Wednesday, 11 June 2014
This year sees my brother turn 'the BIG thirty' and whilst 30th birthday's are special ones, this one is even more special. My brother Jonathan has Down's Syndrome and he could not be more excited about his birthday, mainly because everyone keeps asking him what he wants to do. The majority of his answers are food related, BBQ's are a popular favourite with his birthday being around the August bank holiday. Also he LOVES them and would be quite happy to have one when it snows...
There are no real plans set yet but every week the list of ideas grow. Just today I thought about two more ideas, it's quite clear that his birthday might be celebrated for the entire year! Which actually is pretty much deserved.
At school I had to do a project for English class and I picked my brother as my project choice. Whether this was coerced by the school to help others learn about Down's Syndrome as my brother was at the same school as me or maybe it was my own idea, I don't know. I suspect it might have been a bit of a mix of the two. I don't remember my parents telling me that Jonathan had Downs, they must have done at some point! But I don't remember it at all.
Investigating Down's Syndrome for this project I remember confused me and it was through this that I found the most devastating piece of information.
The average person with Down's Syndrome will have a life expectancy into their mid-twenties.
I didn't cry. I didn't ask my parents about it. I just accepted it. It sounds heartless the way that I have written it but there wasn't a thing that I could do to change it. In a way, I guess I accepted it. Like I accepted he was slower to learn things than I was; slower to crawl, to walk, to talk.
I never thought about that sentence until a few weeks ago, just after my birthday when I suddenly had a flashback to that moment. It was almost a celebration of the fact he was still here, he had beaten those odds that years ago seemed like his fate. Advances in technology and advancements in care have seen the average expectancy rise up to the 60's and beyond.
So with a bit of planning he should be in for the best 30th birthday ever. That's my plan!
*The above song was the first song that my Mum heard after my parents were told that Jonathan had Down's Syndrome. Always such a beautiful song with special meanings for us :-)
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