3 Jun



Yesterday was the 2nd June. It marked the end of the International Batten Awareness weekend. And it marked exactly two years since we learned that Matilda had a terminal illness called Batten Disease. Two years. A lot has changed. Matilda has stopped walking and talking and eating. No more roly poly’s, no more KFC popcorn chicken. Still plenty of Dora though! And we can still see our Tilda shining through. Sometimes.

We had a minor setback with her chest infection at the end of last week. I got a call from school on Friday to come and pick her up as she had a fever, increased seizures and vomiting. We had a script for another round of antibiotics so filled it and have had a a very quiet weekend. Thankfully, the extra round seems to have done the trick and she is looking much better again. She had obviously just not quite knocked it on the head.

As always when things go slightly awry , the universe seems to compensate by sending me some beautiful people to make my day. As I type this, the very lovely Ange Raso, dad of a dear friend is busily mowing and pruning and making our garden look absolutely lovely. He came last week as well and it has made such a difference, it is so wonderful to look out the window and see the garden looking so nice – THANK YOU!!!!

Thank you also to the beautiful Mish and the lovely Emily for supplying us with some delicious meals and thank you to my wonderful parents for looking after Maggie so I could sleep- truly we have the best friends and family and I feel like I don’t say it enough but we appreciate the support so very much.

In other news, the Palliative Care team are coming out for a home visit tomorrow. We will be asking if we can get a gravity chair similar to this:

Gravity Chair

for Tilda to use in the living room. At the moment, there isn’t really anywhere comfortable and supportive for her to to sit apart from her wheelchair and often we feel like we are isolating her in her bedroom because she is so comfortable in her bed. I’d like her out with us as often as possible.

That’s all for now. Much love





One Response to “Yesterday”

  1. Cally June 5, 2013 at 10:30 pm #

    So much has happened in such a short time. Now the Palliative team are visiting.
    I can remember when you told me of Tilda’s diagnosis.
    It was such a shock and still is unbelievable.
    That a perfect beautiful little girl like Tilda could have such an evil illness- Battens is the ultimate horror story.
    I wish you every good wish for continuing strength and energy.
    Thank you for sharing the journey in your blog.
    And for reminding us how precious every minute of life is.
    Much love Cally

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