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Looking back….
It is a journey and as we go through the stages there are new experiences. This page brings together some things that our members say they wish they’d known at the start, or perhaps at a corner on the way…. |
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“I wish I’d known our daughter would survive“ “I wish I’d known how much support we would find, and how much our son could tolerate, how fantastically strong he could be“ “I’m glad that however bad the odds, we as a family decided to believe it would be OK, because we came to realise that any other approach would just waste our time together. Once we worked that out, being positive was a lot easier – why be anything else“ “I wish I’d known how to make it easier for our friends to deal with it. You get so into the illness that on a day to day basis it’s just part of life, but outsiders find it very hard to know what to say and sometimes that makes it harder.” “I wish I had spoken up sooner about how her general anaesthetic was handled for lumbar punctures. They didnt mind at all having less people in theatre while she went under and it was so much easier, she was more relaxed – and came round from it better!“ “I wish we had spoken to other people about the options when she started school as it was a bit hit and miss with what suited her best“ “I wish we had known the quick way from CLIC House in Bristol!“ “I wish I had been able to meet up with other parents with children on the same treatment sooner“ |
