Why write?

IMG_20140224_122642I have always struggled with posting about our children online. On the one hand as a parent you feel so so proud of your children, you just have an in built desire to share every small accomplishment they ever make to the whole world. But on the other, you worry that you should be protecting their privacy, scared about who may see the content, and what they may do with it.

But it is possible that our daughter may not be here for very long. She had already made a huge mark on our lives, and those around her. But I wanted to make sure that her story was out there, for all to read, because she really does deserve to be noticed. And because our story may help someone else, and make them feel less alone.

When we first found out about her many possible prognosis’ – all I wanted to do was find out more, find others that were going through the same things and to share the news with others. When you feel scared for the future, sharing problems with others suddenly makes things so much more manageable. So I reached out – to total strangers who had been through baby or child loss – and within minutes, they responded, immediately giving me some relief. But it is hard to find others in exactly the same position – with a sick child with a very unknown future, so this is my attempt to explain our thoughts and feelings at such an emotional time, to both help ourselves, and maybe help someone else one day.

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