It feels like an age since I’ve blogged here, but equipped with my new iPad, I’m now more able to write in comfort. So I’m back to blogging!
I’ve just finished making my Mother’s Day card, as Mummy Jelly (as she is known to all on Twitter!) requested a homemade one this year. I have a severe lack of artistic talent, so were talking little more than stick figures drawn in felt pen, but I did write her a poem, so it’s not all bad.
To make up for my lack of skill, I used photos of my mum and me from over the years; me aged at ten months, six years, and twenty-three years (taken last May). And it made me think about how every year, Mother’s Day is really no different to any other for my mum. I can’t make her breakfast in bed and, even before opening her cards and gifts, she will put my morning blob of ointment in my eyes, then measure out and administer my medications. Then she will help me wash and dress, get me a drink, cook my Sunday lunch, liquidise it…the list goes on.
I hoped that we would have some help by now, as we’ve been looking for a carer to come in for a few hours a week, but so far we’ve had no luck. And even when we do, they couldn’t provide the nigh on twenty-four hour care my mum does.
The pain and discomfort of my disability and my illness can (for the most part) be managed, with pain relief and strength of mind and character, so if it only impacted on me, I wouldn’t hate EB so much. But I despise the fact that it means my mum is always a carer, never just a mum, a wife, or most importantly, a woman. She always has to take me and my needs into consideration, not even painting her fingernails in case it flakes into my wounds, or wearing rings in case they harbour infections. And even when I tell her I’m fine, and force her out of the house to meet her friends, I know she worries. Though I do smile when she comes home saying “I saw a woman pushing her daughter in a wheelchair in Marks and Spencer, and I missed you!”.
Though I sometimes wish I hadn’t been born with EB – I never enjoy it, but mostly I just accept it for what it is – I never wish that I hadn’t been born to my parents. I would always choose to have them and EB over having neither.
Every day I am thankful beyond expression for every single thing my mum does for me, but in Mother’s Day it really hits hard. That’s why I’m sending love and thanks not just to my mum, but to every mum around the world who is also a carer. It’s a tiring, often lonely job, and it is only going to get harder in the face if the government cuts in the UK. I’m one of the lucky ones who is able to actually put my arms around my mum and give her my thanks and love, but many daughters and sons can’t do that.
So while all mums are amazing, please spare a thought for carer mums tomorrow. They won’t have time to think of themselves.