• Tag Archives Down Syndrome
  • Down Syndrome Awareness 2015

    October is Down Syndrome Awareness Month.

    I already wrote my account of how Down Syndrome changed our family for the better. I published it last October, so there’s no need for me to rewrite it. You can read about my baby sister, Lori Ann, here. She was with us for only a few years, but she made us all better people.


    Amy, Lori. Ellen, 1970
    Amy, Lori Ann and me ~ 1970


    People with Down Syndrome live their lives just like you and I. 

    These days there is a push to stigmatize unborn children with Down Syndrome. I can’t understand why, but for some reason these special needs human beings are being aborted at an alarming rate. It’s very sad for families who have been blessed to have Down Syndrome people as members. We don’t understand why they are singled out, however I do not dwell on this unfortunate fact. I guess it’s a sign of the times. I pray that better days are ahead, since Americans are better than this. Americans have only recently begun to practice what amounts to eugenics. Again, we as a nation have always been champions of marginalized people for the most part, and perhaps we will rise above the current dark trend of using murder to rid ourselves of people who some deem “imperfect.”


    Children and adults with Down Syndrome are great gifts.

    They truly are wonderful people. Please read all about Down Syndrome Awareness Month, facts about Down Syndrome, resources and, if you are so inclined, how to help, at the National Down Syndrome Society’s website.

    I recently became aware of the following poem, entitled “Welcome To Holland” by Emily Perl Kingsley. It’s very profound. My parents knew all about the sentiment contained in this poem.



    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

    Holland seems a very lovely place. If ever you are given an unexpected chance to go there, even though you had planned to visit Italy, (where, after all, most parents go), don’t dismiss it too quickly. Lovely things happen there. You will learn much about compassion, patience, kindness and even holiness in Holland.

    Down Syndrome Creed

  • No One Can Drive You Crazy, Unless You Give Them The Keys

    I read a quote this evening: “No one can drive you crazy, unless you give them the keys.” Okay. Fair enough. We can’t change the behavior of others, we can only change the way we react to it. This is the way I’m choosing to live my life from now on.

    That’s why I didn’t mention Trig Palin and his dog to my mother. As many people are aware, Sarah Palin’s son Trig was photographed while standing on his dog.


    Because of media programming, many Americans hate Palin and her family. Some of the people who hate this family probably have no idea why they hate her. They’re simply following the herd. What began seven years ago has become a hard habit to break. Since Americans have been conditioned to believe Palin and other Conservatives do not merit the same respect or compassion as those of other ideologies, the hate is permitted to flourish. I’ve come to the conclusion that it will probably stick around for awhile, so with the exception of retweeting the most insane hatred in order to expose it, I give up. Palin has become the punching bag for any Democrat with a cell phone who happens to be having a bad day. Since the rules of “leave children out of it” do not apply to traditional Americans, Christians, and Conservatives, Palin’s children are also targeted on a regular basis. Since the hate began seven years ago and hasn’t lessened in intensity, I’ve come to the conclusion that it’s okay in the eyes of many Americans. Here is an example of the latest in Palin hate.


    IMG_6776 IMG_2466


    You may be wondering what this has to do with my mother. My mother and father lost a little girl in 1970. The little girl was my sister, Lori Ann. She was three years old when she died. She had Down Syndrome, like Trig Palin. When Sarah Palin came onto the political scene in 2008, our family was thrilled. My parents admired Sarah for obvious reasons. Then the hate began, including hate for Trig. Of course it hurt our family; I’d be lying if I said it didn’t, but everyone has their crosses. Maybe this is ours. I’m not writing this post to garner sympathy. I’ve already come to terms with this unfortunate situation.

    Still, I didn’t mention the latest hate-fest to my mother. It’s January, a bad month for her. My father passed away in January of 2012, and the Holidays are hard for us. I was hoping mom missed the Trig comments. Unfortunately, she didn’t. She mentioned it on the phone this morning. That’s why I’m blogging about it. It bothered me all day, and this is what I chose to write about. I included the screenshots of hate-tweets on the off chance that some random person reading this might find empathy for Trig and his family. They are human beings, the same as the rest of us, even though the media dehumanizes them.

    It’s a shame, but many Americans have bought into this premise, the same way they’ve bought into the premise that a human child in a womb is only a clump of cells. Despite advances in science and technology, such as ultrasounds which plainly show the children, some Americans insist they are not children, and have no right to their own lives. This is an unfortunate fact.

    I’ve been part of the respect life group in my parish church for five years. In those five years, we have made little to no headway in bringing awareness to the plight of the unborn. In fact, certain parishioners seem to be clutching pro-abortion ideology in a death grip, up to and including promoting it in schools.

    Perhaps we made mistakes in our approach. The four of us organized trips to the annual March for Life, tried a pro life movie night, handed out pro life prayer cards, and sat at a table at the church bazaar and tried to interest parishioners in learning about unborn children. We raffled off handmade baby quilts, blankets and sweaters, and held a “baby shower” every spring. The baby items were then donated to a crisis pregnancy center. Somehow, though, we find that we have the support of less than half the parish. Maybe even less than a quarter. Again, perhaps it was our approach. Maybe we tried too hard. Maybe we didn’t understand that people didn’t want prayer cards containing prayers for the unborn. Perhaps we came across as being pushy. Our reasoning was that we were doing our work in a Catholic Church, the rules of which are that abortion is not allowed, so we figured most people would be on board. Why go to a Church when you disagree with a non-negotiable in the Catechism? It was sort of common sense for us to believe that Catholics would see the truth with all the technological advances of the past ten years, but science and technology seem to have overtaken our church and left it in the dust of 1973. Our group seems to have made enemies, not friends, and we’ve even been actively shunned and snubbed at times. So be it. Again, I’m not asking for sympathy. I’m certainly not a victim here.

    However, after five years, I admit I’ve burned out. Since I’ve decided to live my life differently, I’m cutting my losses. Doing the same thing over and over and expecting a different result is the definition of insanity, so as of this week, I’m quitting the respect life ministry. I know we have done some good for actual babies and expectant moms, but I cannot bang my head against a brick wall in my own parish any longer. Perhaps the group will keep going in some capacity, but I won’t be participating in anything but prayer.

    The same people who trashed Trig Palin this week over a dog are probably the ones who wanted his mom to abort him. Many people said such things before Trig was born. Seven years hasn’t made much difference. There’s no reasoning with such people. Pro abortion ideology brings out the ugly in people. Perhaps they themselves are suffering and don’t know what they’re doing when they treat a child such as Trig the way they do. I can’t wonder why anymore. I’m making a decision to just pray.

    My mother feels some pain inside, every time Trig or his mom are disparaged. I do, too. So do numerous other families with special needs children. But whatever–we’re strong. We’ll handle it. We really have no other choice, do we?



  • October is Down Syndrome Awareness Month

    I’m glad there’s a special month to bring awareness to Down Syndrome, since people with Down Syndrome are special. I learned this firsthand when my sister Lori Ann was born in 1967.


    My sister Lori Ann in January of 1970, pictured with Amy, left, and me.


    When Lori Ann joined our family, there was no special month to bring awareness. In fact, my parents were urged to institutionalize her immediately after her birth. They never even considered such an option, however. Lori simply came home and became part of the family, and for this we will always be grateful. Because Lori lived in our home for three years before God decided he wanted her back, my sister and I are better people than we would have been otherwise. Our children are also better people. We’re all better human beings, because Lori taught us to value other people, and to understand that the good health we were born with was a gift.

    Lori was not blessed with good health. She had many physical ailments, and her little life ended on October 21, 1970, exactly forty-four years ago. She was three years old. We wish she was still with us. Even though Lori Ann’s earthly life lasted only three short years, we feel blessed that God sent her to our family. She was our teacher, you see.

    I recently had the pleasure of discussing Down Syndrome awareness with author, blogger, and founder of the Writestream Radio Network, Daria DiGiovanni. Daria and I shared childhood memories of growing up with siblings who had Down Syndrome. Daria inspired the audience with her brother Ralph’s story, and shared many good sources of information about Down Syndrome. Please click here to listen to the podcast.

    Unfortunately, we were also forced to give the listening audience some unpleasant facts about societal attitudes toward people with Down Syndrome. These days, ninety percent of children with Down Syndrome are aborted before they’re born. This is a disturbing statistic. What happened to the human race? Shouldn’t we be more accepting of people with disabilities by now?




    I find such an attitude distasteful, not to mention ignorant. We were supposed to have learned a lesson back in 1945, when Hitler’s death camps came to light. Hitler was on a quest to create a master race of humans. Unfortunately, his ideas are shared by supposedly educated people in today’s scientific community. What have we become?

    It might be a good idea to do some soul searching. What kind of civilization kills innocent children simply for not being “perfect”?