Tuesday, 19 November 2013

Daydreaming. Then back to reality....


Last week I was browsing through some of the many shopping catalogues which are sent out in the run-up to Christmas, and I saw the most amazing bunk bed which would have fitted perfectly in Jessica's room. I then spent several pointless minutes daydreaming about living in a non-Rett world where the two girls could share a room, and more than likely fight over who got the top bunk.

Later in the week, an Occupational Therapist from Social Services came round to assess Jessica and our house, and to see what changes we could do to make things easier for us. Well, from daydreaming about a pretty, shared girls' bedroom with bunk beds, I was brought back down to earth with a bump. Discussions about through-floor lifts, ceiling hoists, ripping out our only bath to make space for a wet room were all a bit depressing, to say the least.

We moved into our current house when Jessica was 9 months old. As that was over a year before her diagnosis, we had no idea of the secret she held inside. At the time we said we probably wouldn't want to stay in London indefinitely, and would probably look at leaving the city at some point in the future. But we found a lovely house, in the area that we wanted, and moved in and made it a home. Our home. We moved in, we re-did the bathroom immediately (as when we turned the taps on, the water ran through to the kitchen below) and made other improvements and additions, including Jessica's little sister! And here we are. Settled. We still love living here, have just got Jessica settled into an amazing school and do not feel ready to leave the area. We definitely do not feel in position to take on the challenge of deciding where we might want to be, and then trying to find our "Forever House" there. And our next home definitely needs to be our Forever House, due to the amount of work and money it is likely to need to make it suitable for Jessica in the future.

However, I am very concerned that we are going to be pushed into making some decisions long before we feel ready. Jessica is getting bigger and heavier, and carrying her up the stairs, lifting her off the floor, bathing, toileting etc. are all gradually becoming more of a challenge.

It is difficult to know what to do for the best- it is such a big decision, and we can't afford to get it wrong for many reasons. But we can't carry on with our current situation too much longer either, so burying our heads in the sand isn't an option. Unfortunately.

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