I’m on my way home! I’m sat on a packed train full of people eagerly leaving London, anticipating whatever they have planned for the weekend.
I’m excited to see my mum and my sister. The past three weeks have been quite painful at times, and it’s hard to sit on the side lines while other people are there for her. It will be lovely to spend some quiet time with the family.
I’m really scared too. My sister warned me yesterday that Mum’s speech is barely audible anymore. It’s the faintest whisper, and even Hannah is struggling to hear. Mum’s refusing to use her iPad though. ‘Either use it or lose it’, she keeps saying. She won’t accept her voice has gone until it’s gone. Bloody-minded through and through, that one.
Still, it will be hard. I won’t be able to return to Leeds for a fortnight, so I fully expect this to be the last time I hear her voice, and that is sad. It isn’t even her voice anymore, not really. She is never going to yell at me in her soft Yorkshire accent. It’ll never quite be the same again. Nevertheless, I will treasure every word I hear her say this weekend.
We also received news from the MND specialists at the Leeds General Infirmary that she has high levels of carbon dioxide in her blood. This is the first sign of deterioration in her chest, and she will have to wear an oxygen mask when she sleeps. The news came as a shock to us all – it’s happening so fast.
I’m scared that when I look at my mum, all I will see is the disease. I’m scared all I will be able to picture is her deterioration. I’m worried that I won’t be strong enough to face her, and I don’t want her to see me cry. I can cry in private, with my sister, so Mum doesn’t have her heart broken by seeing her daughters’ devastation.
The two hour train journeys feel so much longer than they ever have, and it’s so much more daunting. Part of me wants to fly away, run back to my bedroom and hide from it all.
Am I a terrible daughter for not wanting to see her? I do want to spend time with her, and I love being with her. There’s just a tight apprehension in my chest which makes me want to pull away. Does that make me despicable?
Everyone says I’m so strong, but the simplest things are hard. Sometimes I will stare at a blank message on my phone and just not know what to say to her. Even a ‘Hi Mum!’ can take ten minutes, because when I think about her, I think about what she’s going through. I try to imagine how she must feel, staring into a future and seeing no hope.
It doesn’t matter how I feel, I will always be there for her. I will continue to get on these trains and make these journeys. I will be by her side as often as I can.
That also has to be my top tip for today – book all tickets in advance! I looked on the Trainline and a single ticket to Leeds this evening is £105. I booked direct through Virgin two weeks ago and my return ticket was £50.
I suppose I’ll be finding lots of ways to cut costs. Caring about and for someone with MND can be expensive, and I’ll have to save every penny I can – I’ll be unemployed in a month.