We went to Landon's Doctros appt yesterday. We then went over get an x-ray. The lady called us back to go get signed into the computers. Very nice although I feel like maybe she feels a little uncomfortable, almost like she wants to ask questions or feels really bad for me but does not know what to say. Then Landon and I got called back to this little room where you sit and wait to get into the actual xray room. There is one other lady sitting and me and Landon sit with our backs to hers. Landon is breathing very loudly, his little snorty breath and I turn around the same time she does and give a smile and a Hi. She says oh, that is a good sound. I didn't quite know what she meant so I just thought yeah, he's brething that is good right. So I tilt his head back to try and make him breathe a little easier and she says oh, he's not eating. I said oh, no, he does not eat that was just his breathing. Now, I bet that sounds exretmely weird, "he does not eat". I mean really that is by no means normal... She says what do you mean. I said well he gets all his nutrition through this tube, she says what is wrong with him. I go into the story how he has mitochondrial disease and aske her if she knows what it means. I go into explain things and by the look on her face, you would think that I had just totally spoke a foreign language. I really don't know that she comprehended any of it. Except for metabolic. So whips around th chair to sit next to me and with very sincere eyes, says oh honey, you should not even know what any of those words mean. She says how old is he, I said a year and she looked at me like, what. She said how long before he will eat food. I said never, her eyes got big and she said well what do they do for him. I said nothing, there is no cure or treatment and her eyes fell to the ground, Hearing myself say those words again and having no sleep the night before, I broke out into tears and I looked over at her as her eyes filled with tears and she said well what then. I said he is terminal and life expectancy is 3 years if lucky. I barely broke those words out of my mouth and by this time I am sobbing, I could not speak any longer, I so badly wanted to say more but I couldn't, She looked at me and said I am soo sorry and I got the words Thankyou out of my mouth before she got called back for her x-ray. By this time all of the xray techs were standing around and it was silent, except for my tears. I felt week and pitiful, here I am a little pea on the pod trying to make sense of the last 10 months of life and it boils down to the fact that this should not be happening! My life should not have turned this abnormally sharp corner. I feel like I have total control and then all of a sudden a brick wall falls me and everyone around.
I am glad that this incident happened yesterday, reminded me that this is not normal. We are living a nightmare and no one should go through this, but the fact is that this has happened and in the real world, it happens all too often. All too often that children suffer and freak accidents happen that take our loved ones away from us. It really just isn't fare that we have to live the rest of our lives without them. On the other hand, when they are ripped out of our lives, they go somewhere beautiful, a place where there is no evil, just beauty. A place where they can run, eat, play and laugh. Life is just beginning.
although as night neared and temps grew cooler he was awake and sat with us on the back porch and watched Paige throw the lure and play tag.
fish out with a net--freaks me out! But it will do for 
now~
although as night neared and temps grew cooler he was awake and sat with us on the back porch and watched Paige throw the lure and play tag.
fish out with a net--freaks me out! But it will do for 
now~
