I pride myself on not being a Helicopter Parent – you know, those parents who have their hands in everything their kids do, who choreograph, plan, and manage their kids lives down to every hour, who allow their kids to do so little for themselves that their kids don’t really gain an understanding of independence and success and failure based on their own hard work and determination? Yeah, that’s not me. Maybe it’s not even a matter of pride on my part, it’s just not how I’m wired. And I’m just a true believer in the value of the School of Hard Knocks.
Let’s take school, for instance. I’ve never been one to sit down and babysit my kids as they do their homework. It seems to me that if they can’t do it by themselves, then they’re not understanding the lessons at school. And besides, I paid my dues – I put in my years and years of homework through my own studenthood; I don’t have any desire to be doing homework now. I also think it’s important that they learn from the get-go that school and homework are their responsibilities, not mine or their dad’s. I prefer to be available to my kids on a consultant basis: if they need some explanation or clarification, or if they need help coming up with ideas on how they can solve a problem, I’m there. But I’m not going to hold their hands and walk them through every step of it.
That said, there are times when I find myself crossing that line and getting a little too involved. A perfect example is this project Joey was recently given at school. His class is learning about the town we live in, and as part of that study topic, the kids were each given a list of projects from which they had to choose one to complete. On the list were all sorts of things, like: create a photo collage of historic locations in your town with descriptions of each photo; create a video a tour of your town; or, interview someone who has lived in your town for over forty years. But Joey had to choose what was probably the most difficult one on the list: build a model of a historical building in your town. Joey chose to build a model of our local police station – a very pretty and historic building to be sure. No amount of attempts on my part to convince him that this would be a very difficult and time-consuming project would discourage him. So out we went yesterday to the craft store, unloading about $50 for supplies for this project.
It’s due at the end of this week. As today rolled around, I realized that the bulk of this project was going to have to be completed today – what with regular homework and baseball during the week. As the morning wore on, I found myself getting more and more stressed out about it. It occurred to me that Joey doesn’t have the foggiest idea how to create a building – let alone a replica of our local police station! – so I resigned myself to constructing the building for him and then having him paint it and add all the details. So I dragged out the balsa wood we bought, and the glue, and the photos of the police station that I printed for him, and got to work.
And then I found myself feeling decidedly pissed off. Why was I doing the building for him? Why was I getting all stressed out about it? Why was I sacrificing my Sunday to this project he chose while he was outside playing baseball?
I came to my senses. Okay, so he may not have any idea how to construct a building out of balsa wood . . . or maybe he does. Maybe I’m not giving him enough credit – maybe he can figure it out. One thing is for sure: if I do it for him, he’s not going to learn anything about his own abilities. Maybe he’ll bomb on this project. Maybe his police station will look nothing like our historical police station. Maybe he’ll get a really bad grade on it. But really, so what? It’s third grade, for crying out loud. This project is not going to determine the rest of his life, or even the rest of his educational journey. If he doesn’t do well on it, he’ll have learned something about being realistic, about how far hard work and determination can get him. If he does well, he’ll have the wonderful knowledge that he did it himself.
So I called him in from outside and handed all the materials over to him. “It’s your project, Honey. You can do it. Good luck!” I told him. He had a momentary look of a deer in headlights. I just smiled at him. He’s been in his room ever since, working away. True, he’s coming out about every seven minutes with a question, but he’s doing it himself.
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.
Each time Finn has been admitted to the hospital for a procedure (as with his sedated echo a couple weeks ago, and more recently, a second set of tubes being put in his ears), upon admittance we are asked by a nurse a slew of questions which she checks off on a form. One of the questions is invariably, “Is he up to date on his immunizations?” My answer is always “No,” at which point I get the questioning look from the nurse who follows up with “Which ones are not up to date?” “None of them are. He’s never had any vaccines,” I answer. More quizzical looks from the nurse. “Is this by choice?” she asks. “Yes,” I say.
All of my kids, with the exception of Finn, are vaccinated according to the recommended immunization schedule. I never questioned it early in my mothering career. Just like having baby boys circumcised, vaccinating per the recommended schedule was just what you did, end of story. But as time went on and I had more children and my whole perception of modern mainstream maternity, postpartum, and infant care began to change, I began questioning more and more. By the time I was pregnant for the third time, I was ready to throw in the towel on medical/hospital-based maternity care and opted for midwifery care and a homebirth instead. Lo and behold, we found out we were expecting twins, though, so my dreams of a homebirth were postponed until the next time around. By the time I was pregnant the fourth time, with Lilah, I was going to have a homebirth come Hell or high water, and by then I was really questioning circumcision and vaccines. We opted to go ahead with most of the recommended vaccines for Lilah, though I refused the rotovirus vaccine, feeling very distrustful of newer vaccines that did not appear to have a proven safety record. We’ve also never done flu shots on any of our kids.
When I was pregnant the fifth time, we found out we were having a boy and decided, based on lots of reading, talking to other parents, and talking to our pediatrician, not to have our new baby boy circumcised. I agonized over vaccinations – should we or shouldn’t we? The skyrocketing autism rates were scaring the crap out of me – despite the fact that our pediatrician and a lot of other people kept saying “There is no link between vaccines and autism.”
Ironically, the deciding factor for us was finding out that Finn has Down syndrome. Because he has Down syndrome, he (supposedly) already has a “compromised” immune system. This fact alone seems to spur a lot of parents to definitely go forward with vaccines. It made me even more gun-shy of getting him immunized. In my mind, I couldn’t help but remember that my pediatrician has always wanted to delay vaccines if one of my children were sick when they were due for vaccines, exactly because it wasn’t a good idea to put toxins into the bodies of children whose immune systems were compromised by illness. Seven months after Finn was born, my husband was diagnosed with Stage III colorectal cancer, and throughout his treatment, our kids could not receive live-virus vaccines because Michael’s indirect exposure could prove very dangerous to him while his immune system was compromised by chemo. That said a lot to me, too. Vaccines are not entirely benign; they can be dangerous.
Down syndrome also, as I understand it, puts Finn at a higher risk already of developing autism. I just couldn’t justify taking the risk; if by some chance he sustained a neurological injury because of a vaccine, I don’t know how I would live with that – with something that could be prevented. So we opted not to have any vaccines administered to him. Once the decision was made, I felt completely relieved and at peace with it. I have felt perfectly comfortable with our decision: he’s not in daycare or school, so is not exposed to lots of other children anyway, and his siblings are immunized, so they won’t be bringing home polio or rubella or whatnot.
But all along, people (including our pediatrician) keep saying, “There’s no link between vaccines and autism.” I’ve never understood how such a sweeping statement can be made with such confidence. The fact is, nobody knows what does cause autism – so how can anybody say with absolute certainty what does not cause autism? My, albeit very amateur, guess is that different things cause autism in different children. For some, it probably is vaccines. And the scary thing is, there is no way to know which children will be adversely affected and which will not.
The CDC is now – finally – going to conduct a study of a possible link between vaccines and autism: CDC to Study Vaccines and Autism. I think this is wonderful news. There is an autism epidemic, and we need some answers.
In all honesty, I still find myself torn to some degree about vaccinations. Without a doubt, vaccines have saved millions upon millions of lives from diseases that, in the past, almost always ended in death. Even so, I feel extremely fortunate – as in nothing but a lucky roll of the dice – that none of my kids who have received vaccines have been injured by them. I have very, very mixed feelings about the Gardasil vaccine that my daughters will be old enough to receive in just a few short years (and I will say that I, personally, am not unfamiliar with HPV and precancerous cell growth caused by it). Check this out from the Gardasil website:
IMPORTANT SAFETY INFORMATION
Anyone who is allergic to the ingredients of GARDASIL, including those severely allergic to yeast, should not receive the vaccine. GARDASIL is not for women who are pregnant.
The side effects include pain, swelling, itching, bruising, and redness at the injection site, headache, fever, nausea, dizziness, vomiting, and fainting. Fainting can happen after getting GARDASIL. Sometimes people who faint can fall and hurt themselves. For this reason, your health care professional may ask you to sit or lie down for 15 minutes after you get GARDASIL. Some people who faint might shake or become stiff. This may require evaluation or treatment by your health care professional.
“Shake or become stiff”? Hello?!? That sounds very much like seizures to me.
As an aside, I took our little malti-poo in for her shots a couple months ago. She was due for everything, so they gave her all of her vaccines in one visit. For the next 48 hours, she was, well, as sick as a dog – lethargic, vomiting over and over . . . ugh, not pretty. And that’s a dog. It really had me thinking about things.
I am also torn about whether or not to begin at least some vaccines for Finn as he gets older and we enroll him in school, where he will be regularly exposed to other children. Do I assume/hope his immune system is better able to handle vaccines at age three than it was when he was an infant? It still feels like a huge leap of faith to me, faith that I’m not sure I have.
So, in the end, everyone has to make the decision for their own family. And I’m not saying that nobody should vaccinate, ever. I’m just saying that there is clearly a lot more to be explored and studied here, and we parents need to be aware and cautious.
Since I put it out there, that whole thing about Kevin getting punched in the arm at school, I feel that I owe some follow-up.
It’s not something I’ve taken lightly, and I’ve agonized a little over whether to do anything about it or not – namely, contact the principal and/or the teacher of the class in which this happened. Bullying is not something we, as a family, are unfamiliar with. I was bullied pretty much all through school, and we dealt with a pretty serious situation in which Kevin was being bullied back when he was in fifth grade. He even took part in a radio program a year or two ago that discussed the topic of bullying.
The thing is, as Kevin gets older (and being my first-born, he is, unfortunately, sort of the guinea pig in our parenting adventures), I am discovering that it becomes a slippery slope, this inclination of mine to want to step in and take charge of situations. As Michael has pointed out to me, Kevin is at an age where he needs – and wants – to figure out who he is, as a separate person from his parents. He needs – and wants – to be given room to deal with situations on his own, in his own way. And as much as it hurts me as his mother – who wants more than anything to protect him and keep him safe – I am realizing that if we don’t give him the chance to deal, he’s never going to learn how to deal. We are his safety net at this point, but he’s starting to spread his wings a little and find his way in the world. Hopefully we’ve given him the tools to do just that.
So, in the end, after much discussion between me and Michael, Michael and Kevin, and me and Kevin, I decided to do nothing because that’s what Kevin wanted. Although Kevin admits that this other kid “got carried away,” Kevin does not seem to be afraid of this kid, or of going to school. He’s had an extremely positive experience overall at this school, and given all the information about the situation, it seems pretty clear that my going to the teacher and/or principal would rock the boat unnecessarily for Kevin and probably cause him more harm than good. He says that’s why he lied to me about the bruises to begin with – because he knew I’d make a big deal about it and he didn’t want me to intervene. (And although this does not justify his lying to me – which I emphasized to him – I do get what he’s saying.)
All that being said, I of course still don’t like what happened. At all. Michael insists that this is a boy thing – boys of a certain age begin rough-housing in this manner, it’s pretty harmless, yada yada yada. As I said to Michael, it’s all about testosterone and who can piss the farthest, and it seems to carry over well into adulthood for a lot of guys, this whole ego-tough-guy-machismo thing. I don’t like it. I don’t like “play” that involves violence or inflicting injury to someone else, and I’m not going to condone it – I don’t care if it’s “typical” boy behavior.
This led to some friendly but heated discussion last night. I asked Michael, “What if it was your daughter who came home with bruises like that? Would you be okay with that?” “That’s different,” he said.
Now that our kids are getting a little older, and we have a bona fide teenager on our hands, differences in child-rearing are crystallizing not only based on the kids’ genders, but on the parents’ genders – moms tend to see things differently than dads do and to approach certain parenting issues differently, and expectations of the children themselves seem to be different based on whether we’re talking about a daughter or a son:
~ Rough-housing among peers, even to the point of resultant visible bruising, is apparently viewed as typical, harmless behavior by dads when the subjects are boys. Not so with girls. I, as a mom, however, don’t like it or approve of it for either boys or girls.
~ A fourteen-year-old son might be cheered on to some degree by his dad with regard to pursuing a girl he liked. If that fourteen-year-old boy actually kissed a girl (totally hypothetical; as far as we know, it hasn’t happened); Dad would be mighty proud. What if it were his fourteen-year-old daughter? Would Dad be cheering her on to pursue a boy she liked? Nah, that’s different. (Don’t forget, I reminded my husband, that the girl you might be cheering your son on to pursue is somebody’s fourteen-year-old daughter.) How would Dad feel if his fourteen-year-old daughter was kissed by a boy? Well, he seems resigned to it. Me? I think fourteen seems awfully young now that I have the perspective of a lot of years behind me. I honestly don’t want to see my fourteen-year-old son or daughter pursuing or kissing members of the opposite sex.
These are just a couple of examples, but it’s certainly food for thought. And clearly, dads have double standards and I am way more fair-minded than my husband!
Things are promising to get very interesting around here.
Just to show y’all that Finn doesn’t have a monopoly on laying challenge and heartache at my feet, here’s an interesting development concerning my eldest:
I went into the boys’ room last night at bedtime, and Kevin was sitting there with no shirt on. Right away I noticed two large purple-turning-to-green bruises on his upper arm. I asked him how that happened, and he got that shifty-eyed look and the forced chuckle and he said, “What? That? I don’t know. Don’t you ever get bruises that you don’t know how you got them?” Well, yeah, I do, like on my legs – I mean, being a klutz and all, that’s where you’ll find bruises from accidentally bumping into things and such. Upper arms though? Hmmm. I knew he was lying.
To make a long story short(er), I took him into my room to talk to him privately, and the truth came out – that some kid he sits next to in math class repeatedly punched him in the arm as part of some game. Those are some bruises, so they must have been some punches. The whole thing apparently happened last week.
While Kevin claims it was part of a “game” (the other kid would try to make Kevin flinch, and if he flinched, he got punched), he did admit that he wasn’t a willing participant and he did tell the kid to knock it off (and the kid didn’t).
This whole thing disturbs me on so many levels:
- Kevin lied to me! These little white lies are becoming something of a theme with him.
- Some punk is inflicting bodily harm on my kid! There is something about seeing ugly marks on your child’s flesh, inflicted by another person, that brings the mama bear out.
- This happened during class! This kid punched Kevin, and did whatever he was doing to get Kevin to flinch – in other words, created what one would think was a ruckus – repeatedly, and the teacher didn’t notice? WTF?
My first inclination was to get in touch with the teacher. I mean, really, what the hell is going on in her class that something like this can happen under her nose and she’s unaware? Kevin was very upset at the thought of my possibly doing anything about the situation. I still don’t know if he’s being bullied, or if this is some weird but typical rite of passage that boys of a certain age inflict on each other. I don’t like it one bit.
In the end, Michael talked me out of doing anything, saying “boys will be boys,” and that at 14, Kevin is at an age where he needs to be given the opportunity to deal on his own, in his own way. I guess the last thing he needs is his mommy running to school to stick up for him.
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 went in this morning for his sedated echo to determine the status, once and for all, of the ASD (atrial septal defect) he was born with. The last couple of times we attempted to get echos while he was awake, he was much too squirmy and uncooperative to get a good image of his heart, so it became necessary to put him under general anesthesia for the procedure. The procedure itself was very quick and non-invasive (it’s basically a detailed ultrasound), but it required his being admitted to the hospital for the morning.
I have to say, it was very surreal walking back into the lobby of the children’s hospital where Finn spent the first two weeks of his life, and as it turned out, his echo took place in the same unit where he had his surgery to repair his duodenal atresia at one day old. Lots of emotions and bad memories came flooding back. But here we are now, so very far from that time and place – it’s kind of amazing.
We spent a lot of time waiting, and then they let me carry him back to where they would administer the anesthesia. Maybe not such a good idea in hindsight, because it was very tough to help them hold him down while they placed the mask over his face and he was very scared and thrashing around . . . and then just went limp. There’s something very disturbing about seeing your child rendered completely still and helpless and unresponsive in a matter of seconds. So naturally I started crying at that point. Big blubbering ninny.
And then I went to wait in the very same waiting room where we waited while he was having his very first surgery. But it was all over pretty quickly, and the good news is that his ASD is no more! I didn’t even realize what a relief hearing that would be.
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?