William needs 24/7 care, but he loves being with people, whether they are children or 'grown-ups'. If you're (not) expecting a child with cerebral palsy you won't be expecting the feelings of relief, comfort and happiness when you see them build relationships with adults who want to help them as much as you do.
Beyond the costs, the amount of time and energy that families take to plan these special breaks with their children cannot be underestimated. Ensuring that the break meets the needs of a disabled child, as well as those of other family members can be tricky to say the least.
"Do you think that we experience a second drowning? Years later when life settles down; similar to the first when we discovered our child, and by that token our life, was going to be different?"
Working so closely with deaf children means I know full well that loneliness is a big issue to tackle. It knocks deaf children's confidence before they even start school, affects attainment throughout their education, and causes untold pain that persists later on in life.
Unfortunately, parents also have to battle and beg local services for help and equipment and, although personally to date, we've been very fortunate with our local services, I am well aware from friends and social media how the services you receive are somewhat a postcode lottery.
This is the message we must carry forward with us in the wake of this awful attack. As we as a family have come to know, there really is so much love and kindness in the world, sometimes you just need to open your eyes a little wider to see it.
Lately I may have been guilty of focusing on negative reactions to my daughter, Elin, who has Quadriplegic Cerebral Palsy. Although I feel strongly that it's important for me to write about these reactions for a myriad of reasons, it's equally important for me to redress the balance.
My friend and I often joke that if we were entrepreneurial enough, we'd set up a store for the disabled community with an array of products at affordable prices. Someone is missing a trick! There are so many products not on store shelves that I know would sell! And why are we so often ripped off?
Imagine how they must feel to know that their brothers and sisters don't have to wear a nappy, or that their friends know they are wearing one. Imagine their embarrassment when they have to relieve themselves in a nappy, it must be so degrading.
I have a total and completely irrational hatred of the hoist. A hatred which far exceeds any feelings about other specialist inanimate objects that are necessary in our lives now that Elin is almost nine. Until now it's just been dangling in the corner of Elin's room like an evil science fiction-esque spider, which I avoid eye contact with.