Keely Knudsen: 'Now is the winter of our discontent, made glorious summer'

Published: Thursday, May 9 2013 5:00 a.m. MDT

Keely Baisden Knudsen (provided by Cedar Fort) Keely Baisden Knudsen (provided by Cedar Fort)

Editor's note: This is an excerpt from "Choosing Motherhood: Stories of Successful Women who put Family First," published by Cedar Fort.

I am in the waiting room again.

It was nearly one year ago in this same building that I saw her for the first time. She was lying inside the transparent box that kept her warm and protected from the elements. Her legs were folded stiffly, creasing her new body in half, her sweet misshapen feet lingering permanently by her ears. She had an open spine then — one that had grown outside of her back as her body was forming itself in the womb. A team of surgeons had just enclosed the nerve endings safely inside her body, and fresh, moist wrappings protected the affected area. So she was on her side, my little girl.

All the time, those first several weeks, only on her side. The nerves pushed back inside her body were dead, with no real way to connect where they needed to go ... and that meant our little baby girl, four weeks early and six pounds total, had paralysis. As I gazed at my daughter inside the transparent box, I felt a steel in my soul, a confidence that I had never before known — she and I were going to make it.

"Choosing Motherhood: Stories of Successful Women Who Put Family First" is a collection of essays compiled by Lia Collings. (Cedar Fort) "Choosing Motherhood: Stories of Successful Women Who Put Family First" is a collection of essays compiled by Lia Collings. (Cedar Fort)

In the waiting room, there is a snack area. It’s stocked with peanut butter in small, round individual casements and graham crackers, two to a package. These snacks were my feast, once upon a time, and filet mignon could not have rivaled the manna that snack was to me then.

It was nearly one year ago — my husband’s birthday. We were dining at a restaurant in downtown New Haven, Conn., eating food so delicious that even though I had begun to have contractions fewer than five minutes apart, I stayed for dessert. I had already scheduled a C-section at a hospital four hours and several states away. This was not the time and certainly not the place that this was supposed to happen. We concluded the birthday dinner in reverie from the remarkable cuisine, and I informed my husband we ought to just swing by the nearest hospital and see if perhaps they could make these silly contractions stop.

I was admitted to Yale-New Haven Hospital. Within minutes, I was on the phone with the Children’s Hospital of Philadelphia, best in the world for babies with my daughter’s condition, and the hospital that had conducted our prenatal surgery trial. The consensus was stop the labor, if you can.

The lime from the ceviche still delighted my tongue, and little did I realize that the dinner at the restaurant truly was my last supper. The labor stopped (oh, true apothecary, thy drugs are quick), but only as long as the harsh medicine coursed through my veins. Each let up of the medicine led to a prompt return of the contractions. Three days later, I was still in the same local hospital, having consumed nothing but the not-delicious, not-satisfying, but certainly bladder-filling IV solution, and the decision was made to deliver her via C-section to avoid disrupting the large membrane sac of spinal nerves on her lower back.

We were wheeled into a sterile, large, echoy room. Bright lights lit the white floors, walls, and ceilings, and Bon Jovi’s “Living on a Prayer” blared from the radio. A large team of doctors and students shouted business-and-casual comments, dressed in blue-green surgical masks and with caps that reminded me of my Grandma Ruthie when she would adorn herself for a shower. My arms were to be outstretched to the side as they ripped her from my belly, and I pondered the final pose of my Savior as I lay there — my Savior, the one who had gotten me through this nightmare pregnancy, who would surely get me through all that lay ahead.

I didn’t see her face. I didn’t hear her cry. She made it to mortality and hung out for a good half day before I could set eyes on her. Others had seen her — my husband, for one, and many strangers employed by the hospital. But I hadn’t.

Hours after the delivery, I lay in the hospital bed, wired, desperately clinging to the lists of care I had researched concerning her condition. And now, enter stage right peanut butter in a cute, tiny little casement and two graham crackers in a shiny cellophane wrapper. Since my last supper, it had also been three days until I was made new again. When I ate the snack that the nurse delivered, I thought I had never tasted anything finer than those graham crackers and peanut butter. The Spanish food from the candlelit table for two paled in comparison at this delight, this rare treat, this food fit for a king. Peanut butter and graham crackers.

The nurse comes out to fill me in. Evidently, anesthesia has been administered to my daughter, and she’s just fine. Two incisions have been made in each of her heels, and the surgery has been under way successfully for the last 15 minutes. She expects to give another update in a little bit.

The graham crackers were a real theme. I remember snacking on them in the specialist’s waiting room when I had my appointment to learn why my AFP blood scores were so high. I consider food intake when I am not pregnant, but when I am, all bets are off. I am a cow, and I embrace that role. Food anywhere is an invitation to continue growing the belly beyond the necessary range. Granola bars and graham crackers were some real favorites, and that specialist’s office always carried the promise of such treats, regardless of whatever messy or downright horrifying news they had to tell you there.

I knew that place. I had grown to detest the very building. I would drive by it and consciously look away, or worse, erupt into tears if I got close enough to it. I was actively fighting the tears just entering that building to have the AFP scores checked this time around. I had a lump in my throat that caused me physical pain in my efforts to not crumble.

After all, the last time I had been to that building was when they told me my second child, Emma Hope, had died in the womb due to Turner’s Syndrome. I ended up laboring and delivering our dead baby, and the grief that it caused led me into new depths. I discovered crevices inside of me where the pain sank so deeply — places that I never knew before existed. You see, Emma’s body had been developing with her organs outside her body, and she had a 1 percent chance at life. But I had promised the Lord in the temple that I was good for it — that I would raise her and make whatever sacrifices were required of me to do so. I felt trusted by him to take on the grand challenge ... and then she died.

What a blessing that experience was to prepare me, as I ate the graham crackers furiously in the waiting room and tried to fight off the palpable memories of that intense grief and loss.

The specialist called me in. Spina bifida. That is what the doctor told me. Spina bifida. I took my planner out and grabbed the only piece of paper I could find and began scribbling as I shot questions his way. The man never looked at me as he spouted off descriptors such as paralyzed, wheelchair bound, depressed, high divorce rates for parents, learning disabilities, brain surgery, troublesome for siblings, and the list went on.

I looked up at him, frustrated. “But is the baby going to live?” The doctor paused. Then he stammered, “Well ... if you decide to have the baby ... there are no lung and heart issues involved in spina bifida. However, the quality of life is so challenged for these individuals that 95 percent of mothers carrying babies with this birth defect opt for therapeutic abortion.”

I zipped up my notes in my calendar and stuffed them into the bag with the cellophane cracker wrappers and made a beeline for the waiting room, straight through the door, then down the stairs, then out the sliding doors, into the parking lot, and into my car just in time for the hysteria and grief to completely overtake me. I spoke out loud, I remember, as I drove north on 95. But I have no idea what I said or to whom I was speaking. Perhaps I was praying. I couldn’t pick up my 1- and 4-year-old from the babysitter. I could barely breathe. I had to at least control myself before facing them.

I have a friend who lives around the corner from me. She is like a sister. She has experienced loss to its fullest and takes challenges on with analytic fervor and a proactivity that rivals the abilities of any world leader. I trust her with my life. I drove to her house. I ran to her front door, sobbing, rang her doorbell, and banged on the door, wishing I could see some sort of irony or humor in the drama of it all. I couldn’t. The door never opened, so I fell on the bench on her front porch in a heap and heaved my sorrow to whomever would listen. Mambo, the family dog, the one I had house-sat for years even before I was married, came to me in my need. She and I sat there in the elements, and she held me as I cried and comforted my soul.

The secretary calls out, “Wynter Knudsen?” (She pronounced it correctly — Danish hard K and all.) The surgery is complete, and the doctor will come out soon to give me the full update.

In our efforts to educate ourselves on the birth defect and our options, my husband and I became members of a study called MOMS (Management of Myelomeningocele Studies) which, I kid you not, took place at CHOP (Children’s Hospital of Philadelphia). And CHOPping MOMS wasn’t a misrepresentation of what the study offered: an intense in-utero surgery, which would slit the pregnant belly vertically to reveal the baby, sew up the membrane sac of the baby’s spine, then sew mommy back up, all in the hopes that over the following weeks, the elements would not further alter the function of the exposed membrane. We qualified, but we were randomized into the control group part of the study. Further research indicated there were no other options for the in-utero surgery in North America, but we did come across a doctor in Germany trying out a new procedure.

The flight to Germany was crowded, and my husband and I were not seated next to each other. I watched the rain fall to the pavement from my window seat as my tears mirrored the window’s trail of water. We had left our two children behind in the States in an effort to give Wynter the best chances at life. The surgery would have meant a four-month stay overseas for me, and she would have been born in Germany. The anticipation was unbearable for me as the plane began its descent to the Frankfurt airport.

Before the first full day away from our girls was complete, we had met our German doctor, received an impromptu ultrasound, and learned that his surgery was not recommended on our particular baby. In great Abrahamic relief, my husband and I enjoyed a second honeymoon in Germany and enthusiastically returned to the States. At this point, we felt we had done all we could do. Now, we would simply sit in Life’s great waiting room ... and eat graham crackers and peanut butter.

The nurse, who just left the chair sitting next to mine, lights up when she speaks about the angelic disposition of my daughter. Everyone does; this is no news to me. “I have never seen a sweeter little girl,” she says.

I was trying a new recipe one afternoon when I heard a sound that startled me. It sounded like choking. I dropped my culinary battle mid-scene and ran to my 4-month-old “with special needs,” who was purposely sequestered from my 2-year-old (who loves the baby and must demonstrate that love in short, brutish, physical spurts some might call attacks). The choking noise came again. I was no sooner jabbing my hooked finger in the baby’s mouth when I realized, stopping myself: she’s not choking, she’s laughing.

There was a smile of delight on her face, complete with Daddy’s dimples, and she looked up at me, this time finding great humor in my dramatic entrance — or perhaps the unexpected finger in the mouth — in any case, she took a deep belly breath and guffawed, shoulders rolling forward, the whole nine yards. She laughed. She laughed then, and she still laughs, harder than my other two girls, and more often. My nearly 1-year-old girl with spina bifida has a better sense of humor than the rest of us.

And so she has revealed her exceptional spirit to us. But this is not all: uncanny events have transpired in our lives since her birth. Many of the dreams on our lists have come true. Financial, career and artistic pursuits have gone through the roof. Happiness in our family has never been greater. I have even more joy and a heightened perspective of life. We have a new perspective on bodies and health and a new definition for what it is to be normal. Wynter makes me grateful. I am grateful in all ways, but, most of all, I am grateful that I get to keep her.

I am entering the long, sterile hospital corridor leading to Wynter, walking toward my daughter whose surgery was performed in hopes of her someday walking toward me. She is wearing yellow hospital pajamas, coming out of anesthesia slowly, groggily. Her two legs are molded in large, white plaster casts from her toes to her hips, and I realize that it will only take a roll of toilet paper to complete her costume for this evening’s Halloween party. She and I snuggle and stare at each other. Even though she is weary and spent, nothing masks the twinkle in her eye.

There will be countless times over my life that I will be sitting in the waiting room, waiting for Wynter. Next month, Wynter, her daddy and I will travel to the Children’s Hospital of Philadelphia (a trek we made about every 10 days for the first several months, which has now evened out to every three months or so) for a 1-year checkup. The doctors will examine her head (although I often think they’d best do that to us adults instead) to ensure she still shows no signs of hydrocephalus (miracle number one). They will examine her kidneys to see if they still function properly (miracle number two). They will also assess her cognitive development to determine whether she really is as smart and exceptional as we think she is, despite her condition (miracle number three). And her uncast legs, which by then should be fitted into new, tall, purple boots, will be examined to see if one day our little Wynter may, like those multicolored butterflies adorning the sides of the boots, indeed fly.

She makes my heart soar. She completes me in all ways. How much better my life is — how much better — because I chose to identify with the 5 percent of mothers who closed their eyes, took a deep breath, and plunged into the unknown. What a grand relief to know that I can, in a coming day, run to my Heavenly Father’s embrace, exclaiming, “I am so glad that I trusted you!”

I’m so glad that he trusted me.

Keely Baisden Knudsen is the mother of four and wife of Brian W. Knudsen. She graduated first in her class with a BFA from New York University. She has performed internationally in plays, musicals, operas and dance companies.

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