Thursday, July 21, 2011

Ups and Down(s)

This is more a jumbled mix of events then a cohesive train of thought, and I don't think we're going to land anywhere satisfying, but maybe if I put it to it all to screen someone can pat me on the head nicely, at the end, and tell me it'll all be ok. 
We have three appointments for my girl scheduled over the next string of Fridays:  post-op check up with the eye doctor, her first dentist appointment ever, and her three year check up where we'll get a slip for a neck Xray, and more labs to check her thyroid, white blood cells, and a couple other things I can't recall at the moment but googling "blood test down syndrome" sends us down a dark rabbit hole.  And, after listening to her stop breathing for several achingly long seconds the other morning, I'm also going to ask for a sleep study.  And maybe a real hearing test, though I suspect that is more willful toddler-ism than hearing loss, because the girl can hear the fridge open, the dogs' water dish get filled, and her daddy's voice on the answering machine even when she's upstairs and/or otherwise occupied.  [She cannot, oddly, hear me tell her to get down off the fireplace or to not dump said dog bowl.]  At my son's first dentist appointment (at much less than 3 but, among other things, DS caused delayed dentition), they counted his teeth, gave him a toy and a sugar-free lollipop, and sent him on his way. For my daughter's first dentist appointment I have to call her cardiologist for an antibiotic to prevent endocarditis. We will need to do this for every dental appointment, ever, for the rest of her life.

Calling to get that script made me profoundly sad, even if only briefly.  Just one more thing that’s now woven into our lives.  Just as the $1500 in medical bills languishing in our bill box is.  And we're only half way thru her annual out of pocket.  Yeah.

Then there was this bit on NPR about a new in utero procedure to correct spina bifida.  In the audio version, they noted that back in the day, when spina bifida was diagnosed, moms had the choice of termination or delivering a child with what would be probable special needs.  Now they operate on a six inch long fetus.  I found myself crying while I listened - if only it were that simple


That same week, Alison blogged about reading the comments on an article about the aforementioned New! and Safe! blood test for Down Syndrome.  In my esteemed opinion, reading the comments on ANY news article is an exercise in feeling smarter and saner than the average nut job [commenters on the news being quite distinct from those of my lovable gracious readers], but the people here were exceptionally vicious.  Or maybe I just make a point of not reading them normally.  Particularly galling was this guy who, just to make it cut deeper, managed to write in complete sentences and used "preempt" appropriately (though appears unclear on “release” versus “realize”):

Anyone who claims that their child’s mental or severe physical handicap somehow brings love or inspiration into the world are simply in denial about the negative impact on everyone involved. Back in the day these sorts of children would simply be allowed to die. Medical science then stepped in to prevent that unfortunate fate, but any parent who make excuses about how the born-disabled are so important and special fails to release that after they themselves die a child that cannot take care of him or herself will be a burden on someone (either family or the state) and will more likely than not to have a poor quality of life. Since Medical Science has allowed for these children to actually grow to adulthood, it would be no less unnatural to allow science to preempt the problem completely.

On one hand this is easily dismissed as just one random guy who can't get laid and whose mother didn't give him enough hugs.  But he's not alone.  There are thousands of more comments out there just like it, and probably even more people who believe it, even if they wouldn't express it.  It's hardly worth addressing exactly how wrong they are - especially in this space, read by my daughter's family & friends, & similar parents who are busy loving their little inspirations and don't have time to leave troll-like comments advocating passive infanticide.  I started to, in the role of mommy-advocate, but the process infuriated me.

My discomfort with this piece of garden art from earlier this month was because I suspect Random Commenter & his kind most likely interpret this much differently than I do.  I suspect he quantifies "legitimate reason" as income, job title, or number of patents filed.  Family, friends, Sunday brunch, smooshy hugs, and playing in the kiddie pool while blowing bubbles probably isn't reason enough to justify a life.


Then of course, this week we had GQ weighing in on Bostonian's fashion sense, writing they suffer "from a kind of Style Down Syndrome, where a little extra ends up ruining everything".  This was well covered in the blogosphere so this is for my family:  read Dr Brian Skoto's response here, and I’m also going to link to Anna's post with explanation, and who also awesomely posted her own funny-pants photo, and to Cate who had the best line - "My kid isn't a cheap punch line". (Which I think I’m going to steal for use during my next office lunch).  I bravely ventured into the comments of the (now revised) GQ article and saw a lot of griping about overly sensitive speech police.  No, bastards, we're just don't think our kids are ruined.  Or punchlines.

I feel zero compulsion to qualify my life but I sometimes wonder if by mentioning our $1500 in medical bills, how much we're paying in life insurance so my daughter won't be a "burden", or my daughter's speech delays, if I might not be contributing to the perception of a "problem".  Maybe I should present thrice-weekly photo-shopped catalogue spreads instead, to sell the up-side harder.  I joke about rainbows & unicorns but I kind of assume y'all know I'm joking, given my normal morose tendencies.  We live in the real world, not in an afterschool movie.  Raising any child is hard - the need to feed and clothe them and make sure they are minded, schooled, entertained, encouraged and grow up not to be sociopaths who leave troll-like comments online is a "burden".  They suck money, time, sleep, and they leave stretch marks and cesarean scars.  My daughter's delays don't bring me love and inspiration, MY DAUGHTER does.  Both my children do.  That we do a little extra for her is natural - we do a little extra for my son too, in different ways.  I would chew off my own arm for either of them.  It's puzzling how few get that.  It's infuriating that I would have to defend it. 

On a brighter note, my adopted home state (gawd, I never thought I'd say that!) just took the nice step of cleaning up their language and will remove the "R___" word from officialdom.

Also, courtesy of Love That Max, not 30 minutes ago, came this (speaking of catalogues):
As if we needed another reason to love Nordy's

In the interest of not making my head explode I'm going to ignore the first part of her post with the potato reference. 
Well, I guess I won't...
People suck.


  1. Sometimes people suck.
    Sometimes cyberspace echos
    With the rants of trolls.

    Writing it all out,
    Giving us the unvarnished
    Truth, teaches and heals.

  2. Much success with all the appointments! We just had a hearing test that sounds very similar to what you described: she seems to be able to hear really well when she's motivated, but in the audiology room--not so motivated. We're following up with an ENT.

    What you say about "raising any child is hard": I think one of the things we need is for the world to change so that as parents of kids with Down syndrome, we're allowed to complain without people saying, "See, that's why those kids shouldn't exist." My friends with typical kids are allowed to complain, and nobody says, "Yeah, those typical kids--they are a burden. If only there were a prenatal test for them!"

    Finally, love the description of the troll as someone who needs to get laid. Perhaps that can be our activism campaign: More great sex for everybody! Let's cheer up the planet!

  3. Oh, and thanks for the links to blogs I should be reading. Keep doing that!

  4. I don't mind if you go on and on about these issues. It is energy well spent! I think that people could get it if they weren't so busy trying to pretend their life was perfect!

  5. Writing it out DOES help - thanks for listening, er, reading. It's reassuring to know there's a community of "normal" (ha!) people out there who offer so much support & affection. xoxox, k.

  6. Big Hugs!!

    I usually can tune out the haters, but sometimes...UGH. I get infuriated by people who want me to justify my daughter's existence when obviously they are a rotten piece of humanity.

    People suck.