GCSE results time was a sharp reminder of this. I knew that if I could have taken away the anxiety and stress and the sudden onset of Daisy's epilepsy in the middle of Theo's exams, maybe he could have done better. He did brilliantly, given that he was the only boy in the school to have obstacle after obstacle placed in the way of achieving exam success, he got enough to get into 6th Form and there could not have been a prouder mum than me on the day he went of to school in his new uniform and shiny shoes, ready to take on the world. I wanted to say to to all the other mums who gloated about their child's A* results -"yes, but did your child witness their first tonic clonic seizure the night before their maths exam?, were they covered from head to toe in hives from anxiety the night before their english exam? did they have to open the door to the London Ambulance service when they should have been revising? Or did they do their revision sat on a parent bed in a cubicle in Great Ormond Street Hospital?" Every grade, every pass my son obtained was an A* to me, because he has worked so hard to get to this point. Not necessarily in terms of sitting in front of books and revising, but in keeping focused and keeping going when over and over the stability of our world has been shaken.
|Just for once boys, could you let me take a photo of you looking normal?|
Not only Theo but Xanthe and Jules too - the time has flown by, nearly 9 years since Daisy arrived in it and turned not only our world but their world upside down. They have had to put up with so much - constantly changing plans, people coming and going in our home, stressed parents, ambulances, hospitals, absent parents and yet despite all of this they seem to be doing OK. With a diagnosis of Aspergers it could have been so much worse for Theo but he has a good support network and system and while it's not plain sailing we have strategies and ways of managing.
Now Jules has joined Theo as a first former in the same school, he's not in the top set, it looks likely he wont be chosen for the rugby team yet, despite the usual 11 year old meltdowns over homework he is loving school and seems to be taking it in his stride, making friends, enjoying the work and particularly enjoying the lunches! And my beautiful big girl Xanthe has such a huge talent for all things creative, she clearly uses this as the outlet to manage the complexities of her life.
Our crazy, competitive, western world can sometimes make me feel resentful, not for what I have, I would not change my life for anything, but for the opportunities available to other people that are just no longer available for me, - caring for an ever increasingly complex child I have had so much taken away from me - a successful career, time with my children, time with my husband. There is so much more I want to do, I want to share the knowledge I have gained through having to be an advocate for my children but there is never enough time to develop all the ideas bouncing around my head (it's why all my blog posts get published very late at night), I want to give back more the charities who support us, I want to spend more time with the fantastic friends who support me, I want to change the world!!!! My life sometimes feels like it has been compressed into the smallest possible space for me to do all the big things I want to do.
Before having children I promised myself I would be a role model for them. At the time I equated that with career success, but now I guess it's about sticking with things, not walking away when the going gets tough, making the most of your talents and the time available to you and being a caring person. There are times when this house is chaotic, when hormonal meltdowns reign and things just go pear shaped, but in the big scheme I think I'm doing OK because my three older children have values and behaviours that I would have always wished for them, I hope I am a good role model for them. So what if we don't have A stars and gold medals and a wall full of certificates - tonight I'm giving myself a pat on the back.
|OK - now I see where they get it from..|