Tuesday, 18 June 2013

The best sound in the world!


There is one sound that I never tire of hearing. It will always lift my mood and make my day. I don’t even mind being woken up by it (and that says a lot, given how little sleep goes on around here!). That sound is the sound of Jessica giggling. Fortunately for me, Jessica giggles a lot!

Wednesday, 12 June 2013

Going round in circles

There is so much bureaucracy that goes with having a child with a disability; and numerous forms to fill in and questions that you have to answer.  I am getting quite used to the ones now that ask:

”can your child stand?” –answer: ” no”, reason: “she has Rett Syndrome”.

Next question: “ can she walk?” – answer: “no”,  reason: “she can’t stand”.

Next question “how far in metres can she walk?” –answer: “0 metres”, reason: “she can’t walk”

You get the idea……

However, I received a puzzling letter the other day saying that the way a particular part of Jessica’s care is given is being restructured by social services.

The letter said I could choose from option A, option B or option C. But that I could only tick option A or B.

 Clearly, I wanted option C, as otherwise life would be too simple!

The letter then said I had to respond by the 28th May, to indicate if I would be attending a meeting about the restructuring, being held on the 14th May.

The letter also gave no idea of where the meeting was being held. So I rang the phone number that was given for you to “ring if you want any more information”, only to be told that they don’t give information out over the phone, and that I have to go to the meeting.

I gave up at this point, and just wrote on the form that I wanted option C.
I got option A.  Hmmmm..........

Wednesday, 5 June 2013

A year gone by

A few weeks ago, it was Jessica’s little sister Anna’s first birthday. I can’t believe she is a year old, it seems to have flown by, while equally I can’t really remember what it was like before she came along!

To celebrate Jessica  and I made Anna a cake. She is still in her pyjamas (it was that kind of day, what can I say!) and I am not sure we would have passed any food hygiene regulations, but Jessica and I thoroughly enjoyed ourselves!