Like most things you are very blind to things around you, until you find yourself in that particular situation. For example I never really noticed pregnant women until I became pregnant. What I mean is I noticed they were pregnant, but it was only when I was pregnant that I actually really noticed the way they walked, the way they affectionately looked down and rubbed their tummies and the way they just seemed very happy. That was because I was pregnant and could relate to them and the way they were feeling. I guess it was also because being pregnant was so exciting and that was practically all I found myself thinking about and dreaming about.
Similarly I noticed children that were disabled that passed me in the street, as I would notice the obvious, such as a wheelchair. Now I find myself in the situation where my own daughter is disabled, I notice different things that are not so obvious. If people pass Isabella sitting in her buggy they probably wouldn’t notice her disability straight away. I now see other children that may or may not be in a wheelchair and notice their similarities with Isabella. Don’t get me wrong however, I certainly don’t stare. I am just more tuned in and I wonder what is wrong with them. Do they have a diagnosis or are they another one of the thousands of SWANS in the UK and around the world. Do they have a good support network? Do they encounter the same problems with the system that we encounter? Are they happy? Do they get bullied? How do their parents cope? All these questions fly through my mind in the split second it takes for them to pass me by; because like when I was pregnant, Isabella and her special needs and undiagnosed condition are always at the forefront of my mind.
I suppose it is kind of like an obsession. I find myself on the internet reading articles on disabilities, conditions and research studies. I want to know as much as I possibly can. I take out books from the library, both factual and biographies. If I come across a word or condition I haven’t heard of I will google and read up on it until I understand it. I have a thirst for knowledge. I would imagine any family that has a child with a disability is the same and in particular families with a child with an undiagnosed condition more so, as they are always looking for answers.
Although I knew people with disabilities had it difficult, I never knew just how difficult, until it became apparent Isabella had a disability. Just watching Isabella struggle with the simplest of things makes me realise how you can take things for granted and how it all comes so easy for people without disabilities. Just picking up a cup or picking up a spoon to eat my food are effortless tasks and don’t require any conscious thought. Isabella on the other hand cannot hold a cup or pick up a spoon, as her fingers will only close for a few seconds before they open up again and she drops the object.
I can stand up and sit down. I can walk and I can run. My body has these processes nailed down and the steps taken are so quick the movement is fluid. For Isabella her physical development is a slow process where everything is taken step by step. Just practising to sit requires lots of effort and help from me. Isabella needs helping bending her knees and keeping her legs on the ground, she needs help holding her trunk and help with her arms and then she will only sit for a few seconds before she flops forward or flops backward. I can see the determination in her eyes and hear the frustration in her voice, but she will give it her all before she becomes tired.
Isabella may struggle with the things that we find simple in life, but given everything that she has to battle against and despite all of her problems she is always smiling something that we could all learn to do a little more….