There was a time I had Finnian so bundled up and protected but it was affecting what I was able to do with my other 2 children. So who was suffering more that's right my other 2 kids were losing out on being normal kids being able to do normal child hood things all be cause of their brother. I didn't want them to resent him so one snowy day as they watched big fat snow flakes fall out side and school was cancelled, My oldest son said to me "I wish Finnian was like me and Maurs and we could go sledding" Man what a punch to my gut. So I took a few deep breaths and then then next thing everyone was pulling on snow gear. Finnian got bundled up and I put him in the jogging buggy and off we went to the hill to go sledding. So the 2 are having a great time and Finnian is sitting in his buggy and they ask can Finnian have a turn. The first thing was "no way" he might get hurt or get sick but the more I thought about it I realized I was holding Finnian back it was me that had him so wrapped up to protect him that may be I was doing the wrong thing. I just remembered what the head of the neurology department said to me " take him home and treat him like your other kids and if something pops up take care of it" I was protecting my child because of his issues but at the same time I was not letting him experience life like another child. So I put him on the sled and told my oldest son to push him off when I got down to the bottom. So I had just gotten to the bottom and I turned around and I see Eoghan pushing Finnian off. There I was thinking what the hell what if he falls off ? What if he is scared? cause I sure as hell was. Next thing we hear Finnian squealing in delight and he did stay on the sled. So when he got down to the bottom there was a huge grin on his face and he was signing "more", He went down the hill a few more times that day. I was so proud of him so since then unless he is sick he goes sledding like everyone else on snow days. Yes we get looks and people come and ask questions but the one thing you have to remember Finnian is a little boy and even with his disabilities he does enjoy doing regular little boy things. We just have to adapt and modify to his needs.
Finnian swims, he goes down the big slide at the park, he loves going on the trails the bumpier the ground the better he likes it that is why a jogger buggy is a great investment. He goes to the beach and loves to sit in the water that is where he first sat on his own for more than 30 seconds. We take him on public transportation yup he goes on the bus and the subway. He has even participated in a kids Spartan Race (Obstacle Course Race) all right it was the special needs race and he did get help but he did it.
I guess back in September of 2008 when the doctors were asking me for a second time to sign a DNR as he was in a coma and on a ventilator because his lung had collapsed because of all the medication they had to pump in to him to stop his seizures I realized how much he didn't get to experience so since then we live for the good days and do things. On the bad days we promise him we will do something fun on his good days. Yes I do know that he may go to sleep and never wake up, yes I do know that the next round of pneumonia he may end up ventilator dependent and we know the next bad seizure he gets even with all the medications could be his last. But at least we will have memories of what he did on his good days and what we did on his not so good days and the promises we made to him on his bad days. He is a gift that came packaged a little differently than my other two gifts but we have to remember to look past the wheelchair and his other inabilities and see the little boy that is in there and live life every day like its our last day because we don't want to have regrets. So that is why we do the things we do with Finnian.
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