Feeling the love

26 Mar

There is a quote from one of the shows I am strangely addicted to at the moment – 24 Hours in Emergency. In the  opening sequence, one of the nurses remarks that the moment when you are in Emergency and you’re really sick and you’re wondering whether you are going to live or die, silly things go out the window and ultimately what is important is realised, that you are loved and that you’re not alone.

Yesterday, a parcel arrived from America.  I have mentioned previously, that when we believed that Matilda had Doose Syndrome, I went online and joined a Doose support group. Women and men who were invaluable and vital to us in those early struggling days. And now,  although we are no longer under a Doose diagnosis, we still consider them to be our Doose family and hold them close to our hearts. So when this parcel arrived from a beautiful Doose mum, I didn’t know what to expect and when I opened it, I burst into tears.





It is the most beautiful handmade quilt with messages of love and support to Tilda and to us from Doose families everywhere. We are blown away by the kindness and the thoughtfulness of these wonderful families who are going through their own tough journeys. 

It seemed very fitting to post this today.  March 26th is Epilepsy Awareness Day. This is a condition which is very misunderstood and very underfunded and Doose Syndrome even more so. If you get the opportunity, please take a moment today to learn a little more about this heart wrenching condition which anyone can get and for which there is also no cure. Visit Epilepsy Australia and The Doose Syndrome Epilepsy Alliance to learn more.  



To our Doose family, we say thank you. And in this time of terrible sickness, we do know that we are loved and that we are not alone.Thank you to everyone who has made us feel that way. From the cards and presents we have received to those who comment on this blog, we feel the love and it helps more than you know and more than I can convey.



8 Responses to “Feeling the love”

  1. Jo Weller March 26, 2013 at 4:24 pm #

    Just beautiful xx.

  2. Carole and Garry Laird March 26, 2013 at 5:17 pm #

    Absolutely wonderful.

  3. sinead March 26, 2013 at 7:43 pm #

    It is absolutely beautiful! What an amazing gesture and a wonderful gift. There really is so much good around us and I think moments like you have had receiving this quilt truly reinforce that. You are in my thoughts so often as I’m sure you are in many others. Xxx

  4. cally berryman March 26, 2013 at 9:04 pm #

    The quilt is just beautiful. It reminds us that there are so many wonderful people in the world. And I loved the superb photo of delicious Tilda and the quilt. Thank you so much for sharing this wonderful up lifting gesture. XXXx

  5. Wendy Mueller March 27, 2013 at 2:18 am #

    This post caught me by surprise–when I realized you were writing about the quilt, my heart jumped in my throat andthe years started to flow! It’s hard to type when you are crying, isn’t it?? May every snuggle under that quilt be just like a hug from your Doose family, a physical reminder that Tilda is so loved by so many!
    Much love,

  6. Juliet March 27, 2013 at 8:07 am #

    What a beautiful gesture and a lovely quilt! AND just in time for the cooler weather. All my love to all of you. I hope Easter goes well!

  7. Daryl March 27, 2013 at 10:55 am #

    A most special gift ,both the beautiful quilt itself and the amazing generosity of thought, time and love from those facing their own adversity and sadness. And a gorgeous photo of Tilda under it. Thinking of you all each day.

  8. Emily April 4, 2013 at 2:03 pm #

    What a gorgeous quilt. I used to work with Jack and was saddened to hear of his continued fight. Please if you see Nicole pass on my love and wishes (if you feel this is appropriate) she will know who I am.
    He certainly is a special boy, with an amazing gift! All children with battens are in my thoughts- you are all truly inspiring 🙂

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