Soper’s The Year My Son and I Were Born

Years ago, my best friend gave birth to a Down Syndrome baby. Her husband immediately left for two weeks, unable to deal with the challenges this child presented. I visited my friend and we talked quite casually about the immediate difficulties of a Down’s baby. On the Sunday afterwards, I went to church and chatted with my bishop’s wife. She had given birth to a Down’s baby some forty years previously. I asked her for advice, and she and I sluffed Sunday School so we could talk.

“Margaret,” she said, “I didn’t even know my son had a problem until I took him to a doctor after three months. Then the doctor started telling me about Down’s babies–we called them Mongoloid back then–and I had no idea what he was referring to. He told me I should put my son in an institution, that there was no hope for him otherwise. I sat in my car and cried for an hour after the doctor’s visit, and finally called my husband.” She then gave me some excellent counsel about supporting my friend.

This bishop and his wife did more than care well for their son–who is still living. They built a whole school (and these are not wealthy people) called RAH–or Recreation for All Handicapped. It became a place of refuge and help for families and children facing Down Syndrome. That bishop used to say, “You don’t have to tell a Down’s child about Jesus. They know Him already.”

The last thing my friend did in her life was to throw herself over her Down’s baby’s body as her car was headed into the crash which would take her own life. The baby survived.

With this as my context, I read Kathryn Lynard Soper’s new book The Year my Son and I Were Born–just out from Globe Pequot Press.

Many of us already know Kathryn, who manages the Segullah blog and is a frequent contributor to many places in the ‘nacle. We recognize her rich and concise writing style, and her generous heart. This book is full of her gifts, and is relevant to any who have dealt not just with challenged children, but with challenged lives. (Any exceptions?) So much of it is about acceptance and resilience.

How have you coped with unexpected twists in your path? What keys to resilience can you share?

My brother, who was badly hurt in an accident years ago and has since focused on resilience as a field of study, says that a hard change feels like facing a piano and not being able to play any of the keys you are accustomed to playing. The only way to love music again, he says, is to learn to enjoy the keys you aren’t used to.

Lots to talk about. I’d love to hear others’ experiences, and I encourage you to read Kathryn’s book. It’s a great one for a book group or a personal read.

Bookmark Soper's The Year My Son and I Were Born

Comments

  1. Kevin Barney says:

    The book certainly sounds interesting. I’ll have to be on the lookout for it.

  2. I have a family member that recently had a baby with Down’s Syndrome. I’ll pass this right along.

  3. Steve Evans says:

    Kathryn is an interesting person with tremendous writing talent. Can’t wait to read the book.

  4. Last Lemming says:

    I have little interest in reliving the events of 24 years ago, so I will likely pass on Kathryn’s book. But I sincerely hope it is missing such sentiments as those of your former bishop.

    “You don’t have to tell a Down’s child about Jesus. They know Him already.”

    My mom used to teach a Sunday School class for the mentally handicapped, and some parents refused to let their children participate because they supposedly didn’t need to be taught about the gospel. This is seriously misguided thinking and shortchanges those poor children.

  5. Wow, Last Lemming, I really didn’t find anything offensive about what my former bishop said. Maybe that’s because I knew him. He had little education, was an inactive Mormon for most of his life, had a military career, and completely devoted himself to helping children like his get opportunities his own son didn’t have. I find him quite heroic, and found his sense of his son rather sweet–and certainly, given the context I have of him, not worthy of any sort of condemnation. But if you’re concerned about sentimentality, I assure you, Kathryn’s book is not sentimental. It’s beautifully written and consistently honest. No, she does not say what my bishop said. But I think you could be more generous with him. With pretty much no resources, he made a huge difference in our little community. You don’t have to agree with him to respect him.

  6. Gee, I knew exactly what the Bishop meant and I wasn’t offended in the least. People with Down’s Syndrome are among the most loving and generous individuals you can meet. This Bishop walked the walk, as well. ’nuff said.

  7. My youngest daughter has a birth injury to her brain. She is 21 and functions at about a 12yr old level. Sometimes I see glimpses of what she could have been without the damage and know she would have been extraordinary. But she is who she is. I have learned from her the value of perserverance. I have also learned that an awful lot of people have trouble dealing with someone who is different. And she does have and probably will always have the the faith of a child. I will absolutely look for the book.

  8. Last Lemming says:

    I didn’t condemn your bishop, I condemned a theological viewpoint that was implicit in the statement you attributed to him. It sounds as if he did not actually follow that viewpoint to its logical conclusion, for which I commend him.

    Rather than continue this threadjack, let me refer interested readers to the following post:

    http://mormonmd.wordpress.com/2008/01/15/disability-and-human-potential/#more-22

  9. I love Kathryn’s writing, and have a friend who recently gave birth to a T21 baby. I look forward to reading this.

  10. I would have liked to have known that bishop and his wife. What an amazing and deeply humbling example.

  11. I’ll check that book out. Thanks for the recommendation.

    I really have nothing to offer in terms of keys to resilience. I’m hesitant to say this, because I don’t want to jinx it, but I have led a charmed life, and it frequently occurs to me that I’m probably among the luckiest people on Earth.

    Last Lemming, I think that the sentiment expressed by Margaret’s bishop is akin to the one that George Will expressed about his son Jon Will in his essay Jon Will’s Aptitudes:

    It is an interesting commentary on the human condition that one aspect of Jon’s abnormality — a facet of his disability — is the fact that he is gentleness straight through. But must we ascribe a sweet soul to a defective chromosome? Let us just say that Jon is an adornment to a world increasingly stained by anger acted out.

  12. a mom to a chromosomally enhanced daughter says:

    I am Tracy’s friend (and I got to read it before it was published!!). She captures well the feelings that wash over you, but you also learn in time that it isn’t that big of a deal.

    My daughter is still young, but I wish that you alll could be as lucky as I am. When you see families that have kids like ours, don’t be sorry for us because we feel kind of sorry for YOU (wink).

    Also it rubs most of us the wrong way when our T21 kids/family members are referred to as “Down’s baby” or Down”s anything. Down Syndrome is just a tiny part of what makes up my daughter. After all, we don’t refer to our other kids as “the drug addict sister” or “crazy friend”. I would no more refer to my daughter as a “Downs baby” than I would to my other kids as a my “adopted black daugther” or “terribly destructing son”. Down Syndrome might be all that YOU see, but it is just a tiny part of the story. Try and remember to say “a person with Down Syndrome”. It is more respectful

    For the record, she is–by a long shot–my easist, most easy going, happiest kid so far. I don’t know if that is the result of that extra chromosome, but I’ll take it

  13. a mom to a chromosomally enhanced daughter says:

    Wow, I didn’t proof read my former comment at all… spell much?

    Also, you don’t ever have to think to yourself (or say in a comment) that these are poor children. I don’t feel sorry for Gracie at all. It has (and will continue–I imagine) to get used to this different path in life for our girl, but she will have everything my other kids have; parent who love her, education, independence, friends, etc, etc. She might not have Harvard, but she will be fine. This isn’t just rah-rah cheerleader mom talk, it is the truth. Don’t feel sorry for us.

    ALso, I didn’t mean to sound so harsh about not calling our kids “Down’s babies”. It is just something to keep in mind. It is kind of like calling black people “colored” it is old fashioned. Also, for the record, it is DOWN Syndrome, not DOWNS (but don’t feel bad, my mom still says DownS baby… sigh).

  14. a mom to a chromosomally enhanced daughter says:

    Ok, so I can’t stop typing.

    To answer the question, I have learned that the new normal is just a good as the old one. Keep plugging along, have a good support group and celebrate the victories as well as weep for the losses.

  15. I’m almost done with it, and it’s powerful and compelling. I’m so grateful to Kathy for writing it.

  16. Last Lemming says:

    My “poor children” comment referred only to those who are not taught the gospel or are held out of church activities by their misguided parents, not to those with Down syndrome in general.

  17. Nice quote, DKL. I have a student like that right now.

  18. Margaret, thanks. Kathryn’s a great writer.

    DKL…I love that quote. Thanks for putting it up.

    To Mom in #12, 13, 14. Thanks for telling us about the appropriate language to use. I think sometimes I feel so shy about saying things the wrong way, or in a way that will be hurtful that I just don’t talk about someone’s challenge. Clearly that’s not the best way to go. When I know that I’m expressing things in a way that won’t hurt, then it allows the conversation to be more natural, and allows me to make a connection with the other person. Anyways, just wanted to say that your comments were appreciated.

  19. In case it is helpful, here is a website that discusses “people first language”, what the sister is wanting for her daughter.

    http://www.kidstogether.org/pep-1st.htm

    Sounds like a great book. My perspective is that of one who has volunteered w/individuals w/physical and cognitive disabilities and has a graduate degree in a rehabilitation discipline. But even w/this, there is the worry of unintentionally offending people through sincere well-intentioned comments.

    If it helps, even newspapers/magazines sometimes use less than idea terminology:
    example, sometimes they write “stroke victim” instead of survivor of a stroke,etc.

  20. the mom who lazily reads blogs says:

    At some point — especially with a physical disability — you realize that disability has been around for millennia and is part of the normal continuum of humanity. Can I say that again? Disability is normal. The (evil) inclination is to closet it, throw a cloth over it, or in some other way push it aside so that those without those particular disabilities can get on with what they want to do. Our daughter has Down Syndrome; initially I knew that my job was to delight in her as she is, and to help her seek and develop her gifts. Now, as we have grown together (she is 11), I have become more settled in knowing that there is nothing wrong with my daughter. I do not know if I can communicate this in this format — or any other way to say it. It’s not pretending that the disability does not exist. But it is assuming that she will learn and grow just fine, that she will meet the challenges that come before her, that her thoughts and desires are valuable, and that she has a work to do here that is essential (I do not know all about that yet).

    Thanks for the comments on person-first language. It helps us put disability in its place — something a person has, not what a person is.

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