The Girl, my ten year old daughter, has Down Syndrome (DS).My phone rang just as The Girl and I were walking into the clinic for her speech therapy appointment. It was the therapist calling. She had just returned to her car in Whitchurch and found that two of the windows had been smashed. She keeps no patient details unattended in the car but it had been ransacked. We cancelled the session so that the therapist could contact the police and insurance company. She was bearing up but naturally upset. The clinic is located at the top end of Cathedral Road, just before it becomes Penhill Road, so we had time to spare before coming back home to Penylan.
I sat The Girl down and tried to answer her question “why did someone break J’s car?“. I told her that some bad people like to take other people’s things, or might just like causing damage, or were just plain nasty. I made a bit of a leap and told her that this was why she must never ever get into a stranger’s vehicle, or take sweets from someone she doesn’t know, or walk away with any child or adult she doesn’t know without me or her mam, The Boss. I’ve had such conversations before, but putting potential stranger-danger threats against the present reality that J’s car had been broken-into by bad people seemed to resonate. As we drove home I could hear her talking to her Invisible Friend: “No you must never take sweets from strangers“.
Of course, I’m writing this in the run up to Christmas, when kids are all but begged to visit a strange, omnipresent, white-bearded, old man who likes dressing up in red smocks and offering them gifts. What’s worse, we imply that even our homes are not secured against his invasion and that he comes down the chimney. Well, spoiler alert: I told The Girl years ago that Santa, like God, is a marketing device and not real. I guess that makes me The Grinch.
But even Grinches are capable of random acts of kindness to complete strangers. I popped over in the car to Waterloo Road the following morning to post The Girl’s Christmas card to her friend in Aberystwyth. It was 1025 hours. I walked from the post office back to my car and, as I crossed the road, was accosted verbally by an elderly man. He was of medium height and build, with wispy, grey-white hair which flew out in all directions – including from nose and ears. He was dressed in a grey wind-cheater and jeans. He looked me in the eye and said “give us a lift mate” (No ‘please’ and the ‘us’ was just him.)
Me: “I’m not usually mistaken for a taxi. What’s the problem?”
Yeti: “It’s the bl***y bus innit. It was due at quarter past and it’s bl***y late innit.”
Me: “Where do you want to go?”
Abominable Snowman: “The dentist on Colchester Avenue.” [About a half mile away.]
Me: “Aye come on then, get in.”
Bigfoot: [Bangs his head on door-frame…] “…Not much room here eh?”
I deliver him to the dentist and drop him off. He looks at me and says “OK then” and walks off. Refreshed by my good deed, when I got home I went straight to the attic to retrieve the boxes containing our Christmas tree and decorations. We had promised The Girl that we would decorate the tree on the coming weekend.
When I was a lad, my dad and mam put up the decorations on Christmas eve. I think he changed that as we got older but it’s the Christmas eve times I remember. It wasn’t just the tree that was dressed, the living room too was decked-out with streamers from each ceiling corner to its opposite, meeting in the middle to drape around the light rose. When The Boss and I got together we didn’t make a big fuss either and put the tree up on Christmas eve. We never decorated the room. The Girl came along and, as she got older, we started erecting the tree a week before Christmas day, so that she would get more time feeling excited through the holidays. Then, as she got older still, we brought it forward by another week so that she would be able to tell her school friends about it all during the final week of term. And now we decorate the stairs too. Thus are traditions made and changed. At this rate by the time I’m sixty we’ll have lit up the whole house and filled the garden with sleighs and reindeer. And we’ll have a sod-off forty-foot tree with outside lighting bang in the middle of the lawn!
Anyway, tree safely decorated, last Monday came around and I had to take The Girl to the dentist on Penylan Road. I’d left a front door key in a secure place for our cleaner as I would be out when she arrived. Just as the dental consultation was due to begin the cleaner rang me. “Excuse me,” I said to the dentist, “I need to take this“.
Cleaner: “Have you left me the right key, ‘cos I just can’t get it to work”.
The dentist has by now seated The Girl on the big chair and is holding the door open waiting for me, all but tapping her foot.
Me: “I’m really sorry, I have to go. I’m certain that I left the right set of keys. Try jiggling it and push-pull the door a fraction. It WILL open.”
The appointment proceeds. All is well, though there is a recalcitrant baby-tooth that just won’t wobble its way loose. The dentist agreed that there was no rush and that we can return to it again in a few months. I dropped The Girl off at school. Then I rang the cleaner: “are you in yet?” Her: “No. I couldn’t make it work and neither could your next door neighbour when I asked her to help me.” [Thinks: She asked my neighbour for help? With opening the front door??] I drove home a bit too fast, if truth be told, and pulled up outside the house. The cleaner got out of her car and I exited mine. I took the keys that she was waving at me. They were definitely the correct front door keys.
We have a path from the front gate which extends for three yards and then segues into six granite steps, with a further three yard path before getting to the front door. I flung open the gate and bounded up the path, before leaping the steps in two athletic jumps. At least, in my mind’s eye that’s what I did. In reality, my right foot and leg had other plans and refused to follow my brain’s commands. I have good muscle-memory of leaping these steps but that was of little help. My foot caught on the step I was hoping to clear, sending me tumbling.
It is an amazing feat that I did not land immediately face-down on the granite. Somehow I retained a vestige of balance even though I was at an impossibly acute angle to the floor. Momentum alone kept me moving forward until I dropped to one knee just in front of the porch. I used the keys to unlock the door and the cleaner – a tad sheepishly – went about her business. Well, in fact I suppose she went about MY business but that would be to split hairs.
As the day passed I reflected on what had just happened. I also recalled that my foot had dragged a couple of times while walking around Sainsbury’s, nearly sending me tumbling. That night I told The Boss about all this. She has Multiple Sclerosis (MS). She reminded me of the first time she realised her MS would have a serious impact on how she lived her life. And indeed, on who she was. She’d been diagnosed a while before but, some eye problems aside, seemed to have no difficulties. She walked, she swam, all the usual things. Then, one day, she ran for a taxi in the rain and “my left foot decided that it wasn’t going to listen to my brain. I knew immediately it was MS-related, even as I ended up sitting in a puddle in the middle of a taxi-rank in my best suit, crying“.
That’s how it was for me when I failed to leap the steps and went tumbling. It was a salutary reminder that 2016 had gifted me Parkinson’s Disease (PD) and that it does impact upon my life and on who I am. All in all 2016 has been a good year, filled with love and laughter. My Parkinson’s has fitted in around our days rather than taken them over completely. My role-model is my daughter, The Girl.
* She has DS,
* She is not DS,
* She is Angharad.