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?

18 Comments on “Heartsick”

  1. Jennifer Varanini Sanchez
    March 8, 2011 at 5:30 pm #

    The situation is Eastern Europe is that amniocentesis is not available or if it is it is too expensive and if they get access to amnio or better prenatal screening they will absolutely terminate their pregnancies if given a less than perfect prognosis for their child…I found this out while in EE. So…the situation is just as grave over there as it is here.

  2. esther
    March 9, 2011 at 1:24 am #

    as you know, lisa, i am from the same country as your friend Zsuzsana…and i may have mentioned to you that before coming to the united states, i have never seen a child with down syndrome (and truly, i am very very well-travelled!)…there is an institution close to where i used to live in the city and that is where the children end up…and they are simply not taken out in public…i would never run into a child with ds at the grocery store, like i do at my local one, or swim class that my boys attend with the little girl…

  3. Stephanie
    March 9, 2011 at 7:30 am #

    I hate to say it but I don’t know that the world will ever understand. We’re becoming too vain and superficial and just can’t be bothered with “imperfections”. Sure there will continue to be women who refuse prenatal testing or terminations, but I really don’t see the termination rate going down overall.

  4. djgranny
    March 9, 2011 at 4:35 pm #

    Dear Heartsick, It brought tears to my eyes when I read your blog where your child’s grandmother was calling him that. I am a proud mother of 3 kids of my own, plus 2 step-kids (which I love & have a great relationship with), plus 7 grandkids and 1 great-grandchild. My step-son has a mental disability, which it is hard to tell because both his dad & mom put him in everything they could find, plus teaching him also. He now has a full time job working for the city and he got to go across the stage like all other students for his diploma. My daughter had 2 girls which when she was carrying them told her that both would have downs syndrome. Breann her 1st did not, but her 2nd Katie did. I let everyone I know that she is my pride and my HERO. they can learn so much & are the happiest, loving and sweetest kids you will ever know. Myself and our whole family would not take nothing in the world for her or Kent (my step-son). And if anyone ever said anything like that to either of them, it would almost create a war. So I am so sorry that you & your son had to hear that. In a nice way someone needs to let her know that that is unacceptable.DJGRANNY

  5. Casey
    March 9, 2011 at 6:51 pm #

    “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.”

    Honestly, the hardest part about being a parent is knowing that the world isn’t really accepting of ANYONE anymore. I won’t pretend to be in your situation because I am not. However, I honestly believe that society isn’t targeting one population with their ignorance and hate. People are very mean, very opinionated and very vocal these days.

  6. Anna Alexandrova
    March 10, 2011 at 11:23 pm #

    Keep blogging, Lisa, you are having an effect, I attest to that! One mind at a time…

  7. Girl Down Under
    March 12, 2011 at 10:57 pm #

    I don’t think it’s necessarily trying to eliminate the variances, with some variations on the human form, it presents a much more challenging life for the person themselves. Whilst with milder forms of different conditions I’d daresay it’s easier to say “how could they eliminate this”, as opposed to being the parent of a child who suffers daily, trapped in their own body (that’s even if they’re aware of much of the world around them), I’d be surprised if it didn’t cross their minds occasionally “if only they didn’t have to suffer …”
    Some children have to go through many surgeries in their life, just so they can live, let alone if they can even function in their own lives. It can be very taxing on the person it’s happening to, and their families.

    • Lisa
      March 13, 2011 at 12:38 am #

      @ Girl Down Under . . . right, but that’s typically not at all the case with Down syndrome. Although there are certain health issues often associated with Down syndrome, most of those health issues are very treatable nowadays, and plenty of people with Down syndrome are extremely healthy. People with Down syndrome are not “trapped in their own bodies,” or unaware of the world around them. They are developmentally impaired, but still completely able to live full, meaningful lives. People with Down syndrome are not “suffering.”

      • Girl Down Under
        March 14, 2011 at 2:45 am #

        Right, which is why I said ‘some’ variations. Yes, some people with Down Syndrome have a very good life, but there are some that face great challenges, some that can’t be overcome.

        I think, if it could be guaranteed when facing the probability of having a DS baby, that it would be “mild” or they wouldn’t be significantly impaired, then more people may choose not to terminate. However I think it’s the risk, the possibility, that you may have a baby that is “severe”, and has the child (which will grow to be an adult) highly dependent on first their parents, then other people (that will need to be found after the parents are no longer able), it’s that risk that drives people to seriously consider, and in the relevant cases, follow through, with termination.

      • Lisa
        March 14, 2011 at 3:14 am #

        Hmmm. I’m very curious where your viewpoint comes from. Are you the parent of a child with Ds? Do you personally know children/people with Ds? Or have you just read things? I certainly don’t deny that the challenges faced by people with Ds – and their families – vary; some are “mild” and some are “severe.” Who gets to be the judge, though, on what qualifies as a meaningful life? I mean, clearly, WE do, because we do in fact have the power to terminate these pregnancies, to deem these lives not worth continuing. That doesn’t make it right, in my mind at least.

        You say, “I think, if it could be guaranteed when facing the probability of having a DS baby, that it would be “mild” or they wouldn’t be significantly impaired, then more people may choose not to terminate. However I think it’s the risk, the possibility, that you may have a baby that is “severe”, and has the child (which will grow to be an adult) highly dependent on first their parents, then other people (that will need to be found after the parents are no longer able), it’s that risk that drives people to seriously consider, and in the relevant cases, follow through, with termination.” Here’s the thing: there are no guarantees with ANY child. None. Zero. Zilch. It’s just that there are tests that are able to detect Down syndrome, and so we’ve decided since we can detect it, why not make our lives easier and do away with it? What about all the babies that are born healthy and “normal” but some terrible fate befalls them later? Some freak accident or terrible illness that leaves them brain injured? Are those lives worth preserving? If there were some magic test that could see into the future and detect every baby who would later end up with autism, or brain injured, or an alcoholic, or a wife or child abuser, or a homosexual, or bipolar . . . and the list goes on and on. Are those lives meaningful? Are they worthy of preserving, embracing, celebrating? There are no tests to detect the vast majority of things that make people different, that inflict challenges on people and their families. But there are tests that detect Down syndrome. And for some reason, a whole lot of people seem to think it’s the most terrible thing that could befall a pair of expectant parents.

        I disagree with you. I don’t think it’s the risk of severity that drives people to termination of these pregnancies. I think it’s our culture’s quest for perfection, and I think generally speaking, woman are encouraged to undergo the whole gamut of prenatal screenings and, in fact, are made to feel irresponsible if they decline those screenings. And when an anomaly like Down syndrome is detected, a bleak, outdated, and not entirely accurate picture of the baby’s life is painted for the parents, and termination is encouraged by doctors.

        I’m not unrealistic. I am well aware that chances are good that Finn will be dependent on us – his parents and siblings – his whole life. Is he “high-functioning” and does that therefore lessen the challenges to our family? I have no idea if he’s “high-functioning.” He’s pretty darned delayed. But I can tell you that it’s not an awful existence. He’s a happy, well-loved child who has added to our family immeasurably. I support women’s right to choose their own reproductive path, including the right to terminate unwanted pregnancies. I would, however, like very much to see better choices being made. It saddens me very, very deeply to know that so many people think that a life like Finn’s should be nipped in the bud.

  8. Girl Down Under
    March 14, 2011 at 5:21 am #

    What I have in mind with my comments, is “severe” cases of Down Syndrome, and also other ailements (sorry to use that word, can’t think of a better one at the minute), where the person has very minimal awareness of their world around them.
    I think when some people choose to terminate, when they learn that their child is already behind the 8-ball, they take into further consideration the possibility that the child may be significantly delayed. I’m sure others also take into consideration their life, and their other children’s lives (if applicable) and consider what long term effect introducing a child with a disadvantage would have on them. Whilst you can advocate all for a child’s right to be born, where do you take into consideration the lives of others it will significantly affect and how it has the potential to sidetrack, or even derail the life that they are living (again, talking more in the “severe” cases, which can’t always be identified at birth, I’m talking about the risk being weighed up before birth). Without a doubt, the children who are born positively affect the lives around them, but in the cases that are more challenging for their families to support, I wonder how many parents or siblings have a deep dark wish that *their* lives hadn’t taken that turn.
    re: accidents happening to people in the future, some of those lives aren’t “worth” maintaining, because the person is getting very little out of life, perhaps even if they’re aware, feel more frustrated *because* they know what life “was”, but those thoughts and questions tend to go to the debate of euthenasia, and a person’s right to choose whether or not they live with what they have, or not.

    Do you know (just out of curiosity) if the genetic counselling is the same across the US, with the suggestion/encouragement of termination? As you may guess from my pseudonym, I’m in Australia, and I’ve never been struck by that quest for “perfection” that you’ve mentioned, so I’m wondering if it’s an American cultural feature, or perhaps just a SoCal cultural issue.

    • Lisa
      March 14, 2011 at 4:08 pm #

      No, I don’t think it’s just a “SoCal” or American cultural feature, this “quest for perfection.” Whether you realize it or not, you’re demonstrating it yourself by expressing that certain lives with certain limitations are not lives worth living.

      Again, I am very curious exactly what your exposure to Down syndrome has been. These “severe” cases you refer to, where the person “has minimal awareness of their surroundings,” this is not a state of being commonly associated with Down syndrome. Yes, everyone with Down syndrome has delays and impairments, some more significant than others. There is no way to identify at birth – or prenatally – ANYBODY’S potential – Down syndrome or not. I guess that’s my point. I, personally, am sympathetic to women who are faced with an unintended pregnancy and who, for whatever reason, decide that they are not in a position to follow through with the pregnancy that they never planned for. But for people who willingly get pregnant but who are only willing to accept “healthy,” “normal” children because they don’t want to face the challenges and burdens an “atypical” child may present? Yeah, that’s where I start thinking that there’s something wrong.

      Anyway, this is clearly an issue that you and I disagree on (and I’m curious how you found my blog and why you’re reading it; usually people seek out blogs that they can relate to), and I’m trying very hard not to take this personally, though it’s difficult because whether you mean to or not, you’re talking about my child. Yes, he is delayed – less so than some and more so than others. Yes, his delays and impairments present and will continue to present challenges to our family that we didn’t anticipate when we decided to have another baby. Yes, he will very likely be dependent to some degree for the rest of his life. Even in the face of all that, however, I still believe with every fiber of my being that his life is meaningful and worth living, and it saddens me to know that there are people who don’t think so.

      • Girl Down Under
        March 16, 2011 at 4:05 am #

        Your questioning my exposure to Down Syndrome, brings to mind the question whether or not you’re interested in discussing Down Syndrome with everyone, or only those who find themselves directly involved with someone.
        I myself am in a unique family situation, and I understand the point of view of not believing “everyone” understands the experiences I go through unless they’ve lived it themselves, but that’s not to say that someone who *hasn’t* had the experiences, doesn’t have something of value to offer.

        I am very sorry if you have taken offence or been hurt by my suggested opinions, that most certainly was not the intent. As I’ve mentioned a number of times now, I’m mostly talking with severe impairments in mind, not only associated with DS, but other issues which can be detected prenatally as well. It is clearly evident that Finn would not fall into this category.
        With so many blogs being linked and promoted on the web these days you can come across some very interesting ones. Yours is such a one and I can guarantee you, you have made a positive change to people and their attitudes towards Down Syndrome through the chronicling of your journey.

      • Lisa
        March 16, 2011 at 9:39 pm #

        I appreciate your comments and perspective; obviously your thoughts are shared by many others. Am I willing to discuss Down syndrome with everyone? I’d like to think so, as long as the discussion is born out of good intentions. And I don’t at all believe that you came here with the intention of being mean or hurtful. It’s not so much that I’ve been offended by you personally, it’s just difficult as a parent in my position to have to accept that, on a societal level, my child and people like him are vastly misunderstood and generally not embraced or accepted. I do appreciate your honesty. My questioning your exposure to Down syndrome is just a point of curiosity; I’m just wondering how you came to the conclusions you’ve come to, that’s all.

        Anyway, thank you for being respectful, I do appreciate it.

  9. Jennifer Varanini Sanchez
    March 14, 2011 at 7:21 pm #

    Great debate Lisa and I always love your point of view on things. I have to ask you (because I too struggle with this) and I know this debate will NEVER go away and I believe in a woman’s right to choose because who am I to make a decision for any other person but I’m personally very pro-life when it comes to pregnancy because for ME a baby is a baby whether in my belly or not and once life is formed I believe I have a responsibility to that child/baby whether it be to raise them or give them up for adoption (if it was unplanned, etc). But in regards to the debate about people terminating an unplanned pregnancy vs a woman terminating a planned pregnancy with a DS diagnosis….isn’t it all the same thing….eliminating a baby just because it’s an inconvenience? I would love to hear the argument on this. Because I feel it gets a little cloudy…how can we be ok with someone choosing to terminate a baby due to inconvenience or timing but then be angry or upset or confused when a woman chooses to terminate a baby with DS?
    So many other thoughts floating around in my head as I try to understand even for myself what I think about the whole subject of abortion. In the end, I can’t make a choice for another woman but I firmly believe in women being educated and informed so that they make choices based on truths not myths or stereotypes. And for those women faced with unplanned pregnancies, I believe that the answer there lies in better education and information and availability about birth control and abstinence and realizing there are natural consequences to your actions and I realize this is often the problem with today’s world (not enough education, availability of birth control, etc) but is abortion really the answer? Now pregnancy due to rape…oh that is the hardest for me personally to think about…such an evil act that could lead to an innocent life being created….I can’t imagine. And again….at the end of the day….a woman should have the right to choose and they have to live with their own choices.
    And then I have this argument in my head of YES….we all have or should have the right to choose but does that make it “right”? I mean anyone of one us has the choice to abuse, hurt, kill, steal, lie etc. but does that make it right? And do we as a society or as a group of people need to create laws and rules that protect us? I mean we do have laws against killing people and stealing from people and that’s a good thing but then again it doesn’t stop these people from doing it.
    Ok…I really am all over the map now…I really find this topic fascinating and never ending…

    • Lisa
      March 14, 2011 at 8:17 pm #

      Jen, thanks for your thoughts. I hope I didn’t come across the wrong way – I absolutely do NOT think that abortion is right or good. I do think that it needs to remain a viable, safe choice for women, however, because I think a society in which women are stripped of power over their own bodies is a dangerous one.

      I’ve been pregnant five times and have given birth to six children. I’ve had ultrasounds that showed tiny hearts beating as early as six weeks gestation. I’m like you in that regard – personally, it’s a baby worthy of life as soon as its formed. Terminating a pregnancy is not something I could ever see myself doing.

      I guess the difference in my mind between being able to understand a little better terminating an unplanned/unintended pregnancy where the woman is just not in a position to raise ANY baby, and feeling that it’s not okay to terminate a pregnancy where Ds has been diagnosed is that there is certainly some discrimination there, isn’t there – to put it in very simple terms. I can understand not being in a position to have ANY baby – but to willingly get pregnant, to make the choice to become a parent (even if that means an unplanned pregnancy due to carelessness when you ARE in a position to have a baby – my last two pregnancies were surprises, but obviously as two mature adults, we knew the risks we were taking by not proactively preventing pregnancy), and then to decide, “I want a baby, but only a baby that meets certain standards . . .” yeah, that seems like a whole other level of wrong. And obviously I take it personally – to know that 90+% of people out there would look at Finn and say “he never should have been born,” or “glad he’s not mine!” or whatever.

      Anyway, these are just my personal feelings. I certainly don’t claim to be right. These are things everyone should think about. My feeling is, if you want to have a baby, if you choose to have a baby, then you need to be aware that no child – even the ones that pass all the prenatal screenings with flying colors! – come with guarantees. People who are willing to have babies need to be willing to take what they get. Weeding out differences, putting so much focus on convenience and vanity and achievement – it’s not making the world a better place.

      And I agree with you 100% – the key is education. People need to be educated about the consequences of irresponsible behavior, about birth control, etc. And people need to be educated that Down syndrome is not some horrible affliction that makes life not worth living.

      • Jennifer Varanini Sanchez
        March 15, 2011 at 2:27 am #

        Then we are on the SAME page my friend :)! Thanks for sharing your thoughts!

  10. Brandie
    March 14, 2011 at 8:39 pm #

    Oh my. I don’t ever think it is my place to decide whose life is worth while. There are NO guarantees when you have a child that they will grow up to be happy and healthy. I have a family member who has bi-polar depression and told me she would have terminated a pregnancy if she knew the child would be disabled. She is a very insecure person and sadly, will never have a life as satisfying as my daughter’s who has DS.

    Life is full of hard and easy times, no matter if you are disabled or not. Joy and sadness do not discriminate! My daughter’s life may appear harder to the rest of us, but to her it is just ordinary. I know people with a variety challenges, some that do cause pain and suffering. I think they would still agree that their life is better than being terminated.

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