I kept a blog, a long time ago. Wrote in it for about four years, give or take.
Then something worth blogging happened in my life, and funnily enough, I simply did not have enough time to write about it. I kept adding things sporadically, when I could, but the entries grew less frequent, and eventually you have to say to yourself, “I don’t update there anymore.” That was about a year and a half ago, and the entry prior to that was a year before. Yeah, it takes me a while to admit things.
So why start up again? And why a new blog?
Things have changed. Four and a half years ago, I became “one of those” parents. A special needs parent. As cliched as it is, your life simply isn’t the same after that. I am the same person; I won’t go as far as to say I am changed (although for many people they are), just that my life cannot be the same.
As my husband pointed out earlier today, we have spent all of our son’s life normalising him. We have minimalised his difference, and tried to keep his medical needs as matter of fact as they can be. We spent a lot of the early days in hospital but we have tried to become self-sufficient (his condition allows us that luxury), reducing his contact with specialists and therapists and allowing him to spend more time in the “real world”. We have encouraged him to be present and comfortable in public spaces, and we have fostered an outgoing and friendly social life for him. And it now seems that all of this is at least in some way working against him. I am frustrated and powerless and lacking a voice. So I gave myself one.
My son is four and a half years old. He has blonde curly hair and grey blue eyes. He is small and lean and fast. He smiles a lot. My son likes Thomas the Tank Engine and Lightning McQueen and Tinkerbell. My son has a hilarious sense of humour and never fails to make people laugh. He likes pickled fish but hates pickles, likes squishy cheese but hates chilli. My son has two older sisters that adore him and are every bit as unique as he is.
My son’s name is Corbin, and he has what’s known as a lymphatic malformation.
For four years, this has been one tiny aspect for us, one little detail in the vast uniqueness that is any child. Now that he is at school, it becomes complicated. He has a tracheostomy to deal with the fact that part of the mass adjacent to his trachea might impinge on his breathing. This means he needs an aide in the classroom. We applied for funding for that aide, and were told he qualifies for 39%, or only two days a week’s worth. He does not have sufficient needs to qualify for more than that.
So we have to find the other 61% from somewhere. I started this blog to try and map that journey. I worry, therefore I blog.
I’ve been rambling; when I have something more coherent to say I shall return and elaborate.