My husband and I were talking last night about Emily. He said to me, "this really sucks, what kind of quality of life does Emily really have?" As I type this as read those words the extreme feelings of sadness come over me again. What quality of life is this? Well, I know that we do our best to make her life the best that we can. We include her in things that we know she doesn't totally get or have the ability to do on her own. We take Emily places and make sure that she does what other kids her age are doing. We travel with her and give her experiences many kids without her struggles may never experience. So I think that we are providing her with the best quality of life we can.
I do not understand why Emily is on this life path, but I do know that I am honored that I am here with her on this journey. I know that she feels frustrated on her bad days and that she is so proud on her good days. It is just so hard for me to accept that this will be her only way of living life. I have to believe that there is going to be an "Ah Ha" moment in this journey and that things will normalize themselves. I have to believe that life doesn't suck in Emily's world - that this is the only way of living that she knows so it has to be somewhat okay. I have to believe in the positive and let go of the negative thoughts that bring me down and make me feel so sad. I have to believe.
So even though we all have good days and bad days, I am here to just remind you that life is full of ups and downs. You may not have been dealt the cards that you had hoped for, but you can always win with the cards that are in your hands, you just have to believe it!