comfort in my community
Life as an expat with a child with special needs is not ideal. Especially in Laos, where people have to cross the border to mend of broken bone, much less seek help for a developmental disability. And we still strugle with the question of "going home" to the US (in quotes cause I have no US home, and it surely as hell is a misnomer for Soutchai!). We don't have support groups here (hello, Bangkok) and I've just registered a url for down syndrome in Laos to at least ensure googling it gets something besides a message board of lao teenagers calling each other Lao Down Syndrome as a hilaious put down. :(
But enough with the negatives. We (meaning our family) enjoys some pretty amazing positives here. Extended family, affordable childcare, quality retail healthcare in Bangkok, and lots of other 'perks'. This weekend though, it really hit home one of the biggest perks we have:
a community of friends that have circled us with love, care, and acceptance.
I know other moms grapple with the issue of fitting in in 'typical' baby groups, uncomfortable silences around pregnant girlfriends, stares, the need to stay on safe conversation topics...
Us? Baby group and playdates were a done deal before the baby arrived and Nava's extra chromosome is a non-issue. I've never felt unable to relate as we discuss diapers, feeding, boobs, toys... Nava lags behind her peers in some ways, leads in others. I keep hoping she'll pick up some crawling tips or even just the desire to get mobile, while at the same time her fabulous eating habits make those dealing with picky eaters turn a jealous green. Normal. Just normal. Lovely.
And even outside of mommy group, acceptance is there, to be taken for granted. In a local pub this weekend a pregnant girlfriend and I got into a discussion about Nava's development, what T21 can mean, how its a new world these days for our kids. Another girlfriend and I got to talking about inclusive education (she's a teacher), conservative special interest groups, and how parents will always do all they possibly can for their kids. She let me vent about giving Nava supplements and making decisions when there's never enough information, no research budget for our kids, and controversy over the very idea of 'treatment'.
There's been some new coverage recently about the new prenatal testing that will be out soon (it will allow down syndrome pregnancies to be identified and aborted early) and it sparked another conversation about how we (broadly western society) have some deeply self-contradictory beliefs about life, the quality of it, illness, treatment.
I love that I am a part of my community of parents, of girlfriends. I've never had to feel like I'm on the outside of the party looking in like some new parents of special needs kids . I haven't lost friendships or had to feel the exquisite pain I think parents must face when they see their kids quietly uninvited to parties, or leftout of activities. To be honest, I expect at some point in the future of Nava's childhood, I will have to go through that. For now I'm just grateful that the exceptional community we have here means I don't have to yet. I still need a few years to build up some thick skin for that (not to mention, the ability to hold my tongue).
Acceptance feels good.