Some people..

         So let me get this off my chest. I am part of a group on facebook specifically for parents with kids that have hydranencephaly, and one of the girls posted about how a relative (names are not going to be mentioned nor the relationship to the child.) told them that it should be legal to let your child die if it is disabled. I was just recently talking about something along the same lines as this with my son's VNA nurse.

         How do you get off saying this? Let our kids die if there is a problem with them?! and the thing that pisses  me off the most is it's almost ALWAYS someone who DOES NOT have a child like this. You are not raising this child. Obviously there is a reason why you were not given a child with a disability. Now we all know why. Maybe you don't realize it, but these children are NOT burdens to us. They are our everything. In my case, my son is my world and if I had been told that I probably would have given that person a black eye. There is no excuse for what they said. I keep trying to find something positive in this, maybe they were thinking something different than what we thought and it came out wrong? I no longer believe that. I have noticed that people like to say things like this to parents with a special needs child and don't seem to have any remorse for how they just made us feel. YOU DO NOT NEED TO FEEL SORRY FOR US. We are not sorry so why are you? OUR CHILDREN ARE NOT SUFFERING. Do you see them crying constantly and looking depressed? I don't. I see HAPPY kids. They are loved, They are cared for, they are HAPPY. So what makes a person say this? I just don't understand why people say things like this. I have never talked to nor met a parent of a special needs child that has said they wanted to let their child die. and how could we do that? These kids deserve a life just as much as you do. They did not ask to be born, they did not ask to be given this disability. It happened for a reason. We may not know what that reason is but they were sent to US, not you, for a reason. don't be ignorant, and stop making comments like that. You are not doing anything but making yourself look like a jackass. 

           This brings me to my second point. I heard about a lady that lives not too far away from me who let her son throw up (he has a shunt) for THREE DAYS and did NOTHING ABOUT IT. what the hell?!? How can you let it go like that and not ask questions? that is a sign that your son's shunt might be malfunctioning! Do you realize you could have killed him?! People. Seriously. Piss. Me. Off. 

    

        

       For everyone who wants an update on Carysn: He is out of the hospital but is having some issues. You can call me if you'd like for a more clear update. I took off work this week, but may end up turning into next week also because I think we need to see another doctor with the way he has been acting. something is up and I don't know what it is. It's been pretty frustrating not knowing what to do and what is wrong. So if no one has heard from me that is why. I'm fixing the problem for Carsyn, because I ALWAYS tell him I will fix it, and I always get my way and get it done for him. 

       another issue I am having has to do with Carsyn's doctor. She is giving me a hard time about changing Carsyn's doctors. The doctors I want changed either a) dont know what to do with him or b) do not give him the care I think he should be having (as in listening to me, working with me and treating my son like a human being). She wants me to stay in the place I am because "it's closer" I do not give a shit how close it is. I was willing to drive to California for a treatment we weren't sure would work for Carsyn but if it's right for him and it will get things done for him I WILL DO IT. With or without your referral. I'm ready to tell her to shove that referral up her ass and I will find someone else to do it for me. 

Until next time. <3 Sorry there's no picture this time.