Tag: complex medical condition
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The letter in the mail
Not long ago, weeks after the funeral a non-descriptive letter arrived in the mail. I got it out of the mail box and Luke gave me a sideways look, he had been trying to check the mail first, ever since they had told us we would receive the death certificate in the mail. I probably…
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SWAN – Australia
The first time I attended a Syndromes Without A Name – Australia event, I’ll admit I wasn’t sure it was the place for a family like ours, living with a severely disabled child with a life limiting condition.
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Flexible Freedom
She has travelled the world and the country to get Noah cutting edge treatments, and all the while working on herself, finding a way to balance her own self-care and empowering people to live their best life.
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“It isn’t as bad as I thought it would be”?
The Palliative Care nurse asked, as she had every time we spoke, “How are you doing?”
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Does MY Life as I know it end?
I know the isolation of building your life around the space station. No freedom to come and go as you wish. No ability to have play dates back on earth whenever you wish.
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Our Hospital Chapter Has Closed – Is My Life Over?
I know the isolation of building your life around the space station. No freedom to come and go as you wish. No ability to have play dates back on earth whenever you wish.
