Finding Me - Part 1 of 4

Finding Me

Do you think that an experience
like one such as Jess
has to change your entire life?
I mean - like change your personality?
I feel like I can't get back to "the old me."
But maybe the old me doesn't exist
anymore.

-Journal excerpt from
April 13, 2006

June 18, 2005
Saturday

It really was a beautiful day, as far as weather goes. The grass was thick and green, the sky clear and breathtakingly blue. The warm sun made my skin tingle until the soft breeze brushed it away. I suppose that's how most June days are in the valleys of Utah.

Brian and I went up to the cemetery a little before the rest of our families to meet the hearse. We drove up and I saw folding chairs covered in a soft, green, velvet fabric facing the tiny plot of land we had purchased days before…a green mat lay over a small hole dug from the earth…a few beautiful flower arrangements lent a sweet fragrance to the air. It felt a little like a dream; a terrible, twisted nightmare in a confusingly beautiful setting.

I folded my arms gently across my aching chest. My tender breasts, swollen with milk that would never be expressed, covered my broken heart. This is for us, I thought.

My heart had felt sorrow before. Just as an unstretched balloon feels tension at the lips of a child. I wonder if that balloon knows of its potential, if only a stronger pair of lungs stood behind it. And, once the balloon expands past that threshold for the first time, does it fear it’s going to burst with each new breath? Does it realize, too, that once it’s been stretched to capacity it can never entirely go back to the way it was before?

It’s been six years since that day. Six years of remolding my personality to fit around that single experience. I knew at the time that something was changing inside of me…it was the permanence of that change that took me by surprise.

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May 20, 2005
Friday

The relationship I have with God has always been a strong one. Of course, it ebbs and flows along with most other things in my life, but I’ve never questioned His existence, or His desire to direct me in my life. Perhaps that’s why I wanted a priesthood blessing so desperately the night we first learned that all was not well with the baby. It was much too early to understand the severity of the situation, but I still knew that there was peace to be found through the keys of the priesthood.

“The Lord’s will will be done, and I bless you with strength as you come to learn to accept what that will is…

…He wants you to know of His deep and personal love for you…

…This was planned from the beginning…

…There are lessons you will learn through this that you will not learn any other way.”

That night I wrote in my journal that the blessing had been ‘unnervingly comforting’. It was a feeling quite different than what I had been looking for, for I was looking for a reassurance that all would be well. Yet the blessing still brought undeniable peace; if not in that moment, most assuredly in the weeks and years to come. I began to recognize the Savior as my ally. And as my baby’s health deteriorated and my trial slowly isolated me from the understanding of everyone around me, He became my Everything.

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May 25, 2005
Wednesday

My feet were tucked underneath the heavy blankets at the foot of my hospital bed. It was warm in the room, yet they still felt cold and clammy. My fingers traced the small bulge in my abdomen; I couldn’t help but fixate on the movement that was going on in there. He seems so strong, I thought to myself. The reality of the situation weighed heavily on my shoulders. The previous week I had been laughing with a friend at how small I was for being six months along. That was before I found out my small size was because there was no amniotic fluid. I didn’t know, I silently explained again. I didn’t know you were sick.

A knock at the door barely broke my trance. I knew the nurse couldn’t hear me very well from the noisy hallway unless I yelled, and I didn’t feel like yelling, so I stayed silent and figured she’d come in anyway. Just as I suspected, the door cracked open; but instead of a nurse, a familiar face peeked in. “Lindsay?”

A little surprised, I said, “Hey,” and sat up more in the bed, “Come in.” It was a friend from church. She sat down in the chair across from my bed and asked how I was doing. After chatting for a bit, she told me that she had lost a baby, full-term, many years earlier. She told me her story, some of the feelings she had been through, and gave me some experienced advice. At the time, I still had strong hopes that my baby would survive…and months later, I wished I had listened a little more closely that day. Even so, I did remember one piece of advice, and it turned out to be the best piece of advice I received: allow yourself to grieve.

That night I sat alone in the dark room and stared at the same spot on the wall for over an hour. I thought about the baby, about my husband and daughter, about my mom and dad, about my Savior. The thoughts tumbled and tumbled around in my head until they all jammed together and froze my mind into an aching numbness. I didn’t know how I felt. I didn’t know what I thought. It had been a terrible day full of tests, more tests, ultrasounds, and more unsettling answers. I could hear the noises of a hospital that never sleeps just outside my door, but I felt strangely isolated. Alone. Hollow. And utterly discouraged. My baby was sick. His left kidney was missing, and his right one wasn’t functioning properly. His heart had a hole in the wall separating the left and right ventricles, causing it to work harder than it should. His skeletal muscles were small, his heart muscle big, and his lungs underdeveloped.

Somewhere, I found the strength to turn over and pull my knees up underneath me. I clasped my hands together and closed my eyes. But words wouldn’t come. How do you ask for something when you don’t know what you need? I don’t know how long I knelt there, silently willing my mind to pray, but after a time I succumbed to my lack of words, opened my heart, and whispered one pleading word to the heavens: help.

The answer was immediate, unmistakable, and beautiful. It felt as if the Savior had entered into my soul to cradle my broken heart with his own hands. I cried as hard as a child that night as I felt the love of my Father encompass me so completely. When there were no tears left, I lay back down on the bed and hummed primary songs to my baby. Just before sleeping, I opened my journal and wrote:

“Realistically, things aren’t looking too good for the baby. But there is still hope… As far as Brian and I go, we’re doing alright. Yes, there have been many tears from both Brian and me – but I still laugh more than I cry. The only time I truly cry is when I’m by myself pleading with the Lord and I’ve done a lot of that lately. I know that this was planned from the very beginning. I know that I’m being taken care of and that this little baby is in the Lord’s hands right now. My faith has doubled, and then tripled, and then quadrupled over the course of these five days. I KNOW this baby will live if it doesn’t interfere with the Lord’s eternal plan. No matter how serious the problems are, I know the Lord can create a kidney, or fix a heart, or both.

If he doesn’t do it, then there’s a reason.”

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June 3, 2005
Friday

“Best case scenario,” the doctor explained a couple weeks later, “is that we get you to 33 weeks and then deliver the baby. His lungs aren’t maturing very fast without the fluid, so it could take even longer than that before he could survive outside the womb. If the delivery goes well, we’ll try to keep him alive using modern medicine until we can find a kidney transplant for him.” He looked into my eyes and lowered his voice a little. “Do I think that will happen?” he asked, “No. I think that over the course of the next one to three weeks, you’ll start to feel his movements weaken until you’ll come in for your weekly ultrasound and we won’t be able to find a heartbeat. I’ve learned in my profession never to say never…but, I’m really not sure there’s even a small percentage of a chance…” His words trailed off, but his meaning was clear. I felt the gentle pressure of Brian’s hand squeeze my own.

The doctor passed a box of tissues into my hand when he saw my eyes fill. “Okay,” I whispered. “Thank you for you honesty.”

It’s what I had wanted for two weeks. Honesty. It was obvious that the doctors had been talking to one another about us…we just didn’t know what they were saying. It hurt somewhat to have my mind fill in all the blanks and imagine the doctors staring at the ultrasounds with discouraged faces, shaking their heads in hopelessness.

The doctor stood up to leave the room and I raised my eyes to the resident who had been silently observing in the corner. Her face was contorted in concern, her eyes rimmed in red. She moved to follow the doctor out of the room and as she passed by me, she placed her hand on my knee. “I’m so sorry,” she said. Her eyes held tears. Weeks later, it was in remembering her raw emotions that I found the permission I strangely needed to begin grieving.

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Just when does a spirit enter a body?

It had never bothered me before – this unanswerable question – for the only place I heard it discussed was when abortion was being debated. Since abortion doesn’t feel good to me at any phase, I chose not to stew over the question whose answer didn’t seem to matter.

But now it bothered me. It consumed me, actually. In my mind, the question chased itself in circles during the quietest hours of the night. Throughout my life, my religion taught me of a loving God who would make all things right in the end. It also whispered comforting words about the connection that can be felt among spirits, offering reason to the ache and loneliness I felt when I imagined life without my unborn son. But my background in biology and embryology reminded me that sometimes two cells that are designed to become a human body simply don’t divide correctly and, instead, become a mass of confused, jumbled up cells. Was this the case with my baby? And, if so, would the Lord still grant him a spirit? It became the central topic of my endless prayers.

I did not want to name a spiritless body.

I did not want to bury a body that would not rise in the resurrection.

So…?

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June 5, 2005
Sunday

I cried all the way through sacrament meeting that first Sunday in June. The baby hadn’t moved all day and, now that he was moving again, my heart pleaded for his kicks to come harder. But they remained soft. So soft. Too soft. My mothering instincts pulled inside me, wishing me to rock him, to stroke his tiny head, to sing to him. Help him! they screamed. Help him get through this. Instead, I could only stroke the skin of my own arms, rock my own body, and pray to God that my little boy wouldn’t feel alone.

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June 7, 2005
Tuesday

My heart smiled every time I heard her laugh. McKenzie chased a giant balloon around the room, her little 16-month-old legs barely keeping up with its flight. Every time she touched it, the balloon went soaring back into the air and a new rush of giggles escaped. She was my sunshine. She awoke me at the same time each morning, needing food, attention and love. She needed me to be myself, and so I was. Even so, she knew there was heaviness in the air, and somehow she felt she could lighten it. She pulled silly faces; kissed my cheeks; sang her favorite songs; and even tripped on purpose once, just to make me laugh. I felt mostly normal when she was awake, and because of it, I declined most offers from friends to take her for the afternoon.

The balloon bounced off of my head and I pulled a funny face for her. My smile was real in response to her delighted laughter, but there was no ignoring the painful undercurrent of worry that had occupied me since I felt the baby move last. It had been almost 24 hours.

As McKenzie ran, chasing the balloon, an unexpected, strange and beautiful feeling started in my belly. In just a few seconds, the feeling had spread to my heart, filled the rest of my body, and spilled out across the room. I turned my head and almost expected to see another child with me, for the feeling gave me an unmistakable assurance that I was the mother of two children. Though I saw nothing with my eyes, something in me felt him. The feeling was not fleeting. It lasted for five full minutes and by the end my heart had been stretched to make room for the love that poured in for my new child. I had been given an incredible gift. It was the answer to my prayer, and we named the baby Jess Samuel, meaning ‘a gift from God.’

I never did feel him move again. I like to believe that beautiful feeling was the moment he passed on, and Heavenly Father allowed his spirit to linger for a few minutes to speak with mine before he left.

Just hours later, the phone rang and an apologetic doctor gave the final diagnosis. Jess had a disorder called Trisomy 9. He had three copies of the ninth chromosome in his cells, opposed to the normal two. “I’m so sorry,” the doctor said in a quiet voice, “I hate delivering bad news… I’m so sorry.”
“It’s okay,” I responded.
“This disorder…it’s not compatible with life.”
As I processed his words, a faint sense of relief and calmness messed with my otherwise distressed soul. The strong branch of hope I had been holding on to for three weeks had been slowly whittled away until it was not much thicker around than a strand of hair…and no stronger either. As I released that tiny, remaining strand of hope, I felt my weary heart relax.
“It’s okay.” And I was surprised to find that I meant it.