In order to make the very most of our respite weekends, we have come away again and this time with my niece and sister. So we had to pack for both Joshua and ourselves which requires a lot of concentration, to try to remember everything – as it was we managed to forget several non- essentials.
I was excitedly making a lasagne early yesterday morning to take away with us ,when my husband appeared downstairs, saying that Joshua was awake and he had just put him back in bed, having found him wandering on the landing. We were enjoying an early cup of tea together , when we both heard Joshua downstairs too, he had gone into his Den. I brought him into the snug and started to prepare his breakfast , when he began to fit. Clearly he had felt seizures coming on and he had not wanted to be alone,so he had sought us out. This had involved coming downstairs alone however, in that pre- seizure state!
My heart sank as I thought ‘here we go again’ and I hovered with his rescue medication , while reassuring him between seizures. Luckily he did not require intervention ,as the seizures began to slow , then stop on their own. Joshua ate his weetabix hungrily with his medication, then he snuggled back into bed ,with his dad to ensure no more seizures took hold of him, while I continued with the preparations.
It was as though Epilepsy gave us all a little nudge, a reminder of the last respite weekend when Joshua ended up in A&E. It said, I am still here you know and I can easily spoil your plans. It said, make sure you don’t relax too much but always be mindful that I lurk around every corner.
But there was a massive silver lining : after a nap as I was dressing Joshua, he said words that I’d not heard for months : he said mummy and daddy , which always melt my heart, but also he threw in ‘don’t mess’ and ‘no way’ for good measure . So instead of waving him off, in his stripey tiger onesie for Children in Need, with a heavy heart, he managed to have me smiling again, with my fingers firmly crossed for a good, uneventful weekend.
I realise that there are many things in our lives that we cannot control and so simply have to begin at the beginning and go on until you come to the end, then stop. I have learnt to go with the flow and not to be too rigid in any plans that we do make. That being said, I’m hopeful that I will not receive any emergency calls this weekend , so that we can make the most of being away .