Waiting

The girls are running around the house in some sort of crisis. From what I can gather there is a Princess in distress and some sort of Fairy Godmother catastrophe. I on the other had am walking around in circles. I have lots of things I can be doing that would be WAY more productive.

We still have not heard back from CHOP genetics. I do know that they will HAVE to call eventually right? I am suspicious that the genetic counselor is ill. As least that better be her excuse. I just left another message. this time I requested that she at least email me that there are no results to speak of, if that's the case. This way I can stop wondering.

Everyday I feel like I can't carry on anymore. Everyday I do. Time is so very L-O-N-G. I am simply ready to face the next step. I just want a call to say there are no mutations and Allan and I most likely have a premature baby who can't hear. My soul longs for that and for this worry to be released. The Bible tells us not to worry about tomorrow. I am doing my best to not. I actually think that I am succeeding as I never even know what will happen in the second part of my day.

I desire to get back to "normal" and to not have to think so hard. When you loose one child to illness it takes all your fight. To have to wait on a diagnosis for the second you enter the battle with little to no reserve. We carry on as best we can, but we are so very weary. We get out of bed and face the day as best as we can because God is giving His strength to us. But everything is just so heavy. There are many moments of brightness that are like breaths of fresh air. These things push you to the next minute, hour, whatever you need to plod through.

I am sick of scrutinizing my baby and wondering "is it starting?"-the beginning of the end. I am tired of the "if-then" scenarios as we try to plan what the next best step is for Ava. I am plain tired of wondering what we can do to avoid what happened to our son.

We made peace with not "knowing" what happened with Eric. Now we are being forced into investigating that. That is not such a bad thing, if we would have been prepared for what we are finding out. This disease, while not pretty, doesn't necessarily have to be fatal. Unless it's mismanaged. We are finding out that were things that could have been done and or avoided. I don't know how long Eric would have lived if these things were done or avoided. I do know that his system was so insulted that God deemed it fit that he be healed and ushered in to His presence. In my mind that 's not so bad for him. I'm OK with that because it was God's plan. But boy oh boy I was not expecting to find that out almost 6 years later!

My mind and body are weary. But my soul feels vibrant. God is holding us and protecting us. I know He's giving us the courage to walk this path. But it is hard, scary and exhausting.

I am feeling these thoughts and what I am hearing are my three daughters singing, "The old man built his stuff upon the rock!" (Which I am pretty sure is a derivation of "The wise man built his house upon the rock'). They are all dressed up in hats and various dog ear head-bands. And somehow this will help the princess and save the day!