the guts and the glory

i'm missing my porch- and my space- and my routine.  those little pieces that keep my days together in the midst of change.

it's hard having a kid who's wired differently.  but it's really hard to have a kid who's wired differently when you're living with other people.  because- like it or not- of no fault of anyone- you and your child are on display- with all the guts and the glory.   i have a kid who doesn't 'do' what the other kids do, when the other kids do it.  a kid who can't eat what they eat- drink what they drink- who has to take pills in the morning- who (whether she likes it or not) needs to be reminded over and over again to complete her activities of daily living and who often (whether she likes it or not) needs help with them.  and when you're around other people who aren't usually watching, you feel the differences much more- (emphasis on feel).  there is a combination of feeling both embarrassed for your life, and defensive of it.  a combination of feeling overly annoyed at my child and also proud of her for handling being in a new place with out being consumed. 

because the routines are off, the familiar is absent, there are new things to process and  the typical coping mechanisms aren't around.  the things she relies on to manage life, and the things i rely on to parent my special kid- aren't there when we travel and live with other people.  so the stress levels are higher- and there is the living with the anticipation of possible trouble- always lurking in the background.  and inevitably, the 'ugly' comes out -because when you live with people, they see all those times that people don't see when they come for a visit or meet you for dinner.  they get to see her when she falls to bits and me with my hair standing on end.

and who i might want them to believe that i am- can be quickly stripped away as the reality of who i am screams loudly for all to hear (literally).

so i'm left feeling like my underwear is sticking out- for all to see- all the time.  i'm left feeling vulnerable and it makes me feel raw and tired and short fused and mildly trapped.

it can leave me wanting to shout- ' we have bigger fish to fry!' so it doesn't matter if she leaves the table before everyone is finished or doesn't help set the table, or she brings her toys with her to the event or she watches a movie instead of playing outside- we have bigger fish to fry. 

and no she doesn't eat the hearty wheat version of gluten free bread or peanut butter with chunks or pretty much anything with a sauce- and i'm ok with that because - we have bigger fish to fry!

yes she does eat chocolate almond milk at every meal - even with syrupy pancakes.  yes she does get help washing her hair.  yes she does get to watch another cartoon show on my computer- because we have bigger fish to fry.

and somehow in this process you see your own life from other peoples possible perspective and you are reminded again that you belong to a different club- the not-normal club- the one that you didn't mean to sign up for- the one that means you too are different and so is your life. 

but i knew all this before we decided to come up to new england for july.  i knew this because we live this.  but you make a choice.  you can choose to be with people and try- despite the embarrassment of metaphorical undergarments being seen- or to hibernate and 'protect' yourselves. and this is good for us- it's good to live in a way that is not hiding out because it's easier- it's good for other people who know and love us, to experience our reality-even in our vulnerability- to see our guts and our glory.