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 ?”
Tag Archives: SMARCA4
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””
Grief on top of grief
In addition to the daily surges of grief about our son’s life both now & the future watching him struggle to eat, breathe, sleep, communicate and play, the future for him and the huge impact on our own health & wellbeing, on top of that, I had one of those days which comes about onceContinue reading “Grief on top of grief”
A Journey to Joy 