Yesterday William looked out the window and said, “Mom, why did Jesus decide to make it rain this morning?” I cocked my head. Not only was I unsure how to answer him, I also wondered where the question came from. “Well, I guess Jesus just thought it was a good day for rain.” Right. Sure. William seemed satisfied. In another unexpected moment of spiritual “insight” this week, I received a note about Penny. Penny had gone on a playdate with... Read more
Over the course of the next few weeks, I’m going to run a series of posts that offer thoughts for cultivating “religious spirituality” in the midst of our busy everyday lives. These thoughts are meant to serve as a companion (or maybe, for those of you who haven’t read it, as an introduction) to my recent ebook, “Why I Am Both Spiritual and Religious.” In the introduction to that essay, I write: I feel the tension in my body of... Read more
A few articles/posts/essays I’ve come across lately that you might enjoy: My Brother’s Valuable Life, by Cal Thomas, a reflection upon the value of his brother with Down syndrome: “No life is a failure when it causes so many to care for others. At that my brother succeeded magnificently.” Four Ways for Writers to be Good Neighbors by Ellen Painter Dollar, a great reminder of what it means to care for the people you are competing with. Seeing Takes the... Read more
I don’t want to share the series of bad parenting moments I experienced this weekend. The times I cursed my children under my breath, the times I yelled, the times my whole body felt fraught with tension and anger and exhaustion. I don’t want to share the story of feeling discouraged by Penny’s horrible behavior in school last week. I certainly don’t want to share the moment when Peter and I discovered, at the end of the week, that she... Read more
A few months ago, I wrote a post called, “Why I’m Both Spiritual and Religious.” Due to a conversation with a reader in response to that post, I realized that I had a lot more to say on the topic. And so I have written an ebook (30 pages), available for 99 cents on Amazon. It’s called Why I Am Both Spiritual and Religious (yes, that’s our own William screaming on the cover, though it is not me in the... Read more
I have a new article on parents.com: How to Raise a Child with Down Syndrome: Advice and Resources. I hope it offers a positive, brief, and accurate introduction to Down syndrome, particularly for parents with younger children. It begins: Down syndrome occurs in one of 691 births, or 6,000 births per year in the U.S., as a result of the presence of an extra chromosome 21 at conception. Although individuals with Down syndrome tend to experience some health problems throughout their... Read more
Amelia Rivera has made the news this week because her parents wrote a blogpost about doctors denying Amelia a kidney transplant on the basis of Amelia’s “mental retardation.” After an internet uproar, that decision is under review. Lisa Belkin has written about this story for the Huffington Post, and she argues: The stark reality then, is that a kidney that goes to one patient means it does not go to another. Giving a kidney to Amelia means that someone, whose... Read more
The Rev. Dr. Martin Luther King Jr. had a dream. He expressed that dream in terms of race, but I suspect he could have expressed it on behalf of individuals with disabilities as well. He said, I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident: that all men are created equal.” . . . I have a dream that my four... Read more
Two friends recently asked me for advice. Both are in their first trimester of pregnancy. Both of their doctors have suggested prenatal screening for Down syndrome between 11 and 13 weeks. Both women are Christians, and both of them would “keep” a baby with Down syndrome. And both of them asked me for some guidance on how to think about these tests. I’ve written before about my own experience with prenatal testing (“Sometimes It’s Good Not to Have a Choice”... Read more
Some people still think that it is sad that Penny has Down syndrome, and that as her parents we have simply “come to terms” with her diagnosis. I’d say instead that while Down syndrome brings with it plenty of challenges, the fact that our daughter was born with it has also opened our eyes, and our hearts, to a new reality. It’s the reality that disability is a human experience, much like any other–complicated, often difficult, often rewarding, and with... Read more
Thin Places-Faith, Family and Disability
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