Feelin’ Funky
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.
Life As I Know It 
Oh Lisa…once again I completely understand. I was hit hard today as well…..I don’t know why….I don’t know what sparked it but I just felt heavy with it all. It’s so hard sometimes. One day at a time….it HAS to be my motto.
Hi Loo. I hear you, loud and clear. And I totally get the funk an the question about the future. But consider this: who will ANY of your kids be? The person in the mug shot on the news last night, or the midwife who delivered your baby, or the Nobel peace prize winnder, or the guy who mops the floor in the coffe shop, or the Pro baseball player, or the bus driver, or the kid who writes you letters from college, or the kid who writes you letters from their tour bus, or the kid who cussed you out and leaves home at 18, or the kid who comes back and apologizes…
You get what I mean. We, as parents, will do the best to get them walking down the path(s) we like and can accept, but the rest is not up to us. Scary…bu also exciting. Let’s hope for the best. And if the kids DO need us to wipe their noses from time to time–of course it’s gonna happen in a crowded waiting room where other people are watching right??? Ay yi yi. Hopefully we’ll be able to just laugh if it does (cry in our trucks from time to time, too), but…it’s just snot. Right?
(now, you have to boost me up next time I vet down. Deal??)
xoxo
Hugs Lisa. I go through that too and then I remind myself, despite the apparent ease other kids seem to develop they too may end up sneezing all over their faces ! Ahh… that might only make you feel partly better considering you have multiple children 🙂 but you get what I mean. It’s scary being a parent and not having the assurances that their lives will be comfortable and they will have a place in it! I agree that it is the worst part.
I guess something in your post makes me wonder about myself: won’t I be glad if Finnian doesn’t need us to wipe his nose or whatever when he’s older? And glad for who? Me or him? And why does all that matter? Is it a question of dignity (and again, whose dignity), or just being higher functioning, or that it is a lesser burden on us? It’s not really a question of acceptance-we both will accept him no matter what-but something else. Yet, there also is some excitement in still not knowing his capabilities: with the other kids we just assume they’ll do this and do that; it’s just a question of when or if they want to and we take it all for granted. With Finnian I guess it’s more interesting in a way, and yeah, even exciting, to see how it will all unfold and to see what our little man is and will be capable of, and to not take any of it for granted.
I so hear you. So much depends on the unknowable future, in which you and Finn will discover what he can learn to do, by when, and what comes later if at all. And: it’s important to give yourself credit for Finn’s current abilities, which have arrived in the environment and family that you create and maintain. I’m betting that Finn will be the happy young man with the hotdog, just based on what I see of him here — and you.
Part of it, I think, is what parents expect of their kids. Maybe the parents of the girl in the dr. office have never taught her to blow her own nose because they don’t expect her to be able to do it? I see so many parents, and not even necessarily those whose kids have disabilities, who don’t let their kids do things, or who don’t encourage their kids to try doing things.
Or maybe they never taught her to cover her sneezes because they don’t do it themselves? I know a few kids at Tiven’s school who don’t cover their sneezes, and at an event this weekend I discovered that many of those same parents weren’t!
There is a woman with ds that works at the grocery store I go to. One day she was spraying and wiping down the conveyor belt and said to me…I am going to send the bottle down the conveyor belt to the cashier. I said okay….but you’re not going to make me pay for it are you? She was all serious and said -oh no I’m just giving it back to the cashier- I laughed and said I was just joking…So she looks at me in the eye and says- well nice try!
Just one of the many conversation we have had!
I can totally understand your situation and where you are coming from and why you get so upset with the term “retard”. Unfortunately this term is ingrained in not only American but also Australian language and I can understand how this derogatory comment can hurt you so deeply when you love Finn so much and you don’t want him to be ‘painted with this brush’. But, words like this are like others in the English language that are used as a seemingly ‘throw away’ term or casual comment. And…. these words have evolved over the years…. certainly I have seen many terminologies, slogans and derogatory words that used to be that are now no longer used.
Retard, slow, fag, or slang for people from other countries such as Pom etc etc (which I am… an Australian born in England)…. these words are ones that I heard a LOT in my teenage years… they were normal words and people didn’t get offended BACL THEN…..but now they are mostly no longer used as they are seen to be derogatory or racist. And… the whole world is now so revved up on being totally politically correct all the time that almost all of us say things in every day language that could or would upset someone else. You have to remember that we have grown up hearing and sometimes using these words and sometimes people say a word without thinking first or without meaning it in a hurtful way (because it is a word used by their parents or themselves when they were kids). It is a learning curve to not use words that can be deemed hurtful to others… but then… everyone has a different opinion and what is offensive to one person is not to another. For instance look at the current trend of calling red headed people ‘nasty things’…. my stepson is red headed and he has been called “ranger” (slang for orang-u-tang) and other far more hurtful things. Not only kids but also (non-red haired) Adults called him ranger, blue, red, should be dead, etc Whilst this was not offensive to them… it certainly was and is to him. When he was 12 he was desperate to dye his hair black so he would be ‘normal’. I told him he should be proud of his Scottish heritage and his red hair (25% of scots are red headed… more than anywhere else in the world). It took him a few years but he is now at peace with his red hair and has decided to let these comments be like water off a ducks back.
Just look at the last 20 years and homosexual terms for instance. How many of us called gay guys ‘fags’ or other such words 20 years ago back when being outwardly gay was not done. Nowadays of course being gay is actually normal and vogue to be gay and now we, who were brought up in a time when you hid you were gay and gays were not spoken of, now have to ensure we speak politically correct so as not to upset ANYONE.
I guess what I am trying to say is that you are more sensitive than other people because you have Finn therefore anyone who speaks about any person in this manner is seemingly attacking your own child. What people sometimes say without thinking is not a personal attack on you, or on Finn and I guess if it was me I would just say “you know, Retard, is really not a nice term”… and I’m sure the person would apologise and probably think about not using the term again. Finn will come up against people that call him things that may hurt him as will you and the rest of your family. But then again your other kids will have people comment on things about them that will upset your children and/or you. I come up against people who call my kids things I don’t like or have opinions of them… but I can let this eat me up, I can get angry, I can ignore it, or I can re-teach the person who has commented that the comment wasn’t appropriate. I know that my son was quite badly affected by his ‘ranger’ term (so much so he secretly dyed his hair (a shocking white) blond one weekend) All I am saying is try not to get so personally hurt… because it will eat you up.
So would I abort a non-perfect child (whatever that is!)… well…. I had genetic counselling prior to starting a family in my early 20’s as there was a medical issue in my 1st husbands family that I was concerned could affect my children. My opinion then, and now, be it be perceived right or wrong by others, is that if I found out that the child I was carrying had a genetic or other disorder which was felt to be serious, in that it would mean a particular kind of life for our family and/or the child then I would be preferred to terminate as early as possible in the pregnancy.
So… if I had found out that the child I was carrying had CF would I terminate…. YES I would. Would I terminate if I knew my 16 week of fetus had downs…. YES. But… if I did not know and I gave birth to a child who had a disability or genetic fault or was ugly or whatever….. would I love my child… YES. Would I then defend this child from being hurt by others by hurtful comments… most probably YES.
If you had known at say 16 weeks of pregnancy that your child had DS would you have terminated. Think about this question not as the person who Finn is now but as the family of five children and a baby yet to be. I think the answer for many people may have been different before meeting their baby… but of course one their baby is born you would love them no matter what and defend them to the ends of the earth.
Finn is a beautiful human being. You are very loving parents and he has a bunch of loving older siblings. He has all the love and support he needs.. he is very lucky.. .and so are you to have him in your lives.
Sam:
“If you had known at say 16 weeks of pregnancy that your child had DS would you have terminated. Think about this question not as the person who Finn is now but as the family of five children and a baby yet to be.”
No, I don’t at all believe I would have terminated. For many reasons. While I am firmly in favor of women being in control of their own bodies and reproductive fates, I have never seen myself personally as someone who could/would terminate a pregnancy except under extreme circumstances (such as rape, or a baby that absolutely could not survive). For me personally, a baby conceived from a loving relationship, even if the pregnancy is unplanned (as were my last two pregnancies), and being well within the financial and emotional and logistical means to raise another baby (whether planned or unplanned) – no, I don’t think I would have terminated had I found out at 16 weeks that I was carrying a baby with Ds. At 16 weeks I was already very, very attached to all of my babies, and was already feeling movement by then. Would I have been shocked, upset, scared to find out at 16 weeks that I was carrying a baby with Ds? Of course. Those feelings manifest whether you find out before or after the baby is born. Am I glad I was never faced with the decision? Yes. Even though I really, really don’t believe I would have terminated, I’m glad I wasn’t faced with doctors painting a bleak picture of my “fetus’s” future for me and very possibly encouraging me to terminate.
You say, “I think the answer for many people may have been different before meeting their baby.” This is so true. And in my mind, therein lies the heart of the issue. For many people, it’s perhaps not so terribly hard to do away with a baby they’ve never met, and it seems such a terrible shame to me. It takes having a child with Ds to understand that it’s not terrible, it’s not the sad, suffering existence that people think it is, and that it’s worth it, so worth it.
Sam – while I am not entirely sure if I have understood your comments correctly – it seems to me in part that you are suggesting that as Finn and/or Lisa and/or her family are going to hear negative comments etc throughout Finn’s life they should accept this and not try and be too offended by it. While in part I agree that there are always going to be cruel people and we need to develop a healthy mechanism to deal with this sort of thing, I think there is the ability for us as a society to change if we want to. And it is people like Lisa who continue to advocate that we change that will be the impetus that causes that change. If we all sat back and said “oh well there’s nasty people out there and I shouldn’t take it personally” then people would still probably be calling others nigger or fag or wog or pom or ranga or whatever. (Incidentally did you notice that when people began calling our PM a ranga a lot of people started coming out and saying we shouldn’t be so disrespectful?) But if we all make an effort to change our behaviour then those words can be slowly removed from daily speech.
I personally had not heard the word “retard” used for probably at least 10 years until only last week. And as I work in healthcare with a wide range of people I was both surprised and a little proud that I thought perhaps it had been stamped out from day to day conversation. But when doing nights a week ago I was actually shocked when one of the night nurses (who I like) suddenly used the term. At first I was so taken aback that I didn’t say anything. I then felt bad that I didn’t say something – especially as Lisa had promoted the Say No to the R word day only recently – but when the nurse used it again about 30 seconds later – I said “you really should’t use that word” and she immediately said “I know sorry”. She almost used it again the next night but I saw her visibly stop herself. I’m glad I said something and I do believe that perhaps that might change her behaviour or at least make her think about what she’s saying.
Now you may not have meant quite what I have thought you meant (and if so I’m sorry) but perhaps if we all were a little more assertive then not only wouldn’t there be the use of such negative language but people wouldn’t look the other way when children were being bullied, or let their friends drive when drunk, or allow men to hit their wives and get away with it or any number of other problems that we all know goes on and yet people are too afraid to speak out.
Those of us who aren’t always able to have the courage to say the things that need to be said should be thanking Lisa for having the guts to speak out against prejudice and speak up for those unable to defend themselves!
Thank you for this.