Some highlights from Lucie’s birthday. She enjoyed her flashing toys and watching the characters. And then we went to the beach for a little bit while the sun was setting. She loved every moment.
My daughter is the cutest little thing. I know everyone says that about their kids, but here is my submission as proof. Lucie struggles with almost everything, she has what most people call ‘complex needs’. She relies completely on us as a family to help to support her, but she tries her hardest to do whatever one else does.
She has only two loves in the world, shoes, and teddies. Perhaps I come a distant third, but I’m not convinced.
We had a very relaxing day today. Mainly because the weather was really rubbish but Lucie had a big seizure and wasn’t herself for most of the afternoon.
I guess one of the things you realise when you have kids, or you’re around a lot of them, is that they all have weird obsessions. You expect the usual superheroes, or horses or fire engines, but my daughter is obsessed with shoes!
She just loves them, and I have no idea where it has come from. Granted, she is disabled, but since she could crawl around, she always had a shoe nearby.
Being the parent of a disabled child, I’m well aware that I need to curb my enthusiasm towards things. But today I am so proud of Lucie.
Not because she did anything special, or achieved anything anywhere near the markers that “normal” kids set down. But myself, my wife and son sat at a pub and had an enjoyable few hours. Not only did Lucie really enjoy the music being played.
Lucie woke us up at a ridiculous time this morning, but instead of wallowing in our tiredness we decided to get up and watch the sunrise.
What could have been a terrible sleep deprived morning turned into one of the most awe inspiring experiences I have had for a while.
There was just myself, my wife and Lucie on the sea front, with nothing to hear but the calm waves.
Whenever I write about my daughter and share it with others they always say how lucky I am to have such an inspiration. That of course is true, but I am lucky enough to in-fact have two of them. Because although our times are hard, and some days difficult to get through, we always have someone at our side to keep us going and that is my son James.
I hate thinking about him as a young carer, but at just 9 he is the most kind and loving person you could ever meet.
It isn’t very often I tap away on my keyboard in rage, but today is an exception to the rule. Publishing something in the heat of the moment is a stupid idea; I have a few hours to calm down and see if my emotions dissipate. If you see this, I have not changed my outlook overnight and indeed – the UK government hates disabled people.
The ridiculous pressure the current Conservative Government are putting on those in need is sickening.
A few years ago I used to write a lot about Lucie. Mention her a lot in posts about my life and also wrote a few from her perspective. Making light of situations when in reality it was my way of coping with feelings and emotions.
The greatest issue of which is lost sleep, and in a cruel twits of fate as I lay wide awake at a ridiculous time of the morning an old post shows up on Day One and it seems nothing has changed in two years.
For all of the time Lucie has been with us I have become accustomed to being awake at ridiculous times of the morning. Autism has provided some truly magical things in our life, but some truly difficult things too. Broken sleep is one of the hardest thing to cope with and makes everything that bit harder. Yet this morning it’s not Lucie fault, I’m awake because I’m actually sleeping better!