Day 361 – Change

I have always loved change, and often find it difficult to stick to one thing, mostly because I get distracted and excited about something else. Ellie has been going so well recently that it has made me start to ponder what life will be like when she comes home. Contrary to my usual disposition, I am filled with mixed feelings. Of course there is the obvious excitement of having our family back together and seeing Ellie grow up in a home as opposed to a hospital, but there are also hesitations.

Mostly, I think we are going to miss the nurses, for two main reasons. Firstly, as capable as we are becoming at looking after Ellie’s sometimes complex medical needs, it is very reassuring being able to double check things with a trained professional, or even just having their reassurance that you are in fact doing something correctly. Secondly, we are going to miss them socially. Our days are filled with adults popping in to entertain and chat to Ellie, and many of them have become great friends. As much as I am reclusive and love my alone time, it is going to feel quite unusual being by ourselves at first.

Anyway, like much of our past year, we don’t have much of a choice, and Ellie is the one determining our path from here forward. It will be interesting to get some official reports this week to see how the experts think she is going on the low flow (to us she seems to be doing fantastically).




One thought on “Day 361 – Change

  1. To make it through the past almost-year, you have all had to adapt to a tremendous amount of change. I’ve wondered how Ellie will find the change from the only home she has ever known and everyone who has been a part of her world. But then, I’ve also marvelled at the resilience all six of you have shown. That resilience and adaptability plus great courage you’ve all demonstrated time and time again will serve you well. You’ll have each other – THE most important thing of all xo


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