No one expects to lose a child. I certainly didn’t after two successful pregnancies and a third baby on the way. Jessica and Graeme would have a sibling. This child would complete our family. Everything would be as we had hoped and dreamed.
My dreams crashed through the floor after long hours of labor. I was rushed in for an emergency C-section because excessive amniotic fluid had impeded my daughter’s delivery. I was grateful for the procedure but had no idea the news in the recovery room would shatter my soul. “Rachel will die.”
The doctor’s words hung in the air while we took a breath. Then, he explained things further.
“Rachel has Thanatophoric Dysplasia, a chromosomal disorder that causes dwarfism. Babies with
this condition typically die shortly after birth due to respiratory failure caused by underdeveloped
lungs. Surgery cannot rectify your daughter’s condition. There’s no solution. She might live for a
day, maybe two at most.” Then, delivering a verdict akin to a judge lowering his gavel, he
pronounced a death sentence: “Make the most of the time you have.”
I pounded my hands against my husband’s chest and sobbed, questioning, “Why has this happened
to us? Why to her? Why would God give us a child only to snatch her away?”
My emotions had ridden an uncontrollable roller coaster, unprepared for the unexpected turn from
a routine delivery to an emergency C-section. I had envisioned embracing a healthy baby, only to
discover that Rachel’s life would be measured in hours, not years. I clung to hope briefly, only to be
plunged into the depths of despair.
My husband and I cradled Rachel close to our hearts, cherishing each precious moment. We held
her in our arms and caressed her hands and face, hoping that somehow, someway, death would
not return our gaze.
While capturing moments with her siblings in photographs, one image remains etched in my
memory — me holding Rachel, Jessica on one side, and Graeme on the other. The expression on
Jessica’s face conveyed the inevitable: death would rob her dream of being a big sister.
Rachel’s labored breathing left me breathless. As I looked into her deep brown eyes, I envisioned
milestones like her first day of school, first lost tooth, kindergarten, and graduation. I imagined her
in a wedding dress. The heart-wrenching realization that I would choose a burial gown struck me,
causing more tears to fall from my already bloodshot eyes.
My husband and I grieved privately once the guests had departed. Despite the limited time
remaining, we shared words of love and affirmation with our daughter. We expressed our deep
love for Rachel, emphasizing her beauty and how proud she made us. We spoke about God
infusing purpose into her life and the sorrow we would feel in her absence.
My husband escorted me from the nursery back to my hospital room while nurses attended to
Rachel. Gut-wrenching sobs rose from my abdomen, and my shoulders convulsed violently as if
someone were wrenching them from my spine. Through a veil of tears, I prayed, “God, please
reverse this situation. Spare my baby’s life.”
Anxiety gripped my mind as I wrestled with restless thoughts in the midnight hours. Do you want
to see Rachel again? Hug her once more? Do you really want to endure the agony of saying
goodbye once more? I knew it was the enemy speaking but had little resolve to do more than roll
over and try to sleep. Meanwhile, an unsettling determination to distance myself from my daughter
dominated my thoughts, urging me to withdraw even though there was a chance she might survive
the night. The ominous thoughts held sway, fueled by the sinister whispers.
The Gift of Time
Against all expectations, Rachel was alive the next morning while my heart was nearly as good as
dead. I refused to see her, despite my husband’s pleas for me to embrace the joy of another day
with her, acknowledging it might be her last.
Later that morning, a nurse urged me to read a pamphlet designed for parents facing the loss of a
child before, at, or shortly after birth. I glanced at it briefly to satisfy them and dismissed it like
unwanted junk mail. I rejected When Hello Means Goodbye with a firm “No thanks.”
Then, I sensed the familiar tug of the Holy Spirit. His still, small voice reminded me of His presence.
I remained unwilling to engage with Him or anyone else and was resolved to leave my daughter at
death’s door. My resistance didn’t deter my husband, the nurse, or the unwavering presence of the
Holy Spirit. Eventually, I relented more to end their persistence than for any other reason. Tears
welled in my eyes as I started reading the pamphlet, and with each paragraph, the walls around my
heart began to crumble. When I reached the final page, I collapsed into a heap of sobs.
“Bring Rachel to me,” I pleaded. She needed her mother, and I needed her. With wet, salty tears
streaming down my cheeks, I cradled Rachel in my arms, holding her close to my heart. The threat
of death no longer separated us. I wanted to hold and love her, irrespective of whether we had
only moments or hours remaining.
The respite from fear lasted about as long as Rachel’s tiny fingers. It returned uninvited, buzzing
around like a persistent mosquito. The thoughts persisted: Put her down. Return her to the nursery.
What if she dies in your arms? You’ll never recover from that. Ignoring these insinuations, I
continued to love Rachel, disregarding when she might pass away or who held her in her final
moments. Until then, we had memories to create, starting with bath time.
With the assistance of my nurse, I cautiously undressed Rachel, placing her next to my breast, fully
aware that I would never nurse her. I inhaled her infant scent, pressing my face to hers, and clung
to the moment, hoping to preserve our intimacy forever.
Rachel lived a second night, granting our friends and family more precious moments with her and
us. The hospital staff bent the rules, allowing our loved ones to share these moments. Despite the
gratitude for the extended time, silent anxiety lingered. I was terrified by the anticipation of another
night of waiting and wondering when she would pass away. The grace of the second day did not
enhance her chances of survival. I had done the math: two days were a gift, not a miracle.
God granted a third day and a fourth. Then, we faced the formidable task of bringing Rachel home.
My husband coordinated the logistics of meeting her medical needs while our pastor engaged with
civil authorities regarding the imminent likelihood of her passing at home with us. My head spun at
the possibility while my heart raced with unspoken fear. The prospects tormented me. Being alone
with a dying child sent shivers down my spine.
The staff discharged me while Rachel remained at the hospital. Leaving her was like experiencing a
death of sorts. I had anticipated packing my bags and collecting my flowers, gifts, and cards. I was
supposed to dress Rachel in a new outfit and enjoy being wheeled out of the hospital like a
superstar. Nurses cheering. Balloons trailing behind me, and my Rachel in my arms. Tears were my
wardrobe as my husband helped me in our vehicle. Neither of us mentioned the vacant car seat
behind us.
Bringing Rachel Home
The vacant crib in our bedroom loomed as a foreboding reminder of what lay ahead. It was
uncertain whether Rachel would sleep or pass away there, and it was only a matter of time until a
once-full crib, either at the hospital or at home, would stand empty.
As I meandered about the house, my mind was filled with questions. Why couldn’t Rachel be
healthy? Why does she have to face death? Why can’t she come home and grow alongside her
siblings? Why must I be the mother of a dead child? Answers to these questions proved as elusive
as the sleep I desperately needed.
Physical recovery from the C-section was taxing, and the emotional challenge of daily trips to the
hospital weighed heavily. The fatigue of walking down long corridors and to the nursery persisted
until I laid eyes on my Rachel. Her presence revitalized my strength, and the joy of holding her
renewed me even though I knew the empty feeling would return.
We shared intimate bonding moments only a mother knows. Yet, beneath it all, I wrestled with guilt
for leaving her at the hospital, shame for not wanting her at home, and fear of possibly placing her
in the crib next to my bed, the same crib she would eventually leave for an eternal home.
The nursing staff observed my inner struggle and gently advised, “You need to take her home,
Janet.”
Acknowledging their wisdom, I hesitated, nonetheless. I felt the need for more time, and as one day
passed and then the next, uncertainty lingered. The prospect of having Rachel at home seemed
daunting, and I questioned whether I possessed the strength required.
The hospital had isolated her from germs, and I wondered how I could adequately sterilize my
home without the expertise to protect her. The fear of her passing in front of her siblings added
another layer of distress. Even though my questions remained unanswered, they gradually
dissipated, eventually reducing the dilemma to a choice between time and fear. We decided to
bring Rachel home ten days after her birth, fully aware that she would pass away in our care.
Rachel’s presence introduced unexpected emotional challenges. There were days when the
overwhelming desire was to walk away from everything, even her. I wished for someone else to
bear the relentless tension of caring for a dying child, not knowing when death would inevitably
arrive or how it would present itself.
It proved impossible to escape my thoughts. Questions loomed: Would she pass away in her sleep?
What if it happened while I was in the shower, on the phone, or making breakfast for Jessica and
Graeme? What if she died when my kids were with her? How would I explain that to them? I felt
the need to be informed, to be prepared. The perfectionist in me, driven by a desire to reject
failure and weakness, sought to exert influence over my daughter’s impending death.
Rachel lived for two weeks, then three. There were days when she appeared to thrive and others
when she struggled, her skin alternating between a healthy pink and an unhealthy gray. We faced a
critical situation that led us to rush her to the hospital, convinced that her life would end there.
Contrary to our expectations, it didn’t. A few days later, her skin tone returned to the unhealthy
gray hue and remained that way. Her breathing grew increasingly labored, and she stopped eating.
Little did I realize that it was Rachel’s final evening with us.
Goodbye, Sweet Rachel
The following morning, Rachel’s hands and lips didn’t appear normal. In a state of panic, I urgently
uncovered her quilt and examined her feet, which were a dangerous shade of purple, as warned by
the Hospice nurse. Rachel’s organs were in the throes of failure, her heart struggling for any blood
supply to prolong its beating.
“Rachel! Rachel!” I pleaded desperately. “Come on, baby, don’t die!” Cradling her near-lifeless body
in my arms, I gazed into her glassy eyes. Her skin was pallid, her breath feeble. A surge of terror
coursed through me like an electric current.
Amidst the chaos, I fumbled to locate the stethoscope, my trembling hands silently praying, “Do
something, God! Make my baby breathe!” Holding Rachel close, I implored her, “Not yet! Please,
baby, not yet!”
My husband was fishing near Mt. Rainier, and without cell phones or texting technology, I faced the
challenge of getting the news to him. Desperate, I relied on the Holy Spirit and the help of friends
to locate Pat and bring him home in time to say goodbye to our daughter.
Jessica and Graeme were asleep in the other room. I fervently prayed to God, “Please fix this. Send
Pat back home. I can’t do this alone.” I woke the kids and brought them to Rachel, who seemed to
have rallied as her skin transitioned from gray to pink. They sat on the bed, unaware that these
would be their final moments with her. My husband finally arrived, and I promptly took the kids to
my parents’ house across the street.
Rachel’s body felt cold, and I couldn’t bring warmth to her. Her struggle to survive was nearing its
end, with twenty-five days taking a toll. Her failing heart signaled that death was claiming my
daughter and the dreaded moment had come.
My husband monitored her heartbeat, and moments later, she rallied for what proved to be the
final time. I heaved a sigh of relief, grateful that we still had her with us. I was well aware it
wouldn’t be much longer; the specter of death loomed over us, allowing us an hour at best.
Our pastor stayed with us during the somber vigil. Rachel lay on my husband’s lap, breathing in
irregular rhythms. Her chest rose, paused, fell, and rose again as she valiantly struggled for oxygen.
I observed, prayed, waited, and wondered, questioning if these were indeed my daughter’s last
moments and if this was the face of death.
God remained faithful. I had expressed to Him my reluctance to be with Rachel when she passed,
and this did not surprise Him. He knew my heart and understood my vulnerabilities, even when
others might not have. Moments later, the Holy Spirit nudged me to take a walk. I was reminded
that He was with me, assured of His presence with Rachel and the promise that she would never be
alone.
Julie, a constant companion throughout this journey, hadn’t left my side. I invited her to join me for
a walk to the park, just a couple of blocks from home. Once there, we sat on a bench and talked
for a while. Gazing toward the sky, I asked, “Wouldn’t it be incredible if we could witness Rachel’s
journey to heaven, much like the disciples did before Jesus returned to heaven?” We both smiled at
the thought, but as quickly as I posed the question, I felt an immediate prompt to return home.
“We have to go now!”
Stepping through the door moments later, I sensed a different atmosphere. Without words, I knew.
Rachel was gone, and my husband confirmed that she had passed. I asked him when it happened;
he stated a few minutes ago. I looked at Julie; she returned the confirmation. Jesus let me know
when He had taken her home by giving me the thought of His ascension to heaven. His was
centuries ago; Rachel’s homegoing was at 10:23 on May 19, 1990. They were together at last.
I tenderly lifted Rachel’s lifeless form to mine, tears streaming from my heart to hers, motionless
within her chest. Throaty groans escaped my lips as I kissed her cheek. I pulled her blanket over
our heads and wept in our private cocoon.
As Rachel’s skin gradually turned cold, I held her tighter, whispering, “This will keep you warm,
baby.” Though death had claimed my daughter, my maternal instincts remained untouched.
Nothing could extinguish them. For a few hours, we kept Rachel at home with us before releasing
her to our pastor, who also worked for the local mortuary. Despite the apprehension surrounding
her death, I was grateful that Rachel had passed away at home.
The Grief Begins
The following days unfolded in a whirlwind of tasks: selecting a casket, finding a burial plot,
designing a headstone, and scheduling the viewing at the mortuary. I wasn’t sure how I would
emotionally respond to seeing Rachel’s body again. The drive there was relatively silent, with only
the sounds of my children in the back seat. Jessica grasped the gravity of the situation, but
Graeme, being too young, remained unaware.
Upon our arrival, the hosts greeted us and allowed us time to enter the private room at our own
pace. Rushing in, I unexpectedly collapsed to the floor, overcome with sobs. Despite thinking I was
prepared to see my dead daughter, reality hit me like a tidal wave. Guttural groans returned as
death became painfully real and final. There she lay, dressed in a delicate white burial gown
covered by a quilt from her grandmother, with a tiny lamb placed beside her.
In the stillness of the mortuary, my guilt silently resurfaced. I berated myself, but then I recognized
that such emotions were futile. I needed to quiet those thoughts for the sake of my well-being.
Even after the scheduled viewing concluded, I staunchly refused to leave. While my husband took
our children home, I positioned a chair beside Rachel’s casket. For what felt like endless hours, I sat
there, fixated on her lifeless form. Gazing at her, I reached down and tenderly stroked her face,
eventually gently opening her eyes.
Death introduced mind games I had no desire to engage in. Rachel’s eyes, vacant, unnaturally dark,
and eerily still, revealed the absence of life. Truly, eyes serve as a mirror to the soul, and she has
now found her home with Jesus.
Eventually, I gathered my belongings, stuffed wadded-up Kleenex in my pocket, and threw my coat
over my shoulder. I will never forget looking at my daughter for the last time. Even now, I shake my
head as I type these words so many years later. Oh, how I still miss her!
The memorial service unfolded beautifully, encapsulating Rachel’s life and purpose on earth.
Afterward, we shared a meal with guests. Then came the inevitable: the aftermath, the moment
every grieving parent confronts — the first morning after everything is done and buried.
My husband resumed work the following week, leaving me at home with our children, who still
needed their wounded mother. Coping the best I knew how, I navigated each moment, all while
grappling with the absence of my baby Rachel. Loneliness engulfed me, and I struggled to piece
together the fragments of my life. My hands felt idle, my heart numb, yet my mind incessantly
grappled with the unanswerable question: Now what?
Managing my grief proved elusive. I had scarcely had time to love Rachel before she departed.
Twenty-five short days, over, done and gone like a passing breeze.
As a couple, my husband and I wrestled with grieving. This wasn’t unexpected, given our disparate
upbringings in emotionally challenging households. I felt as if my husband had moved on. Deepseated resentment crept into the concealed corners of my heart. Why did he seem to find this
easier? How could he sleep at night? Why wasn’t he grieving, and why wouldn’t he cry? Little did I
realize he silently wept at work, away from me.
All marriages encounter difficulties, and with the added challenge of a child’s death, our union
faced treacherous terrain. We resolved that no matter how dire the circumstances, regardless of the
depth of the valley, we would not succumb to becoming a statistic. Death had taken our daughter,
but it would not dismantle our marriage.
Yet, I struggled to find a place for my grief, unsure how to manage my emotions. What should I do
with the dark thoughts infiltrating my mind? How could I release the pain that felt like a searing
iron in my heart? What would life look like now that Rachel was gone? So many questions plagued
me. I didn’t know how to behave or live. The concept of normalcy felt distant, especially as it meant
living without my baby. All I understood was life before Rachel and life after her. My sense of
identity was utterly lost.
The thought of others’ opinions disturbed me, compounded by the enemy’s taunts. “Don’t smile, or
people will think you didn’t love Rachel. Don’t you dare enjoy yourself, or they will think you don’t
miss her. Dwell on your grief. Stew in your sorrow. That’s all you have now.”
Crowds became unbearable as I never knew when a wave of grief would knock me off my feet. The
sight of a baby plunged me into a sea of sadness, and a baby crying brought tears like an
unexpected rainstorm. A baby girl with dark brown hair and eyes could nearly cause me to
collapse.
My faith yearned for sight, but death had blinded me. Prayer, once a refuge, felt futile after Rachel’s
death. Jesus had faithfully provided all I needed, but now I needed Rachel, and He wouldn’t give
her back. Why should I pray? What was the point? Access to Jesus felt as closed as the lid on
Rachel’s casket.
Resentment grew with each passing week, and my thoughts turned accusatory. My questions
assailed God’s character. I teetered on the edge, nearing a line I never thought I’d cross. I
questioned whether this concept of God was some cosmic joke. Maybe my parents were mistaken,
and the church was for naive fools or those seeking a spiritual crutch. I couldn’t perceive God or
discern where He had taken Rachel. Reading my Bible came to a halt. Prayer ceased. I deliberately
disregarded God. With Rachel gone, it seemed as if God might as well be nonexistent.
Approaching a spiritual demise, I eventually turned to friends whose wisdom I trusted for help.
Their counsel? Don’t suppress your emotions; reveal them. Tell God how you feel and surrender
your pain. This type of vulnerability stuck in my throat like a cotton ball coated with sap.
I had thought I released all my anger to Him on the day of Rachel’s viewing, but I was mistaken,
especially when the one-month anniversary of her death arrived. Believing that grief had taken its
toll, I wouldn’t be one of those individuals who turned into an emotional wreck because of a date
on the calendar.
I convinced myself I could handle June 19, 1990. It was just another twenty-four hours in a
dreadful month of a horrible year. However, I was far from fine. Rachel’s images played on the
mental big screen of my mind complete with sounds and smells. My vision was flooded with
images of her tiny, lifeless body — cold, still, as dead as my heart. The tapes played on a loop,
each recollection resonating like molten lava beneath a dormant volcano. I recognized that I
wouldn’t get better unless I addressed my anger; otherwise, bitterness would consume me.
I erupted.
An Unexpected Request
The initial steps toward healing weren’t just about “letting God have it” but truly letting God have
all my emotions, grief, broken dreams, and shattered hopes. Despite believing I had already
surrendered everything, God had one more thing He wanted me to release.
A few weeks later, my husband and I escaped town for a weekend getaway. The ocean had always
been my place to connect with Jesus, and this time was no exception. As I walked the beach,
scuffing along, Jesus reminded me of His faithfulness, fulfilling promises more times than the grains
of sand. Then He made an unexpected request: “Thank Me.”
“You can’t be serious,” I replied, even though He hadn’t spoken audibly. As a long-time believer, I
recognized that His voice was capable of grabbing my attention even amid sorrow and grief.
“Thank Me.”
It seemed absurd. Thank Him? I couldn’t and wouldn’t do it.
I ignored Him; He waited. He waited; I walked further down the beach. Jesus knew I needed to go
to a deeper place with Him. As the waves ebbed and flowed, He guided me to grasp something I
understood in my head but not in my heart. I needed to embrace the bad alongside the good, no
matter how dire things became. Lamenting my emotions was one thing; surrendering my pride was
another.
“Thank You,” I muttered, barely audible but present.
As soon as I spoke, His still, small voice echoed again, unmistakably.
“I am everything you need. Take My hand. I will lead you to green meadows and peaceful streams. I
will renew your strength. I will guide you along paths that bring honor to My name. We’ve walked
through the dark valley of death. No longer be afraid, for I am close beside you.
My staff will continue to comfort you. My rod of correction will always lead you toward truth. I will
anoint your mind with oil. It will no longer be held captive to the lies of the enemy. He intended to
steal, kill, and destroy. My purpose is to resurrect, restore, and renew. Your cup will one day
overflow with blessings. My goodness and unfailing love will pursue you all the days of your life,
and you will live in My house forever. Rachel and I will greet you when you arrive. Then, your
healing will be complete.”
Jesus used my moment of surrender as a catalyst toward wholeness. Healing didn’t occur
instantaneously. I didn’t feel the proverbial weight lifting from my shoulders. It resembled waves in
the ocean, like the ones beneath my feet. Healing flowed in; pain flowed out.
Jesus continues to fulfill His part, as do I. My broken heart is on the mend. The process isn’t
complete, but He will finish it. As He carries out His work, I cling to the images He provided me
years after Rachel passed.
I envision myself moments after my death, approaching the door of heaven. Rachel stands behind
it, hand-in-hand with Jesus. Upon entering, I see them, and a beautiful reunion unfolds as I run to
embrace my daughter. The eternal reunion is complete; I am fully and finally healed. Then, I bow at
Jesus’ feet, expressing gratitude and worship for being the One who understood my greatest need,
healed me from my deepest pain, and paid for the salvation of my soul.
If you feel Jesus calling you to surrender your heart and life to Him, it’s as straightforward as
having a conversation with Him. He desires a relationship with you. The following prayer can guide
you to Him:
Jesus, I am ready. I want to be part of your family. Your Word states that if I confess my sins and
acknowledge that You are the way to heaven, You will accept, forgive, and embrace me. I do this
now. Thank You for taking away my sins. Thank You for raising me from the dead and securing my
victory over death and the grave. Please come into my life and be my Lord and Savior. Amen.