Bitter, Sweet

This essay was recently published in Literary Mama. I’m posting it here as a precursor to my upcoming post about prenatal testing for Down syndrome.

I. In the beginning

You can tell a great deal about people by the way they react when you tell them you’re going to have a retarded child. You might want to try this on a few of your friends, as a kind of litmus test to see what the world looks like to them. Of course, a lot depends on their personal histories — whether they have ever interacted with disabled people and what that interaction was like. But when you control for that factor, a person’s reaction to the news of retardation is usually a distilled manifestation of his or her view of the universe.

–- Martha Beck

True, yes? And especially so for the parent herself.

II. Honesty

I sit on my bed at home, weary and sore from giving birth three days ago, and from contemplating what lies ahead. Yesterday, Thomas’s six siblings filed two-by-two past his isolette in the NICU. They know he weighs four pounds, three ounces. They know his eyes are grey — the nurse let me turn off the bilirubin light and peel back his little blindfold for a minute or two. But they don’t know his diagnosis.

So Reed and I have planned a family council for the occasion. Tonight, we’ll sit the kids down and tell them there’s something different about their new brother. Then we’ll calmly present simple facts about his condition. As a united front, we’ll project love and acceptance, fortitude and pragmatism. We’ll absorb any tremors of anxiety or fear. They need us to show them the way.

But first I need a script. I open the thick brown envelope of reading material from the geneticist: Down Syndrome Information Packet — English. I scan the xeroxed pages, looking for clues. My son Ben, eleven years old, walks in. I set the papers down, blank side up. My attempt at nonchalance fails. Ben picks up the stack and leafs through. His dark eyebrows lift slightly, then lower. He starts asking questions that can’t wait.

I fumble with the answers.

He’s brave-faced for a few seconds, staring straight ahead with that blank look he uses when he’s getting scolded. Then his countenance falls. His nose turns pink. “There’s another name for that,” he says with a quivering voice. “For Down syndrome. It’s that he’s retarded.” Tears fall. “I love Thomas, but I would rather not have a retarded brother. I’m sorry, Mom, but I just wouldn’t.”

He wipes his nose on the back of his sleeve, then looks at me, brown eyes wide open.

“Mom, do you wish Thomas didn’t have Down syndrome?”

III. Hindsight

I sit at my desk, staring at my email inbox: a dozen or more messages from friends and family, responding to the birth announcement we sent last week.

I don’t want to read these. I don’t want their cheerful, hollow words about what a special family we are. I used to say those things about other people, about families with disabled members. They’re chosen, I’d say, all the while grateful that we were not.

I scan the list of messages. My eyes fall on the name of my high school friend, Ellen: sister to David, a grown man with DS. We haven’t seen each other much these past twenty years. But I clearly remember her brow, wrinkled with pain, the morning we sat close together, watching David play as a preschooler. “He’s so cute now,” she said, “but what will happen when he grows up?”

Her message reads, in part:

“I have no doubts that you will love and appreciate Thomas as he grows and develops on his own timetable. What a wonderful gift you have been given. I had the opportunity to have David at my house for most of the summer and fell in love with him all over again. (Crying now!) You are beginning on a journey with countless rewards and blessings. Thomas will touch so many lives and educate so many around him. Our kids are different because of David.”

IV. Two faces

The geneticist finds me at Thomas’s bedside in the NICU, nestled amongst a collection of monitors and tubes, bags and wires. I like this guy. He’s warm and pleasant, attentive, sincere. In fact, all the doctors and nurses have shown active interest in our family. They admire the children’s drawings we’ve brought in from home to hang by Thomas’s bed; they ask frequently if I have any questions or concerns. Wonderful people.

My guard is down as the geneticist inquires about Thomas’s progress. He asks about oxygen saturation, cc’s up the NG tube, bilirubin levels. Then, without warning, his face takes on the contorted look that often preceeds a loaded question.

“You seem to be handling this awfully well,” he says. “Too well, in fact. Are you sure you understand the diagnosis?” His eyes deepen with pity.

My gut burns; my cheeks burn. I get it now: They’ve been watching me. The nurses and therapists, residents and specialists. The social worker that’s checked in with me regularly — she’s in on it too. I envision them huddling together in the hallway. Have you seen her cry yet? they ask each other in hushed tones, wondering when I’ll crack.

I wonder the same thing.

V. Cause and effect

From my spot on the couch I can hear my sons’ animated voices rising up the stairwell. Ben and Andrew, the little brother by two years, are in the family room playing consecutive rounds of that “create-an-insult” game beloved by elementary-age boys. The volleys are predictable: Andrew comes up with a modern take on “You stink like rotten eggs,” then Ben counters with something like “You play with dolls.” I consider hoisting myself off the cushion and charging down there to break up the party. Or at least, hollering a few choice words down the stairs.

And then I hear Andrew’s giggling retort. “Oh yeah? Well, you have Down syndrome.”

I stay on the couch.

Minutes later my cheeks are still stinging from the slap of those words. Andrew, such a tender-hearted child. Where did this ugliness come from?

And then I remember what we told the kids in our patched-up attempt at a family council: Thomas will likely take longer than they did to learn certain things — walking, talking, reading. I remember the sober looks on their faces. Our school-age kids have all been stars in their respective classrooms. Each is well above average in academic skills; a couple are deeply gifted. And they know it. They’ve seen themselves finishing work way ahead of the other kids; they’ve heard themselves answering questions that stump the rest of the class. We haven’t pressured them to perform, at least not knowingly, but we have praised them for their talents. Voila! A simple logical inference, obvious to any eight-year-old: if learning quickly is good, learning slowly is bad.

I didn’t see this coming.

I sink deeper into the couch cushion, lightheaded. I wish, desperately, that I could rewind. That I could live a thousand afternoons over again, when the children came home with their tales of aced spelling tests and math triumphs and advanced reading groups. I picture myself holding their report cards and opening my mouth to say the right thing. But I can’t hear the words.

VI. Pilgrim

Thomas relaxes in the crook of my arm. Seven weeks old, finally home from the hospital. We’ve cleared a corner of my bedroom and filled it with a bassinet, a rocking chair, and a parade of oxygen tanks. I rock him slowly, taking care not to compress the oxygen tubing which trails to the floor. His eyelids flutter with approaching sleep.

I say this reluctantly, but I must say it: He doesn’t belong here.

I know full well the fight song of parents of children with disabilities: My kid’s just like yours. But I can’t deny the evidence. The presence behind his slanted eyes. The invisible light that shimmers from his lips and fingertips. He is other-worldly, foreign, a stranger to things of this earth. If he were to disappear tomorrow, I would have no right to fuss, no ground to stand on as I petitioned the Universe.

You have no right to demand that he stay, the Universe would say. You know he’s just a traveler.

His expected life span is 30 percent shorter than mine. We are, statistically speaking, destined to depart right around the same time. But I consider myself warned that he may be gone long before that, long before I’ve had my full share of tomorrows.

VII. Quality of life

I stand in the hallway that connects the basement bedrooms, where my three oldest kids sleep. They should be asleep now. Emotional talks can be treacherous at this hour. But after hearing Andrew’s prize put-down, I know the greater risk is not talking. A four-way conversation in which none of us can see the other’s faces. It’s better this way.

“Thomas might not be as talented as you are in reading or math,” I begin. “But he might. Everyone has gifts, things they’re extra good at. ”

I can hear them listening.

“As Thomas grows up we’ll find out what his gifts are. Maybe his gifts won’t have anything to do with schoolwork.” At a loss, I fall back on the stereotypes about people with Down syndrome. “Maybe he’ll be extra cheerful, or helpful, or loving.”

Silence. And then a lone voice, floating out from one of the bedrooms: “You mean, he might be good at the things that really matter?”

VIII. Biopsy

Am I sure I understand the diagnosis? Actually, I’m sure I don’t.

My grandmother calls one afternoon. She’s just seen Thomas’s photo, an amazing shot captured by one of the night nurses: He lounges on his side, one hand tucked behind his head, wise eyes open. Tubes and wires hidden under a white drape. Pink, wrinkled perfection.

“He’s darling,” she says. “He doesn’t look like there’s anything wrong with him!”

My mouth opens, then shuts again, dumbfounded. I’m tempted to make a snappy retort, something like, “That’s because there is nothing wrong with him.” Another fight song, one I wish I could sing. But I can’t.

I’ve heard this song pulsating behind the text of the websites and blogs I’ve been reading, written by parents of children with DS. One mother of a child with DS described his extra chromosome as a benign, matter-of-fact part of him, like his ethnicity or his hair color. I thought that was a beautiful way to convey her acceptance. But I couldn’t quite swallow it or claim it for my own. I have nurses visiting the house, support groups hoping I’ll attend. I have a stack of solemn literature on my nightstand. As far as I know there are no special programs in place, no national foundations, no monthly meetings for parents of children with brown hair, or Asian heritage.

I don’t view Thomas’s extra chromosome as an insignificant aspect of his genetic makeup. It holds consequences, some of them welcome, some of them frightening. Like realizing my grandmother is studying my baby’s face for signs of disability, and that she’s rejoicing over finding none. And realizing that I am doing the same.

IX. Foresight

I’m rocking in my chair next to Thomas’s bassinet. Elizabeth, twelve years old, walks in, just returned from a trip with her church youth group to a care center for the mentally disabled. I freeze when I see her face: pale, empty, shaken.

I immediately snap into wise-counselor mode, asking gentle questions about her experience, attempting some damage control. I can only guess at the connections she has built between what she saw there and what she sees in her future. I tell her it’s natural to feel uncomfortable around people who behave and communicate in ways we’re not used to.

“Did it get easier once you were there for awhile?” I ask, hoping for a happy ending.

She gives a fake half-smile. “Yeah, I guess.”

Then suddenly, her face brightens. She begins to recount a funny story about Ed, one of the young men in the youth group. “It was hilarious, Mom. We were sitting there making these snowmen out of paper plates . . .”

I don’t hear much after that.

After the story is told, and Ed’s wit confirmed, she leaves the room. I sit very still, hands on the curved wooden armrests on my chair, toes pushed into the worn carpet. I can’t blink or swallow. I can barely breathe.

It was a lovely image — awkward teens making crafts with a disabled adults. Lovely. Until I imagined Thomas in the chair next to Ed.

X. Honesty

It’s bedtime. I carry Thomas with me as I make my rounds to the children’s bedrooms. Ben’s light is out; he’s curled under a fuzzy blue blanket, waiting for me. I perch on the edge of his bed and lay Thomas across his chest.

“Hi, Thomas,” he croons, rubbing his brother’s back. We sit there in the near-dark, the three of us, silent. Thomas’s little head bobs as he studies Ben’s hairline. Their eyes shine in the faint light coming through the window.

After a few minutes Ben lets out a big sigh of sleepy pleasure. “I’m just SO glad he’s here!” Another big sigh. “I mean, he has a condition, but who cares?”

XI. A Distilled Manifestation

My dear friend Jen and her four kids come for a visit. Her son Jake has autism; he’s ten years old. We’ve been friends for nearly that long. And all this time, I’ve been glad Jake is her child and not mine.

Our children, combined, now number eleven. They clatter downstairs with shouts of laughter, except for Thomas, who’s sleeping in my bedroom. Alone in the living room, Jen and I choose our spots to collapse in — she takes the armchair, I take the couch. Then she looks at me. “How’s it going?” she asks.

I’ve been asked this question dozens of times recently, but I’ve never really answered it. How could I explain the mass of contradictions pulsing in my cells? But here and now, at last, I’m ready to try. I begin slowly, tentatively, discovering my feelings as I speak them.

I don’t get far before a stony truth pushes its way up my throat, demanding air. I have a confession to make.

“When I planned birthday parties, I used to wonder if I needed to get Jake a party favor,” I said. The words, heavy with shame, roll off my tongue and onto my lap. “I’m so sorry.”

Jen is quiet.

“It’s okay,” she says, finally. “Sometimes I’ve wondered the same thing.”

My words flow now, with relief and gratitude. Jen listens while I talk about blessedness, early death, paper-plate snowmen. She understands, with an understanding that comes from treading this bittersweet territory. She nods while I anguish over labels and stereotypes and gifts, given or not. She knows a mother doesn’t love because her child reads, or runs, or smiles, or helps, or does anything at all. A mother loves because her child exists.

“I don’t have a problem sending my other kids out the door in the morning,” Jen says. “But every school day, after Jake gets on the bus, I watch it drive down the street until I can’t see it anymore.”

It’s really not a good time to cry, given the fact that there are ten kids running rampant through the house. Ten kids running and laughing, one kid sleeping. Two moms weeping. Outside, six billion of us doing the same, living and hurting and loving in spite of it all.

None of us belong here. None of us are of this world.

29 comments for “Bitter, Sweet

  1. “You mean, he might be good at the things that really matter?”

    That touched me.

    Thank You.

  2. This is a sensitive topic for me.

    One of my brothers was born mentally retarded. My parents cared for him daily until his death. I think it was a great shock to them — it probably wasn’t part of the bargain they thought they’d made with life. They had opportunities to put him in a home — they resisted, even though it would be a tremendous sacrifice to keep him. Fortunately, Dad had chosen a career that would enable him to take the time to properly care for my brother — and the rest of us (big family). The flip side was that his career that provided him with so much time necessarily meant that they lived away from family, which only made it harder on them. Mom and Dad sacrificed a lot of opportunities in order to care for him. He never walked or talked, but he could communicate. Mom and Dad were open about his condition, even though I know it made a lot of people uncomfortable. We were comfortable as little kids using the terms “retardation” or “handicapped” — none of the limp “he’s different” expressions for us. At Church, he couldn’t go into the nursery or primary, so Dad pushed his wheelchair around the halls when he got too noisy for gospel doctrine. They spent hours caring for him. They spent hours in the ICU when he’d get sick. They had to deal with doctors putting predictions on his lifespan (and having him outlive them), again and again.

    I can’t say that I had the perfect attitude about it. I know that I felt many times like eleven-year-old Ben in the post — it was a struggle to always have to explain this to friends. And my parents didn’t hide it — my brother came to sporting events, activities, etc. He was front and center. We took him on vacations (except one, and my dad still feels very conflicted about that, 20 years later). We took him camping. He was part of our family.

    When he passed away, I remember people thinking that “oh, life will be so much easier on your parents.” And, it was — to a point. My mother could serve in certain leadership callings she just couldn’t do before that — and my mother is a gifted and talented leader who has influenced the lives of many people. But, I know she’d trade all of those things back in exchange for my brother being alive. I know it eats at my parents in their private moments.

    My brother has an autistic son. I say *has*, not had, even though their son passed away several weeks ago. Their son is still part of their family. I witnessed the way my brother and his wife — especially his wife — cared for his son while alive and I’m brought back to how my parents cared for my brother. It was special, it was dedicated, it was committed. Every single family decision was influenced by their unique family circumstances. My father made the comment that dealing with my nephew’s funeral was like reopening a wound that started with my brother’s death. Despite their grief — which remains deep and vivid — both my brother and his wife and my father and mother have a very stoic view that their sons are in better places and that they are grateful for the opportunities each of them had to have had these children in their care for as long as the Lord wanted them here.

    I think that they would say that they wished their children weren’t born with those health issues, but that they are grateful for the lessons they learned along the way.

    Much of what we call “service” in the Church is just so much paper-shuffling. I think the greatest saints among us are called to serve children with the greatest challenges. I still remember someone in the ward — a successful businessman, whom everyone liked and admired for his accomplishments and positions — taking me aside and telling me how much my parents’ example meant to him. That image is burned into my memory. I’d never before considered their service to be a great accomplishment; I had just considered it to be “what you did” (although, most people wouldn’t have done it as well as my parents). It opened my eyes as to how great a service they had been providing.

  3. Thanks for this; it was as moving as it was difficult to read. Oddly enough, I had a strange and somewhat disturbing dream last night about me having a newborn child with Down’s syndrome.

  4. Kathryn,
    What is there to say? Just this. While there will be many trials and challenges with raising this very special spirit you have been blessed with. The blessings will blow them away. I have an aunt with Downs who is now in her late 50’s.

    When she was born my grandparents were advised to put her in a group home as she would not live to age five. My grandparents immediately refused and have enjoyed the font of love that is Jill ever since.

    That is what Downs truly is, pure unadulterated love. Those wonderful kids know nothing but love, and hugs, oh to they love to give and get hugs. I grew up around Jill, I learned that while limited in intelligence and capability, there was no limit to the love and joy she brought to the family. And nobody walked into that house without being welcomed with a great big bear hug.

    Sure, I did not see the daily challenges I’m sure existed. But I know that my uncle has shared that when he learned his daughter (age 3) was Downs he was disappointed, but he was also thrilled. He is younger than Jill and has never known life without a Handicapped sibling, so he knew exactly what he was getting.

    It is a change of life from what you expected, but it really is an amazing experience. If you live in Utah, once he’s into his teen years, look for a Special Needs Mutual program. In Weber, Davis, and SL counties the programs are very strong, I assume the same for Utah county and possibly other areas of the state but don’t know for sure. In this Church youth program, your Thomas can work his way to Eagle scout even if it takes three or four decades (The BSA has developed a special needs program, and it doesn’t end at age 18). As well as enjoying all the fun activities that your other children will enjoy in the Mutual programs, but as his youth will really never end, neither does his participation in the program.

    Again if you live in north Davis county (I know they do it there they most likely do it in other areas but I don’t know for certain), have your bishop enquire about inviting the Special Needs Mutual to present a Sacrement meeting for your ward. In these programs, these special kids give short faith filled talks and sing beautiful music of praise. Then get to know their advisors, volunteer to assist with the program. It will be a valuable aid in preparing you for life with your son.

    And most of all, enjoy the tidal wave of pure innocent Love that has just entered your life.

  5. such a captivating story! how long ago did this happen? I’m not sure if I should picture you still holding a baby as you reflect and write about it. My oldest has different issues but many of your thoughts rang true and familiar.

  6. Kathryn,
    Thank you so much for this post. I have a son with a brain injury that occurred at birth, and even though I didn’t know in advance, I have gone through similar stages as you have. Some days are wonderful and some days are a struggle. Your words really resonated with me.

    queno, I also appreciate your post, because it gives me perspective from the other end. We don’t know when my son will die, but we know that his life will be short. I wonder sometimes how I will deal with it. In some ways it will be a relief, but I wonder, will I grieve all over again for what I have already lost?

    What I have the hardest time with is that there is no “doctrine on the disabled” in the church. No one REALLY knows what went on in the pre-existence. Did my son choose this? Did my husband choose this? Were we called to this? I can’t imagine agreeing to this…Everyone has ideas about the role of the disabled in the plan of salvation, but I have found very little written by the general authorities to address this issue. When we move into a new ward and tell the bishop about our son, they mostly give us a blank stare — nobody knows what to do or what to say. Then there’s my favorite Mormon myth that all the disabled people who have ever lived were the ones whose spirits were so noble and pure that they were the ones who escorted Satan out of heaven and Heavenly Father made them disabled because He didn’t want Satan to be able to tempt them. Is this in the scriptures?

    I’m not trying to sound angry and/or bitter. I have come to my own peace with my son’s condition and have gained a different perspective on the gospel because of it. I don’t see myself as especially noble and I don’t see what I do for my son as service per se — it’s just what anyone would do for their child. You take care of your children, no matter what. I also don’t believe that having a disabled child is a blessing — who would wish that on their children? But I DO believe that God gives you compensatory blessings and insights that you may not have had otherwise.

  7. First of all, thank you to each of you for your feedback.

    cchrissyy (8):
    Thomas is now 21 months old. This essay started as a blog post I wrote when he was about 4 months old. I’m now writing a memoir about my first year with Thomas.

    Dirk (6):
    Thank you for your supportive comments. This essay captures my initial feelings about the diagnosis, but not my current state of mind. Our family is completely delighted to have Thomas with us. I’d have to say he’s the highlight of our home. We enjoy him every day!

    And thanks for bringing up special needs mutual. I have been learning about that and I’m excited about it.

    I do want to point out that people with Down syndrome are human, just like the rest of us. Thomas does indeed have an extra helping of warmth and affection for his fellow mortals, but he gets angry, sad, scared, and frustrated just like my other kids do, just like I do. Of course I understand you had only the kindest intent with your remarks. And you are certainly not amiss in pointing out how enjoyable people with Down syndrome can be. Thank you again for commenting.

    John (#5):
    If the dream ever comes to pass, look me up.

    queuno (#4):
    Thank you so much for sharing your experience. It can be a tricky thing to acknowledge the difficulties while also affirming the tremendous blessings of having a child with special needs in the family. Both sides to the coin are very real.

    I so admire families like yours, who rise to the occasion and give diligent, loving care to those with special needs. My condolences for the loss of your nephew.

    I have a slightly different take on your comment regarding parents being chosen for particular challenges. When Thomas was born lots of people told me “special children come to special parents.” I appreciated the vote of confidence, but I knew Thomas didn’t come to my family because of any extra capability on my part. In fact, I knew just the opposite was true: I had a “special need” to learn what he could teach me.

    I think great challenges come to all of us in one form or another, and we have the choice of resisting, or submitting to them (internally as well as externally). Your family, from what you’ve related, is a beautiful example of the latter. And this is greatness. Whether they were predisposed to greatness is obviously not for me to say, but I’m quite certain I was/am not. But I think this is what makes many parents of children with special needs stand out from the crowd: they’re ordinary people who have allowed life to transfom them, making them extraordinary.

    And I believe all of us have this opportunity.

  8. Xena (#9),

    I posted my previous comment before I read yours.

    In my essay I mentioned a feeling of foreboding that Thomas might die young. One of the hardest parts of my first year with him was admitting to myself that part of me would be relieved if he died. I wondered if I had created that feeling that he might die young, just as a psychological defense mechanism–a fantasy. As my fears about being his mother abated, my obsession with the early-death feelings lessened somewhat, but they do remain in the background. I don’t know if this means part of me still feels it would be a relief to have him gone.

    You and I understand, logically at least, that acknowledging this facet of feeling does not in any way lessen the other facets: the love, the gratitude, the fear of loss. But it’s still disconcerting, isn’t it?

    I’ve heard that anecdote about the premortal existence, and while I’m glad it brings comfort to some people, I don’t turn to it for comfort myself. I have no idea if it’s true. It’s not in the scriptures or even in any semi-official resource. I’ve never seen it printed (except in emails, which doesn’t count).

    I reject the notion that people with disabilities are different, in the eternal sense, than the rest of us. But I do think that those whose disabilities are severe enough to release them from accountability to law can certainly seem different. When I interact with disabled individuals who manifest extraordinary degrees of love, cheerfulness, acceptance, and affection, I tend to think that I’m catching glimpses of the divine child of god that is within each of us. Many of us have a good deal of our godliness shrouded by our natural man, but I believe it’s in there. My son reminds me of that.

  9. Kathryn, what do you think has made the difference between your acceptance of your disabled son and the many mothers, across time and space, who abandon, abort or kill their physically imperfect children? Human mothers have a long history of withholding attachment from infants who represent a threat to their own or their other childrens’ wellbeing. The protective maternal instinct, for all its astonishing power once established, is never guaranteed to any particular infant, and those that will probably never grow to adulthood and reproduce are especially vulnerable to neglect and abandonment. Why is it, do you think, that you and other mothers are able to accept and nurture your disabled children, whereas other mothers are not? Is it an inherent moral advantage? Does it have more to do with the abundance of resources in your environment? I’m interested in your views on this question.

  10. Great post, Kathryn. I especially appreciated these thoughts:

    I do want to point out that people with Down syndrome are human, just like the rest of us. Thomas does indeed have an extra helping of warmth and affection for his fellow mortals, but he gets angry, sad, scared, and frustrated just like my other kids do, just like I do. Of course I understand you had only the kindest intent with your remarks. And you are certainly not amiss in pointing out how enjoyable people with Down syndrome can be. Thank you again for commenting.

    A few years ago I had a job working with the developmentally disabled. It was both very difficult and very rewarding. And a friend with an intellectual disability (I never knew what, exactly, her diagnosis was) whom I met in a former ward died quite suddenly earlier this summer. I’ve thought a lot about her, lately and about the people I worked with that I got particularly attached to, wishing we could find a way out of the sterilizing angelic rhetoric in which we so often encase them–as you have here, so tactfully. I valued–and value–my friend as much for her stubbornness, her straightforwardness, her idiosyncracies, her attachment to what she loved and to her own preferences regardless of what anyone else thought, her willingness to speak hard truths. I didn’t value her because she was an “angel” who emitted ceaseless waves of love and light. (I don’t know any angels, and if I did, I would not wish to spend time with them.) I valued her for her salty character traits at least as much as for her sweet ones.

    I miss her.

  11. I didn’t value her because she was an “angel” who emitted ceaseless waves of love and light. (I don’t know any angels, and if I did, I would not wish to spend time with them.)

    I agreed with everything else you say, but here I think you risk throwing the baby out with the bathwater.

  12. Eve (13):

    Beautiful. Thank you.

    Have you read _Riding the Bus with My Sister_? If not, run, don’t walk, to the nearest bookstore (or nab it at Amazon). It is one woman’s memoir of her relationship with her sister who has mental retardation. It’s an amazing story, beautifully written, honest about the challenges and the joys, the salty and the sweet.

    Rosalynde (12):

    That’s a great question, and a tough question. There’s no way I can answer in a tidy fashion, so I’m just going to ramble.

    I had a knee-jerk rejection response to Thomas, but it was tempered by several things: my determination to appear strong, my gospel perspective, and the spiritual experiences I had had regarding Down syndrome and this pregnancy.

    When I read Beck’s _Expecting Adam_ I had an overwhelming emotional/spiritual experience, completely unexpected, unprecedented, and unexplainable. In retrospect I see that reaction as intuitive–part of me suddenly knew I would have a child with Down syndrome some day, and I was flooded with some of the attending feelings. (I know many women have had strong reactions to that story, and I’m not meaning to suggest there’s only one cause–but mine went beyond weeping, beyond telling my friends “you’ve gotta read this.” It was huge, and multi-faceted.) I had other intuitive “pokes” as well. And during my hospitalized bedrest while pregnant with Thomas, I had a very powerful revelation–not about Down syndrome per se, but a warning/assurance that big challenges were about to grind me into the carpet, and that all of it would work for my good. I _felt_the good for a few precious minutes. The memory of it helped me hang on once hell broke loose.

    BUT these experiences did not spare me from some very painful feelings, feelings I was ashamed of. It was like there were two realities–one gorgeous, one horrible. I knew the gorgeous one was real, but I couldn’t access it very often. I knew the horrible one was temporary, but I couldn’t escape it. In some ways the tension between the two made things even more difficult, because I thought the gorgeous should preclude or erase the horrible. I was very hard on myself. At the same time, the gorgeous did give me hope for the future.

    I did believe, even from the start, that things would be beautiful for me and my family in the long run, but I had no idea things would be so beautiful so quickly. And this is why women with a prenatal diagnosis who are not categorically opposed to abortion are at such a sad disadvantage. (Same goes for women who make any decision–institutionalization, adoption, etc–during that terrifying period immediately following the diagnosis.) I will be posting about this particular issue soon (Monday I think) so I would rather not go much further on this topic in this thread. But I very much appreciate the questions.

  13. Kathryn (and Xena) –

    My brother and his wife have been dealing with the issues of “so how is life now that he’s gone?” Certainly, their life is “easier”, logistics-wise, time-wise, etc. I know my nephew probably required as much care as the other children combined. I’m truly amazed by my brother, though, who, while deeply grieving his son, says that “We were just lucky to have been entrusted with him as long as we were” and “He was a special boy, and his life was different, and he’s completed his time here.” To be able to say that — and mean it sincerely — while still being able to acknowledge your grief is, is amazing and inspirational to me. Being able to have that perspective, to me, does not mean that you ever “get over it.” But it does make it a bit easier.

    I commented on my brother’s perspective to some non-LDS coworkers, who found his position callous and unfeeling. It’s amazing the perspective the gospel lives us — how else could you grieve the loss of a child and not go crazy? It’s hard to explain and understand the perspective without the guidance of the Spirit.

  14. queuno (16):

    To be able to say that — and mean it sincerely — while still being able to acknowledge your grief is, is amazing and inspirational to me.


    It’s hard to explain and understand the perspective without the guidance of the Spirit.


    Thank you again for sharing. That’s such a cheesy thing to say (“thanks for sharing”) but I mean it.

  15. Kathryn, thanks for the recommendation.

    BUT these experiences did not spare me from some very painful feelings, feelings I was ashamed of. It was like there were two realities–one gorgeous, one horrible. I knew the gorgeous one was real, but I couldn’t access it very often. I knew the horrible one was temporary, but I couldn’t escape it. In some ways the tension between the two made things even more difficult, because I thought the gorgeous should preclude or erase the horrible. I was very hard on myself. At the same time, the gorgeous did give me hope for the future.

    I’ve never had a child with a disability, but this is such a poignant description of so many of life’s hardships.

    My husband and I have struggled with infertility for years. Since I’m now 35, I’ve occasionally contemplated the fact that if we do ever have a child, our chances of having a Down’s syndrome child or a child with another disability are steadily increasing. If I were to face that reality, Kathryn, I think the first thing I would do would be to email you.

  16. Please do. Feel free to email me in any case. My contact info is on my website, which is linked to my name here.

    One of the most helpful things about loss that I’ve ever read was in Exponent II’s issue about grief, in an article called “The Courage to Grieve” by Mary L. Bradford. She said: “There’s an idea that if you’re a good Mormon, you can avoid feeling intense grief.”

    This very idea was what tormented me after Thomas was born. I was ashamed of my grief. I knew too much about the worth of souls and the value of adversity and the purpose of mortality and the promises of eternity to feel the way I did! Something had to be wrong with me.

    I think this same thing can happen in any situation of loss: We intensify our pain by denying ourselves the right to have it. And the death of a dream or an expectation can be just as painful as the death of a person.

  17. Beautiful and deeply moving, Kathryn.

    My choir teacher in high school was absolutely brilliant – intellectually and musically. He married another amazing musician. Their oldest daughter is also an incredibly bright musician. Due to genes they both carried unknowingly, and due to the inability of the time to diagnose potential disabilities, their other 4 children were severely emotionally and physically disabled.

    I remember vividly two things about this couple: First, after the initial reaction of shock, disbelief and mutual blaming, they united in a way that was indescribable. He became a Bishop and then a Stake President, all while teaching full-time and actively helping with their children – and eventually caring for his wife as her health failed as her own disability became manifest. She was an incredible source of comfort and strength to all of “their students” who needed an ear to listen and a shoulder to cry on. When I hear the phrase “forged in the furnace of affliction” I automatically think of them.

    Second, I remember a fellow student being outraged when this teacher shared a joke with us that he had heard from another parent of a disabled child. He looked at her and said, with a hint of wistfulness and a trace of tears, “Sometimes, if you don’t laugh, you cry.” I didn’t understand it fully at the time, and it took caring for a son with diabetes (our family’s warrior, Diabeticus) and a foster son (our children’s brotha from anotha motha) with lots of emotional issues to really appreciate that comment.

    Again, Kathryn, thank you for this post.

  18. Kathryn, I am so impressed with the level of honesty in your writing. People rarely talk about the fear of potentially having a child with a disability. I also don’t like all of the platitudes thrown out there to supposedly help one cope or understand. I liked your idea of parents of children with special needs standing out from the crowd, as ordinary people who allowed life to transfom them, making them extraordinary. I have definitely found that to be true of many parents I know in similar circumstances.

    The image of you and your friend weeping upstairs while your kids were playing was wrenching.
    Thank you for this beautiful essay.

  19. Ray, thanks for these stories. Very touching. And I love “brotha from anotha motha”! A sense of humor is sometimes all that we have to hang on to.

    Lupita and cchrissyy, thank you.

  20. In other things I’ve read, the parents’ greatest fear is that the disabled person would outlive his or her parents and siblings. An interesting double-edged sword.

  21. Thanks, Alison and Emily.

    z–I’ve had that fear as well. It’s not as strong of a concern issue right now, since Thomas is so young. But I imagine it will be my chief worry in later years.

    DKL–I’ve enjoyed George Will’s writing about Jon very much. He wrote a publicity blurb for the Down syndrome anthology I edited, and I felt honored indeed. Thanks for this link.

  22. Thank you for this beautiful post. It reminded me of the many ways in which my life has been touched throughout the years by people with different abilities. I have the deepest respect for parents and others who love unconditionally and give so much of themselves day in and day out.

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