What is normal when you have never felt normal?

How is she feeling?  She looks like she is doing great? Do you think she is feeling ok?

These are questions that we encounter pretty often and also ones that we wish we knew the answers too.  The doctors keep asking us to keep an eye out for anything abnormal or anything that is not usual for her like her appetite, sleep, level of activity etc.  I wish that we knew that on a day to day basis she feels perfect and there is nothing hindering her health and spirits.  The truth is, Katie has been dealing with her disease for so long that we are not sure if she even knows what it feels like to feel normal.  It breaks my heart that at 2 years old she is sad and cries a lot but does not know what is wrong or at least how to describe to us what she is feeling.  The doctors ask if there are drastic changes in her behavior or day to day health, the answer to that is no.  However being a mom of 3, I can tell you that it is not normal to be sad a lot, not sleep through the night EVER, not eat much, get tired more quickly, or spend hours in a day laying on the couch or wanting to do nothing but cuddle.  Do I think that when you look at our sweet girl you can see she is sick, no.  But I do know as a mom I know she is sick.  I know that her day to day behavior is not normal, I know that even though we battle through some of the normal terrible 2 stages, that a great deal of her moods and tiredness stems from never knowing what it is like to feel normal.  I know that when other people are around her they say she is doing great and seems like any other 2 year old, but I can tell you that the brief few hours people see her smile pales in comparison to the amount of time she spends sad or moody or tired.

We all have our good days and our bad days.  That it is a normal part of life, and one that I have always handled pretty well and tried my best to just roll with.  One thing I struggle with daily is how to teach Katie that those good days and bad days that she has so often will become her normal and until something new happens with research advances on her disease this is something she has to deal with forever.......

I want to be able to take away the yucky feelings, the tiredness, and the sadness she encounters.....

I continue to reach out and help in any way I can to find out how to keep this beautiful smile on her face always (aside from the usual ups and downs of life of course lol).....

I know that God's plan for me and my family is to become warriors with and for Katie along side of him and to learn from her strength.  I know that over the past 2 years of her fight with this disease God has been along side of her and our family...I know he has a plan.  My struggle is trusting in that plan, trusting in the pain and sadness she feels to know that the outcome will be part of Gods plan for her.