Always the *****

You know I am often called the *****. To be honest I don't really care. As the old saying goes " sticks and stones may break my bones but names will never harm me". I am the one that always spoils family functions cause unless Finnian can go I don't go. Sometimes we are all going and then the shit hits the fan with Finny and me and him don't end up going. Sometimes people are very happy that we meaning Finny and me don't show up. Just the other night there were a few jibs thrown my way but you know I don't care. My Finnian is just as much apart of the Family as everyone else. But they don't see it that way. Well you know they are the ones that are blind and if they took a real look around they would see that their perfect world isn't that perfect at all.

They all think I am the ***** that wants all the attention. Well you know they don't know me at all because I am not that type of a person. What they don't understand is I cannot leave Finnian with just anyone. He is a high risk for just any one to take on. I would not be able to go out and leave him in just any ones care he needs special care some one who understands what his seizures and other medical issues are. Even then he can put the medical professional through the hoops. He has done that even with his nurse who has been with us for nearly 4 years. He had a seizure that she had never seen him have and it did scare her. He can be asleep one minute and the next be in a full blown seizure that requires rescue meds and oxygen.

To plan to go some where takes time as we have to make sure we have everything we need for Finnian. I wish it was just throw a few things in a bag and off out the door but its not. Now its a bit harder as his pulse ox only has a battery life of 6 hours so we always have to make sure we can juice it up if we go out for the full day.

So you know jib me all you want cause I will tell you you wouldn't last an hour in my shoes.

This is a video of our Finnian having a bad seizure. I am not say you have to watch it but it might make you understand why as a parent of a very medically involved child I put my kid first.