22Aug07 - First Post

The morning routine was not a particularly happy time today. Lucy is not quite herself and whimpered from getting up to leaving to go to the park with Dawn. We are going on holiday on Saturday so the last thing we need is a chest infection or worse. I got the dreaded job of brushing her hair which always makes her scream. Her hair has grown so long and it is really pretty but after a night of squirming it is usually like a birds nest. Its another busy day for Dawn. This morning the park with our new friends who we met recently at the local Champion Children Awards. They have two little girls, Eloise and Bethany. Bethany has a genetic liver disorder (Progressive Familial Intrahepatic Cholestasis type 2) and will need a liver transplant in the future. They have their own blog with daily posts (http://fairenuff-familypficblog.blogspot.com/) which gave me the incentive to finally start ours after setting it up in May. We (well mainly Dawn) have met so many people through Lucy. Lucy has been the catalyst that has changed our lives completely but three years on we are beginning to appreciate that actually she has brought so many good things into our lives. We certainly are living in a different world from the "Mainstreamers" (people who don't have disability in their lives) but its really not a bad place at all. This afternoon yet another home appointment. Lucy is getting a new bath seat which will help us lift her in and out of the bath. She is starting to get very heavy now and washing her hair has become a two person job. I think there is also someone coming to have a look at the house because we are going through the unpleasant process of talking about adaptions to the house for Lucy's needs. Lifting gear, special washing, changing and bed facilities. All these visits and appointments remind you how abnormal your life is now and unfortunately because I work Dawn has to deal with majority of them. On the other hand the support we get in the way of equipment is very good, you just can't help feeling like you don't want it.