30Dec07 - Post Christmas

Christmas is over for another year. It was nice to spend time with my family and we all had a lot of fun. Lucy enjoyed the time even though she was struggling with a bad cold. She has deteriorated since then and as yet the antibiotics which she started on Thursday have not really worked. Her temperature keeps spiking and so is having intermittent doses of paracetamol to help control it. She has become quite sleepy and her cough is not showing any real signs of improvement. We have decided that if she hasn't improved in the morning we will take her back to the Doctors. There are plenty of nasty colds around at this time of year and she is unfortunately more vulnerable to them. She is also less equipped to fighting them. It just seems to take her a lot longer to recover. It is a concern that the antibiotics have not been so effective this time. I always worry about the number of times she has had them and how effective they will be in the future. Feeding time is a challenge at the moment with every mouthful causing her to cough and splutter. As a direct result our washing pile is rapidly growing and our tolerance to Lucy spitting food in our faces is being severely tested. At times like this life feels more difficult than it should and this is compounded by those unspoken Christmas thoughts which will linger for some time.

Christmas was a really good but at the same time it is on occassions like this that the differences we face with Lucy are magnified. Lucy is at an age now where she would have really started to appreciate Christmas. She would have been so excited to have a stocking in the morning, hanging from the end of her bed and a pile of presents to open under the tree. We should have been looking forward to the look on her face as she ripped open her gifts and to seeing her playing excitedly with her new toys. She should have been running around playing with her cousins and should have been able to sit at the Christmas table, maybe even pull her own cracker. Instead we have to do our best to make the day feel different from any other day, let her feel her presents before we open them for her, try and involve her when really she was probably not aware of what was going on. I don't know what got to me more, the feeling that she was missing out on the magic of Christmas or the feeling that I was missing out on seeing her enjoy it. I have tried to tell myself that she enjoyed Christmas in her own special way and that we did the best we could to make it a special day for her. This only helps to shroud the sad reality of Lucy's disabilities. I hope I am wrong and that Lucy is able to draw as much enjoyment from special occassions as I percieve to be normal.