Today should have been my dads 69th birthday. It should have been but it isn’t. You see a decade ago he lost his battle to cancer, which started in his mid fifties as a diagnosis of throat cancer.
Throat cancer is the pits, all cancer is the pits but my dad was always a fighter and in typical dad fashion he gave this fight everything he had. For a while it seemed that he was winning his battle, but the celebration was short lived, when the cancer returned in his brain. This was a battle that he could not win.
My relationship with my dad was a complicated one. He left home when I was 17 and we didn’t have any contact for several years. Truthfully he broke my heart when he left and it was something that I thought that he never truly realised. Until one day, in the last weeks of his life, in a rare moment that I got to spend some time with him alone, not surrounded by other relatives he said to me “I am so sorry that I have to leave you again”.
As I said it was complicated but nevertheless he was my dad, he still is.
This year it will be ten years since he passed away and I have been really struggling to come to terms with this milestone. Maybe it is because it is a decade and in terms of life we celebrate those milestones, but I think that the main reason is that it has dawned on me that in a ‘decade’, ten years from now I will be mid fifties, the age when he first noticed his symptoms and I am just not ready for that to happen to me.
My husband has never feared death, he is realistic in his approach to it. I however am not. I tell my children that I am going to live to 100 and that I have plenty of time to tick off my bucket list entries. But what if I don’t? We just don’t know what is around the corner, so do I start now to go crazy and fulfill all my dreams ? or do I plod along hoping that I do have those 55 years left in me ? My dad never got to retire, he never got to slow down, he never got to meet my youngest daughter. These are all things that weigh heavy in my heart.
Sometimes you ponder and think and turn things around in your head that you just cannot explain in words. I have been doing that for sometime now, wondering how to write this blog and if it would make any sense. I’m still not sure that it does, but then again hopefully someone will understand what it is that I am trying to explain and the questions that I am asking.
For me, I sometimes let my brain think too much and then I get stuck on a thought process that literally just blows my brain. For example: Death, I just don’t get it. I understand it from a religious aspect, from a practical point of view but what I can’t complete in my thought process is just what happens to me? Where do my thoughts go? I’m someone who likes hard factual proof and with death we just don’t have that.
At the moment what I am searching for is the answer to “what is different about myself and my daughter Bonnie?”. I am aware that many autistic people do not like the labels of autism, normal, etc and this blog is not meant to cause offence to anyone in anyway and I appreciate that some of my terminology may seem insensitive but please stick with me and if possible provide as many comments as you can.
You see I had recently read the book The Colour of Bee Larkham’s Murder’ by Sarah J Harris. The book is about a fictional murder and how an autistic teenage boy, Jasper, is caught up in the situation. It talks about how he develops friendships, some of which could be viewed as inappropriate and how he expresses his emotions through his art work. The most interesting factor for me though was that he suffers from synesthesia, which means that when he hears sounds he sees them as colours, below is a link which describes the condition in a much more detailed way if you are interested https://www.livescience.com/60707-what-is-synesthesia.html Jasper also has problems recognising faces and so when trying to piece together the events that lead to the death of Bee Larkham you can understand the complexities involved. https://www.harpercollins.co.uk/9780008256371/the-colour-of-bee-larkhams-murder/
This started me wondering what things that my daughter feels and understands as normal for her but that generally in society we would not have not considered. It’s a little bit like someone being born with something that causes them physical pain and that that pain stays with them for life, but because they do not know a life without the pain they do not know any other life. How many things does Bonnie have to deal with that we do not even know about and how much is she aware that the rest of us do not have those complexities to deal with.
Recently she said to me “Can you feel the moisture in the air?” So we had a discussion about the moisture in the air. It turns out that she can smell the change in temperature without even going outside. Now I wonder how many others also experience this sense and how it makes them feel. My Bonnie really struggles when it is cold and not a sunny day, we have lots of those where we live, and so is it an inbuilt sense to help her adjust ? For me I too could tell that the temperature had changed because when I went outside I used the senses of sight, I could see that the sun was going down and the sense of feeling because my body felt colder but I did not smell moisture in the air.
So how many more areas are there like this in her life that I fail to understand? How will I ever understand them because they are not even something that I have ever though about. For me the only way to do this is to talk, and then keep on talking. Initially when she would talk to me about how fatigued she became I would say, “well I’m tired too”, but then over time after talking about this I now understand that my tiredness is nothing in comparison to hers. I am aware from talking to other autistic people that some count the leaves on trees whilst taking a country walk. That some people deal with busy cities by imagining that the people around them are in fact trees, because this helps them cope with the sensory issues.
I am very much aware that Bonnie is Bonnie, in the same way that I am Kate and that we are all very different in life. I don’t want people to judge her for her autism, I want them to accept that she may not conform to what they judge as conventional but that if they spoke to her they would see the amazing abilities that she possesses. Her intelligence cannot be recorded in the same way that other children her age are tested because her understanding of the world is unconventional, not weird or odd or strange but just different. Maybe if we all stepped out of our boxes and took time to see what is around us then we may learn some of these different approaches to life and the world may be a better place.