Those of you who know me will know how much I value the respite we have.
I cannot over-emphasise the importance of respite in our lives.
We love Alex. We love him. But he does place limitations, restrictions, extra baggage – call it what you will - on our life that, as we were planning our perfect little family of four, it’s fair to say Gary and I had not anticipated. At the age of 3 Alex should be up and running, toilet trained and when we’re out and about we should be down to a Maclaren at best. The reality – bulky takes-up-most-of-your-boot special needs buggy; changing bag showing no sign of redundancy any time soon; hills, cobbles and beaches still very much on the list of things to be avoided. On a day to day basis, this is ok, because you take life as it runs and you are grateful for what you have but… Were our life to always look like that, well, I’ll be honest, I’d be rocking in a corner.
Every other weekend Alex goes off on Sunday morning to be with his just amazing cannot-find-enough-superlatives-to-describe-her carer and her amazing family who have wholeheartedly taken him into their lives. It’s a little like sending him to the grandparents he can’t go to though I know they’d love to have him – because he is heavy, because his needs are many – and getting that wonderful undivided attention only people who aren’t his parents can give him.
And us? Well, we slow down. Life becomes leisurely, meals become slower. I get to feed just me, not me and Alex. I don’t go to bed worried he’ll wake up in the middle of the night. And we get to spend concentrated time with Emma. Just the small stuff, hanging out and reading together, watching tv, going swimming or to the cinema but, for that brief window, just focussed on her, no interruptions. Because sometimes she can get lost in the maelstrom that is our son.
Emma and I at Lyme Regis last summer. A beautiful day, just the three of us.
And when Alex bowls back in on Monday afternoons we have missed him, we cannot kiss him enough and we are ready to take on the world – with all that the world of Alex entails – with gusto. And with love.
This was at the Swannery in Abbotsbury – perfect disabled access, so all four of us had fun.
Mencap are currently running a campaign to highlight the importance of respite, which you can read about here: