Monday, 14 April 2014

The Struggle with Williams Syndrome (part two) - the good bits

Last year I wrote a post entitled: The Struggle with Williams Syndrome. E was about to go into hospital for his second open heart operation and a couple of Williams Syndrome (WS) children had recently passed away. It was a difficult time and the pressures of caring for a special needs child seemed to weigh heavily.

This weekend, however, E celebrated his 3rd birthday with great gusto and it made me think proudly about everything he’s accomplished over the last year – against great odds. Some of his achievements may seem insignificant in the normal run of things - such as eating his first piece of toast - but for him every one was a huge milestone and I’ve clapped and cheered like crazy each time.

A couple of the "bigger" wins:
  • He’s learnt to walk (although he still has confidence issues and lacks spatial awareness)
  • He’s learning to talk – by the age of 3 most children will have mastered around 350-500 words. E has mastered around 35 but boy do they count. I was woken up this morning by him saying: “Mama - what ya doing?, what ya doing?, what ya doing?” and when I replied that I was sleeping, he yelled “WAKE UP, WAKE UP, WAKE UP”.
  • He’s learnt to count to 10
  • He’s developed a lovely sense of humour, is stubborn beyond his years and has a wonderful, caring little personality all of his own

He also does “typical toddler” things which frustrate and delight me in equal measures: A few weeks ago I went into the lounge to say goodbye to him before I went on a rare night out. As I stepped through the doorway someone called on my mobile. I wondered around the room chatting and not really concentrating on what E was up to. About 5 minutes into the conversation he came up to me and handed me a used nappy.

"Thanks sweetie," I muttered, and carried on talking. When I hung up a minute or two later I started wondering where in the world E had got a nappy from in the lounge.

Way too late my synapses fired up and I realised there was only one possible answer. I glanced over at him and he looked like the cat that got the cream. T-shirt on, no trousers, no nappy, laughing and jumping up and down in a big puddle on the carpet…

As E enters the next year of his life there are many things I'd like him to learn, and I'll try my best to teach him. However, one thing I've learnt over the past three years is that he's completely unpredictable and will do things in his own time. I may want him to learn how to feed himself, but he may decide not to bother with that and instead learn to speak French...J



Just a footnote to say it wouldn’t be fair to finish this post without mentioning C and how proud I am of him as well. He always protects his little brother, plays beautifully with him and never complains or “tells” when E gets rough and frustrated.