Overwhelmed

Life has been very overwhelming lately. I'm stuck in an endless cycle of vest treatments and nebulizer treatments. We spend a little over an hour in the morning, 20 minutes at lunch and another 45 minutes before dinner time doing treatments. For 2 1/2 hour a day we dedicate ourselves to machines hoping and praying that they will do the job.

That's just the machines. There's still the antibiotic 2x a day, enzymes (10 a day), vitamins (3 different kinds) and getting him to eat more than just a few bites of something. Top that off with the diaper rash from hell because of his antibiotic and you get one crazed mom.

Last night as I was trying to get to sleep for two hours (even after taking 2 Benadryl) my mind raced and I couldn't stop thinking about CF. There's a song we're using in our Great Strides video this year that kept playing over and over again in my head. I kept thinking about what's ahead for us. It scared me. I don't know what's ahead. Even when we do get rid of the pseudomonas, when will it come back and will we be as lucky as we were this time with finding it so early. I thought about how I would handle life if something was to happen to Ethan. I don't think I could.

When you're the mom of a child with a chronic illness you try to live in the moment and not think about the future too much. There are too many unknowns. We hope for the best and hope it all works out.

I think the pseudomonas is what has pushed me over the edge. This isn't a quick fix. It will takes months to get rid of it and even then it may still linger. We will always have to fight. It's unfair.

I feel like this is unfair to Ethan. He sits doing treatments for hours a day when he should be running and playing. It's unfair that when we go to the playground or the mall I even have to think about how many germs are on everything. It's unfair that this morning I had to cuddle him for 10 minutes longer because he feels horrible, before he would put his TOBI mask on to do his treatments. I want him to have a normal life and he won't. We can try but this is his reality until there's a cure for CF.

Sorry to be such a downer today but that's life for me right now. I'm sure in a few days I'll be more optimistic and upbeat, but for now life sucks. CF sucks!!!