Busy, busy, busy

12 Jun

Busy days. Maggie, Matilda, feeds, meds, getting ready for school, trying to keep the house in some semblance of order. The days are flying by. Before the wrong impression of me is made though, let me emphasise just how much of a lazy soul I actually am. I would rather sit. My preference is to lounge. I rue the day that Maggie starts to crawl as my time of sneaking in a quick game of candy crush or checking Facebook whilst she is happy lolling about on her mat will be at an end. But each of her milestones will be met with such delight and wonder, I can’t wait to watch her grow and hear her talk. Because Matilda has not spoken for so long, hearing Maggie’s first word will be a revelation. As will all her firsts.

Tilda is doing well! The chest infection has all but disappeared and we are once again seeing smiles.Smiling Tilda in her hoodie

She does this to me. Has episodes where I think that I am losing more of her. And then she rallies. It is quite incredible and inspiring but there is a small sliver of me that knows that there will be a day when she won’t rally. I try not to think of that day and can only rejoice each time she comes back to me.

Ask and ye shall receive. Such was the speed and effectiveness of the wonderful Palliative Care team.

Tilda in her Gravity Chair

Our new Gravity Chair arrived the very next day after the Palliative Care team visited and Matilda absolutely loves it! She is really comfortable and it is wonderful to have her out in the living room with us for longer periods of time. A huge thanks to the team for being so amazingly responsive! They also have organised some in home care for Tilda during the school holidays, linked us to the Eastern region Palliative Care team who may be able to do some in home music therapy, and arranged another Heartfelt photography session so that we can include Maggie in our family photos. Fabulous!

Glenallen School continues to be a wonderful place for Tilda and I am constantly in awe of the love and care that is shown to her and to us as a family from the beautiful teachers. We would be lost without their support and I am grateful for its existence everyday. Tilda came home last week with her hair in a beautiful braid done by her OT – just a small gesture but one that shows how beyond just teaching the staff go for their students.

Tilda with her braided hair


Our gorgeous Maggie will be exactly 6 months on Wednesday.  She is a smiley, happy  baby who is a constant source of delight. I am grateful to report that her day sleeps are now under control. The night sleep however, is a different tale! We will be tackling it in the upcoming school holidays when Simon has some time off but in the meantime, I nap when she does and this smile makes it very difficult to be cross or sad around her.


Smiling Maggie



Much love oxoxxo


5 Responses to “Busy, busy, busy”

  1. JessB (Kate's friend) June 16, 2013 at 2:51 pm #

    Ooh, I love that gorgeous hair on Tilda and that sweet smile on Maggie! What gorgeous girls!

  2. Adam chez & jack June 16, 2013 at 7:38 pm #

    I feel so happy reading that Tilda and her family are all doing so well. Can’t wait to catch you all this weekend… Game on

  3. Katrina Varcoe-Cocks June 16, 2013 at 7:55 pm #

    Big hugs from us. Was great to catch up with reg on Friday. Really hope to see you soon. Treen xx

  4. Cally June 16, 2013 at 8:25 pm #

    Indeed delicious.
    Delicious Tilda, and delicious Maggie.
    Such superb photos.

  5. Juliet June 17, 2013 at 5:53 pm #

    How lovely to see both girls looking so happy and so glamorous! It’s marvellous, especially when I feel so far away, to read that things are going well at present, though your sleep deprivation will probably et worse before it gets better! All my love Juliet

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