I am so out of practice of not having Joshua by my side that it takes some adjustment, for a while I felt as though I was missing, or had lost, something. But it is also a very freeing feeling, to know that I only have to be responsible for myself. So I made my choices yesterday, knowing that I could suit myself :
I was awake early, so after I had pottered about, I took the dogs out on a walk for two hours, setting out at 5.50am, knowing that I did not need to worry about Joshua waking up. I jumped in the bath when I got back from my walk ; last time I was here having an early bath, Joshua walked in on me and tried to climb in, but I was undisturbed. After breakfast, I cut the grass out front while my husband strimmed in the back – we could both be in the garden, without running indoors checking on Joshua in bed every few minutes.
We were ready to go out on our walk together around midday; it was simple, we just put the dogs in the car and left the house. It is a much bigger performance normally, putting on splints and boots, then rounding Joshua up and making sure we have emergency medicine and nappies on hand. We had a beautiful walk along the river, for an hour, to a country pub where we stopped for lunch. The terrain was rough in parts and so it was with relief that we were not pushing a wheelchair with us, just having two dogs each. Lunch was delicious outside, there was no fuss feeding Joshua’s long legs into the picnic table, we just sat down and ordered our food. I could eat my prawn sandwiches, without needing to feed Joshua too, I just focused on my own lunch. Then we headed back along the river another hour, feeling full.
We must be a familiar family group in this part of the dales; we went to an ice cream parlour that we often frequent on the way home for pudding. The first thing that the owner said to us as we walked in as a pair was ‘what have you done with him??!’ She was delighted when we explained .
When we got back home, I fed the dogs then enjoyed a short siesta on the settee. I did not need to settle or worry about Joshua first, it was simple- I was tired, so I napped. We headed out again to the cinema at 6.30pm to see the new Elvis film. We could not remember the last time that we went to the cinema and when we did, my husband will have seen an action film and I will have seen something that Joshua might enjoy with him. So for us to both see the same film, one we both wanted to see and both enjoyed, was a real treat.
So life as a couple, for this weekend, has been much simpler than normal and that has felt like a real treat. But it is not normal and for all its complexities and compromises, I prefer our family life with Joshua. Sadly Joshua needed his emergency medication for seizures just before we set off for the cinema. I know that my friend has Midazolam experience, on other children, not just Joshua, so I was not concerned that she would know what to do. But my heart sank when I read the message. I was not sad for myself, who was too far away to help, but I was sad for Joshua; sad that he will have been having so much fun on his break, and in the heat, that seizures were probably inevitable. Sad that his fun last night was probably over, as he would sleep or become dazed and that he would be left feeling awful for 24 hours. So I texted lots of questions, including did she want us to return to collect him, but once reassured, we continued on our way to the cinema. I had to ignore my mobile in the theatre, which made me anxious in case of an emergency, but I did do and became distracted by the film.
When the film had finished, I turned back to my phone and read that he had slept and had woken pretty happy. It seemed as though he would sleep again last night, which was my concern once the seizures had stopped, that he might keep my friend awake all night, which is not what she signed up to. The news of the seizures and Midazolam was a little injection of reality back into our weekend away, a small reminder of our reality. We will head home this morning, collecting Joshua en route, so that they can have some weekend as a family without Joshua in it too. I am really grateful for this break and a taste of how simple life without Joshua might be , but I will be running back to our reality with open arms, ready for one of his special bear hugs.