Ellie was born 6 weeks early with a Trigonacephaly. We were told that she probably couldn’t see, probably couldn’t hear and that she probably wouldn’t survive until adulthood, but she has proved them wrong on all counts…..
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She is now 28 years old and going strong. Ellie needs full time care, so it’s usually the “two of us” Archway came into our lives when Ellie was in her early twenties and she loves it. Respite is a break for both Ellie and me. When I drop Ellie off I always feel a little guilty that someone else is looking after her and I often drive away with tears in my eyes. Whilst I know that she is being well looked after, I still find it difficult.
What respite means to me is that I get to be a person who is not behind a wheelchair and can do something spontaneous. Ellie’s sister and brother are off and running both living their independent lives. I feel sad that Ellie cannot make these decisions. This is the biggest challenge Ellie has posed to me.
At the moment, I can manage the 24 hour care she needs, the broken nights, the loud noises in quiet places, the singing, giggles and joy she brings into every single day. Archway has been a start to me letting other people care for Ellie. But having cared for her for so long and wanting what is best for her always I struggle to let her go……and that is a huge problem for me as I look to the future.
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