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My Sister’s Funeral: Let’s Reevaluate Down Syndrome

Abortion, Answers to Hard Questions

My Sister’s Funeral: Let’s Reevaluate Down Syndrome

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I wrote a post a while back called Thank You for Not Killing My Sister: Abortion and Down Syndrome. In it I quoted an article that said:

Although no national data are available, the abortion rate of fetuses with the condition [of Down Syndrome] was found to be 59% in one California study and 92% in an English study.

If you have not read my post, I argued that abortion is not the way to deal with Down Syndrome and that it is a mistake to kill these precious children. One of my main arguments springs from the experience I have had with my sister Heather. There are many people in America that are believing a lie that Down Syndrome children are “defective,” but this idea is totally contrary to my experience of growing up with a sister who did not mess things up but instead enhanced and brought joy to my life.

Heather with Her Niece

I am sad to say that since I wrote this post, on August 10th my beautiful, wonderful sister died in a Montana hospital. Heather beat the odds, lived to birth, and then continued to live an amazingly full life until she was 33.  It happened very quickly.  One night she woke up with severe nausea, was rushed to the hospital, and died later the next day.  The diagnosis was unexplained bleeding on her brain.   Needless we all were (and still are) shocked that she is gone.

The funeral was held in Colorado, where she lived most of the year with my parents. Though I recognize that I am prone to crying at these kind of things, I chose to speak anyway because I wanted to honor Heather.  I was one of five people that chose to share about Heather’s impact on our lives and one of 200 in attendance of her funeral. Like the other speakers, I told the misty eyed crowd of the many ways in which my life was better because of Heather. It was through Heather that I first learned of God’s love for the weak and helpless. Heather taught me how to weep with those who weep. She showed me a boldness that could walk up to a man twice her size and tell him about Jesus as though he were an 80-year-old Sunday School teacher. And she taught me what Jesus meant when he said “Truly I say to you, unless you turn and become like children you will never enter the kingdom of Heaven” (Matthew 18:3).

I figured out pretty early on in my address that I could not look at the section where my family was seated.  And the couple times I forgot to avoid eye-contact, I could not contain my tears. There in the section closest to the stage were some of the strongest people I knew sobbing like children.  These who were the most “inconvenienced” by her condition were the ones who were crying the most.  Why were they weeping? The same reason I am crying right now. We miss Heather.  We loved Heather.  We loved having her in our lives.  As I spoke, I was looking into the eyes of people that would do anything to have just one more moment with her. People longing for one more chance to say something silly just to hear her laugh again. Most of whom, like myself, never even got to say goodbye.

Time for Reevaluation

So, in a world where the vast majority of babies with Down Syndrome are killed before they could ever take a breath, sat a church full of people thankful for every breath Heather took. I recently spoke to my mom about Heather and she commented that we have all been so impacted by Heather. She has had a positive effect on hundreds of people.  And yet, so many pre-suppose that having a child would Down Syndrome would be a negative thing.  Why?  If that is true, where are the parents of children with Down Syndrome who are saying that they wished they would have aborted?

There are many reasons not to kill an unborn child with Down Syndrome, but I mainly just want to combat one lie with this post. It is the lie that if you have a baby with Down Syndrome, neither you nor your child will ever have joy. It is the lie that says that deformity and retardation equal suffering for the child and his or her parents. I can honestly say that I have never met a more joyful person in my life than Heather. Her middle name was Joy and truly that is what characterized her life. Yes, she was made fun of in elementary school. Yes, she had many more surgeries in her life than I have. Yes, she lived in her parents’ house until her death. But the amazing thing is that she never wanted to leave their house and my parents never wanted her to go. Heather not only lived a life full of joy, but she radiated it to others. Our lives were not worse because of her, they were better. And, to put it as my brother did, she was not defective, we are.

So, let us think about what is true today. Whether you are the one considering an abortion because the doctor told you your baby is deformed or a sidewalk counselor seeking save the lives of those with special needs, consider the irony of this story. Thousands of men and women killing children with Down Syndrome, and hundreds longing for more time with one.

A video celebrating the life of Heather.


  1. Phyllis Peklen

    You have touched my soul. I can see Joy in Heather’s face and love around her. She was so lucky to have a brother like you and you are so lucky to have had her as a sister. God bless each of you. And now she is still touching people even though she has gone to be with her Father.

    Thank you for sharing.

  2. Brigid

    Truer words have never been spoken. You are so blessed to have shared in her life. Thank you for sharing!

  3. Jessica Neale

    I had a sister with Downs who died the same way as your sister. I was only 13 and she was 17. It was like some one ripped a part of my very soul out that day. I wish I could spend just one more moment with her. <3


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