It’s not a race

After having a child who has learned everything so quickly, it was very strange to then have Trudy. I was used to having no worries about whether my child would meet his milestones. With Trudy, I am always worried about when she will get to the next one. I call them my Hare and my Tortoise, and I truly believe that slow and steady will win in the end.

Patrick learns things so fast and will work at something until he has mastered it, but then he moves onto the next thing. Trudy does not have that luxury – she needs time. I have never seen so much patience and perseverance in someone striving to get up a slide or master the stairs. She observes, she tries, then she tries again. Sometimes, her body can’t do it but she parks it until she is ready. The majority of us have the advantage of relying on our bodies to do what we want them to do. Trudy’s body always seems to be lagging behind. I wanted to get her a t-shirt that said, “doing the best with the body I have”. I think that would probably be true for a lot of us. So, it is remarkable when I hear stories of people with Down’s Syndrome swimming the English Channel (please look up Karen Gaffney) and competing in gymnastics in the Special Olympics (look up Scotland’s own Andrew MacIntyre), to name but a few.  Karen Gaffney said that “life prepared her for her swim”, that the defeats she had experienced in her life gave her the strength to complete the race. Trudy was not learning how to get up a slide, but to keep on trying. She was learning resilience, she was working out how to do things in a different way – she was learning to problem solve. It is high time we started to focus on and celebrate these so-called ‘soft skills’.

We do so much, so fast, like we want life to pass us by. We are always in a hurry to get to work, to get to school, to get to the next appointment, when we need to spend more time in the moment. Our daughter has taught us that, not to worry about the future and her future, but to enjoy having her and her brother now, fit and healthy and happy. And, after all, that’s what counts.

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.