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Posts Tagged ‘Down syndrome’

Over 18 years ago, I found out through a blood test and amniocentesis that my second child had Down syndrome. Back then, there wasn’t much in the way of the Web, so I went to the library. I found one book that talked a bit about children with DS and had a few pictures that weren’t really flattering. I didn’t feel I had much to turn to in the way of sweet stories, adorable photos of adorable kids and babies, support systems, etc.

That did start changing when I had her. I found out about Band of Angels, which at the time was creating gorgeous calendars featuring models with DS shot in lovely settings. We were officially entered into “early intervention” programs where we lived and she got help with physical and occupational and speech therapy and so on. I got involved in a local Arc.

But for so long, my daughter was little, a child. She was cute, she was the poster girl for the UCP Center’s yearly fundraising campaign. She was a doll, just lovable and outgoing and friendly.

And it’s kinda funny, because for a while now, there’s been more online awareness of younger children with Down syndrome. There are plenty of groups and cute photos that circle social media. But not a whole lot in the way of adults getting attention. (But now there is the A&E reality show “Born This Way,” that follows young adults with DS living their lives, so that is cool progress.)

In short, it was relatively “easy” to have a child with DS. It wasn’t a whole lot different than raising my other children.

She had a great time this spring playing in a local softball league for people with disabilities. SO cool.

She had a great time this spring playing in a local softball league for people with disabilities. SO cool.

What started a change was her adolescence. She hit 14 and started puberty. She got a period. She learned about wearing pads (and not to talk about them all the time in public). She became a teenager. The moodiness that’s hard to talk through, as I have done with my other teen girls; the periods; the observations about cute boys or about seeing her sister or friends at school dating or holding hands or kissing … it wasn’t something I was really prepared for. It wasn’t so “cute” a time as when the DS kids are younger and still sporting the adorableness of babies and preschoolers. So there’s not as many pictures, not as many inspirational stories circulating Facebook and the like. For me, my new situation parenting a DS teen was kind of uncharted territory.

And that’s become even more so now that she is 18. She’s legally an adult today. But unlike my older adult daughter, she doesn’t have a driver’s license, can’t help out driving herself and younger sisters around; doesn’t run errands for me; doesn’t babysit. She needs a bit of babysitting/supervision herself still. She’s emotionally and mentally really more like a 7- or 8-year-old in a lot of respects. But she’s bigger and developed and has a menstrual cycle. It’s harder to discipline her. She’s moody and just mumbles loudly or trounces off to her room and slams the door if I try to tell her, gently and kindly, that she should be nicer in how she speaks to her 9-year-old sister, for instance. I can’t really talk her through things.

In short, it’s not so cute anymore. It’s NOT not that different from parenting my other children, like when she was little. Don’t get me wrong: she is bright in many ways and really helpful and can be incredibly sweet. She’s pretty great. But it’s now really evident that she’s different. She has Down syndrome, and it’s obvious.

We’re getting her a state official I.D., not a driver’s license. We’re talking about some programs that she can do post-high school, next year. We’re starting to think more about what kinds of things she may be good at, what she will enjoy, for work-type opportunities, for socializing, for living arrangements. This is a whole new ballgame.

That story a parent wrote a few decades ago about embracing a new reality called “Welcome to Holland” seems to be hitting me now. The writer compared having a child with a disability as planning (during a pregnancy) on going on a “fabulous trip to Italy.” But then the new reality hits, and you’re going to Holland instead. In the past 18 years, especially, I’d say, the first 12 or 14, I was kind of going to Holland with Marissa, but I still had plenty of experience in Italy, with my other three children, for sure. And then with Marissa, I was kind of in Little Italy in Holland. Now, though, that feeling of visiting Italy at least through restaurants or guidebooks or seeing pictures on the Internet has dropped away. It’s hit me that I’m really in Holland.

It’s OK, just as the story goes. But I didn’t see it coming. Or I kind of did but now it’s hitting me. And I’m going through another adjustment period. And there’s not a lot in the way of cool or cutesy memes or stories or photos going around online — but, like I said, there is “Born This Way,” so that’s a good step in the right direction. Maybe I’ll start seeing more of that. And my sharing my experiences will prompt others to share. Or I’ll just start finding others’ stories more, seeing them amongst all the other stuff that’s online.

So here I am, my cruise ship permanently docked in Holland, at least with one of my children. I’ve got ships in Italy with the other three. It can be jarring a lot of the time to switch between the two countries. But I’ll make it work, and it’s a new adventure.

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It’s difficult for me as a mother, period, and as a fellow mother of a daughter with Down syndrome, to read the words of Hallie Levine, who says she would have aborted her daughter during her pregnancy if she’d had the diagnosis then. Sure, she says now she’s grateful she didn’t, but she asserts she should have been able to and that others should be able to do so as well. Aside from all my other feelings on the subject (and I have many), I’m going to focus on one phrase she used: “I never signed up for this.”

Having heard a man whose wife is now paralyzed from the midsection down say the same thing in regards to being married, and other people in tough situations make the same remark, it strikes me that we live in a society where we really feel we should only face things we’ve agreed to. We’re so focused on freedom of choice, on contracts, on knowing so much about outcomes and possibilities, that we feel we can and do control our lives.

Assuming some equal opportunity (and that’s a topic for another blog post as well), let’s say we all get to choose the level of education we attain and what we study. We get to choose our line of work. We choose our marriage partner, if we marry. We choose how many children we have and how to raise them. We plan for and choose when to retire, and what to do in retirement.

We “sign up for” these things. We sign on the dotted line for many of them. Life is a series of contracts that we choose to accept or deny. And we’ve written escape clauses into the contracts. Many of us spend years choosing whom to marry, and when to do it, but even a few years into the contractual relationship, divorce is readily available to let us out of that signup. Pregnancy? We can avert it with birth control, we can terminate with abortion.

But how about we step back a moment and consider that life is not really within our control. It’s not just one contract after another. And when events in our era are finalized in this manner, stamped with a legal seal of approval, they often get boiled down to simple terms that don’t fully encapsulate the “real deal.”

Life is messy. It’s complicated. It involves all kinds of unpleasant surprises that we tend to think of as happening to “other people.” Even aging and death seem distant to us today, that somehow they’ll never happen to us. But they do. And the older we get, the more we experience, the more we realize that death will happen. Aging will happen. We’ll get sick, we’ll be limited in some way physically. These same things will happen to our spouses, and eventually our children.

Levine says she wouldn’t want to see someone else “forced into” her situation. But simply being alive forces us into all kinds of situations we’d rather ignore or pretend don’t exist or won’t happen to us. Choosing to get married leads us down a path in which we may very well have to care for a spouse who becomes disabled physically or loses his memory, among a host of other scary possibilities. Choosing to have children leads us down a path in which we may care for a child with a physical or intellectual disability or mental illness or any number of possibilities we never envisioned for ourselves. But those paths are real.

I don’t deny that it can be overwhelming at times to parent a child with Down syndrome. That’s just one of those “scary possibilities” I know firsthand about. I grieved for a few days when I received the results of my amniocentesis. It was an experience I didn’t count on. It was a loss, the loss of a “typical” child-rearing experience I had counted on. But life presented me this path, and I’m on it.

I don’t have any idea what other challenges lie ahead of me on life’s path, as a person, as a wife, as a mother. I won’t deny that I’ll grieve, be scared, be overwhelmed, be frustrated … any number of normal reactions. And I definitely won’t “sign up for” any of these challenges. But that’s life. And we’re all in it together. We can’t (and, yes, while many disagree with me, I heartily say “shouldn’t” when it comes to aborting in most cases) prevent these difficulties. We can learn from them, do our best to deal with them, and support each other through them. I hate to see others go through tough times, but I’ll eagerly “sign up” to lend a shoulder to cry on, a hand to help.

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There are days I don’t think much about raising a child with a disability, and there are others that it seems overwhelming. I’ve written about a few of each of these kinds of days, I think, but today’s is going to be in the latter camp.

It’s funny: most posts I see online now that address Down syndrome are those “they are very special” or “they have impacted our family and others,”  etc. etc., inspirational kind. And they’re generally lovely and inspirational. At the same time, there are certain realities that come in between all that (just as with all child-rearing: the highlights are worth writing about, the so-crazy-they’re-funny-in-retrospect moments are worth a blog post, but the everyday stuff in between gets glossed over). In my case, as the mother of a 15-year-old daughter with Down syndrome, I have learned that there can be many, many moments of frustration and some embarrassment.

Here’s the thing: people with mental and emotional disabilities have a much more difficult time learning the social niceties. We take for granted that all of us after a pretty young age “get” the “rules” of appropriate behavior in our particular culture. But those who don’t “get” them stand out pretty starkly. Toddlers are excused from these rules, though their parents may smile ruefully. And, yes, people with obvious disabilities are kind of “excused” from the rules as well, or at least those who are mostly kind and observant are fairly understanding and downplay whatever’s said or done. But a toddler learns quickly and grows out of that stage and becomes another person who expects others to follow the rules.

My teen hasn’t grown out of that stage. She’s 15 now and still kisses people when she shouldn’t, pokes their belly buttons or other body parts, and shares all kinds of information that we deem to be private. Since she’s a young woman now, she has been menstruating for about a year or year and a half. That means we had to deal with her grasping the concept that she would bleed on a regular basis and it isn’t something to worry about. It also means we get to deal with her fluctuating hormones and moodiness, which isn’t quite as easy to explain or help her understand. And it means that she will say to anyone that “she has her pad.” Aiiieee! Whereas most teen girls would be mortified for anyone to know that they are having their period, even though chances are a quarter of the females around them are experiencing the same thing, mine is perfectly fine with declaring that information in any mixed company.

Here's the 17-year-old with the 15-year-old.

Here’s the patient older sister with the 15-year-old.

Then there’s the issue of boys and girls interacting. She’s at an age where her peers naturally are fixated on their relationships with the opposite sex. Her older sister and our exchange student, both older than she, are dating and sometimes kissing their boyfriends. All cute and sweet and perfectly innocent. Unfortunately, it’s another new and interesting phenomenon that Marissa has to talk about. She shared in Sunday School the other day to the whole class and the teacher that her sister had kissed her boyfriend. Older sister was there, wasn’t embarrassed about the information being known, but that it was being shared publicly at church. Just not the place or time, as most of the rest of us know per “the rules.”

Another issue: 15-year-old either insinuates herself between sister-and-boyfriend and exchange-student-and-boyfriend when they’re sitting or standing next to each other and possibly holding hands, OR she tries to push the two apart, even smacking the guy around a bit. Gah! I’m just hearing about all this secondhand, mind you; my 17-year-old is the kind and patient soul who is having to experience it firsthand regularly.

The latest: today, the elementary school office called to tell me my 6-year-old told a classmate a couple of days ago that she “has sex after school with her boyfriend.”

SILENCE.

I think you can imagine how appalled I was to hear that. First, I don’t think the child has any idea what she’s talking about. Second, we are comfortable with the topic in the right conditions, but this isn’t one of them. I then found out that the youngest said she’d heard it from her sister. That would be the 15-year-old. All I can guess at this point is that she’s heard kids at school talk about the topic in some fashion, because high school students do talk. She somehow then shared that topic with the youngest, and the recipe for an embarrassing and frustrating incident was created.

We’ll be having a chat with the 15-year-old and 6-year-old to talk again about what’s appropriate to say in public. The youngest was told this briefly by the lady at school.

Here’s the problem: the 6-year-old probably won’t talk about that again. But the older one will. With all of the above incidents, we have said OVER AND OVER and OVER … AND OVER … and over… you get the idea… “Don’t say ________ around other people.” Or “don’t touch other people. Hug and kiss your family and maybe hug some people, but DON’T TOUCH THEIR BODY PARTS.” Or “don’t bother Sister and Exchange Student while they’re sitting/standing with their boyfriends.” It’s not that we’ve avoided the topics or just said these things a few times. We must mention them several times a week.

I just don’t know if it’ll ever sink in.

Nope, these are the things we don’t read about in the sweet, inspirational blog posts or the news stories about a girl with Down syndrome being crowned prom queen or the boy with Down’s being allowed to make a touchdown in the football game. Those moments are ones their parents will cherish forever, I am sure. But the thousand, million, other moments of real life are likely much like the ones I’ve just chronicled.

Parenting is tough. It’s rewarding. And parenting a child with a disability is even tougher and sometimes even more rewarding. I think I’ve mentioned before that it’s getting more interesting and challenging the older my daughter gets. I guess we’ll see just how much more so, but I’m hoping the teen years will be the trickiest. We’ll just have to wait and see.

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They say that when you have a child with a disability, you must grieve the loss of the “normal” child you expected to have. I did this for a few days when I first found out through amniocentesis that my unborn baby would have Down syndrome. After that, I was as eager as any mother to give birth to a new baby. And her birth day was lovely and exciting and “normal.”

As I’ve adjusted expectations over the years and figured out at different stages what she has needed to aid her in developing and growing and achieving her potential, I’ve mostly rolled with the punches. But even as she walked and talked much later than my older daughter and did lots of things her very own way and at her own speed, I was mostly unconcerned. And she was so CUTE, and everyone she was around adored her.

Here she is at the high school, just a few days after starting.

Here she is at the high school, just a few days after starting.

I didn’t anticipate the interesting dilemmas that would face me as she reached adolescence and age out of elementary school. I certainly hadn’t given much thought to puberty (wha??!). Now, as of a few weeks ago, she is a freshman in high school. Just having her enter high school gave me a few little late aftershocks of grief; my oldest is a senior, and I’m right in the midst of being thrilled and excited for her and everything that’s ahead while simultaneously being struck smack in the chest with loss knowing she’ll be leaving home. I’m reflecting on the weeks three years ago, seemingly just yesterday, when SHE started high school and had all these new adventures and experiences awaiting her. How could my talented, sweet, fun little bird now be so close to flying out of our cozy nest?

So you see the stark contrast in experiences, in feelings, I’m facing as my second-born enters high school. She has a very different future ahead of her, not bad, but just different. It’s one I am unsure of, that is not nearly as clear as that of my oldest, because it’s not a path I’ve already forged myself.

Yesterday I had the yearly IEP (individualized education plan) meeting with the teachers and other interested parties at the school. But this time felt so different than every single IEP I’ve attended for the past 15 years. I was struck again by how far behind she is academically, that given her abilities, she simply will not graduate high school with a diploma, will not master algebra, even, which I’m informed is the “lowest” math class they have available at the high school. We still struggle with simple addition. But that wasn’t too surprising; I hadn’t really expected her to “graduate;” she can receive a certificate of completion, though, and that was an outcome I was already aware of.

No, what cut to the core was hearing that the classes she’s in right now are probably not where she needs to be, not because they’re too difficult academically (even though they’re the really basic versions geared for those who need extra help) but because they still are not attended by her true peers. The kids in these classes have struggles, but they perceive my sweet little girl as weaker, as a target, and they tease her. She’s on the outside. And I HAD NO IDEA. Sure, it’s only a few weeks in, and I imagine the teachers were just waiting to broach this topic at this IEP meeting, but knowing that my daughter has been treated just a little badly by classmates BROKE MY HEART.

(I did find out about another option for her class-wise that will probably be the better place for her when it comes to both academics and peers/potential friends, and I am going to look into it, visit, probably switch her, but that’s another story.)

I got through the rest of that meeting, signed paperwork, listened some more, asked questions, and considered, but I was really just hoping it would end so I could leave and not burst into tears there in the classroom. I came home and grieved for a few hours. Even as my oldest went to her band rehearsal and attended an open house on college options and scholarships and did all the kinds of things I did 25 years ago myself, I grieved that my second-born would not do these same things.

Did I think I’d already accepted that outcome? Yes, indeed. But it just started becoming reality, and it was such a stark contrast. I still am unsure of exactly what my daughter will do; she probably will eventually leave home and live on her own, with others in an apartment or in a group place that’s fun and friendly and warm; she will most likely have a job that’s simple for her to do that she enjoys. But it’s different. And will she always be able to find a place where she has peers, where she can make friends who are like her? Because right now that hasn’t been happening these past weeks. Will I miss something again in the future where she’s being teased or not fitting in? I can’t bear to think of it.

Sometimes grief comes anew and we must revisit what we thought we’d already “dealt with.” We must adjust expectations again and face the reality we could only see through the hazy, murky lens of an uncertain future. And it’s OK to do so. As I grieve, I know I will come out of it with clearer vision and a renewed determination to help forge a happy, workable life for my second child. No matter what, I do know that she will be happy and will make others around her happy as well. She’s already done that for 15 years.

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For a long time, I was young enough that I could still think “that (fill in the blank with anything particularly tough or tragic) can’t happen to me.” Then, as I got older, got married, and started having children, those things did start happening, either to me or to someone close to me, so that lovely delusion of the young went “poof.” Bubble popped.

Marissa babyI definitely never expected to be “one of those people” who had a child with Down syndrome. I knew a few people over the years, through church congregations actually, who had a youngster or teen with Down’s in their family, and I really, really never expected to be in that position myself. It was something that happened to other people. Only when I was pregnant with my second child and I picked up the newly delivered copy of the Reader’s Digest that featured the story of Alabama football coach Gene Stallings having a son, John Mark, with Down’s that it hit me — hard — that I could have a child with Down’s too. And sure enough, soon after I had blood work results indicate an amniocentesis would be useful, which confirmed my gut feeling. Yes, I grieved. I was worried, I was sad, I was surprised. But soon after, I accepted this new reality, and, well, you can read a little bit more about my wonderful teen on some other posts.

Dad's camera photos Oct 09 041I also thought my parents would live forever. Only other people’s parents died. When my husband’s mother died just a year after our first child was born, I was sad for my husband and myself, but I still thought it would be a VERY VERY VERY LONG TIME before my parents left this life. It still was 12 years later that I had to go through that heart-rending experience, but it was still far, far earlier than I’d expected to lose one of my parents. My dad was only 71 at the time and very healthy, though a bit of a hypochondriac (yeah, it’s true, Dad.). Now I know just how fragile and unexpected life can be.

This year, a family member ended up paralyzed from the mid-torso down after a surgery. That’s the kind of event I have certainly never pictured happening to me, and to have it happen to someone I care about is something that weighs on my mind. My thoughts are with her so much. Sure, you read about these kinds of things, but … having it happen to someone close is still unthinkable. Until it happens, and it’s always in your thoughts.

I’ve now had friends lose children, a very particular kind of heartbreak. We lost the bishop of our ward, our local church congregation, three years ago this month, to a fatal shooting. It was headline-grabbing news, the kind that strikes your heart when you read about it happening to strangers. Having it happen in your own church building, to someone you know, to a family that’s extraordinary … well, it strikes your heart and stays there permanently.

Yep, here I am in my 40s and I’ve left behind those days of “it happens to other people.” Whatever “it” is, it can happen to me, my family, my friends. Life is fragile. It’s unpredictable. It can bring tragedy and pain and grief. Yet, at the same time, every day of life is also a miracle. It can bring refreshing rain or warming sunshine. It can even create rainbows. And when life offers up “those things” to each of us, we face the grief, we work through the pain, we move on. But we don’t have to do any of it alone. I find it such a blessing every day to know I have friends and family to turn to when life serves up the unexpected. And I try to make sure I’m there for them when they face “those things.” When “it can’t happen to us” turns into “it does happen to us,” we have each other.

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Yes, she lights up our lives just as she is, but any improvement for her would be great too.

Yes, she lights up our lives just as she is, but any improvement for her would be great too.

I have a child with Down syndrome, but I’m not involved in the “community” in any way at this stage of our lives. (When she was little, I was on the board of directors of the local Arc, which advocates for and serves people with disabilities, but that’s pretty much been the extent of my activism or involvement.) I get a monthly email from the National Down Syndrome Society (or is it Congress? see: I don’t pay a lot of attention), and I sometimes read it. But generally, I don’t pay a lot of attention to the latest news.

This month, I’m late to the party in hearing about this latest bombshell of research: scientists have found a way to “silence” the extra chromosome that causes trisomy 21 in the lab.

Whoa, dude.

I’m still trying to get a handle on what the research really means. But essentially, it could mean there could be some kind of treatment developed in the future to help reverse some of the symptoms associated with people having a whole extra chromosome. Biggies: maybe reducing the likelihood of heart problems or even the cognitive delays that affect all people with Down’s. Apparently, it couldn’t “cure” DS before birth, but it would be a treatment sometime during a person’s life.

Of course, people who have children or other family members with Down syndrome, or who are self-advocates, have varying opinions about this news. Some worry that “curing” DS would remove a valuable segment of the population that arguably helps teach others about love and understanding.

Here’s my take: if it’s possible to give my daughter a better life, I’m all for it. Of course, I love her just the way she is, and I love how she is just herself and how she contributes in her unique way to our family. But I have every confidence she would be just as wonderful and a delightful contribution to our family and to the community if she didn’t have Down’s. I am not actively seeking or hoping for a cure. No, but if this research were to lead to some improvement in her life, even a drastic change, I’d still take it. If it allowed her to be able to (finally) understand math, for heaven’s sake, I’d take it. Why not?

I don’t expect that this research will lead to any real change or treatment within her lifetime, really. But in the land of what-if’s, I’m firmly on the side of taking a cure. I don’t think Down’s makes her the delightful, amazing kid she is; I think she’s just that person anyway. And if she could lead an even more productive and healthy life, I’d let her. Doesn’t every parent want the best for their child? I know I do.

As for the idea of taking away a whole “culture,” I still feel there are plenty of other people with disabilities of varying types that still teach us that extra love and compassion. I don’t see us curing any of those things wholesale. It would just be a strange kind of selfish to just keep people with a disability disabled if they didn’t have to be, just so we could have another way to help people be compassionate. That just seems upside-down and weird to me.

I’ll be interested to see what comes of this research. I won’t hold my breath for a cure or any real life-changing treatment from it. But it’ll certainly be interesting to see what happens.

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It’s been six months since this incident but somehow I have managed to miss any news of it. And it’s certainly the type of story that should have lit up my Facebook newsfeed and the blogosphere: a man in his 20s with Down syndrome died of asphyxiation after a scuffle with off-duty sheriff’s deputies who tried to forcibly remove him from a second showing of a movie. Just reading this makes my heart seize up and fall a few inches within my chest and makes me want to scrub the knowledge of it from my mind.

Robert Ethan Saylor is the young man with Down syndrome who died after an encounter with off-duty deputies; this family photo ran in the Washington Post.

Robert Ethan Saylor is the young man with Down syndrome who died after an encounter with off-duty deputies; this family photo ran in the Washington Post.

How is it that in the intervening months this hasn’t been passed around more? How did I miss it? Somehow I know that Kanye and Kim named their baby girl North West (just confirming yet again why I do not watch their shows/buy their products or support them in any way, monetarily or with my viewing/listening time), but I didn’t know that a young man with mental disabilities who idolized the police died because of people’s lack of training or sensitivity or understanding or … I don’t know what. I love this editorial from the Washington Post: where’s the outrage, indeed?

As the mother of a nearly-15-year-old daughter with Down’s, who is getting to be a full-size adolescent (still quite short, which isn’t unusual, but a solid 85 pounds), and who certainly has her own opinions and desires that sometimes don’t quite mesh with mine (which isn’t unusual for an adolescent, either!), I am honestly just sickened by this.

I can totally see this happening to her if she were in the same situation: went to see a movie she really liked, decided to just stay seated for a second show, makes a bit of a fuss about being asked to leave. Even if I have explained to her some of the societal norms and expectations for this, she either may have forgotten, not understood, or just chosen to forget. So she stays. Some security officers at the mall who happen to also be sheriff’s deputies or police officers (who in this case aren’t even in any kind of recognizable uniform) tell her to leave; she stubbornly digs in her heels and stays. They pick her up and she resists (wouldn’t you?), and she somehow ends up asphyxiated. It’s a nightmare scenario, all the more so because it’s so easy to imagine happening.

What’s more sickening is knowing that if just one of those officers/deputies had any experience spending time with someone with a mental disability, they might have just simply quietly sat and waited. Waited for someone in uniform, talked to someone who knew the young man, taken a moment to make a phone call, just waited for him to stop panicking or being scared, throwing a fit, whatever. Even just let it pass; was it worth tossing him out of the theater? My daughter, even in situations at home where she’s throwing a little tantrum, tends to recover within a couple of minutes and then just nicely go about doing what I’ve asked, as if she never resisted. So simple, so safe.

So, as the Post asks: Why did Robert Ethan Saylor die? Where is the outrage? Here’s the Post’s editorial on the topic that just ran a couple of weeks ago: I know I’d like to make this news more widely known.

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