World Cerebral Palsy Day

Yesterday was World Cerebral Palsy Day and my social media was flooded with photographs and posts from  SEN parents showing how proud they were about their ‘CP Warriors’ achievements! They mostly showed children overcoming their disability to achieve sporting prowess or to ride a bicycle against the odds. I loved the positivity about  what is the most common childhood physical disability, with 17 million sufferers across the world. Its impact is varied, ranging from weakness in one hand up to a complete lack of voluntary movement and Joshua is somewhere between those extremes, as he is independently mobile but 1 in 4 CP sufferers cannot walk. But he is less fortunate on the other statistics , being one of the 1 in 4 with epilepsy and 1 in 2 have a learning disability.

Joshua has not achieved sporting prowess or mastered the art of cycling, but he has achieved so much, against the odds in his life. Despite what must be a frustrating and exhausting condition, Joshua manages to have a smile on his face most days. Even after excessive seizures and emergency medication last Thursday in school, in recovery he was trying to engage with staff and to be cheeky despite how drained he must have felt. He thrives on the feedback that he gets from  others, whether it is a smile, a high 5 or some other social interaction, but he is looking for that all of the time.

Since the start of the summer, Joshua’s walking has improved incredibly. He now has the stamina to walk much greater distances than he has been able to cover since his surgery 5 years ago and he has chosen to reject the use of his wheelchair and prefers to walk, which is brilliant progress. So yesterday, despite the pouring rain, we all went out to  a Food Festival in a nearby market town. He walked between us , striding out and intent on where he wanted to go. We parked at M&S and  we made the mistake of walking through the store to get to the pedestrianised shopping area. But he halted at the M&S cafe and pulled to go in. Of course we followed his lead and he had an orange juice and a slice of chocolate cake, and he beamed over what he had make happen.

Once he finished that, we managed to get him moving again and headed out into the rain and walked towards the food stalls. We walked along one run of stalls, when Joshua again dragged us indoors, to a pub this time where we decided it might actually be time for lunch. So he got his way again. I am delighted that Joshua recognises what he wants and that he recognises what a pub or cafe look like to be able to achieve his wish. I would prefer him to say the word ‘cafe’ like he used to, when he is asking, rather than simply bending his knees and planting his feet, so that he will not move beyond the entrance, but I have to admit that it is a very effective means of communication.

Joshua has exceeded the predictions that he was given at 4 days old and I am pleased to say that I am confident that he enjoys his life. His life may not be anything like what it should have been if he had not suffered brain damage, but I am happy that he is maxmising his potential and that he has fun while he is doing it, so I am proud of my CP warrior too.

Its complimentary

Now that I am in my fifties, I have learned something about myself and that is, that I do not accept compliments well. I was described as being “amazing” before 9 am yesterday and it made me very uncomfortable, as I do not feel at all amazing, so I tend to deflect compliments rather than accepting them graciously. I usually explain that I am not at all amazing, but that I am simply doing my best; but that is not what the complimenter wants to hear ,so I must work on just saying ‘thank you’ and smiling rather than arguing with them.

But two people said that they were proud of me yesterday morning and I enjoy that compliment more and somehow, I found it easier to accept. I am strangely delighted that I might have made someone proud, and yet pride is supposed to come before a fall and it is one of the 7 deadly sins too.  My sister had posted on social media, on Purple Day, that she was proud of someone with epilepsy and I loved that, that Joshua made his Aunt proud of he copes with his seizures. So I thanked her and she told me that she was proud of me too, which was harder to take but still easier to accept than being told that I was amazing.

Perhaps pride in oneself is sinful and is certainly not the British way as we are raised to be modest about our achievements. I can recall being stunned by my Mum’s American friend when we were young who used to send mum letters detailing her daughters many talents, yet it seemed arrogant to us. But I do not think that being proud of others can possible be a bad thing, unless you start to boast about it perhaps. Joshua makes me proud every single day of his life, for the way that he breezes through life with a smile on his face, when he has faced so much pain over the years. I am proud of how friendly he is and although there is always a concern about ‘stranger danger’, I would be sad to see him stop waving at people he meets during the course of his day. I am proud that he is so affectionate, hugging the people that he cares about. I am proud of his cheeky sense of humour and at how it amuses him. I am proud of how well he tolerates his epilepsy helmet, his splints and big , clumpy boots without much complaint and at how little fuss he makes when facing seizures, lameness and surgery. In fact, Joshua is the amazing one, not me.

I think that all of my life I have striven to make my parents proud of me  – that has been my goal, rather than to be amazing. And so when I hear that I have done something right or well, that I have made someone proud of me, that is my best reward.