To Care or To be a Carer…..

Is this the same thing? I often ask myself this question when I’m reminded that I not only ‘care’ for my son, but I am actually a ‘carer’ of my disabled son. Many people may not realise that a loving parent to a disabled child is actually not just that; but their carer too. You go through all the heartache of diagnosis, then you live with the reality that your life won’t just be different due to Duchenne being a life limiting disease. But, it will be different as a parent. Your child won’t develop like others, they will always need help with the simplest of daily tasks. We have to provide so much more for William above and beyond the love and loyalty of a ‘normal’ parent.

William is never worried that he needs to ask for help or that his mummy and daddy have to do far more for him personally than his peers or little sister. I worry, but that’s my job as a mummy – if I didn’t I feel there would be something wrong with me.

In the past 3 months we have also become his shield, his teacher, his friend, ultimately his Covid19 taskforce…..his resistance against this pandemic. The unknown.

Day to day shielding may have altered our lives slightly and, simplified many aspects of the crazy life we all live. However, the ‘caring’ aspects don’t really have the chance to stop – the care for William and Duchenne can seem simple, but the list goes on ….

I am still his sock ‘putter-oner’, shoe lady, bottom wiper, lifter into car, wheelchair pusher…. I am his Medical PA, his driver to appointments, his monthly prescription collector, his purchaser of equipment…. I am his daily physiotherapist, his drugs administer morning and night, his daily timekeeper for his stretch board…. I am his nutritionalist, his chef & dietician, his chauffeur to Riding for Disabled & Hydrotherapy…. I am his bather, his bath puller-outer, his teeth brusher, his night splints administrator! 

I am his campaigner, his researcher, his fight for a future. For a cure.

I am so much more than a regular mummy, his daddy is so much more than a regular daddy…… we are his carers.

This is no job we chose, yet no job we can ever leave.

There are carers among us everywhere, and to you all I salute you, I get you.

💙👊🏻💙

#duchennemusculardystrophy
#duchennecarers
#carersweek
#nationalcarersweek