Honestly… this sucks

Not the most creative title I know, and I’m not talking about my post by the way.

I’m talking about life dealing with medical conditions. Everybody is working hard in the race of life and some people’s race track is bumpier than others. Maybe you’ve found yourself running around in circles for years never realising you were doing it until you stopped to think. In any case we plod along.

Disability is often painted to be simply one of those rough roads

– plodding along isn’t so easy. The truth is however that the disability racetrack isn’t just rough, it has hurdles, lots of them. Some of these hurdles seem to grow ever taller just as you think you’re getting over it and you end up on your backside searching for the strength to get back up.

My daughter was diagnosed 3 years ago, although the genetic condition has just recently come through after lots of tests. Dealing with all of this is hard but the genetic information just shone more of a light on what was happening with Lydia anyway, so we didn’t struggle with that too much. However, Lydia is currently tube fed (NJ) and the tube needs changing regularly, unfortunately there was also a regular recurring difficulty in getting the tube in place. This is just a temporary situation as eventually we’re hoping for Lydia to have surgery to have a more convenient and long-term fixture for feeding which would mean we can blend real food for her.

When Lydia went for her NJ tube this week, we have been told that the reason they struggle to put it in place is because the transition onward from her stomach isn’t working efficiently so she will always have to feed beyond her stomach, meaning we won’t be able to follow our plan to blend food etc.

It just sucks, we’ve been kicked in the teeth again.

Disability isn’t just getting an early diagnosis and learning to cope…. It knocks onto more struggles. It doesn’t mean Lydia is more unwell thankfully and she isn’t really going to notice but you think – can we just ring the bell for a time out, we can’t keep taking these punches and having the things we were looking forward to being taken away.

There are no time-outs, there isn’t anything we can do so we just say…. this sucks – then we think about how we can make it better somehow and although you don’t want to, you think about the things you are grateful for.

Don’t feel down or bad about yourself when you just have to say that your situation is rubbish – Its reality and it sucks but the hurdles are just part of the race and we’ll still enjoy running it together.