Wednesday, 31 December 2014

A new start....

December has been a bit of a whirlwind here - some health issues for Jessica (I will give a medical update soon in another post, as quite a lot has changed recently), although nothing too serious in the grand scheme of things. The adaptations to the house are nearly complete - I can't believe I am actually able to write that (!).  I will also do a separate post on that subject when everything is finished - it is very exciting (is it a bit sad that I can get so excited about ceiling hoists???) And of course preparing for Christmas.

This is the first year that Anna has had any understanding of Christmas - well, I'm not actually too sure exactly what she understood, but she has certainly been very excited! We have had lots of outings - we took Anna to Winter Wonderland one day when Jess was at her respite care home  (we have taken Jess in previous years, but she hasn't always seemed to enjoy it - I think she gets too cold). Anna had a great time:

We took the girls ice-skating, Anna was a natural, and Jessica just found it hilarious when we went really fast with her:

We went to a sing-a-long version of the Disney hit film "Frozen", which both girls loved. and there has been a lot of singing going on ever since:
Jess made a very cute "reindeer" in her school concert:

We went to a Christmas party - complete with a bouncy castle:
I took Jess to see the musical Cats: in London's West End, Jess even got to stroke a "Cat"!!:
 There have also been pantomimes, Christmas shopping, Christmas dancing, and winter walks:

It is now the end of 2014, and I can't say I've enjoyed it very much. It has been a very difficult year for many reasons - Jessica's health has been a major concern and put a lot of pressure on us all, and there have been lots of negotiations with Social Services to get access to the support that we are all entitled to, and desperately need. All this has had such a negative impact on our whole family, from which we are still recovering.

But, like any New Year, in a sense 2015 is a new start. We have some respite care in place for Jess, which is a life-saver; and the home adaptations are nearly complete. Jessica's state of health remains very unpredictable, but there is nothing we can do about that apart from being as prepared as we can for the inevitable emergencies (i.e. have a hospital bag packed at all times, ready to go etc).

Sooooooo...... my resolution for 2015 is for us to LIVE. Not be so overwhelmed and completely consumed by Rett Syndrome and its complications as we have been this year. I want time for us as a family, time to re-discover who I am, and to have a focus beyond Rett Syndrome. I want to spend some time with my lovely husband, and to enjoy both Jess and Anna at the various stages they are at.

Too much to ask? I'll let you know!

Happy New Year to you all, and may 2015 be happy and healthy for all.  


  1. Lots of love and a healthy new year to you and your family Liz! Anna and Jessica are so cute! You're right about for you guys to LIVE. It's what we have been trying to do. Prayers that there won't be more complications for Jessica.
    The other day Tessa's school gave her a new Frozen backpack. I've thought about getting that movie and think Tessa would like as she's kind of over Peppa. She still likes George as she giggles when she hears him, oh dear:) Ping xoxoxoxo

    1. Frozen is great- we have been known to watch the whole film before breakfast....! BUT you will be singing Let It Go continually!!!


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