Tonight is one of the hard ones. This is steroid week and it usually is one big ball of fun(that is sarcastic, believe me). Since Summ doesnt feel good, it has become 10x worse. Her mood swings are off the charts when she is actually awake, she has an appetite but constant stomach pain, the only thing she wants to eat that doesnt hurt her stomach is ice cream. Today she slept most of the day, which was killing me that she couldnt even go out to play in the snow. She had a hard time taking her meds tonight, and it led to a moment od vulnerability that she seldom lets us see. We encourage Summ to talk about her feelings as much as possible and ask any questions she may have. She usually avoids it but tonight she told us she just feels like she is under so much pressure and is too little to deal with it. She starts crying and tells me she just doesnt want to die. I was proud that I kept it together at that moment and explained to her that is the importance of taking all of her meds and doing everything the doctor says. I told her how much of a fighter and hero she is to all of us, to everyone that follows her page. I told her that I am so very proud to have her as a daughter and she is doing an amazing job fighting this beast, but right now is just a rough patch on long journey. She calmed down and took her pills and went to brush her teeth. When she comes back she tells me that she realizes everything she is doing is better than dying and she will keep fighting. I cant begin to express all of my feelings tonight, I can just tell you that it breaks my heart that my 6 year old has to be so wise and deal with something no one should ever have to face. I can also tell you that there is no tool or words that can be used to express the pride I have for Summerlynn. She is tougher than I could ever hope to be. She is my hero.
Posted on: Tue, 18 Nov 2014 02:25:29 +0000
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