrifying and we were reeling with God's rejection (Our perception, of course, but real.), church people came. They came to sit with our son, to take us out, or to drop by with a sub or a movie or a cappuccino. Sometimes all three ~ halleluia!
Then two things happened : Rees grew up and we converted to Catholicism. He was no longer a crying, confused toddler with distraught new parents ; he was a cool dude who understood CF and dealt pretty well with hospitalizations (I think we became cooler, too, but don't ask my kids.). And we found that, in our world, Catholics go to church, then go home. No visits. No restaurants. There's plenty of Facebook and bloggy bemoaning the state of the country and our Church, but when I posted a status update that Rees had been hospitalized? Silence. Indifference. In fact, this past time, a church leader told us he was heading in for a visit, then never showed. Readers, this is Even Worse than not showing.
We (older CF parents) may be at existential peace with a chronic condition requiring hospitalizations, but the hours still D R A G by when hooked up to an IV. The Communion of Saints is more than asking Sister Mary Martha to recommend a good patron for a particular malady and begging intercession from the Church Triumphant. It's the Church Militant, too ~ those of us here, working out our salvation in fear and trembling (Philippians 2:12 but read the whole chapter!). And while it is intellectually stimulating to read insightful, witty commentary on the World Wide Web, Real People in your parish need Other Real People with telephones and trucks to really contact them.
There's enough pentecostal left in me to recommend dropping to our knees, closing our eyes, raising our hands to Heaven, and asking the Holy Spirit to fall on us and fill us with Love. And information. Information on whom to pour out that Jesus Love upon.
Speaking in other tongues optional.
Now let's walk away from our computers, pick up a $6.99 box of doughnuts, and go help someone. Also please note that the last paragraph contains several our's and us's. Although I admit to whininess and discouragement, I'm in this as well. After all, my kid is not always in the hospital . . .