Coping with the grief of losing a child.I was honoured by a request to share my experience with Christina and her community at http://www.thisisreallifemama.com Christina is a licensed therapist Christina is a mental health professional, she also works from home to care for her children. She is a licensed therapist in California and still completes … Continue reading A Day at a Time; Coping with Grief
Flying with a medically fragile and disabled child is a unique and sometimes tricky experience. Matthew made a few flights. I will say, it takes a few more steps than organising your average trip. We made the effort to make it happen, and I am so glad we did. Matthew saw 4 different Australian states, … Continue reading Flying with a Medically Fragile Child
For me as a special needs mum, the feelings of anger, frustration, loneliness and isolation were definitely part of every admission, even at times every stint at home. Sometimes even more so. I am discovering more and more how that effected me during Matthew's life. I knew they effected me, but the time to really … Continue reading A Special Needs Mum beating the isolation
I cannot comprehend (at this moment) living with a pain that won't ever go away. That has it's own currents like an ocean.
I had been having micro-sleeps at the wheel. It happened a lot more often than I'd like to admit. Mackenzie, on top of not sleeping, hated her car seat, so I could never pull over and have a power nap, so I pushed on so many times. Feeling squeezed, like there was no other way to be there for my family.
In my case at least there is so much more going on sub-consciously than you realise.
"How do people pay for their child's funeral?"
I wander around getting ready, but also 'now what SHOULD I be doing right now?' Well as my lovely support network tells me, there are NO rules. I get to choose what I'm up for or not.
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 … Continue reading The letter in the mail
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.
Caring for yourself as a Carer 