After one has lost two children to SMA Type 1, and two survived, life takes on a significantly precious meaning. You move from ”zippy’ to ‘coasting’, and ever mindful of the power and frailty of human life. You move closer to that microcosm community of loyal friends, and become more philosophical and mellow about life in general, and fearful and sometimes pessimistic about life in specific (as reported in the media on a daily basis). Your surviving children are your energizers.
Is there an end to grief? Or do we just learn to conceal it better? Society believes that after a few months or even a year, parents who have lost their child won’t be grieving anymore. They are wrong.
When I spoke about this to a friend, who sadly lost her daughter to the same condition a few weeks before Sophie was diagnosed, she found that people shut her down. That suddenly nearly two years on from loosing her daughter, no one wanted to hear about her daughter anymore. As if it was so long ago that no one remembered it or understood her need to still talk about her daughter. Time moves on at an incredible pace but for parents who have lost a child, this pace seems almost to be approaching the speed of light. Every significant date takes them further from their child. Think about how you…
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