My daughter is fascinated with fairy tales at the moment. Funnily enough, her newfound love for the Three Billy Goats Gruff has coincided with my first ever experience of being trolled.
Off the back of the BBC article telling my story, which was published on World Parkinson’s Day this year, I was overwhelmed with messages of support and love, for which I am so grateful. I was approached about telling my story by Parkinson’s UK, who put me in touch with the journalist who wrote the piece. Just to get things clear: I write my blog to raise awareness, or consciousness, of Young Onset Parkinson’s (YOPD) and for the cathartic experience writing offers me. I do not write for any financial or other gain.
Among the many positive responses to the article, I only received one heavily critical Tweet about our decision to have children, in which the OP indicated that my children hadn’t chosen to be “born into misery”, and how selfish I am for “putting kids into the world, while knowing she won’t be able to give them the care they need”.
I was then asked to explain how I care for my kids. “Or not. Be honest.”
So, I give you: a day in my life. Today, in fact. Why not? It’s pretty representative of our routine. You might find this blog entirely boring. But it’s a clear reflection of what we did today.
I start my day in the early hours; awoken in the middle of the night by my 2-year-old. She gets in our bed and starfishes, out for the count for the next few hours. Husband snores away. I get a bit more sleep but at 6 am, when my son wakes up and joins us, my husband gets up with them for a bit as he knows I didn’t get much sleep due to being perched on the outside of the bed. He also knows I’m going to be on my own with them for two days, so he gives me that little lie in. I’ve been doing most of the lates and earlies lately, so this gesture is gratefully received.
I get up at about 7:30 and take my meds, drink my coffee, then get myself and both kids ready and pack everything up for their swimming lessons. Anyone with two kids under the age of 5 will tell you how long it takes to get out the house just to go to the shop; preparing for swimming lessons is an operation requiring military precision.
(Forgot to mention that my 2-year-old is potty training: add having a nappy-free 2-year-old to every step of today for the ultimate parenting experience, featuring several wins, and some losses, i.e. when bum and toilet don’t quite meet. Fortunately, today, the wins prevail.)
I get us out of the house on time (another win), and off we go to the leisure centre. Did I mention I walk everywhere? My daughter goes in the buggy, and we have a buggy board, so my son rides on that. As far as I’m aware, I just look like any other (tired) parent in town.
My son goes in the crèche – which he loves, as it’s like soft play – for an hour, whilst I take my daughter to her toddler swimming lesson. I swim with her. It’s a lovely 30-minute session that we get to have together every Friday. I get us both showered and dressed afterwards and we go to pick up my son for his lesson.
I get my son ready for his lesson, and drop him at the poolside with his instructor, then I buy my daughter a packet of Pom Bears for her to eat whilst we watch my son in his class. I took him swimming myself earlier in the week, and he jumped in for me (which he never usually does for the teacher), so I’m keen to see if he’s brave enough today. He is. Proud parent moment. I give him a big thumbs up through the glass and he grins. Melty heart moment.
I get my son showered and dressed and they both have a drink and a snack, and we go straight home today as I know I already have everything I need to make lunch, but we often pop to the supermarket or in to say hello to the staff at the Oxfam shop where I volunteer on an ad-hoc basis, as it’s on our way home. Living in the town centre definitely has its benefits. I love being able to walk everywhere. We go out more than once pretty much every day.
We get home and the kids are tired, so I let them watch some fairy tales whilst I make their lunch. Just sandwiches, strawberries, cheese, etc. I call this “picnic lunch”. They love it. Whilst they eat, I do some work. They don’t go to nursery on Fridays and I don’t usually work when I have them, but I have a deadline and a couple of things to check, so on this occasion I work for a bit while they eat. And, when they both sleep after lunch – which they do today, mainly as they are shattered from swimming – I work throughout their slumber, knowing I’ll get finished, so that when they wake I will be able to give them my full attention.
As soon as my daughter wakes, we watch the rest of Aladdin together, having started it earlier, pausing it when my son drifted off), then we go out to buy ingredients for DIY pitta bread pizzas. I treat them to a trip to the Oxfam book shop – we have a really lovely one in Farnham – and spend £1.98 on a Spiderman DVD and Humpty Dumpty book (the latter has already been kicked under the sofa).
When we return, after popping into a few other shops, I Skype my parents whilst I chop up pizza toppings. The children tell their grandparents about jumping in the pool and about their ‘new’ book and DVD. I talk to them about how I’m on my own for a few days whilst my husband works at an event in London; that I’m glad he has that distraction this weekend given that he’s seeing an oncologist early next week about his cancer treatment; it’ll take his mind off it.
The kids make their pizzas up and I cook them for them. They are delicious, and quickly scoffed. We eat together.
The kids play, and I run their bath. I bathe them, washing their hair also, since we went swimming today. I then dry them, dress them for bed, blow dry my son’s hair for 20 seconds into a crazy style, which he finds hilarious, jumping up twice to look at himself in the mirror, then read them a Moomin story before putting them to bed at 7:45 pm.
I work on another job until after 9, then I browse my social media, after eating nearly a whole box of orange Matchmakers. Well, I did parent solo today, and tonight, and will tomorrow.
And then I notice an unpleasant Tweet from nearly a week ago. My urge to write, to explain, to educate, to advocate, returns.
I care for my kids. EVERY DAY. I care about them. EVERY DAY. I am a good parent. EVERY DAY. I have Parkinson’s. EVERY DAY. In that order.
The troll lives on its own under a bridge. I live on the other side where the grass is green because I make it so for my kids.
And that, quite frankly, is that.*
*Oh, and if anyone else doubts my parenting competency, I’m not writing out what I’m doing tomorrow. I’ll be too tired, as I’m taking the children to a birthday party, and kids + cake = mayhem.