Monday, August 16, 2010
My mind has been in a fog...it is like when I was pregnant with Maddie and we did not know fully her tef/ea diagnosis…when I was pregnant they knew she had something wrong…but could not know for sure till she was born if she had full aterisa or a fistula…if her tube was long enough to attach back to her stomach or not…so it is the waiting game again…not knowing if she is stricturing in esophagus, has built up scar tissue, a narrowing of the esophagus or just that she is picky and sensitive to textures…so I am worrying if she is getting enough food and drink…she is only eating 4 to 6 containers of # 2 gerber pureed foods and 8 ounces of whole milk…I KNOW!! not enough…she is cranky and tired…she is not herself…I am not myself…I hate when people say well think of the positive…at least she is not (fill in the blank!)…REALLY…this is my reality and I hate it…an that is ok! Last week someone said to me that I need to get over my phobia of seeing Maddie’s future…that they know many people that had to see what there future looked like…me not so much...I said to her...NO thanks that it makes me nervous! And it really does I told her I will stay in this moment...a content moment...of a different fear…a fear that my little girls esophagus is closing as I sit here…that she is in pain and I can do nothing about it…that this will be a yearly tune up of her going to the doctor and having this surgery…so looking into the future is a raw deal…happy thoughts???