So the online world is a fraught, fraught place. I knew this even before I started reaching out on Facebook groups for Trisomy 9, looking for support or to compare notes with other families on their experiences. It's the reason I refuse to read the comments on news articles on FB- the comments sections are just filled with people attacking each other, saying horrible things about each other's moms, threatening bodily harm. It's ugly. So ugly.
Anyway, when we received Sproglet's diagnosis, one of the tips our geneticist gave us was to find other families who are dealing with a similar diagnosis. Make friends, build a community, right?
So that's what I did.
I found a few sites on FB that had key words like "Chromosome 9 disorders" and "Trisomy 9p/q/m" etc. I started pouring through the posts there and of course questions started forming in my brain. So I referred to each page's "About" page to make sure I adhered to rules when I posted.
One of the things that's troubling me about T9p is the understanding that kids with this disorder have extreme difficulties with communication. One description I've read said "Trouble with connection between the brain and the mouth." That really sticks in my craw, I tell you...
Maybe because I look at my adorable, babbling (won't ever shut up) 5 month old and I see someone who wants, so badly, to talk. So A) I don't see how this bright little thing won't have superior conversation skills. She's practically giving State of the Union addresses in our living room every night. It's like the Sydney Freaking Opera House in her crib. She's vocal.
B) I am really, like, really worried that Sproglet will be treated badly- by other kids, by salespeople in department stores, by anyone really. I think how many times I've averted my eyes from a profoundly disabled person, instead of seeing them, looking at them and saying "Hi, how are you?" because I was just uncomfortable acknowledging their differences, or I was worried that I wouldn't be able to understand what they are saying so I just avoided the attempt. How awful I feel about that. It's dehumanizing. I don't want my baby to ever feel devalued. And that's where my discomfort with her diagnosis lives- in how she will feel in her own skin.
I will be working really hard with my therapist to learn how to not transfer that worry to Sproglet. This is MY problem, not hers.
And C) I need to admit that I'm still in some stage of denial here. I just don't believe that she's disabled. I look at her and see a typical baby, albeit with some motor delays and obvious hurtles to overcome. I guess acceptance will come as she grows and her abilities become more noticeable.
ANYWAY back to the FB page thing. So apparently, because there are differing levels of severity to Trisomy 9, it's considered rude to post on a page populated by parents who are dealing with majorly ill children. This I learned at 3 am when I got a FB message from a lady in California (gently, to be fair- though other interactions I've had with this woman lead me to believe that she's a Bossy McBosserton) scolding me for posting a question about speech delays on a page that is reserved for the parents of kids who may or may not live til next month. To be clear, no where on this particular page was this warning posted- in fact it encouraged posts by people of all karyotypes, to vent or get information. I didn't break any rules.
But of course, I feel awful. In no way was it my intention to post something trivial in the minds of terminal parents.... I simply just didn't know.
I guess it's good to be reminded that my worries can always be worse. But damn it, I need to acknowledge my own struggles too.
Anyway, lesson learned. I'll probably be much more selective in any posts I make from now on.
Oh and I will now make it a point to greet all the kids I pass when dropping off Sproglet's older brother at his inclusion (typical kids educated alongside kids with disabilities) school. Their comfort is more important than mine.
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