About two years ago, I started trolling around various LDS blogs.  Some were interesting, some were funny, and some were heavily doctrinal.  There was one author I came across a number of times, and I was impressed with a number of things about her:  she used her full name (a rarity in the world of anonymous posting), she was intelligent, articulate, and sensitive, and she had a disabled son.

As the mother of a disabled son myself, I was immediately intrigued and sought out her personal website.  I spent an evening reading her blog and weeping.  Here was someone who thoughtfully and intelligently articulated exactly the feelings that I had but was unable to express in such a thoughtful and intelligent manner myself.  Over and over as I read, I thought, “YES!  I feel exactly the same way!”  I never realized that there was anyone else out there, LDS or not, whose experiences mirrored mine in so many ways.

Overcoming my fear of reaching out into the unknown, I emailed this woman who was still a stranger to me – Kathryn Lynard Soper – and told her how much I appreciated what she had written.  She embraced me across the miles with kind words and an understanding heart and invited me to become part of Segullah.  Since then, we have become close friends sharing long emails and phone calls.  I look forward to meeting her face to face for the first time this July.

Kathryn’s book “The Year My Son and I Were Born,” is a real-life, no holds barred, picture into the painful, exhausting, thankless, yet ultimately rewarding life of the mother of a disabled child.  As I read it, I again wept, feeling keenly her anguish, frustration, and spiritual questioning because I have experienced those things myself in my son’s year of life, and still do as he approaches his 7th birthday.  Thomas has Down syndrome, but this book speaks to anyone who loves a disabled child.

Reading further into her journey through Thomas’s first year, I realized Kathy tackles issues that many women, and LDS women in particular, face – depression, difficult ward dynamics, struggles within marriage, grief, unrealistic expectations of oneself, and the unattainable, mythological title of “angel mother.”  I felt further connected to her as she openly and honestly discussed her own problems and found ways to work through them.  I appreciated her candor and the fact that her book did not wrap up cleanly and neatly with all of her problems resolved in the end.  She was able to come to a peace within herself even though the difficulties in her life are still ongoing.  I would recommend Kathy’s book to all women – mothers or not, LDS or not – anyone who is struggling, striving, enduring, or grieving.

You can see a photo montage of Kathryn, Thomas, and her family here.  Read more about Kathryn’s book at her website, or order her book here.

Here is an excerpt from the first chapter of “The Year My Son and I Were Born”:

Drive-Thru Window
No. Oh, no.

My fingers froze on the laptop keyboard. A strange sensation welled up in my pelvis like a giant bubble. Slowly the bubble rolled downward and burst, soaking my maternity jeans and the woven hospital blanket.

The air stilled. I sat motionless, understanding what this meant, but not believing. It was 3 p.m. on my fourteenth day of hospital bed rest. The obstetrician stood at the nurses’ station signing my discharge papers; my husband Reed waited at home for my call. I had just e-mailed friends to tell them I was on my way home. Home, where I’d lie on the couch for a month until it was safe for me to move again.

But as the amniotic fluid continued seeping out of me, I had to believe the truth. I wasn’t going home. I was having a baby—ten weeks early.

Hand shaking, I reached for the nurse’s call button. Within moments the room filled with the brisk energy of pending emergency. The resident performed a vaginal exam by speculum and flashlight, not daring to touch my cervix. She had me summon Reed by telephone. My bed, transformed into a gurney, was pushed down the hall to Labor and Delivery. Two nurses helped me roll from one bed to the next, then began attaching all the high-risk accessories: blood pressure cuff, IV line, fetal monitor, heart and lung monitors for me. I turned my head to watch the paper readout uncurl from the contraction monitor: a flat black line at first, then a slight upward curve that peaked and dipped.

“Are you feeling that?” one of the nurses asked.

Yes. I was.

* * *

7 p.m. Reed stood by the delivery bed, holding my hand while I leaked tears and sweat into the sheets. The contractions had intensified from squeezing to wrenching. My bladder swelled with IV fluids, but I couldn’t urinate when I tried. As the pressure mounted in my pelvis I writhed on the bed in raw panic.

The nurse put her hand on my shoulder and asked if I’d like some pain relief before she inserted a catheter. “The urethra gets swollen during labor,” she said. “It might be hard to get the tube in.”

Twenty minutes later I bent over my bulging abdomen to receive a spinal needle. As I sat upright my head spun and my vision blurred. The nurse strapped an oxygen mask to my face. By the time my blood pressure stabilized and my bladder had been drained, the contractions had stopped, leaving me six centimeters dilated—a point of no return. The nurse hooked a bag of Pitocin to the IV pole and started a drip. Reed and I looked at each other in disbelief. After two weeks of doing everything possible to keep the baby in, he would be forced out.

Our son. We’d chosen his name already: Thomas Reed. In the ultrasound photos his face emerged in wrinkles of light and darkness, the landscape of humanity. He was due December 23. A Christmas baby.
But this was early October, not even Halloween.

After the nurse left, Reed slumped in the armchair. I curled on my side, facing him. The wall behind Reed had a sliding window—a drive-thru window, he had joked earlier—which led to the NICU. The last place we wanted to be. Two years before, our newborn son Sam had spent three weeks in a different hospital’s NICU, critically ill with lung failure, and I would never forget the grimness of that place. The doctors said Sam’s illness was a freak occurrence and that if we wanted another baby, we had every reason to expect a healthy birth. My prenatal exams and ultrasounds for this new pregnancy had all been normal.

But nothing was normal about giving birth at thirty weeks gestation. I knew the statistics. Chance of respiratory failure: one in three. Chance of brain hemorrhage: one in five. Chance of death: one in ten.

Reed and I were quiet. There was nothing to say. The only sound was the whoop whoop whoop of the baby’s heartbeat on the fetal monitor, a manic rhythm pushing all three of us into the future.