A rare moment of sibling appreciation

There are few more precious moments than when a brother says openly and unreservedly how much he loves his sister. These statements don’t come easily so I’d better write this one down!

We have been on holiday this week and it has been a great opportunity for Patrick and Trudy to play together and discover each other again, along with their baby sister.

Playing with Trudy can be frustrating because she is hugely repetitive. She gets hold of an idea then clings to it like a limpet until it’s fully assimilated in her brain. This is much like most children but with Trudy, this process is longer. Trudy will repeat the same role-play with anything; cars, dolls, fruit, pebbles, you name it.

It goes something like this: “Hi, what’s your name?” “Car [or pebble depending on the object” “Play?” “Okay” “Park?”

It is pretty brief but, looking at this on paper, it seems to cover all the basic elements of a friendly interaction: greeting, question, invitation to play.

We all went slightly mad with Trudy’s monologue at the river which required some response from us. That went something like this: “Daddy, look!” “What’s that, Trudy?” “A potato. No, daddy, not a potato. A rock!” She must have said that at least 20 times when we were throwing stones in the river, or was she throwing potatoes? Who knows! It was funny the first time but the humour wore off as we had already heard the punch line!

For Patrick, he’s got to be patient, he’s got to be understanding, he’s got to care about the safety and well-being of his little sister ALL the time because we rarely take our eyes off her.

But there are those wonderful moments when Trudy transfers her play to the real world and asks every passer-by “what’s your name?”, and she will invariably get the reply “what’s yours?”.

We have met Steve and Rob who were walking to Ribbleshead, Mowgli the dog, whose owners have a narrow boat in Skipton, Glynn who was going up Buckden Pike the wrong way. I could go on.

Trudy inspires friendships and pushes interactions you might never have without her and there is a silent recognition from us all that we owe these to her.

So in one brief moment, Patrick, with his ability to get straight to the heart of the matter, stated quite plainly and unprompted that he likes his sister’s Down’s Syndrome, that Trudy wouldn’t be Trudy without it.

Her ‘condition’ was not something he wanted to take away, he wasn’t wishing for something else unattainable. He was grateful for it. I’d like to say that he was grateful for the confidence it brought her, for her eminent likeability because we were all benefitting from it.

So let me savour this moment, describe it, document it, relish it, because some days are tough and these precious moments of gratitude are hard won but worth every battle.

Expect the Unexpected

I have been deliberating over the content of these blog posts for a while as I knew I would have to start at the beginning. It is very hard not to comment on the difficult time that we had at the start of Trudy’s life. It wasn’t just about Down’s Syndrome when we had Trudy, it was about coping with the multiple medical issues that were associated with it. Life had become pretty rubbish at that point. People refer to this as “a grieving process” because you are mourning the child you expected to have. The crucial thing here is that nobody died. In fact, Trudy survived those first fragile weeks of her life. So, we just got a child with straight hair instead of curly hair like me, a shuffler instead of a crawler or quite simply a child we did not imagine we would have.

It is important for me to be able to take something from our experience which could teach people about a world we want our children to grow up in (because that’s the interesting bit). So, the beginning of our story becomes about expecting the unexpected, about coping with things when life throws us a curve-ball. In Dan Habib’s TED talk on ‘Disabling Segregation’, he talks about his child with Cerebral Palsy, about your grandma that might develop Alzheimer’s. Our instinct is to plan and to control but there are just some things that we can’t, and children are one of them. Children are always developing and learning, and there is nothing about Trudy which suggests that she will ever stop developing and learning. It will just take longer. I work with a diverse set of children all linked by some form of visual impairment, which, in itself, has such a range. They change from minute to minute, trying out behaviours to see if they fit. We can’t blame ourselves for this. It is how we react to this that counts, showing our children what it is to be understanding, letting them be who they need to be, letting them make their own mistakes and be their own little advocate.

This blog is about how Patrick has kept us grounded throughout the difficult times we have had with Trudy but how life has taken on a normality that might be hard to understand for some. Here are some of the remarkable photos that Jo has taken of our family to let you into a world where difference becomes the norm, to let you see what we see.