Apart from the serious lack of flowers in my life, everything is very peaceful at the moment. And very quiet too. I catch myself calling out to the girls and the dog and realise its pointless. An occasional tear has been shed, but my counsellor says that's normal. She calls it a grief process. She's probably right. She usually is.
Another pearl of wisdom from my counsellor is that I need to improve my self care. I'm not sure I understand this one. My head thinks she means I have to stop beating myself up about stuff. My heart hopes she means I need a holiday to a tropical island with massages, cocktails and Ketut at my service.
While I work it all out, reading and writing continue to be my self care. Recently I had my story published in the Rare Diseases Australia website (www.rarediseasedayaustralia.com.au). It feels good to finally be able to express what a life time of medical attention has meant to me. Its also good to get the message out about Cowdens Syndrome, as the general feel in the literature is that its largely under diagnosed. As I write this, a young 12 year old girl with Cowdens is undergoing major surgery. My love and best wishes for a speedy recovery go out to her.
Rare Diseases day is February 28th. There are many, many rare diseases worldwide and all deserve recognition. The stories of people's experiences will blow you away. Maybe when you have a spare minute head to the website and sign the pledge "to work together to achieve better care for people living with a rare disease". Maybe long term we can find a way to stop young children having to deal with these major issues and continue being children. (http://www.rarediseasedayaustralia.com.au)
As I type away my phone rings. Its the husband ringing " to see how his Valentine is". From a husband not prone to lovey dovey sentiments this is gold. I forgive him the lack of red roses. Happy Valentines Day everyone!!!
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