"That mom"

So I haven't blogged in forever and there is so much to catch you all up on. Hopefully you are all friends with me so you can read my daily status updates. Today I just felt the need to blog, perhaps in need of a good vent. I had a home visit today with the Ohio Homecare Medicaid Waiver this is the program we qualified for that allows us to have nurses help us take care of Luke. As she began to ask me questions about what has been going on in the reason months I started to tell her. Most days i am strong and i can talk about it all as if it is just another day in my life but as I began to explain the new diagnosis and the tests we are awaiting and the possibilities of the future I just lost in. I know the poor lady did not no what to say to me and all I kept saying was I never wanted to be, "that mom." Many people say things to me about how when they hear my stories they remember not to take things for granted they remember to appreciate things and most people are surprised when I say "YES Everyday i am grateful for the blessings I have - the health we have- and I see families everyday when I am at the hospital I do not want to be" usually the children on the dreaded 5th floor - the cancer wing. It's an amazing place but a floor i only ever wanted to see from afar! I too count my blessings and never ever wanted to be "that mom." I can't imagine the pain they must feel. For a second recently I have felt it. It has taken a long time but I have accepted Luke is not like everyone else the dreams I had for him when he was inside of me I have had to alter and make new ones. But even though during a 40 minute seizure we have been to a place where I know he could have left me it was only a place a temporary set back, a temporary scare , and we got through all of those seizures. But now reading and hearing what I know know of his new issues I know I am becoming one of "those moms." I have read the words fatal, the places where they mention that kids don't live long, the treatment options of bone marrow transplants. I am becoming "that mom." It's frightening to me because I worry about who I will look to to help me appreciate. I liked us being just that complex kid with no life threatening diagnosis. But now I am becoming, "that mom" I feel like there is no looking up anymore, no hope, nothing left to help me appreciate what we do have!