31.05.16

We are trying to find an even balance in our lives now that our daughter has left home and we have more time to consider ourselves first. This is not proving to be as easy as you might think. People ask us if we are going on holiday, if we are getting lots of rest and enjoying our new found freedom. They also ask how we are getting on and what do we talk about now that it’s just us. Change is a gradual thing, and it’s not easy altering the patterns of a lifetime. It’s not easy at all.

Thankfully our girl seems to be adjusting well to her new life in new surroundings with new people around her and a new routine to follow.  We, however, continue to have endless conversations about her with each other and now of course with her support workers and other professionals involved. We want to ensure she has continuity in her two lives and that people understand where she has come from and what she is capable of, what she likes, how she copes with life and how she expresses herself. Do they know their way around her iPad yet for example, and have they seen how much she loves watching videos of herself with her pals? Can they capitalise on this? Do they give her fruit salad when she won’t drink? And as for her books…

I am pleased to report that she has a new friend, a little dog who visits from time to time and snuggles up to her on the sofa watching tv, makes her laugh with his playful antics, allows an occasional stroke and goes on walks with her. He is patient and companionable, a great asset to the household.

We have got to know the staff well, especially the key worker whose dog it is. She is only a couple of years older than our daughter, wise for her years, intelligent, caring and with a good sense of fun. She sent us a selfie of them both the other day, both in leggings and tee shirts, hair piled high on top of their heads, clearly sharing a joke. Something so ordinary, yet heart warming and touching for us. We battled for years looking for clothes to fit our daughter and hated the trackie bottoms she inevitably ended up wearing. She went through loads of cheap shapeless tops too as biting clothes became a habit that was very hard to break as health problems emerged. It’s so much better now and it’s lovely to see our girl looking like anyone else her age at last.

While she has new adventures, we too are finding our feet and have started exploring the landscape around us in ways which were not possible before because our daughter uses a wheelchair. We walk on the Downs, through muddy fields beside grazing cattle, brave the elements on windy days and stride across the stoney beach, go to bars and sit on high stools, climb up and down stairs instead of taking the inevitably slow and crowded lift in big stores and the museum, and go out at night without having to book childcare. And how freeing it is to get home after a long hard day at work and not have to be bright and chatty with someone who has been there for our girl but takes their time to leave. Now time to unwind in solitude with a drink is possible.

It is Sunday night. We have had a lovely family weekend together with the usual mixture of out and in, fun and quiet. We went to a music festival today. A folky version of Abba’s SOS won the day for our girl who tapped her feet and smiled widely. The harmonies were amazing. Something for us all. We have managed to stay in the present for the last couple of days and just enjoy this time with her. Tomorrow we are going out to lunch with a friend before taking her back to her other home. And then our other lives will begin again.

To view the other Life in our bubble blog posts please click here.