I’d never really thought about this until a few weeks ago, when my husband made a comment about how having a disabled child, in effect disables our entire family.
I looked at him strangely at this point and asked what he meant… he shrugged his shoulders, ‘dunno really’ was the answer.
It made me think… and I think he’s right in a way.
As a family what we do is affected by Sam’s issues – he’s in a wheelchair, so if we’re out together and he can’t get into somewhere, then neither can we.
At the same time though it makes me feel strangely uncomfortable and I’m not sure why. It's possibly just because I don’t like labels, my son is a little boy like any other.
The fact a list of his various issues, health problems, and disabilities would be longer than your arm makes bog all difference… he is a child, first and foremost.
Children don’t see Sam as any different – it’s the adults who see the wheelchair first and the child in it, second.
Children see a little boy who they would like to chat to, to be friends with. Children think Sam’s wheelchair is cool, and I quote ‘that is so awesome!’
Access isn’t the only issue however. Isolation plays a huge role in disabling us as a family. When Sam was tiny he was too ill for us to go anywhere, I felt trapped and isolated in our home caring for a seriously ill baby, while his Dad had no choice but to go to work.
I was terrified of taking him out anywhere for fear of a seizure hitting (an inevitability), fear of how I’d cope.
Fortunately we have good, close friends and family who realised that we needed time and space but not distance, so they made a point of keeping in touch, gently, never forcing a visit but always there if needed.
I felt that pride I had when he was first born return, being able to take my beautiful boy out and show him off to the world – so what that he had seizures, he was still wonderful in our eyes.
From time to time the isolation returns, notably when he’s hospitalised, but now we know how to cope better and to keep in touch.
Social media is far more important as a tool to keep in touch than just to share inspiring quotes or videos of cats doing silly things (although they are incredibly funny, so please do keep them coming).
Not everyone is so lucky though.
If you have a friend who is a carer, keep in touch with them. They may not text back or return your messages but it will let them know that you’re there.
And trust me, they do need to know. And with time, they’ll contact you again… just keep that fine silver thread of connection there.
For a lot of families, it’s the light in the dark that they so dearly need x
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