when you allow your most vulnerable emotions to lay bare, when you always give love and support unconditionally, then when you need some care of your own, some one to ask and reassure you and just check in on you, at your lowest. there is silence. what does that mean? when your worth isnt evenContinue reading “when your worth is measured in silence”
Tag Archives: coffinsirissyndrome
take away all the things, then tell me
if you took away social events, regular sleep, sleeping past dawn, your silence, your me time, your cleaning time, your work time, your life admin time, holidays, weekends away, dinners at restaurants, brunches, walks, swims at the beach, a tidy house for longer 25 mins, unbroken walls, unbroken phones, eating together, seeing friends in normal places,Continue reading “take away all the things, then tell me”
Losing my confidence socially
You’d think as I grew more confident with raising an autistic son, I’d find more strength and feel more comfortable being able to talk about life and being around friends socially. I thought it would be that way. I’ve started to feel like I’ve got nothing valid to say or offer the world in anyContinue reading “Losing my confidence socially”
stopping and watching and breathing and realising he isn’t going to be this small ever again. but will always be my best buddy. always.
We have just been to therapy. We went to physical therapy, its our usual twice a week appointment. We remembered and we made it sort of on time. Sort of. 4 minutes late today. Last week the roads were flooding. We missed the therapy appt. I keep getting caught up in the afternoon rush ofContinue reading “stopping and watching and breathing and realising he isn’t going to be this small ever again. but will always be my best buddy. always.”
this season is…
hard to watch, hard to hear, feel, see, repeat and repeat and repeat todays chat to the doctor was hard. reset your expectations. reset your self care. accept his journey, reset your anxiety. reset reset reset. how when who, to let him live so agitated and so upset and so unpredictable, live while he survives,Continue reading “this season is…”
THICK OF IT
Just when you think, this is hard, this is crazy, this must be the thick of it…suddenly it gets thicker. Medications, NDIS reviews, restrictive practices, all of it is coming in hard and fast and changing and then the same. Same is worse than better, same is worse than worse. I think the variation givesContinue reading “THICK OF IT”
When you aren’t ok, but you have no choice, where does it end
**EDIT to note: This post below was written and in draft since July. I never posted it. I dont know why. Probably because posting it was the exact same cycle of “help/acknowledgment/silence/you need to feel differently feedback, that this post was essentially about. But this is how it feels, some days thick and so deep,Continue reading “When you aren’t ok, but you have no choice, where does it end”
Every choice seems like the wrong one
Maybe this is a normal thing for every parent or every mum, but why does it feel like every single day, every reasonably significant choice to do with your children’s health or education or happiness or safety, feels like its guaranteed to be the wrong one. Is this a sign of anxiety and PTSD? OrContinue reading “Every choice seems like the wrong one”
Then all of a sudden, it seemed to happen
For years and years, months , weeks, days on and off, then a break, then days, then weeks we would try and encourage our amazing son to feed himself. He’s never wanted to touch food, hold food, look at food, be near food, never self feed. For whatever reason, I had to capture this nightContinue reading “Then all of a sudden, it seemed to happen”
The privilege of never knowing the ache of disability
When I see photos of people with different disabilities, invisible disabilities, para olympians, role models of people who have made it with a complex health or neurological condition, accidental disabilities or impairments, etc etc the list could go on… but those images of people who inspire me now, make me cry with a long lostContinue reading “The privilege of never knowing the ache of disability”
A Journey to Joy 