Priorities

I've always put The Kids first.  I used all my energy for them and, although it wasn't a lot, I did as much as I could with them.  That sounds honourable but actually that left nothing for B.  Or myself. Or anyone else. When The Kids were babies/toddlers/very young children I think they needed that attention and [...]

My two cents – Part 2

Following on from Part 1 here's what I've learned: Your children, your parenting rules: Just because you have carers helping you does not mean you aren't the parent.  I know many carers like to do things their way - be firm.  Carers are there to help us and are supposed to be respectful of the way we [...]

My two cents – Part 1

So I've been watching the interviews at the Happily Family Parenting Conference. Lots of speakers. Lots of good questions and guidance.  Nothing about disabled parents so far. The advice provided is for everyone and it is very good advice.  Great advice.  I feel really reassured that it all lines up with my instinctive parenting style but there is [...]

Lupus & Me

Lupus has taken its toll on me and my biggest fear is the effect on my brain.  I can feel the cognitive loss- it frustrates and scares me that I now need twice as long to understand simple things.  When I try to explain this loss to my doctors I usually get a look like I [...]

Epiphany

I had an epiphany this morning. Lying in bed completely flat and in that semi-awake state where you're awake but clinging to that last bit of sleep I realised that I was resting all wrong. I know it sounds ridiculous but for those of us with fatigue issues rest becomes a science.  For example, lying [...]

Forgotten? Maybe not.

There is no guidance available for disabled parents; we fall through all the cracks.  It's as though disabled people are supposed to live alone their whole lives and not have children. Try getting through an airport with wheelchair assistance - there are no allowances for having children with you.  One wheelchair assistant actually said [of my [...]

How do you know?

I have been worrying a lot about The Kids recently.... am I doing the right thing with the home education?  Am I providing a suitable education? Are they getting out and about enough?  Am I becoming a Permissive Parent? Am I leading them down the wrong path? How am I supposed to know? A few months ago [...]

I definitely do not have the answers!

Children assume parents have all the answers and know what we're doing when in truth we're stumbling along in the dark winging it.  We have no idea!  Having a baby exit your body or your spouse's does not prepare you for the psychological minefield that is to come. There is so much preparation for labour [...]

Education?

I used to be one of these 'trust the system' people believing that all the people entrusted to provide things like care, support and education had the experience, knowledge and desire to do the right thing.  As I came to need the system I realised that it is all a façade- there is no 'one [...]

Small victories

Today was a good day. I don't often get to say that and it feels good!  The sun was shining, the temperature hit double digits, the clouds stayed away and I was up and about!  I even managed to get some time to myself. To be able to get my own medicine from the pharmacy, [...]