Sunday, 30 March 2014

A sense of peace

I mentioned in this post here that I was taking Jessica to visit somewhere she could go to for respite, possibly one night a month. It is a purpose-built facility run by a charity, but it is used by Social Services to provide respite (or Short Breaks as it is now called) for children up to 19 years old with disabilities or special needs.

When I looked round previously, I was very impressed and felt happy that Jess would be well looked after here. They have all the equipment she needs such as hospital beds in the same style she has at home, hoists, hi-lo baths, sensory rooms etc, and the staff are all trained to use gastrostomies and can administer oxygen. It is somewhere I can envisage Jessica going to for many years in the future.

So I took Jess to look round, and to meet the staff. Jess seemed very happy, and the staff all fell in love with her. She will start by just going for the day to start with, and build up gradually to staying overnight. I am sure that Jess will really enjoy spending time there.

However, when we were there, something else happened, that made me realise how far I have come in the world of Rett Syndrome.

There was another girl staying there - a teenager who has Rett Syndrome. Now we belong to a support group for Rett Syndrome (part of Rett UK) where most of the families have older girls, and I have found it really difficult meeting them - I can't imagine either Jessica or Anna at 19 years old, let alone Jess being a 19 year with all the issues that she may have then - that is a whole new level of acceptance.

But it was different this time. Maybe it was because it caught me unawares - it is not often you just "bump into" a Rett girl, outside of a specially organised Rett event. I wasn't expecting it. Or maybe it was because the few times I have met older girls with Rett Syndrome have been very emotional times anyway- once was very soon after Jess had been diagnosed and another was just after I had given birth to Anna.

But I looked this girl, and saw the hand  movements and the abnormal breathing. But it wasn't these actions that gave away her diagnosis to me. It was when I knelt down next to her wheelchair, and said hello. She turned to look at me and gave me that intense, all-knowing, all-understanding look that only Rett girls have. She seemed so calm, so content, and had an aura of peace around her - I can't really explain it.

I found the whole visit very moving - meeting this other girl (maybe I am just coming to terms with what Jessica's future holds a bit more), combined with the relief that we have found somewhere Jess can go for respite, where she will be well looked after and be really happy, and all that that means for our family life. I came away so relieved, as if a huge weight had been lifted off my shoulders. And with a sense of peace that everything will be all right somehow.

1 comment:

  1. Ahh, I'm so pleased. She really does have that intense look, doesn't she? As if she understands but (accepts that her body) doesn't want to react. I hope she enjoys her time there.
    R&C XXxx


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