Days go on

22 Feb

The sadness continues around us, our dearest Jack is still fighting hard and several other Batten children around the world are also fighting. It is a harsh reminder of what this disease ultimately does to our children and it is something that I cannot seem to connect with Matilda. Denial, denial, denial.

I am not naive though and I know that the worst for us is yet to happen but denial allows me to rejoice in the days that we have, in the smiles and in the laughter. I cannot and will not let Matilda’s ultimate fate overshadow our life now.

In health news, we seem to have a handle on the vomiting. We introduced a new medication and have been slowly increasing feeds over the last couple of days. The chatting continues. Sometimes through the night, as experienced on Wednesday night when she woke up every hour….Thankfully, that seems to be a one-off and she only woke once last night.

School is such a good place for her. She comes home ready to smile and laugh and I know she has had a good day.

Her and Maggie also seem to have their own way of communicating with each other.


And so our days continue. We are thinking always of the families whose children are fighting and send them all our love.



6 Responses to “Days go on”

  1. Daryl February 23, 2013 at 10:37 am #

    So ,so hard Laura especially with so much sadness in the Batten community at present. Hang in there. Nothing and nobody can ever take these beautiful and special days and moments from you and Simon.. Tilda is just gorgeous and it is magical to hear her voice and to see and hear the wonderful communication and bond forming between her and Maggie .That too is forever. Thinking of you always…….love Daryl

  2. Ken and Wendy Brown February 24, 2013 at 10:05 pm #

    Hi Laura,
    It must be very hard for you at the moment with Jack and the other children in the Batten community struggling so hard. You have the strength and understanding to acknowledge your sadness and yet at the same time you continually draw on those special moments with Tilda and Maggie. No-one could do more. You are a loving mum and both those little ones would feel this love everyday. What a gift you are to them!
    X Wendy and Ken

  3. Didi February 25, 2013 at 9:01 am #

    My dearest Laura,my heart goes out to you always. I can’t imagine how hard this time is for you with the constant reminders of what is to come God bless all of you. You are strong though always have been just take in these precious moment between your two beautiful angels.and the bond they are forming. It is so lovely to hear both of them and Tilda’s laughter. Your Maggie is beautiful. Lots of love and stay strong my friend you are a great mum. All my love and prayers to all of you and the other children that you know that are also suffering with this very terrible illness.XOXOXO

  4. Didi February 25, 2013 at 9:02 am #

    your friend Didi

  5. Anne Bunting March 2, 2013 at 8:52 pm #

    Dear Laura, I am so glad that you are able to rejoice in your two beautiful little girls in the face of so much sadness but I can only try to imagine the underlying pain. Tilda’s chatting is an absolute joy and it is lovely to see the bond growing between the girls. love always Anne

  6. Bita March 13, 2013 at 2:05 pm #

    I follow Tilda’s blog all the time, I am so happy you have so many people around you and that you are having fun with your little girl. Don’t think about what is to come, just take it one day at a time and have as much fun as you can. Loved your photos at the beach.

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