Getting that you don’t get it IS getting it.

I’m the girl (mom) you hated when your kids were little and just had no idea what you were doing- doubting almost everything, wondering if you were doing it right.
I’m the girl who had it all figured out- the rules, the do’s and do not’s.
I looked good doing it.
I wasn’t quiet about it either- which made me pretty deserving of hate, or at least deep distain (if you prefer euphemism).

Then my daughter got sick- really sick. You can read all about it HERE
The net net is (as it applies to this conversation) it has taught me HARD what it feels like to be very misunderstood.
My daughter’s disease is so very hard to understand. Four years into it, my husband and I (almost daily) question the nature of it. So. Very. Strange.

Her disease makes me look incompetent- like I just “can’t handle parenting” and actually sometimes I can’t
It makes me look like I’m being manipulated by her and she’s just trying to get attention.
Her disease makes me look- unorganized, scattered, messy, disheveled, flaky-
I have to change plans, miss appointments, ask for help, abandon obligations…all. The. Time.
The irony is this is just the opposite of who I “really” am.
I used to make birthday cakes, now I forget birthdays.

More deeply ironic is that she seems pretty normal. If you see her you’d never know (unless you can spot the classic moon face of a steroid consumer or the dark circles of insomniac).
She’ll talk to you, behave, preform- and then you’ll think maybe I’m crazy- making it up- or at least exaggerating.
When we visit family, she’ll fight her disease HARD- appearing “normal” for days- but we pay- the second she gets safely home- explosion. Moms of children with similar brain diseases can relate- but that does not make it better- I want all the “normal” moms to understand.

It’s real
It’s hard

This all kicks my pride hard in the teeth, because I’m that girl … know it all- perfect, competent, together.

No- I’m not

Lately I’ve come to accept- I get that people don’t’ – get it- and it’s not their fault

This got me thinking what don’t I get? That I think I do?

The first thing that came to mind

Being transgender
Being a woman who wants to work full time and rarely see her children
Leaving a husband
Being fat
Being snobby and exclusive
I list these in particular- I’m sure there are more- because at some point I’ve thought I got these (forgive me I don’t know how to put it) “types” of people.
My experience as a Mother of a sick child has taught me I don’t have any idea- I just don’t know- much.

People are WAY more complex than I can ever imagine.

Their lives, choices, ways of being are so very layered with sheets of stories- experiences- hard-

and behind curtains that I can’t open.
This is refreshing

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