Oct 27, 2010

It's So Hard

.....sometimes to watch your child ...
...want so much to be able to do things by themselves that they just can't do. Good effort though, good effort! Actually we were quite proud that she tried and was able to get both her legs into her jammies even if they were in one leg. It was cute. But then she didn't want us to do it for her.

To see your child and know she wants to be able to eat a piece of cheese but can only lick it. 

 Or want desperately to eat spaghetti and meatballs like everyone else in the family.  Every night she insists on having some of each and every item on her plate. Tonight she even put the spaghetti to her mouth. Tonight she didn't want her tube feeding. She shook her head no. After she was unable to eat the spaghetti herself she wanted me to put it in her tube. Sorry honey-baby, it doesn't work that way. Still, I was proud that she licked and tasted.  Maybe tomorrow we will have Cesar salad and spaghetti and meatballs in her puree. Still it's not the same. She's starting to know that.

Some day. Some day.


  1. Chin up Susan and sending strength in the giant form of a hug.

    You are so perfectly right she will get there some day. It does not make it any easier watching them struggle to do the simple tasks though does it.
    My heart breaks into a million different pieces to watch an attempted feat of a shirt go on, attempting to pull pants up, walking, etc.
    This journey is life altering and my perspective on life has changed in more ways than one could even begin to imagine.

    That is a beautiful sign, she is wanting the food, and making her own attempts, that is Huge!!

    I love you.

  2. My mom just said something similar today while we were looking around at "Bed, Bath, and Beyond". Keyan was trying desperatly to see what everyone else was talking about but it takes 4 times as long to see anything due to her visual impairments. It is sad to watch and even more heatbreaking when they themselves start to notice all of those differences. We are living it right along with you girl! Know that you are not alone!