Why Gingerbread and Sunshine?


When trying to name this blog, I wanted something that summed up our situation. Initially everything I thought of seemed to centre on disability and uncertainty.  It was all a bit too…depressing.  So instead, I tried to think of something that represents Little J and makes me smile every time I type it into a web browser. So I went for two things that he loves – gingerbread and sunshine.

I have a photo that I look at when things get tough.  It was taken last summer, in Hyde Park, right in the middle of the Olympics.  I was sat on a rug in the warmth, amidst the hustle and excitement with a beautiful little boy, proudly sporting his Team GB t-shirt.  Tourists stopped and cooed.  No one seemed to notice that this almost one year old was lying down, or sitting semi propped, rather than crawling around.  No one noticed the occasional jerks or flails from his arms and legs.  I had bought my lunch from one of the stalls and feeling a bit mean, gave him a mini gingerbread man as a treat. Despite the fine motor challenges of self-feeding, a treat like this never failed to get results!  He then did something so hilariously adult, it had me reaching for my camera before a sunshade.  He shoved the entirety of the gingerbread man into his mouth, rolled from the shade into the bright sunshine, flung his arms out and with a big grin on his face, proceeded to sunbathe. 
We didn’t know it at the time, but the fun and excitement of that summer would be short-lived.  Just two weeks later we would be back in hospital after a frightening apnoea episode.  What that photo reminds me is that despite the ups and downs, despite Little J’s challenges, disability and his pain; we have a little boy who is often truly happy in life. 

As a parent of a disabled child with a genetic condition, there is only so much we can do.  Yes, we can work on physio every day, we can read all the books on ‘behavioural learning techniques’, we can save every penny for private therapies; but we cannot undo the underlying error in his genetic coding.  However, whatever the disability level, whatever the prognosis, if we can keep making him as happy as gingerbread and sunshine do, then I think we will be doing a good job. 

2 comments:

  1. A lovely read thank you! Your little boy has put a smile on face...gingerbread and sunshine, he already knows the good stuff in life! Best wishes with your blogging, I'm sure this will be found by the people who most need it. Good Luck xx

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  2. Thank you so much Lou - much appreciated x

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