I don’t usually add trigger warnings to my posts, but I feel it might be appropriate here to start off by letting you know that this post will be kind of heavy, and will mention child loss. Not us, we’re fine. But others sadly are not…
A few days ago I learnt that the young son of a mum I’d become familiar with on Instagram had passed away, unexpectedly. I don’t know any details of what happened, just the devastating fact that a very loving family lost their sweet child. Truly heart-breaking.
It’s hard to grasp when a young life suddenly is no more. Even when it’s someone I’ve never met, and only ‘know’ through their family’s social media, I struggle to process it. So many thoughts and feelings…
My mind wanders and I think of Kreed, of ‘Kreed’s World’. An autistic boy in his late teens, who I first came across on facebook, some years ago. I was excited then, to have found a boy who seemed in many ways similar to our own son, but a few years older. Autistic, with learning disability, often sensory seeking, and learning to use AAC to communicate (as he was nonverbal/non-speaking, just like our boy). Seeing Kreed was a bit like having a glimpse into the future, of what our son might be like when approaching adulthood, and that was something I felt had been missing. And his family had such a great attitude to life too, with lots of little (and not so little) adventures, striving for Kreed to live a very full life, with ‘no limits’.
And then, not very long after I’d first found Kreed and his family, Kreed died… It made me cry in public at the time, and it still makes me cry to this day when thinking about it.
Kreed’s death made me more aware of how medical negligence is an added risk to individuals with autism and learning disability, on top of the already higher risks of accidental death (most commonly by drowning). It also dawned on me that while I was worrying about who would care and look out for my son when me and hubby are no longer around, there is also a real risk that our boy won’t outlive us.
Kreed’s death, and the rich life he lived until it ended, brought it home to me how life can’t wait. There’s so much to explore and experience, and life should be for living, not merely surviving. My son is disabled but his life can still be as rich as if he wasn’t. It should not, for example, be a tedious process of struggling to prove his worth, to people who only ‘care’ because they’re getting paid to do so. And when it all comes to an end, for either one of us, I want to know that it was a life well lived. Enjoyed, not endured.
Thank you all for reading. Your thoughts and comments are as always welcome below x
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