Normal?

Warning - random free flow of thought and emotion follows:

I wish I had a camera. Just by looking at her you can tell that Rebekah dressed herself this morning - in reality she picked things out and mommy dressed her - mostly. She wore pink socks, red sweat pants, blue fire department shirt, and a purple and pink "Dora" vest. The latter she put on by herself placing an arm through each arm hole with the vest upside down and then lifting it over her head and amazingly it came out right. She asked daddy to help her zip up the vest and then proudly pointed to the Dora picture and then to herself saying "Doh Doh, Doh Doh" Now you have to add the big brimmed multi-color beach hat and daddy's big slippers. She walked (a loose term) around the room looking like a beautiful little clown.

Sounds normal for a 4 year old huh? As I was looking at her that is what I kept thinking; at least what I wanted to be thinking. It struck me that in addition to the above she was using her right hand to push her IV Pole, complete with food bag and tubing running to a hole in her stomach where she eats, and had her G-Tube feed tubing wrapped up in a loop (to make sure she didn't roll over it) in her left hand. In everywhere we look, everywhere we go, everything we do we are reminded that things are not normal no matter how much we try.

This weekend at the snow outing we saw Josh and his family. Josh looked great and really seemed to be enjoying himself. You could not help but notice how blushed his cheeks were in the cold and, oh ya, the tube running out of his nose and taped across his face that he receives his food through. And his dad who couldn't leave Josh's side by more than 10 feet because he had an electric pump that might need to be used to suction out Josh's trachea at any time.

As we went inside the warming hut there was food, food and more food and everyone kept asking Rebekah what she wanted to eat and she couldn't eat anything. Last week we went to Costco and the "sample ladies" were out in force. One young, well meaning lady offered me a snack and when I took only one proffered "your little boy can have some too." When I politely said "She can't eat anything right now" the same lady insisted that "it would be just fine for her, really it would."

Regardless of what happens in tomorrow's meeting with the results of Rebekah's tests, can we ever return to NORMAL? Can we?