Meeting Some Other Mums

My sister and I met some other mum's with FXS kids yesterday.  I had been talking to one mum on Facebook and we decided to meet up for a chat.  My sister and the other mum, who's son is newly diagnosed, came along too.  I had both my kids and my sister had her 2 year old.  The other two mum's had their kids in daycare.

It was fabulous.  I hadn't realised how much more effort is required to socialise with people who aren't FXS families.  All four of us have kids around 2 years old so it was lovely to be able to say how we really felt and have validation from other people who feel the same way.

We all have feelings of why us, grief (over the loss of the children and lives we thought we would have), confusion (trying to fight through the system for help), fear of the future (how our children will end up and how we will cope), isolation (friends and family have pulled away and left us very alone) and hope (that a cure will be found for our babies).  These aren't feelings that other people seem to be able to understand.  We are supposed to just accept what is happening, not dwell on what 'might' be and above all keep the embarrassing little cherubs out of sight.
I know personally I've been ostracised because Connor is loud and crashes around and he doesn't interact with the other kids how he's supposed too.  This causes the other kids to either reject him or get upset that he's around.  Whereas I'd really like the other parents to just accept he's different and teach that to their kids, they have chosen to keep their kids away from him.  It's no wonder we live in a society that is so judgmental when kids are being taught these lessons by the example of their parents.  It makes me very sad for Connor and fearful for his future.  He is a wonderful, loving, beautiful boy.  But what if I'm the only one who ever sees that?

The four of us didn't stop talking the whole time we were together.  We not only talked about our feelings, but also how our partners are coping (or not), what we are doing for our kids and gave each other advice and contacts.  Needless to say a playdate with all the kids is being organised.  We hope to catch up regularly from now on.

Oh and one other topic came up that was rather interesting and kind of scary.  None of us had any idea we had FXS in our families and one mum asked us all if we'd had any signs before our kids were diagnosed.  Strangely enough we found similarities in our mothers.  Both in behaviour and 'personality'.  I hope it's not a sign that is how I will become.  I feel like it's something we should somehow let the researchers know about, but I'm not sure how we'd do that.

Well I should go and get Connor to eat his breakfast.  He's Wombling around in his pyjamas ignoring it (Merryn has hoovered her's down as usual).