Last night saw me hit a wall and crash. Things have been building up and my ‘mask’ has been coming out more and more. Finally my mask broke and I broke. There is just so much going on in my head that I felt like I was going to explode.
It was tipped over when William recently had his annual EHCP review – lots of pre-reading/reviewing then a 2 hour online meeting with school last week with teachers & Matt, then the final report with assessments. Although I know he is improving in himself, it just sends that smack in the face highlight of how different (english & maths) he is to his peers. And, it is upsetting. And there is nothing more we can do than we are doing already. But, I am trying and always searching for how I can help him more, what further interventions are there.
This is the thing, I cannot save his life, I cannot find a miracle cure – I will try my hardest to raise funding for research but I am no scientist. I can educate myself about Duchenne and the effects it has on my son – and the more I do that the more I look for further interventions to try to make his quality of life better. The more I look into interventions, research and therapies – the more my inbox fills, my to do list grows and my anxiety grows. I want to do my best by him but I feel a little overwhelmed. Obviously, Covid has not helped – we have not had hydro/swimming/horse riding for a year and he suffers because of this.
We had a chat, I unloaded, we are a good team – but what with my work pressures being ever more over the past 8 months, the house to run, a family to love, a need to have my own time/space and a disabled child – I needed to offload emotionally and also physically hand over. I am not a ‘superwoman’, I am just a mum juggling that bit more than your ‘average’ mum.
Just when you think you are getting there, talking about it, seeing a friend to have a chat. I pick up William and he collapses in front of my eyes when walking out of the class door. In front of everyone. In tears. Tough mask on again, scoop him up, cuddle him lots, put him in his chair and walk off…..the mask doesn’t stay on for long, I am only human and it is breaking my heart.
I will forever keep going to support my little family, through good days and bad but as things really have started to ramp up with William’s support and care, I NEED to share more and more and accept that the plates will crash if I do it all on my own.
#duchennemusculardystrophy #sendmummy #sendparent #juggling #defendingwilliamagainstduchenne