The Struggle

This has been a hot topic across many blogs, FB, and other social networking sites. Who are are friends? I mean our true friends, Who is our family? Blood ties or cyber family?
You know we really find out who they are when a special child comes in to our lives. Some of your friends drift away and the ones that were the casual friends become THE friends. The same with blood family you don't hear about the party until after the fact. Then they make the excuse "oh didn't think it would be something that he would be up to". My family far away are our family. There are times I just wish the Atlantic ocean wasn't between us. My parents, they are our rock. THey are willing to drop everything and be there for Eoghan and Maura they even changed their plans for a trip to Ireland because of our Finnian.
Our cyber family some have become more improtant than blood family. There are times you just wished you could be there for them I mean really there not just someone on a screen. We are happy for them when they are happy, we worry when they are sick, if they are in the hospital you just keep checking for the latest update because we are worried. Then there is a part of you that breaks when you see someone got their Angel wings. There are times you wonder is it going to hurt more when it is your child.

I think the biggest thing that I struggle with is people feeling pity and sorrow for us. You know our Finnian was the biggest shock to us but he is the biggest and best thing that has happened to us. We all go through the would have, could have,should have we you get told your child is different. Its not anything you would wish on your worst enemy the struggle that our son goes through. There have been days we have pumped more meds in to him that would knock a grown man flat on his arse but all they do is make our lad sleep for a little bit. Our special angels are the innocent ones they didn't ask for this, who in their right mind would ask for a child to suffer?

So to family and friends who have drifted away I get it. May be I would have done the same if I was in your shoes but I got to walk a different path. I know its hard for you to understand how I can love knowing that my child might go to bed and never wake up or that I could watch him go into a seizure and every thing I pump into him may not be enough to save him. Or that I might hand him over at the OR door and it could be the last kiss I give him. I get it you don't want to form an attachment, you don't want to see our child suffer, you don't want to hear that we haven't slept in weeks you don't want to hear us talk about where we put that tube. Acceptance is the biggest and greatest disability not the disabilities that my child has.

So when our child gets to walk in a different life I don't know if you will be able to stroll back in to our new life as even though our child might not be physically with us he will always be a huge part of lives. But our true family and friends will always be a huge part of our lives.

So to our true family and friends we love you all.