I’m only human – I don’t have any super human powers except for being a desperate mummy! It is the end of a long, full packed 7 days and the drive to Addenbrookes to pick up William’s first steroids suddenly caused me to feel upset, scared and just overwhelmed in this huge step. I know it’s a step we must take, but I don’t want him to grow up so quickly, I want my little boy for life.
I’m sat this morning waiting for his medication writing this blog, unsure why I’m so upset and why it’s overwhelmed me so much, but then it hit me that this is a big step for me and Matt and deciding he’d start steroids was so far off when he was diagnosed 2 years ago. It wasn’t supposed to happen until he plateaued, and that’s now happened. I want life to slow down and to just cuddle him on the sofa forever.
There has been so much on this week; aside from my normal life as mummy, work and voluntary chair of the Pre-school! My two morning of ‘me’ time have been taken up with Duchenne related meetings and well, to top it off my poor boy has had two days off school with diarrhoea! But aside from that:
I’ve attended a full days conference with Duchenne UK – heard some amazing things and met some inspirational mummies and daddies travelling on this journey too. It’s something I’ve said before, but the unity you have with another duchenne parent is unexplainable, there’s just this connection. Trying to smile through but knowing that inside your fighting a very emotional fight for your boys.
Myself and matt attended school on Tuesday for his first psychological assessment linked to his EHCP full assessment which is happening this term. It was a 2 hour meeting discussing what William cannot do, finds hard etc etc. You know it’s for the best because ultimately this will provide William with the extra support he needs at school, but it’s not the easiest to sit for 2 hours and go through why your boy is so different to all of his ‘friends’. What I wouldn’t give to be one of those mum’s who picks up their ‘normal’ child! Or would I? I love my cheeky smiling boy so much I’d never change him for the world.
I had to complete a long survey called a ‘Behaviour Rating Survey’ which consisted of 50 questions about my boys habits and personality over the past 6 months! Another Joy, but it’s done and handed in to school!
It’s never ending this Duchenne!
In what was already an emotional day I had a lady contact me who has set up a funding page for Duchenne as her brother has just died of it. Now, I don’t know her, I feel broken for her, and was just overwhelmed when she said she has chosen William (out of the blue) as the first recipient of funding. Where do these people find the strength and love, just amazing from a stranger!
So what can I say? I’m still going, I’m still fighting this shitty disease, but I’m also not super human – remember that please!
‘You learn to live with it and life grows around it’