It's Hard to Know....and It's a lot of pressure when you don't

Since having Ayla and learning of her illness I have become a Dr, Nurse and Nutritionist among other traits.  I got my education from the school's of "NICU education," "paying attention" and also from "asking around."  I have learned a lot from these but my knowledge is always questionable.

When you have a baby something inside of you changes and a certain intuition occurs for your child.  I can literally feel it in my bones when something's not right with Ayla.  But unfortunately with Cystic Fibrosis some things that would be "small potatoes" to others should be taken seriously and it's hard to know the difference.

Since I am a "stay at home mom" and primary caretaker of Ayla most of those kinds of decisions fall on me.  Not that I don't call my husband to get his take on things....but I have that intuition and most of the time the weight falls on me.

At times when a cold flares up or a consistent complaint occurs I get very stressed out.  I get worried that maybe I haven't handled this or that the way I should have.  What if this turns into that and I could have done something about it?  What if I counted on my so-called "intuition" and it fails me?

Ayla has had what most people would say is just the "normal" cold that kids pick up when starting school.  It went away and now it's back.  How long do you let something go before calling the Dr? We all know that prescriptions are given out quickly with CF to prevent illness taking over in the lungs....when should you wait and when should you allow them.  Antibiotics have their own set of disadvantages for our kids.

I just sometimes feel like I would love to just brush a cold or random complaint off my shoulder.  I would love to wear only the "mom" hat and not have all the pressures of wearing the others.  That is the card I was dealt.  When I get down about how CF affects me, I can just remember how much it affects Ayla.  I will always be here to put on a different hat each day depending on what she needs.  And when she's older I'm sure I'll wear new hats that will come along with new challenges.

I know that I can only do my best.....but it doesn't make it any less stressful when my best may not always be good enough....