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Segullah’s Book Club Discussion: The Year My Son and I Were Born

By Angela Hallstrom

Today for Segullah’s book club we are discussing The Year My Son and I Were Born, written by our very own Kathryn Lynard Soper. This memoir takes us through the first year of Kathy’s life with her son, Thomas, who was born with Down syndrome. Although the book takes as one of its subjects the specific challenges facing parents of children with disabilities, it touches on a wide range of issues and themes, from postpartum depression, to the role faith plays as we grapple with personal struggles. There are many meaty ideas packed into Kathy’s memoir — the quotes and questions below are just a sampling — so feel free to focus on one question, or simply write about the thoughts that The Year My Son an I Were Born provoked in you.

From page 34, soon after Thomas’s birth and diagnosis:

“I needed the diagnosis to mean something — that’s the only way I could handle it. When Sam [another son who’d been born prematurely] was born ill, I’d clung to the belief that God gave us that trial for a wise purpose. My friend Kate, who isn’t religious, called it a random occurrence. But I couldn’t bear that thought. I feared a world where anything could happen at any given time for no good reason. Believing in divine will protected me from chaos — I was angry at God for giving Thomas Down syndrome, but at least I knew someone was in charge.”

*How does the idea that God “gave Thomas Down syndrome” both comfort Kathy and complicate her healing during the year after Thomas’s birth? Have you grappled with the question of God’s intentional involvement in your own challenges? What conclusions have you drawn?

From page 124, soon after receiving a visit from an early intervention therapist:

“My [other] babies saw my relief (You’re normal!) and delight (You’re smart!) as they lifted their heads and swatted their rattles. They saw my satisfaction when they walked and talked, counted and spelled. That’s how [they] learned to value success, quickness, competence. From day one I gave them my happiness in return for their achievement. Guilt clenched my stomach. I didn’t want to teach Thomas that his worth increased with his developmental success, and I didn’t want to keep teaching that lie to my other kids. I wanted all of them to know, without question, that they were lovable and valuable no matter what they did or didn’t accomplish. And yet, according to the experts, Thomas needed my help to have a good life. The importance of early intervention cannot be stressed enough. Early intervention. Its purpose was to intervene, to change the course of Thomas’s development, accelerate his progress, and move him toward a more desirable end. But how could I feel and show unreserved love for Thomas if I was constantly trying to change him? On the other hand, how could I withhold my help and encouragement, even my praise, and call that love?”

*Kathy’s questions get at the heart of a challenge all parents must face: how do we simultaneously encourage and even push our children without sending the message to them that it’s their accomplishments that matter most? How do our desires to have “successful” children (sometimes for our own selfish reasons) complicate our relationships with them? How does Kathy’s experience with Thomas allow her to understand what it means to love unconditionally?

From page 314, near the end of the memoir. Kathy has come to a number of realizations during the course of Thomas’s first year:

“When Thomas was conceived, I didn’t know that my body was creating a child of change. . . . I didn’t know that I was on the verge of birth, and of death. The death of old ways. Old values. Old self, packed in a hard shell of protective beliefs. I only produce normal babies. I can conquer any difficulty through sheer willpower. I will always give my children what they need. I am something better than human. Strange — I’d clung so tightly to those falsehoods, as if they could keep me safe. Yet I felt safer with them stripped away, safer with the naked truth in full view. I only wished change didn’t hurt so much. It hurt to have my mind and heart cracked open. It hurt to be left raw in the open air. It hurt to lose the only life I knew, and to realize that no amount of magical thinking could bring it back.”

*Some beliefs, like “I will always give my children what they need,” can seem motivating and empowering on the surface. Why was it so important for Kathy to shed these “falsehoods”? What “protective beliefs” have you shed as you’ve moved through your own personal challenges?

Feel free to discuss these questions, or any other thoughts you might have on The Year My Son and I Were Born , in the comments below.

About Angela Hallstrom

(Advisory Board) grew up in Utah, then moved to Minnesota, then came back to Utah, then packed up her husband and four kids and moved to Minnesota--again!-- in the summer of 2010. Although she loves the Land of 10,000 Lakes, she dearly misses Slurpees, Sunday dinners at her Mom's house, and eating a whole entire Cafe Rio pork salad while lunching with her Utah-based Segullah sisters. And yes, she finds it telling that everything she misses about her hometown is somehow related to food. She has an BA in English from BYU, an MFA in creative writing from Hamline University, and has taught writing to high school and college students.

13 thoughts on “Segullah’s Book Club Discussion: The Year My Son and I Were Born”

  1. I haven't read this book yet (I know), but these questions and quotes really make me want to. Especially the middle question — because that applies to every parent/child relationship, and even to our relationship with God, right? God loves us unconditionally, yet He wants us to throw off our natural inclinations and become perfected too. So somehow they aren't mutually exclusive.

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  2. I thoroughly enjoyed Kathy's book. As the mother of a disabled child, I appreciated her honesty about her frustrations, anger, and despair after Thomas's birth. Although my son's disabilities are different than Thomas's, I also chafe and the continued comments from well-meaning members of the Church who assure me that my child is celestial and that I must be so blessed and chosen in the pre-existence to be his mother. Yes, I know his spirit is celestial, but like Kathy, my mind and heart have been cracked open and rubbed raw, exposed to the open air. His day-to-day care is overwhelming at best, and his life on this earth is certainly not celestial. I, like Kathy, have had to reformulate my faith and my beliefs in my abilities as a mother to love, nurture, and meet the endless needs of my son. I sincerely hope that those who read this book who don't have children with disabilities will have a new perspective and understanding for those of us who do have these celestial beings in our homes.

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  3. I really enjoyed this book for the perspective it gave me – I don't have a special-needs child. I appreciated that Kathryn had to learn to accept her son for who he was again and again, and there was no one "Aha!" moment that made her feel all better.
    It was very honest, sometimes uncomfortably so (she was so hard on herself!) but that made it all the more worthwhile.

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  4. I read the book over a year ago and was deeply moved by it. Immediately upon finishing it I purchased a copy for my mother. Although neither of us has parented a child with special needs, Kathryn's honesty in portraying her trials–particulary as thy relate to motherhood–seem very universal. My mother has painfully watched her children struggle with a lot of addiction–something she never anticipated would happen in her family–and she could relate to many of the author's struggles.

    I'm so glad you included the third quote. I remember it well, because it is the same quote I shared with my own mother, as we were discussing the book by email. I love the image of standing at the kitchen sink pitting peaches and comparing the hard outer shell of a pitch pit, to how our own hard outer shells can take some pressure to crack. Life throws each of us some unexpected curve balls, and the way these curve balls challenge us and change us and our core beliefs seem to be the "meat" of what life is all about.

    I count this book as one of those rare accounts that is not easily forgotten and lingers on the brain long after you finish its last page.

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  5. "I only wished change didn’t hurt so much. It hurt to have my mind and heart cracked open. It hurt to be left raw in the open air. It hurt to lose the only life I knew, and to realize that no amount of magical thinking could bring it back.”

    Just beautiful.

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  6. Andrea, thanks so much for your candid comments. I think one reason people respond so strongly to Kathy's memoir is because she's willing share the difficult emotions that often accompany parenting a disabled child with unflinching honesty. Kathy's not afraid to face her doubts and questions head on, and as a result, her readers trust her and are better able to face their own challenges, no matter the cause. Stephanie and Caitlin's responses are proof of this. I'd love to hear more!

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  7. Unlike lots of parents, we knew our daughter had DS at 20 weeks… so I had a long time to stew about it. I did a lot of reading. Some books were infuriating, a friend directed me to Kathy (and I had been reading Segullah forever). Her son is about 18 months older than my daughter. I quickly got my hands on the book she edited. It was exactly the tone I needed. NOt the syrupy ick of the story "going to Holland" (whcih BTW is a great story and pretty much how I would describe things now, but at the time I was still in trauma/grief stage and I DID NOT WANT TO HEAR IT!!).

    I loved that the stories in her book acknowledged the hard parts but it was clear that all of the parents were crazy about their kids and that was how I felt.

    When I had the chance to read this new book, lots of things really resonated with me, but I had already started to change with my own experience. I was able to see the things that KS was talking about and instead of feeling lilke I was LIVING it at the time, I could remember feeling it and being in a different place. I wrote a lot in the early days, and now I am a columnist about parenting kids with special needs. I think it is important to remember that it is a PROCESS. There were many, many thinsg that I mourned for my daughter. And then things leveled out, and as she starting to fall farther and farther behind her age peers, a new mourning begins. But it is ok. It is part of the process.

    I wish there was a way to express to all the people who look at us and seem my daughter and either act like/or say "Im sorry". My life is good. My daughter is good. Her reality is pretty awesome. She is capeable and confident and happy and striving to hit goals.. the basics are the same as my other kids. There is NO reason for pity, but the times I feel overwhelmed, it's nice not to feel like I have to be the poster child for special needs parenting and just be able to be frustrated.

    I appreciated the way that KS talked about this affected her family, her relationship and all the other sticky stuff that can be toxic if it isn't processed and worked through. There is a reason that familes that have children with special needs experience higher divorce rates. It's hard to have those conversations. Her book, while it might not be everyone's experiences, covers what many of us experience.

    K is going to have to keep writing books. 🙂 I know this doesn't really answer any of the asked questions, but this is what came out of my brain between dinner prep and keeping that same child with DS out of garbage can. Good times (and trust me, when I say she is more like my other kids than different, I mean it, right down to the eating nasty things out of the garbage can and watching too much Sponge Bob).

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  8. One more thing, I am the parent of three children with special needs. They all bring their own challenges. Andrea, I am SO with you on the church members and the "celestial" beings thing. GRRR.

    I might stray off the widley held belief of most members, but I truely believe that ALL of my children had the potential to be celestial spiritual beings when they arrived and that the body my daughter arrived in was biology. Period.I know that HF has a plan for her and our family, but her job on this earth is no different than the rest of us–to reach HER potential

    I am not going to thread jack, but this is a discussion I would love to see another time. I know that I was chosen to be Gracie's mother, and I know she was destined to be in my family, but not because of her diablity or anything I had to offern in the pre-existance or anything else than the infathomable reasoning that goes behind ANY of us having the family we have.

    Those well meaning comments (and it is important to realize that I KNOW the spirit in which they were meant) are not offering the spirit that the giver wishes to imply. 🙂

    BTW, when I hear about a family that has a new baby with Ds, the first thing I do is send a copy of both of KS's books. I bought 40 copies of Gifts and left them with all the genetic's counselors in our area with our story and info on the front copy and asked they give them out to families considering termination. These stories make a difference. Real issues, realistic feelings. It is an important tool and I am thankful that KS found the time to get it down and share it with the general public.

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  9. One of the parts that resonated with me was when Kathy had to wrestle with professional perspectives and advice and her own instincts/inspiration. I've had to deal with this wrestle with my own health challenges, and it has stretched me a great deal. We talk a lot about trusting God, but through the process of leaning on personal revelation, I also have had to learn to trust myself at some level. I still don't know how to do that — I'd much rather be told what to do and be dutifully obedient — but sometimes we have to step into an unknown territory and learn and grow that way.

    Exhilarating sometimes, exhausting at other times.

    (I'm in an exhausted phase right now. Zonk.)

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  10. Rebecca, thank you so much for your insightful comments. I especially appreciate this:
    "I know that I was chosen to be Gracie’s mother, and I know she was destined to be in my family, but not because of her disability or anything I had to offer in the pre-existence or anything else than the infathomable reasoning that goes behind ANY of us having the family we have."

    That wasn't threadjacking at all — these are precisely the kinds of thoughts that I hoped this discussion of Kathy's book would engender. So often, we members of the church have a very specific response to certain things that are difficult to explain or talk about, a response that is probably culturally learned to a large extent. (For example, saying things like "God must have needed him" to someone when a loved one dies.) We need people who have experienced these things firsthand to explain how these pat answers, while almost always well-meaning, can often be painful or confusing for those who are actually struggling through the trial.

    I remember a woman –the bishop's wife, actually — in a previous ward whose son had autism. Someone had made a comment during relief society about how children with disabilities are sent to parents in order to teach them. She raised her hand and said that while she understood the commenter meant no harm in what she was saying, it was one of the most difficult cliches for her to bear, because it meant that somehow God had caused her *child* to suffer because she was too stubborn to learn her lessons any other way. The thought made no sense to her and caused her a great deal of pain, and when she took it to the Lord she felt a great deal of peace and understanding that such sentiments were false. Can we all learn a lot from our struggles? Of course. But trying to understand the hows and whys behind our struggles can be very complicated indeed — and it's even worse to try and assume that we know the hows and whys behind other people's struggles, especially.

    And michelle, I think you hit one of the themes of the book exactly: the terror that comes when we have to step out into the unknown and figure things out for ourselves.

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  11. Angela, this comment really expresses how I feel as well:
    "She raised her hand and said that while she understood the commenter meant no harm in what she was saying, it was one of the most difficult cliches for her to bear, because it meant that somehow God had caused her *child* to suffer because she was too stubborn to learn her lessons any other way. The thought made no sense to her and caused her a great deal of pain…" For a long time I was so angry with God because how could He do something so horrible to my son so that *I* could learn patience. I've finally gotten to a place where I realize that there are some things that even God cannot control, and that He didn't do this to my son so that I can learn something. I AM learning patience and faith and charity, but that wasn't my son's purpose in my life. Some things happen as a result of our fallen biological state, and our test here on earth is how we deal with them.

    Another comment Kathy made in her book was the sentiment that when people say to parents of disabled children, "Oh, you are so strong," or "Oh, you are so blessed," or "Oh you must have been chosen in the pre-existence…" what they REALLY are saying is, "I'm so glad I don't have your trial." I know it sounds somewhat unkind to put it that way, but it's true — I don't feel particularly blessed, strong, or chosen. I think those kinds of comments come as a result of people not really knowing what to say in these circumstances. Instead of people saying, "You're so blessed/strong/chosen," I wish people would just say, "I see that you have a hard struggle with your life. Can I take your kids for an afternoon so that you can get a pedicure?"

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  12. I hope I'm not too late here…

    I had wanted to read Kathryn's book for a while. Then a year and a half ago we found out that our second child would be born with some pretty serious physical disabilities, and at the time we didn't know what her mental abilities would be. That is just some background as to what 'conditions' I read this book under.

    For someone about to join the world of special needs I really appreciated and related to this book. I related to her facing up to her own prejudices, I related to her desire for her new situation to be gone, I related to her frustration with those around her–well meaning people inevitably saying the wrong, wrong things–and finally I related with the joy. Well, I relate with that now. Kathryn is a great writer, and that coupled with her honesty–the uncomfortable, terrible truth–is what really helped. It was lovely to see the joy of her new baby come around. Fortunately I had time to come to grips with our daughter's atypical body before birth and life is good.

    I very much agree with the heart of the second quote. Having a special needs child has helped me understand and learn that I don't love my kids for what the do or don't bring to the table so-to-speak. I love them because they're mine. As one segullah story states, all they had to do was show up. And while I still think it's OK and even important to push them to be and do to learn and grow, my love is unconditional and it outweighs any burden I falsely supposed a special needs child would bring.

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  13. Rebecca–

    AMEN. When people try to tell us she was sent to us for a reason and that she's lucky I'm always like "yes, just like our other daughter was sent to us for a reason….just like your kids were sent to you for a reason. And yeah I think she's lucky to have us, and we her." And when people say "Special kids are sent to special families" I'm always quick to say thank you and then depending on who said it and my comfort level with them I'm usually quick to point out that special needs kids DO get sent to families who don't love/take care of them, as do regular children. I know people want to comfort or say that magical, special thing but they don't need to…we LOVE our daughter and we don't need any reassurance about her place in our family or in our hearts.

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