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Life in Our Bubble: Respite

11.10.19

Our daughter’s respite breaks stopped a couple of months ago. We’re really missing them. We fought tooth and nail for these when she was little as we were becoming burnt out and needed time to recharge our batteries.  It was tough being assessed on our vulnerabilities while everything was still unravelling with our daughter.  She’s


Life in Our Bubble: Team Meeting

23.04.19

There have been changes to our daughter’s team of PAs recently with a couple of new members now on board. They were highly recommended.  Finding the right people to support our daughter doesn’t come easy. We always have our eyes out for somebody who can offer intelligent care, is creative and empathetic and who will


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