I can guarantee you that if you talked to every parent in the world who has a medically complicated child, they would tell you…. we spend at least 50% of our time in life feeling frustrated and confused. I used to mistake these two things for the minor irritations in life. You kids running through the house with muddy feet, screaming all the way from the back door to the front. You dishwasher constantly being full and never being able to tell if its clean or dirty. Laundry that seems to multiply instead of divide. Those things are minor irritations. I have learned that laughing at those things are the best way to cope.

I have also learned that laughing at the bigger things is the best way to cope… I mean what else are you going to do? Cry? Be pissed off? None of those things will do you any good. I cannot find it in myself to feel hopeless about things because there are sometimes when all you have is hope.

Today is one of those days when I find myself confused and frustrated. I get that “pit of my stomach” feeling and I just cannot make it go away. I ask tons of questions. I must totally annoy the crap out of people but how else do you learn if you do not ask? I promised myself that I would never FEAR our medical professionals. I would NEVER fear looking stupid and forgo questions that I needed to ask.

The bottom line for me is that we chose GOOD medical professionals. We chose the BEST as a matter of fact. We did our research, we talked for hours and hours. We have taken our daughter as far as we can. But the bottom line is now its THEIR time to help her. I am out of ideas and I have not a clue what to do from here. Sigh…………..

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