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Life in our bubble: She'll always be

Life in our Bubble: She’ll Always Be

06.03.19

Our daughter was first referred to paediatric services when she was nine months old. This followed our concerns that she was not reaching her milestones and did not seem to be interested in her surroundings. Despite the many assurances we were given by the health visitor that it was only a matter of time, we


Life in our Bubble: Feelings

12.02.19

Recently a friend broached the subject of our daughter’s life expectancy. I knew where the conversation was heading long before she asked the question. She just came out with it in the end. I gave a brief answer but didn’t dwell on it. It’s upsetting to talk about and I rarely engage with the subject


Life in our Bubble

Life in our Bubble: Time to Reflect

31.12.18

Our daughter’s watching The Muppet Christmas Carol.  She’s come back from a Snowman show with one of her PAs and is tired but unrelenting in her desire to keep the Christmas theme going. My partner and I had taken advantage of this outing to do something we couldn’t otherwise do before the holidays begin and


Life in Our Bubble I Let's Dance

Life in our Bubble: Let’s Dance

27.11.18

Our daughter’s away at respite. The months are winding down and soon she will be too old to go to the centre she’s been to every month for the last couple of years. It’s for young adults only. The time is nearing for more assessments, reviews, wrangling; more looking for another placement when in reality


Life in our Bubble

Life in Our Bubble: Up and Down Day

24.10.18

Some days just don’t turn out as you expect them to. They may require a range of adjustments. You just never know how they will pan out. It’s true to say they can have their ups and downs as well. Take the other day. It was meant to centre around our daughter’s 6-monthly neuro appointment,