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.