new idea: to also have a space for more words of the rambling kind...
up until now i've been a pretty anonymous blog reader and recipient of the I & T support system (invisible & tangible) that this network offers. reading about other family's experiences with children having down syndrome has provided me with a gentle, steady sense of belonging to a community. this has been something both real and, a little bizarre seeing as i don't personally know anybody in that typical "know-people-kind-of-way". but considering that so much conversation takes place in this community regarding what "typical" is or isn't and all of the following ramifications, i guess it also fits.
after first dipping into this cyber world last fall, i followed the urge to also create a blogsite related to my daughter, livia milena, and open even more doors for family and friends living far away to be part of our lives. i have only been partially successful in this original venture, as a certain unwanted feeling of nakedness accompanied me, and i haven't completely wrestled my ambivalence regarding it into a solid corner. family and friends still receive most info and pic/video updates via email, and maybe it will always remain that way.
this wordiness of a new kind starts for me a different brand of door opening; one of reaching more actively towards this community and making myself visible and vulnerable as a searching, exploring member. i've also had many urges to respond, inquire, comment and request various things related to life including down syndrome, and have mostly not followed through. may this be a new beginning.
that said, i am a canadian living in bern, switzerland (and have been here long enough to also have: swiss citizenship; a good, passive understanding of the swiss german language; a poor but i-can-get-by usage of high german; a rapidly deteriorating grasp of my mother-tongue and, a feeling of being home). all that to say that i'm particulary interested in gathering information about what support systems are offered for children with down syndrome in other parts of the world.
both livia's papa and i are convinced of the necessity to be the best of advocates for supporting and encouraging her highest potential, and this includes (as anyone in this and other communities knows) being well informed, knowing the right questions to ask, not accepting small-mindedness for answers, paving new pathways and being open to learning constantly (to name just a few). sometimes this feels easy and natural, other times i am burdened by the weight of this responsibility and my challenged capacity to make decisions. i'm constantly wondering if i'm doing enough and particulary in light of the fact that switzerland seems to run on fairly outdated templates of conservative thought. there are many good services offered- also covered by "invalidity" insurance (love that label), but integration is far behind and the general enthusiasm i feel in north america regarding the notion that "anything and all is possible... reach for the sky!" is acutely missing. sassiness is a word this culture does not know.
bottom line is, i'm strengthening my "pushy-mama-muscles" and am wanting to refine their usage... knowing when and where and how and to what degree they need to be employed. this goes hand-in-hand with wanting to keep our lives as "normal/typical/un-special/ordinary" as possible, which is most often the case.
livia having 3 great brothers who live with us one week, their mother the next, certainly helps in achieving this goal. they have a sister they love and who tries to take away their cards when playing on the floor... and that's it. they only know the word "handicapped" in relationship to livia because we explained it to them, wanting them to know how others might label her and to prepare the ground for their own need to educate regarding who she is.
i'll end for now with a favourite quote:
"Normal?? Well now, that's just a settin' on your dryer, honey!"