I deliberately did not call for news on Joshua yesterday; I wanted to show that I trusted them to get on with things and also to prove to myself that I could do it. On the surface I was a calm , serene swan but of course, underneath I was paddling like mad, clutching my mobile all day long. But I did not receive a call all day or night and so I am expecting that to be a positive. I have not however achieved lie ins on two consecutive mornings, and today was back to my usual 5am.
The timing of respite was good as we had been invited to a Christmas house-party last night and usually, as it is an annual festive event, we struggle with childcare as Yorkshire Grandma has always gone away by this close to Christmas – she left us on Friday to stay with her daughter and family for the festivities. But this year, as it coincided with Joshua’s first respite weekend, we could accept the invitation without hesitation.
Everyone asked after Joshua, how were his seizures, and they delighted in the month gap that we have been enjoying. But they all wanted to know the reason for the change and of course, I cannot say as I have no explanation. I find that people like to know why he is having a bad spell or a good phase, and sometimes there can be a reason like infection or over-tiredness, but not always. Over the last month there has been no obvious reason, his medication is unchanged and in fact he has been full of a cold, which might well have brought seizure activity on. He has been sleeping well at night – and often during the day too! – but I am not sure if him being well -rested is fending the seizures off or if he is sleeping well, because he is seizure free. So I have determind not to analyse it too much and just try to enjoy it, for however long it lasts.
I had a long chat with a mum last night at the party, whose daughter had also had brain surgery, but hers was due to a brain tumour. We compared notes as to how the experience had changed us both as people. Her daughter’s consultant had described her as a ‘lioness protecting her cub’ and it sounds as though she was very demanding while in hospital. I can relate to that analogy, although I have been likened to a more domesticated hedgehog – prickly on the outside but soft inside. I guess we need these prickles, or claws, to defend ourselves against any predators who threaten our family units. We also agreed that it has made us both more dismissive of the types of problems that others fret about, that the fear of losing our offspring, puts everything else into context as being pretty insignificant and makes us supremely grateful for what we have.