When the three of us are out we have a choreographed dance; for navigating doors/ pavements/ people, responding to Seth's needs and sharing a meal with Seth. I especially like how when eating out we will take it in turns to eat so that Seth's food is chopped up, cooled and then given to him without one of us getting too hungry. Obviously, we have enough times when the dance turns into more of a battle but more times than not we are in sync.
But the team falls down when we are all ill! In fact these past few days I've been trapped under a duvet with my head full of feverish thoughts realising that we've been going about things wrong. We were so happy to strip away the level of equipment support as Seth needed it less but we've missed a vital point. That we should plan for the worst contingency, not the best. Because this week I haven't had the strength to carry Seth around but, being poorly too, he's refused to walk and in fact been pretty much a dead weight. We don't have a chair that we can move Seth around in the house anymore so there is no alternative. And carrying Seth upstairs for a bath at the end of the day?! Ha!
It has made me acutely aware of how dependent Seth is on us. If Craig or I don't get up out of bed in the morning then Seth doesn't move. It doesn't matter how tired, ill or worn out we are - Seth can't climb out of bed, he can't reach for a drink, he can't do anything but lie in a nappy that he's worn all night, trapped in a room alone.
Well we are getting a wet room hopefully February and we are getting a replacement chair. Our lack of suitable chair for Seth has been holding up our respite and so a replacement has been rushed through but with no consultation from us. I've been so busy I was almost tempted to let that happen given our need for respite but this week has reminded me how important the equipment we have is and there is no way we should allow a new chair - something that Seth and us could be very reliant on at times - to be chosen without any input from us. Even a month's delay to our respite will be worth us not being saddled with another rubbish chair for the next two years!