Lost. Shivering. Hazy moon is doing me no good.

My baby is sick.

And I didn’t even know it.

Today was Angel’s regular CF clinic appointment.  Outside of our visit last month for a cough that proved to be nothing much, she’s had no symptoms.  Her appetite has been great, no lethargy, no tiring easy.

I was expecting nothing.

Until we stepped into the room for her functions, and mother’s intuition kicked in again. From her first breath into the machine I knew. There was a problem.  Her breath wasn’t spiking up as high as it usually did.  Breath after breath was low.  I got worried.

The Fellow came in and examined her and didn’t seem concerned outside of her very low functions. Then she went to get the big guns, the pulmonologist.  First word out of the main doc’s mouth was x-rays.

What it came down to is once again we are on the edge.  The precipice of what could happen.  Our Angel has taken us to this precipice many times over the past year.  We’ve been ‘threatened’ with hospital time if she doesn’t bring up functions, or one thing or another.

Every time she succeeds in beating the challenge.

Every time I spend a month worried that she won’t.

This time it’s one month again.  Her functions must improve by December 15th or we may be seeing her first visit to the hospital at Christmas time.

For 3 years I’ve been sitting on the edge.  Waiting for the first big illness.  It hasn’t happened yet.  I’m not wishing it on her, I’m not wishing it on us.  I’m just tired of wondering when that shoe is going to drop. Figuring out how we will handle it. Worrying that we won’t manage.

I hate living like this.

I hate this illness.

I hate worrying that every little cold will be the big one.

I hate that my baby can be so sick and I didn’t even realize it.

I hate that her atypical form gave us three years of hope before dashing it with the help of Pseudomonas.

I hate having to force aside the fear and worry just to live each day with a bit of normalcy.

I hate the month to month.

I hate that for a few moments each day my absolute love for my baby is eclipsed by fear, worry and pain.