So, Teen Girl was with a support worker at the Gym after school, and they rang me to propose a trip to a music shop before I was to meet them at the bus terminus in town. Fine with me.
T. Girl and I meet at this spot each Thursday, and we catch the bus up to the park just around the corner from Paradise, our home. But as the time for the bus approached there was no sign of them. With the oncoming bus distantly in view I received the phone call I had been sensing would inevitably come: the one where our brilliant young support worker tells me that Teen G. is slightly less than cooperative. They were still inside the music shop which I could see diagonally over the road, and someone was refusing to budge. The bus rapidly approaching from the opposite direction happened to be the last one on our route for the day.
Moments later I can see our support worker waving to me from the footpath outside the music shop, the bus only metres from our stop, but no sign whatever of daughter.
… … … no, actually, here she comes!
The bus has now pulled up, and the driver is standing on the footpath having opened out the ramp for me to wheel on. And there she is, now on our side of the road but still a hundred yards away, walking at exactly her ordinary speed and not a pinch more. Teen Girl’s “ordinary speed” is half stroll and half dawdle; and as usual the imminent departure of a bus was not registering with her as a problem at all. Her Favourite Mother (she has several, including the Elf Queen, Lady Galadriel from The Lord of the Rings) and I are quite unable to decide why she is perpetually unconcerned by keeping others waiting. It is nothing at all for her to insist on brushing her teeth in the morning even when the school bus is sounding its horn at the bottom of our drive. Is she genuinely unaware of inconvenience and courtesy? Or is she just stubborn beyond imagining? We are leaning towards the latter.
But when she finally arrives at the bus, where I have been attempting a nervous and tongue-tied apology to the bus driver, the oddest thing happens. Teen Girl gives the driver a great big hug. And the driver responds wholeheartedly, happily introducing her to a trainee driver who I hadn’t had time to notice yet, saying something like, “This girl is one of our favourites, she’s a very good friend to all the drivers and we look out for her whenever we can.” It’s now well after five minutes since the bus should have departed, but here we all are on the footpath, T.G. lapping up all the attention, smiling and laughing with the two drivers and shooting an occasional look in my direction which I’m sure says, “Why do you carry on so much Dad? Everybody loves me.”
It is at this point that I learned from our support worker that the only reason she exited the Music Shop at all was because of a bribe offered by the store owner: a bright pink guitar pick. Why on earth, we said to each other, are there so many people eager to reward poor behaviour? This is such a regular occurrence in parenting a child with down syndrome: it often feels as if the whole world is determined to undermine any progress we make!
This dynamic makes us scream inside, but is wonderful none the less. Wherever she goes, day in and day out, she brings a clear and simple light into peoples lives. For her school teachers and her parents she offers certain other gifts as well, gifts that no doubt help us achieve our full potential in patience, long-suffering and grace; but if we were to tally it all up the bottom line would be utterly positive: she is a gift.
Parenting a child with a disability is window through which the world looks very different indeed. You learn to eschew demanding questions such as Why? What if? and If only. You are trained through so many years to accept that reality simply is. You also learn that the stereotype seen in countless movies of the disabled person who solves the deepest problems and brings joy to every home is pure bunk. You learn that there is not necessarily a happy ending, that so many things simply do not go well, no matter how deeply held your hopes and dreams might have been. But you also learn how profoundly we need one another, that weakness and strength are not easily distinguished, and that simplicity is so often beautiful.
I’ve learned this, or hope that I have: Life is not fair, not at all, but neither is love. Love can’t be earned, true love can’t even be lost, love recognises no barriers at all, it is not impressed by strength or by weakness, and pays little regard to the the realities we humans find so difficult. These words from the New Testament have been somewhat over-used at weddings, and we we can be de-sensitised to their astonishing worth:
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.
I’m sure this could have done with some proof reading, so please don’t dwell on my errors! Write to me instead: