Monday, March 21, 2016


Happy Monday all! Today, we had a new Nurse come to our home for orientation. We are so Blessed to receive respite care during the week, makes my crazy life a WHOLE lot easier! This Nurse will be an on-call Nurse for when one of Sissy's caregivers have to call in. It was a great meeting. She was here for two hours, going over Kira's history, what care she needs through the day, etc. She was a very nice woman. I loved her personality and I really love the fact that she has a special needs daughter herself, after having 3 healthy boys...go figure! Let me get to the point of this post.. she asked me something today that took me by surprise. This was the first time I have ever been asked this question. As we were discussing Kira's early days and how every.single.proffessional across the board "knew" this child would not see her 2nd birthday, she asked me what made me choose to place Kira's feeding tube. It was a very honest question, and I can appreciate that. My response was, "As opposed to what?" "Not placing it and letting her go? That's not an option." The fact that this question was presented to me today is mind blowing because literally this morning, as I was doing my normal early morning FB scanning, I came across an article about Terri Schiavo. Reading about Terri's tube getting taken out and it taking her 13 days to pass, and how she was the first of what is now at least hundreds of cases for people with disabilities to go this way was just taking my mind on a spin. I am not here to judge anyone, I know this is an extremely fragile and personal subject, but I personally could never do it. .... Has anyone ever watched "Futurama"? Terri was healthy, she had her own vibrancy, she was responsive. There was no impending doom for her that she needed to be saved from. It's insane to me that because someone cannot communicate the way we think they "should" or because they are not capable of taking care of themselves, that they are not worthy to live. So, some people need to have caregivers, isn't that kind of why we are all here anyway? To take care of each other? Some just need it more than others. How Blessed are those that take care of the needs of ones that cannot give them anything in return? I think very. I will be really transparent here, I have had my moments of helplessness where I wonder if she would be better off if HE would just call her home. It's a HORRIBLE place to be in, let me tell you. When whatever was going on with her, that made me feel that way ended and she was back to her norm. all I could do was praise him for keeping her with us. I KNOW this is where she belongs. I don't know how long she will be here, but she is not someone who should be starved to death and let go, because she is medically fragile and has a poor prognosis. She is a BLESSING, a GIFT, and It is an absolute HONOR to be Kira Jean Beauty Queen Prettiest Girl I've Ever Seen's Momma!