Those of you of a certain age will recognise the title of this blog from the 1994 Oasis song Live Forever. I was and remain a huge fan of their music , however that particular line from the song often pops into my head when I am dealing with a ridiculous SLOS related incident. It makes me think of all the things I’ve seen as Jack and Lucy’s Mum , things that only certain people get to see. People who are the same as me , living a chaotic lifestyle because of their caring responsibilities. But anyway, back to the song. When it was released I was 21, I was at college , having fun, being carefree and wanton. The future crossed my mind now and again but I always envisioned that I would live a fairly normal life, you know? Get a job , maybe settle down and get married , go on nice holidays. Kids were never part of my plan , and I most certainly didn’t ever think in my wildest dreams that I would have a kid with a disability, I mean that would never be my life, it happens to other people.
Fast forward to 2018 and I’m living in the middle of a daily hurricane .
This week is a school holiday, so no school for Jack and Lucy . Lots of parents love to have their little darlings home from school, they bake salt dough together ( do you even bake salt dough ? I have literally no idea) , go on lovely walks together and just generally live the cereal packet norm. For us? Well we just batten down the f****g hatches and hope for the best. Jack hates being off school, he misses the structure and routine , his anxiety and nagging are 100 times worse . Lucy doesn’t mind being at home but she will use this as an excuse to resist further our attempts to keep her clean ( I mean she would happily walk around smelling like a tramps arsehole if we let her) , the ” no shower” mantra starts as soon as she opens her eyes. It’s exhausting. So this week I was delighted when Proudfoot came home with a plumbers nipple, I had never heard of one before and felt certain it was something that you could get two weeks off sick with, but no! This little connector has changed my life. It means that we now have a super long shower hose , so no matter where Lucy hides in the wet room I can reach her! Have that you soap dodger!!!
This morning I noticed that Jack has a blister on his ankle from he way that he sits cross legged on the floor, I called the resident nurse to deal with it and Jack took exception . Poor Proudfoot got a kick in his boyos for his troubles, which reminds me, I must book Cooper into the vet, he’s 6 months old now and keeps trying to shag Furbys . Jack also called me a pube for noticing his blister.
Lucy has also developed what we call an ” angry tit” ( obviously not in front of the kids) , when she is angry or frustrated she grabs her left boob and shakes it vigorously for emphasis , I first noticed it when I wouldn’t hand over my phone to her. She exacted her revenge a few hours later when I was stuck in a compromising position ( no loo roll , we’ve all been there) I shouted to Lucy to pass me some in , she quickly assessed the situation, grinned and said ” give me your phone first” . Mercenary little sod.
Today Jack and I went with my Mum to a local car dealership to choose a new car for my Mum. Fortunately our good friend Ross works at the local Volkswagen Sinclair garage so Jack was delighted to see him, the staff were great with him even when he nagged them all, sang Alice Cooper House of fire on top of his voice and then beeped the horn of a car he was sitting in inside the car showroom making everyone jump out of their skin.
This week I have dealt with an inordinate amount of bodily fluids, seen more naked bodies than I would have cared to. Been nagged within an inch of my life, watched Riverdance far too many times, administered medication, refereed fights and probably drunk too much wine. No salt dough for us , which is probably just as well as I don’t know how to make the stuff .