What it's like to be the parent of a child with a learning disability. The blog was created in 2005 and discusses anything to do with Down Syndrome

Thursday, 20 May 2010

Eight years on


I was struggling with the photocopier. How many bits of paper can get jammed in one machine? Text message: who's that? Well, it was from the Mrs., forwarded from Stan's speech and language lesson. A video of Stan, clearly saying: "XXX is eating chocolate cake."

The text came in eight years to the moment that Stan was being prepped for his first heart surgery on 20 May, 2002.

It was a wonderful moment this morning because it reminded me of how far we've come. And reminded me of the amazing friends and family that stood by us in our darkest hour. And reminded me of the incredible team at Great Ormond Street who I thank every minute of every hour for saving Stan's life.

Thanks to them, every time I look at both of my boys, my heart skips a beat.

1 comment:

  1. COMMENT FROM A FRIEND
    I'm a family friend of Stan's Dad, and I've known Stan since he was a baby, but don't get to see him very often. And it's that fact that makes me realise just how much he has advanced in those 8 years. And it's something the parents, perhaps inevitably, don't notice so much with their daily contact with him. Stan is an enthusiastic, happy, and very loving 8 year old boy, who is growing increasingly independent, and communicates brilliantly. I say that as an objective onlooker, not directly bound up with the emotion of my own child having Downs, but by the connection of one of my very best friends having a child with Downs. And Stan's progress has been amazing - largely, I feel, because his parents have fought so hard for him to have a "normal" family and school life. They care for his every need, but never smother him. And they try to roll with the punches - such that each trip to Great Ormond Street has almost become a matter of family routine, tinged as it inevitably is with fear and anxiety. But each visit seems to produce a more positive outcome - whether that be his heart, hearing, or other development. Stan's story, and that of his larger family, should be a vision of hope for every other parent of a child with Downs. I spoke to Steve (his dad) a lot during the early days of Stan's life, which were incredibly trying for him and his wife - largely, I think, because of the fear of not knowing how it was all going to turn out. Now, I think they can dare to be more positive, as time passes, and Stan grows up. They should be very proud of all they have achieved with Stan, and I hope other parents can take heart from a success story, which started with darkness and fear, and is getting more positive by the day. Rob

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