Wednesday, 6 August 2014

If Jessica didnt have Rett Syndrome......

At the beginning of our Rett journey, a lot of my thoughts used to begin with this sentence. However, these days it doesn't happen very often. I think our lives are now so far removed from what they would have been if Jess didn't have Rett Syndrome, that now I have no idea what our lives would actually have looked like.

Would I have returned to work, and continued my career? Almost definitely - in some way or another. Would we have had a third child? Possibly. And the little day to day things- would Jess have had sleepovers and play dates and parties without us needing to be there? Probably. Would I have been able to have a night away with my friends? I expect so. Would weekends and holidays been easier to cope with? Yes.

But like I said, we are so far into this Rett Journey ( and yes, even after just three years, I feel qualified to say that) that this life I am describing above (and the life I envisaged for our family) is so alien and so unimaginable to me now that it rarely even occurs to me to try and envisage what our life would have been like if Jess didn't have Rett Syndrome.

But this last week was slightly different. We were in Devon staying with family, and we took the girls to the beach. It was a lovely sandy beach, with shallow calm sea for miles out from shore. However, it was low tide, and the sea seemed miles from the beach. I took Anna down to the sea edge, and she loved it. It was the first time that she has properly been to a beach where the water was warm enough to play in, and she spent hours running in and out of the water and playing in the waves. It was lovely to see her enjoying it so much.

However, it also upset me, because in another life, if Jess didn't have Rett Syndrome, I could imagine the two girls playing together, and knowing how much Jess loves the water, I know she would have absolutely loved it. It was a shame because it meant I didn't fully enjoy the experience with Anna. It was a bittersweet moment.

I was determined to get Jess down to the sea, but it just seemed so far to carry her with the sea at low tide, and pushing her wheelchair all the way through the sand was an impossibility. But with the help of Jess' Grandad, we got her there, and she floated around in an inflatable dinghy with Anna pushing her.

It wasn't the same though, as it would have been if Jess didn't have Rett Syndrome.

 

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