It’s been a long, busy week.  The kids have been on reduced schedule all week, which means they’ve been home from school lots earlier in the day and keeping me hopping.

And, I don’t know . . . I kind of have the doldrums.

Which I’m not going to go into a lot of deets about.  I pride myself on being an honest, open book, but some things just aren’t meant for publicizing.

Anyway, so stuff has been getting under my skin.  More than usual.  Case in point:

This morning I had to take Lilah to the doctor.  A specialist, not our regular pediatrician.  See, she has this . . . growth.  On her bottom.  She’s had it since babyhood and it’s mostly likely just a skin tag, nothing to worry about, but we had it checked out a couple years ago and were told to keep an eye on it, and over the last couple of years, since she became potty trained and we are therefore not faced (literally) with her little heiny anymore, it almost slipped our minds.  Until somehow or other – after a bath or something – recently, it came to light that this little anomaly is still there.  So I got a referral to the pediatric gastro-enterologist again (seriously, it’s external – I would have thought a dermatologist would be called for, but no).  So that’s where we went this morning.  Not the same female doc at this specialty clinic we saw last time.  A man.  Who left me feeling quite uncomfortable.  The way he examined my four-year old daughter’s behind close up and personal with no gloves (!!); the way he tickled her afterwards (on her belly and chest) . . . to put her at ease?  I don’t know, but it felt weird.  The way he told me that yes, it’s a skin tag and almost certainly nothing to worry about, “but if it changes, you can take pictures and email them to me and I’ll take a look.”  Hmmm.  Really?  I’m going to email pictures of my daughter’s butt to you, send them out over the internet where anything can happen to them?  How do I know you’re not some perv who collects pictures of children’s naked bottoms?  Granted, the email address he gave me was a professional one, not a personal one, but still, I found that highly odd.  Am I just in the dark?  Is this common practice nowadays?  Email your doc a pic for follow-up.  Huh.

So that didn’t sit well with me.  But it’s kind of one of those things . . . blurry.  Did he do anything inappropriate, or was I just imagining things?  Being paranoid and putting my own spin on what is really completely innocuous?  It’s unsettling to just not know for sure, and therefore to not know what to do about it, if anything.

He was looking at our last name, too.  “That looks familiar,” he said.  “Not a common last name.  Where have I seen that before?”  I told him, “Well, we’ve had lots of dealings with CHOC with some of our other kids . . .”  He pointed to Finn, who was sitting in his stroller through the proceedings.  “Him?” the doctor asked.  “Yes, he’s been here to the hospital a time or two.”  “Oh?” he said.  “Well, he has Down syndrome . . .” I said.  “Yes, I can see that!” He said.  “So what’s he been in for?  Heart disease?  Leukemia?”  Asshole.

Wow.  That really got under my skin.  I’ve wondered for the longest time, in some vague way, if people can see right off the bat that Finn has Ds.  I guess I have my answer now.  I know this guy is a doctor and is therefore probably tuned in a little more to “the look.”  And why would it even bother me if people can tell at a glance that Finn has Ds?  I mean, I see people with Ds, and I get this warm feeling of connection inside.  But it goes without saying that most people don’t feel all warm and fuzzy when they see Down syndrome.  Those telltale facial features, they can be like a scarlet letter, announcing all kinds of misconceptions and stereotypes.  And it’s safe to say that it makes most people uncomfortable and put-off.  My son.  My beautiful baby boy.

So, yeah, kind of finding that the little things are getting to me lately.

Life, it ain’t no bowl of cherries.  Or, maybe it is, but you know, cherries have those gawdawful pits in them.

It’s funny how I got to a point where this whole Down syndrome thing was so not a big deal anymore.  So much so that I put Finnian’s Journey out to pasture and moseyed on over here to a brand new blog where Down syndrome would only have occasional cameo appearances because it was just no longer the focal point of my life that it once was.

And yet here I am, focusing on Down syndrome.  Because every once in a while, it has a way of kind of slapping you in the face.

I’ve known for a while that some new, better prenatal screening is out there that lots of articles are being written about – one that detects Down syndrome even earlier, making it that much easier to terminate said pregnancies.  I have my feelings about it, but I’ve refrained from writing much about it myself because I do happen to have very mixed feelings about abortion in general, but mainly because I find the termination rate of prenatally diagnosed cases of Down syndrome so horrific that I can hardly wrap my head around it.  And so, because I find it so overwhelming to even think about, and knowing that ranting about it isn’t going to change a goddamn thing (“progress” cannot be undone; advancing technology cannot be undone; once the knowledge and ability is there, there’s no going back), I usually make a conscious choice to focus my energies where I can and do make a difference: in my family.  I focus my energies on loving Finn and ensuring that he is healthy and happy, and I try to present our life publicly as honestly as I can, with the hope that people out there who might take note of our life, will see that it’s a far cry from bad.

Still, every once in a while, Down syndrome has a way of slapping you in the face.  Finn is fine, he’s great . . . but lest I ever make the mistake of thinking that the world is an accepting place, there are always the people who catch me off guard by saying “retard” or “retarded” to me.  This past weekend it was the woman who has been cutting my hair for the last seven years.  She knows all about Finn, and there I was, in her chair as she cut my hair, and we had a lovely conversation about Finn and Down syndrome, and an aunt of hers who has Down syndrome, about tolerance and compassion, and then there it was, she blurted out “I’m such a retard!”  I was stunned.  Too stunned to even react.  I left and cried in my truck.  Then there are the people who remind you that terminating a pregnancy in which the baby has been diagnosed with Down syndrome is understandable.  And you know what?  I don’t want to judge, I really don’t.  Who the hell am I to say who should or should not man up and take what they get?  A woman’s decision to follow or not follow through with a pregnancy is hers and hers alone – I’m not going to be raising her baby or walking in her shoes, so who am I to say?  But you know what?  What really hurts about it is just the fact that it’s spawned from an attitude that children like my son are mistakes.  Errors.  Defective.  Unwanted.  Undesirable by society.  It feeds directly into the environment of intolerance he will grow up in.

I’ll say it again: the hardest part about having a child with Down syndrome is knowing that he was born into a world that does not welcome him.

So I advocate.  I get on my soapbox and preach about acceptance and tolerance and kindness and compassion.  I talk about how Finn’s life IS worth living, how he is NOT suffering, how he has so much to offer – more than we even know yet.  I show our life to people because I want people to know that it’s a good life we have – a very good life.  Finn doesn’t hold us back, he’s not a burden, we do not live under a cloud of sadness.  And that’s the truth.

But there are more truths.  Like the girl I saw at the doctor’s office this morning.  Finn is getting his second set of tubes in his ears later this week, so I had to take him to the ENT this morning for a pre-op checkup.  While we were in the waiting room, a woman walks in with her daughter – I’m guessing mid-teens – who had Ds.  They sit down and the girl starts sneezing, and she’s not covering her face, and she’s sneezing everywhere and there’s snot all over her face, and her mom is grabbing tissues and helping her blow her nose.  It wasn’t pretty.  So I’m thinking, “Great.  Is that going to be Finn?  Not even able to cover his face when he sneezes or wipe his own nose?  What else of his am I going to be wiping when he’s fifteen?”  And it put me into a funk, the very funk I’m sitting here wallowing in now.

I try very hard not to think too much about the future.  I’ve been walloped by enough curveballs in my life to know that trying to guess the future is folly.  I try to just focus on today.  Maybe next week, but not too far beyond that.  Sometimes I do catch glimpses of a possible future (Michael and I both picture tooling around the country on roadtrips in a big ol’ RV – me, him, and Finn, a threesome), but I don’t dwell on those pictures too much, because who knows what tomorrow will really bring?  I do know that my glimpses of the future do not generally include a grown son who cannot wipe his own nose.  I know he will have limitations, I know that.  But that was a slap in the face I didn’t particularly need today.

Later in the morning I ran an errand at an outdoor mall, and I saw yet another individual with Ds.  He was probably in his twenties (hard to say, though it really doesn’t matter), and he was with two other people (siblings?), and he was carrying a chili dog and laughing and just having a good old time.  I liked that.  That made me feel good.

So what’s Finn going to be?  The sneezer or the chili dog guy?  There’s just no way to know.

Finn gave me quite a scare yesterday morning.

Our house is built on a slope, so that the main living area is on the “upper” level, and the backyard is on the lower level.  The garage is under the house, and the driveway is in the backyard.  The backyard/driveway can only be accessed by going down a flight of stairs, which is separated from the kitchen by a heavy door on a hydraulic hinge, and through the “basement” (which is only sort of a basement since it’s not all underground).

Anyway, so yesterday morning I was rushing to get the kids out the door and to school.  I ran downstairs to pull my truck around to the front of the house (much easier to do this than to herd all the kids downstairs).  I came back in the house and started sending the kids out the front door to the truck, and suddenly Finn was nowhere to be found.  I looked in every room upstairs and he was nowhere.  I looked out in the front yard (which, fortunately, is surrounded by a picket fence) thinking maybe he slipped out with the other kids.  Nope.  Panic started to set in.  And then it hit me . . . what if he somehow caught the door at the top of the stairs when I ran down before it closed all the way?  Suddenly I’m having terrible visions of him lying at the bottom of the stairs.

I run down the stairs, and there he is, in the basement, crying at the window that overlooks the driveway.  Poor little bug.  But unscathed.  I have no idea how he managed to get down all those stairs without . . . well, I don’t even want to think about it.  I will say that he definitely does NOT yet walk down stairs, nor does he go down backwards.  I’ve seen him scoot down on his bottom, frontways, step by step, but only on the front porch steps, and there are only three steps there.

***

In other news, tomorrow morning Finn will have his long-awaited and many-times-rescheduled sedated echo, which I first mentioned way back here.  He will be put under general anesthesia, apparently, and so cannot have anything by mouth after midnight tonight.  I have to have him at the hospital TWO HOURS before the scheduled time of the procedure, and I think that’s the part I’m dreading the most – having to sit there waiting with a cranky, hungry baby for at least two hours.  I’m not expecting any big surprises from the echo, and am hoping to hear that his ASD is closed so we can put all this heart business behind us for good, although I also don’t want to take anything for granted.  So, we’ll see.

And next week he goes under again to have brand spankin’ new tubes put in his ears.

The honest truth is that the hardest part of having a kid with Down syndrome is knowing that he was born into a world that isn’t welcoming to people like him.

A situation revealed itself yesterday morning which involved my learning that the last time Kevin visited his grandparents a couple of weeks ago, his grandmother used the word “retarded” repeatedly in Kevin’s presence (to him or just in front of him, I don’t know).  A woman in her fifties, who is educated, who has worked as a nurse in a hospital, dealing with people from all walks of life for years and years and years.  If someone doesn’t gain compassion from that, I don’t know what to think.  A woman who knows that her fourteen-year-old grandson has a baby brother with Down syndrome (this is Kevin’s grandparents on his biological father’s side; they are not involved in my other kids’ lives by their choice).  A woman who touts herself as a good Christian, who likes to remind Kevin of Christian values (I am so very weary of this kind of Christian hypocrisy; does anyone really think Jesus would have gone around calling people retards?  Or calling things he didn’t like “retarded”?  I’m so tired of people who wear this facade of good Christianity, whose souls are full of holes and the worms that eat those holes through).  No wonder Kevin was heavy-hearted and downcast when he came home from his grandparents’ a couple weeks ago (though he wouldn’t tell me what was bothering him; I suspect he doesn’t want to give us any more reason than we already have to have a problem with these people).  How confusing and hurtful that must be for him to have his heart divided like that – here on one side, his fierce devotion to and sense of protection towards his baby brother, and here on the other side his grandma who has been a part of his life literally since the moment he was born, a woman who he looks up to, throwing the word “retarded” around.

But sometimes Kevin shows that has more character than a lot of grownups.  Days later, when Spread The Word To End The Word came on March 2, he sent his grandma an email pointing out to her that he had heard her say “retarded” several times when he was at her house, that it bothered him, why it’s hurtful and offensive, and he actually said to her that she needs to make “better choices” in the language she uses.

I’m so proud of him, but also heartsick that he even has to deal with a situation like this.

And my other son, my baby, the butt of all this.  Sometimes it all feels so futile, all this advocating, all this spreading the word.

No, the world Finn was born into isn’t particularly welcoming to people like him.  In fact, the world would rather do away with any possibility of breeding more of him.  And so, in our quest for perfection, in our quest for vanity and beauty and the best and the smartest, we continue to develop more and more sophisticated prenatal screenings so that babies like Finn can be detected earlier and earlier and obliterated before they’re much more than a blip on the ultrasound screen.

And I’m torn about it.  I can’t find it in myself not to support women’s reproductive choices – including the choice to terminate a pregnancy.  Taking away women’s power over their own bodies, forcing anyone to go through with a pregnancy they don’t want – I can’t see how that can be positive in any way.  (And honestly – and I know this will be controversial – I have been curious for a long time about what goes on in Eastern Europe; virtually every baby born with Down syndrome ends up in an orphanage.  Aren’t they doing prenatal screenings over there?  A quick Google search tells me that abortion is legal there.  There is a part of me that can’t help but think that aborting would be better than sending these babies to orphanages.  Yes, some of those babies end up being adopted by loving families from overseas, but a great many of them end up in institutions where they die.)  And yet, it causes me great pain to know that babies like Finn are the target of so many terminated pregnancies; that apparently the vast majority of people don’t want a baby like Finn; that to so many people, Finn embodies something awful and nightmarish to them.  The worst thing that could happen.

Obviously what is needed is a global shift in the way people view people with Down syndrome.  And that’s what I try to contribute to – that shift – by blogging about Finn, and showing people that this is a good life.

But sometimes it feels futile.  Will people ever get it?