when no one else around you or outside of your four walls, knows or has any idea, that each single day is facing a constant survival of one minute to the next. egg shells, recovery, meltdowns, breakages, spills, injury, tears, laughter, breathing, anxiety, fatigue, brief moments of still, then chaos and then eggshells and theContinue reading “survival of one day at a time”
Tag Archives: EOE
Feels like a heartbreak.. is this trauma or anxiety?
my heart feels broken. i feel like a failure at everything and every day. is this trauma? is this anxiety? is this both? its not intentional, its just my “rested” feeling now. I get into bed, i have things to do all the time. i never ever stop. there is always a to do listContinue reading “Feels like a heartbreak.. is this trauma or anxiety?”
Is it Autism or another cause or just another symptom, diagnosis, opinion…?
We have had a really rough few weeks, things feel like they are spinning a bit out of control and the life we live is just moment to moment and solely based on how we manage our little boy. We live to make him happy, keep him happy, not upset him, keep him healthy, alive,Continue reading “Is it Autism or another cause or just another symptom, diagnosis, opinion…?”
Protecting my son or over sensitive ?
Today I had probably my first major parental concern moments for my disabled son. I have had moments that are minor and more medical, this one was a red flag moment about his safety in someone else’s care. I’m still really upset about it. I think I’ve talked and cried and replayed it over inContinue reading “Protecting my son or over sensitive ?”
First steps
Today we got to share watching our baby girl , 16 months old on 23 Feb 2021 take about 6 or 7 unassisted first walking steps today. It was a special moment at home on a Sunday, we’ve all been watching and waiting for. She has been cruising furniture and taking steps between coffee tableContinue reading “First steps”
TWO sounds – “An-Chor”
This week we are finally hearing a few more unprompted and impromptu two sound words/communication moments… this has been a goal and we’ve been working on this for atleast two years, we’ve been working on more eat forever!! You can hear more and eat separately, but never said together. Single word, two sounds…”Anchor” is beingContinue reading “TWO sounds – “An-Chor””
Can’t sleep
Most nights I get woken up to five or six times a night. Tonight it’s quiet and I can’t sleep. I’ve gotten up twice to check both kids are breathing, not too hot and monitors are working. Today I saw my two children hug in the stairwell when I wasn’t there prompting it or tellingContinue reading “Can’t sleep”
NDIS meeting part 1
Even with a volunteer support person online, a tired grandmother at the house to mind the sick baby, my son at preschool and 2 months of preparation.. it was still a 4 hour meeting. We are not done, reconvening next week to go through another two more goals, social and cognitive. Also need to doContinue reading “NDIS meeting part 1”
NDIS plan review week
Anyone who has ever been involved in a NDIS (National Disability Insurance Scheme) plan review process knows that this is the most stressful and emotionally exhausting stage in the NDIS funding program. This is the week for us. I’ve spent nearly 6 weeks preparing reports, letters, invoices, quotes, referrals, general advice, feedback, medical and cognitiveContinue reading “NDIS plan review week”
today was supposed to be a good day
Today was going to be a really good day, or at least a good day. I have hope every morning that today will be a bit brighter or less challenging, that there will be more moments of smiles than anxiety or hurt. I was waiting for this day for a while as it had beenContinue reading “today was supposed to be a good day”
A Journey to Joy 