Bouncy prayers, anxiety, and choosing to believe

“Don’t get suspicious,” our 8-year-old daughter said as she casually disclosed her jaw pain. She was prepared for my anxiety. We’ve already buried one daughter and this one had a two-year span of chronic health issues that left me teetering on the edge of a nervous breakdown. After a mostly problem-free summer, she started with new symptoms weekly for the past few months.

I don’t know how to suppress fear that tastes metallic and releases chemical pheromones through my arm pits that make me smell like a fetid mammal, but I know every time our daughter starts having chronic symptoms, that fear pounces like the demon it is.

I’ve had occasional generalized anxiety, but all my centering and grounding and Scripture-reciting escape me when this kind of fear clutches my chest. I try to hide it from my children, but they can sense the change in my voice and demeanor. It’s as if they watch my body turn to jelly.

Then I feel guilty, because I’m a Believer and I’m supposed to pray prayers of faith, to trust in God’s goodness. But here’s the thing, I don’t trust God to answer my prayers anymore. Not always, anyway. And not the way I want Him too. I only trust that He is with me in whatever lies ahead.

I learned God wasn’t a Wish-King when my 6-year-old self begged Him to bring my Daddy home, but he never came. Or when I begged Him to let my daughter live and she died anyway.

I learned God sometimes answers prayers when my teenaged brother was riding his bicycle and was hit by a car, causing traumatic brain injury and coma. Doctors said if he survived, he would be in a vegetative state his entire life, but instead he’s a college graduate and has a wonderful family and career. I learned God sometimes answers prayer the following year on that same brother’s birthday. Mom was on her bicycle and was hit by a car. She received life-saving pints of her own blood she’d recently donated.

I’m not privy to the naïveté of saying, “It will all work out, we just have to trust God’s best for us,” when my idea of best and His seem vastly different. But I have known His nearness in suffering and His presence in the Valley of the Shadow of Death. I pray the prayer of the father in the Gospel of Mark when he asked Jesus if it be possible to heal his son. Jesus said, if it’s possible? All things are possible if you believe. And the father cried, “I believe, Lord help my unbelief.”

Faith doesn’t come natural to me anymore, at least not in the sense of answered prayers. I have to choose to believe. And I can believe, because I know that ultimately I am held. And though I suffer various trials, my faith is being refined into something far more precious than gold. Though I do not always see or feel Him, I love Him.

We sit again in the pediatrician’s office, and the doctor says we might want to run some labs. I hold my little girl as they draw six tubes of blood from her skinny arm. She goes limp. Loses her color. Gets sick. I tell her she’s going to be okay while fear screams suffering and death in my head. I can’t stop the racing thoughts. It’s the same day my Daddy, who came back into my life as a young adult, gets an “aggressive lymphoma” diagnosis. Only two weeks after my 24-year-old cousin died.

I ask others to pray for us because my prayers seem to bounce off the ceiling. I hope for my daughter and weep for my daddy and battle fear that holds me captive. I fight guilt that tells me if I really believed, I wouldn’t be so scared. I am weary. I am tired. I am worn.

When the pediatrician’s phone number shows on my caller ID, I mumble hello around the cotton that seems to fill my mouth.

“How are you,” she asks.

“I don’t know,” I say breathlessly, “tell me how I am.”

“You’re good,” she replies. “We’re still waiting on some results, but most of the big scary things have been ruled out.”

There’s evidence of inflammation, but the remaining results we get next week might help guide us to answers. We’ll keep digging. My body feels like jelly again, this time from relief.

Like sinking into my favorite yellow arm chair, I fall into the lap of Perfect Love that casts out fear. This, this is a sensation I want to last. And in the moment, I’m thankful for a faith I can feel.

Double Vision

We’ve had the blessing of healthy children this year. Agents and publishers interested in multiple of my works. I’ve stepped away from my nonprofit and ministry work to homeschool our children. We’re reveling in the delight of longer snuggled mornings, less rigid schedules, and discovering how all elements of life and education are interwoven.

Autumn is kissing the Blue Ridge with a kaleidoscope of oranges, reds, yellows, and browns. We’re loving sweater weather, s’mores, spiced coffee, hot cocoa, cousin sleepovers, fire pits, and friends. Joys and highs and blessings untold.

This year has also come with death, five significant people in my life since May, spanning from aged to young. Two vernal loved ones are being treated for ugly heartrending diagnoses and another young-to-me is being tested for words I can’t make myself utter. Beyond my immediate circle of family and friends, there’s even more suffering, parents scream-praying for children to live, children reeling without parents. End of treatment. No more clinical trials. Hopelessness that prompts unthinkable actions. Familial, social, political, and spiritual unrest.

My anxiety resurfaced, forcing recognition in the form of physical symptoms, more medical tests, and eventually, treatment for the root cause. Grief, sorrows, and depths of despair.

Driving home from church the other night, I turned on my Rich Mullins playlist, hoping his folksy voice and thought-provoking lyrics would quicken my heart for things eternal. First to play was, “Here in America,” where Mullins describes God’s creativity in natural beauty around the world. Tucked in the chorus are the words, there’s so much beauty around us for just two eyes to see, But everywhere I go I’m looking…”

That’s what I need, I thought, more eyes to see more beauty.

But if I had extra eyes to see more beauty, wouldn’t I also witness that much more suffering?

Living with our hearts and eyes wide open means truly seeing the beautiful and the ugly, indescribable joy and unimaginable sorrow.

I can’t carry it all, I cried. I never intended you to, I heard.

 “Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.” Matthew 11:28-30 NASB.

I settle into the truth of these words and pray for grace to release my grasp on all I cannot hold. I wrestle with the paradox of being a believer in Absolute Truth who lives with questions. One who hopes against hope to avoid suffering, while knowing the presence and peace of God in the midst of it.

God uses the words of Ann Voskamp to remind me that “Those who long to see miracles, see everyday miracles everywhere.”

“Live like God is a genie in a bottle, and we become like angry drunks.

Live like God is king on a throne, and we become intoxicated with awe,” Voskamp writes.

Again, Rich Mullins sings prayers I cannot speak. “…hold me Jesus cause I’m shaking like a leaf. You have been King of my glory. Won’t You be my Prince of Peace.”

Whether beholding beauty I cannot describe or suffering I cannot utter, a warm blanket of Grace is there to envelop. Abiding Peace that IN all things, God never leaves, never forsakes, never abandons. And if my arms are raised, praising or questioning, my head bowed in reverence or sorrow, my body shaking in joy or rage, I’m held in His Everlasting Arms.

Be THOU my vision, oh Lord of my heart.

Grief: misunderstanding to compassion

When I first witnessed her grief, I felt pity. In my youth and naivety, I somehow thought I could pray her grief away. How pious. How wrong. How antipathetic.

Several times a day she paced back and forth on the concrete basketball court beating her chest, raising her arms, rocking back and forth, wailing for her child.

She didn’t speak English, and her family shared with me that ever since her child died and they had come to the United States, it was if she had locked herself inside. She anguished daily for her child she left behind.

When I first witnessed her grief, I felt pity. In my youth and naivety, I somehow thought I could pray her grief away. How pious. How wrong. How antipathetic.

Today, on the eleventh birthday of my own deceased daughter, I anguished in a fetal position on our front porch couch, unaware and uncaring of witnessing neighbors or passers-by. My new normal has slowly evolved around this pint-sized hole in my heart and while my life is filled with tremendous joy, the ache of her absence is ever-present. Among the many things I’ve learned over the years, is that grief is lonely, even when surrounded by an entire community of love and support.

I weary of explaining to the “young mes” out there, that the Eternal Hope that carries me doesn’t mean I don’t miss her. I pray to not be deeply hurt when the “former Reginas” mistake my life-long loving and missing her as being ungrateful for our other children. I feel judgement from the “pious Reginas” when I succumb to anxiety regarding the health and well-being of our surviving children, especially given our family’s past year’s health situations. And today, I sit on our porch, tears falling like the summer rain dripping off our rooftops, and I remember the bereaved mother to whom I could not relate those many years ago.

If I could go back to this sweet grieving mama, I wouldn’t feel as though we needed to speak the same language verbally, I would wrap my arms around her grief-weary shoulders and cry with her. I would understand that I couldn’t fix it for her, but that I could walk alongside her without my ridiculous ideologies of what it means to parent a deceased child. Instead of trying to pray her grief away, I would pray that she would somehow sense God’s comfort and presence in her grief. Instead of coming to her with tired cliches and empty platitudes, I would tell her that I didn’t know what to say, then I would sit with her in weeping and wailing, in anger, in silence, in laughter, and without judgement.

I’m so grateful for the compassionate people who do the same for me, of which there are many.

P.S. Writing this out helped me gather myself together on this day of remembering. As I hammered out the words on my mobile blogging app, our 6-year-old daughter, whose own health has kept my heart anxious, came out from the screen door with a coffee mug and said, “Mama, I made you some lemonade. I thought you could use something to make you happy.” She wrapped her skinny little arms around my neck and held me as I feel apart. Again.

They Know Their Sister

They know their sister by tear-stained photographs

By a worn-out guestbook from her funeral service

They know her by playing in a cemetery

Around a cold hard tombstone

They know their sister by our “Sadie Rose” friends

By support meetings and remembrance ceremonies

They know their sister by the faraway look in mommy’s eyes

By the silences, the tears, the whispers of her name

They know her by the scent of a flower

By a butterfly’s soft-winged flight

They know their sister by the cloud’s silver lining

And by the stars that light the night

How I wish they could play with her, hold her hand, kiss her goodnight

But they are content knowing her in this way

Always looking for reminders of her presence

And, as only children can, they accept that this is how they know her

And they love her, just as they know her

Just Think!

My mom, with her sister/brother quartet, used to sing this poem in slow doleful harmony. A young girl on her lap, I would shiver at the very thought of Robert’s words as mom softly crooned in her low alto. I hum this to myself often, especially when death arrives yet again as it has so suddenly in our tight-knit community this week. It’s a sobering thought.

Just Think!

BY ROBERT W. SERVICE

Just think! some night the stars will gleam

Upon a cold, grey stone,

And trace a name with silver beam,

And lo! ’twill be your own.

That night is speeding on to greet

Your epitaphic rhyme.

Your life is but a little beat

Within the heart of Time.

A little gain, a little pain,

A laugh, lest you may moan;

A little blame, a little fame,

A star-gleam on a stone.

May the God of all comfort be with those who are facing this reality tonight.

Living Hope in Death

Every time I attend funeral services for an Old Order Mennonite family member or friend, I wish those “outside” could experience their death rituals, rich with culture, community, and faith. The horse-drawn hearse and the four-part-harmony singing make me cry every time.

This week I attended the funeral for my great Aunt Mary. Later that evening, I wrote this poem about the graveside portion of the service.

Stoic Hope

Regina Cyzick Harlow

2/27/2018

From Aunt Mary Beery’s funeral

Shovels scratch

Dirt onto the coffin

Filling the grave

Formed from dust

To dust returning

Mourners

Black hats

Black shawls

Sturdy shoes

Singing

Shoveling

Discretely wiping tears

Faint florals blend

With horses

Leather

Farm

And moth balls

Wafting on the breeze

Sunshine

Blue sky

Breathing deep

Crisp air

Inhaling the promise

Of Living Hope

For those unfamiliar with Old Order Mennonites, they are often confused with Amish because they drive horse and buggy, dress plainly, and live simple agrarian lives. My family and I were raised in the Old Order Mennonite faith, and while I had my reasons for leaving as a young adult, I hold many things and people dear from their community.

My friend, Ava, wrote an in-depth article about their death rituals here. She captures the essence of what happens at the time of death through the funeral in vivid beautiful detail.

Here is a link to a photography essay of an Old Order Mennonite Family by a friend of mine, of life-long family friends/neighbors.

Fear and Truth

Its tendons tighten ‘round her throat

Fear’s icy fingers grip

A lullaby in minor chord 

Echoes from fear’s lips 

Why isn’t she better? The words bounce ‘round

Why is it taking so long?

Did we do the right thing?

Did we make the right choice?

Is there something else going on?
She tries to hush fear’s haunting voice

Pry loose fear’s tightening grasp

But memories of another time

Clench fear’s fingers fast

The weight of a tiny cold dark form

Wrapped in blankets tight 

A final breath escapes her lips 

She slips into the Light
The scent of death and dirt and clay 

As they lay her down to rest

Still fills her senses to this day

And leaves her a broken mess

Trust in God, the faithful quip

He’ll never let us go

And the pious mourners leave her grave

Unscathed by the treacherous woe
Repeat, replay, those memories ore

Her mind cannot turn off

As another daughter suffers long

With pain, and rash, and cough

The surgery was supposed to help

Her healing to be quick

But the progress vacillates and slows

Because she was so sick 
Fear growls in guttural tones aloud 
“she’s mine, she’s mine, she’s mine”

And pins her to the chair, afraid

Immobilized, confined

“She’s not,” Truth’s voice commands 

With authority all Its own 

“She was never yours, she will never be

So away with you, be gone” 
Fear and Truth declare a war

For heart and soul and mind 

And somewhere in her deepest self

Truth’s Hope begins to shine

A knowing that when all she loved

Was ripped from arms and chest

The only thing that held steadfast

Was Truth that never left
Truth cannot lie and will not leave

Her heart to fear’s demise

Truth shrouds her grieving vulnerable soul

With Love from Heaven’s skies 

Truth lifts her trembling doubting head

And turns her face with awe

Plants deep within a greater peace

The Truth, she sees, is God

When love and pain get physical 

I’ve started this post a hundred times and simply couldn’t get it out. It feels so vulnerable, but for others who need to learn these same lessons, I must share. 

My husband, our children, and my mission through the Sadie Rose Foundation are, without a doubt, the things I love most in life, secondary only to my love for God. Who knew my deep and unwavering love for them could cause physical pain?



The past few years have wreaked havoc on my health and after many tests, the underlying “diagnosis” was a real wake-up call. Nearly two years ago, I “lost” my voice and was diagnosed with a hemorrhagic nodule on my left vocal chord. I use my voice in many ways, including singing, public speaking, conducting meetings, conversation, and of course, “mommy voice,” so this was a big deal to me. 

My Ear, Nose, Throat specialist prescribed, even ordered, silence in order for the nodule to heal. With the addition of a foster placement during that time, and our family’s entire routine upended, the children needed mommy’s reassurance and stability more than ever. No talking and only whispering when words were absolutely necessary seemed an impossibility, but I took the orders very seriously. Nearly a year later my voice returned to its normal strength and range. 

That experience was my first indication that my body was trying to tell me something. 

This spring I began having pain in my left side and my right foot. After nearly two months, I went to the doctor. The nurse practitioner believed the pain to be muscular. I was also diagnosed with a common infection that cleared quickly with antibiotics, but the underlying pain persisted. 

Another visit to the doctor led them to believe I should have more tests, just to “rule out scary stuff.” In the meantime the pain became unbearable and warranted a trip to the ED. A CT scan showed a few areas of possible concern and I tested positive for strep. 

(A few weeks earlier I had a trip to the ED for a trout bone that had lodged in my throat.) 

In the meantime, I did all I could to keep up with my family, our non-profit, my church responsibilities, and helping care for a beloved family member.   

At some point I realized I had nothing left to give. I drove into the church parking lot for a meeting and the gas light in my vehicle came on. I realized at that moment that the gas light in my life was glaring at me. I was “on empty,” and without refueling, I could not continue. 

Tests were coming back normal and negative, which was great except that I needed answers. I set up a counseling appointment (my first ever) and began seeing a chiropractor. I started noticing improvement with my first visits to both. I have known for a long time that I needed to find a way to release the pain, grief, and concern I carry for others, but I didn’t realize that not doing so could ruin me. 

Where there is love, there is vulnerability to pain. Laura Ramirez

I had dubbed myself “a sacred painholder” somewhere in my journey of walking with those grieving the death of a child, but I needed to learn how to be a “pain-releaser.” Connecting with new families for me always means that their miracle never came, there was no happy ending, it means that a child has died

This is heavy stuff. I held their pain so closely, it became my own. I was imposing my anxieties on my family, frightened with every small pain or problem that they were going to die too, because “I knew someone who…” Besides the weight of grief growing ever-heavier, my daily life became ever-busier. I had over-extended every area of my life, and my body started paying the price. 

My Psoas muscle (termed by some as the “muscle of your soul,”) was the cause of the pain in my side and my other complications seemed to stem from that. Some would say the Psoas muscle is where we hold stress, tension, and anxiety, and I was holding plenty of all three. 

As of several weeks ago, the last remaining tests came back clear, I’m seeing significant improvement from counseling and chiropractic care, I’m deliberately saying “no” to many good opportunities so I can savor the most precious ones more fully, and I am returning to hobbies I have loved in the past and trying something totally new. 

Ballistics and Ballet

One of my favorite hobbies and stress relievers years ago was target and skeet shooting. My husband and I have bonded more in returning to that hobby then I could have dreamed. I also signed up for an adult ballet class! That stretches me (literally and figuratively) far out of my comfort zone, but it is helping me rebuild my core strength and is forcing me to confront a myriad of insecurities. 


I’m taking time out and time off from many “extracurricular things” to return to the those that refuel me. I am purposefully praying for myself, something I do well for others but have neglected on my own behalf. I am finding refuge and peace in the constant relentless love of God and in these words from His Word.  

Psalm 139:7-10 7 Where can I go from Your Spirit? Or where can I flee from Your presence? If I ascend into heaven, You are there; If I make my bed in hell, behold, You are there. If I take the wings of the morning, And dwell in the uttermost parts of the sea, Even there Your hand shall lead me, And Your right hand shall hold me.

Philippians 4:6-7 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.  Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

Matthew 11:28 Come to Me, all you who labor and are heavy laden, and I will give you rest. 

Doughnuts, Dwarfism, Adoption, Celebration, Memorium

Ten years. That’s how long it has been since we’ve held and kissed our sweet Sadie Rose hello and good-bye. In memory of her 10th birthday, we are inviting all who wish, to celebrate with us in a unique way. Most who know us know our passion for our work through the Sadie Rose Foundation. Most know us know our passion for adoption. In memory of our sweet Sadie Rose and honor of our heart for adoption, read on to see how we invite you to celebrate her life with us.

While I talk and write about her often, few people remember or associate her as a Little Person (someone with dwarfism) and think of her more simply as a baby gone too soon. In the grand scheme of things, that is perfectly fine, but with her diagnosis of hypochondrogenesis, a rare form of skeletal dysplasia including dwarfism, she has always connected us to the Little People community.

Little People of America, is a non-profit organization that provides support and information to people of short stature and their families. Their mission statement is: “LPA is dedicated to improving the quality of life for people with dwarfism throughout their lives while celebrating with great pride Little People’s contribution to social diversity.  LPA strives to bring solutions and global awareness to the prominent issues affecting individuals of short stature and their families.”

One of the ways they support the Little People community is helping children of short stature find forever families through their adoption advocacy and grants. Here’s a link that explains specifically how they work to fulfill this mission. 

Here’s a link to view children of short stature waiting to find their forever families. I dare you to let it break your heart. It crushed mine.

Here’s a link from a familiy’s first-person experience with adopting children with dwarfism. 

Finally, here is a link to our ambitious goal of raising $1000 in Sadie’s memory to cover an adoption grant for one of these waiting children and their forever families. 

We are also taking orders locally for mom’s famous homemade doughnuts made fresh and ready for pick-up Friday, June 16, 8 am, at the Sadie Rose House, 195 Main Street Dayton. One hundred percent of money raised will go toward this adoption grant. In an effort to keep track of orders, please ONLY order through our Facebook event page, Celebrating Sadie’s 10th Heavenly Birthday. If you do not have Facebook, you can call or text your orders to Regina at 540-421-6458.


Whether or not you can make a financial contribution to this cause, we would love for you to consider a random act of kindness in memory of Sadie on June 20.

Your friendship, your love, your support has meant the world to us these past ten years. We will miss Sadie until the day we hold her again on the other side of eternity, and in the interim we will do everything we can to reduce the pain of others along the way. Thank you in advance for helping us accomplish this goal!

Our eyes are on heaven, our hands stretched toward humanity.


 

“I’ll see you in the sunrise, Mommy”

I wrote those piece more than a month ago, but am just finding the courage to share. Writing has always been my therapy, and this piece brought tremendous healing as I imagined what Sadie might say to me from heaven. 

“I’ll see you in the sunrise, Mommy”

By Regina Cyzick Harlow

April 2, 2017

As my body formed inside of yours, I was nurtured by your love. I knew my frame was not coming together as you expected, but I had to wait until a doctor could verify that for me. I wasn’t upset when you cried the day they told you “something was wrong.” I knew I wasn’t “wrong,” but I understood your tears. Your expectations were shattered. Yet I knew how deeply you loved me.

Daddy’s voice reassured me that through it all, we were going to be okay. You both referred to me as “Chickpea.” I still love that name.

I listened as you consulted with the geneticists and doctors about my diagnosis and was delighted that you chose life, when perhaps death “prepared and scheduled” might have seemed an easier option. I felt your body, tense from weeping, release tears into blankets, your hands, on the shoulders of loved ones, and sometimes even with strangers. I felt the hope you carried that, despite all odds, I was going to remain with you in physical form and not die.

I entered this world blue, without breath. Large hands of doctors and nurses cleared my airways so I could breathe. What was this thing called living, being alive? I went from the security and darkness of your womb into a sterile whirlwind of lights, medical staff, and other babies in the NICU, some alone, others with parents hovered attentively over them.

I wondered where you were, but they told me you had been through some pretty hard times and needed rest. After all, we would get to spend the rest of our lives together. We expected a lifetime of years, not hours.

I was so happy to see you during the day. I was comforted by the scent of your nearness when you were finally allowed to come close. The doctors and nurses were very good to me, but nothing could soothe me like your’s and daddy’s voices floating into my incubator. Those were familiar. Those were mine.

Later that day though, I could feel my little body struggling to breathe. You held me, your tears falling warm on my face. I wish I would have had the strength to wipe them for you. I felt myself slipping into another place, but I was reluctant to go. It was as if I could feel your heart shattering inside as you held me so desperately.

The doctors told you it was time to say good-bye. You gave me permission to move into the next place where I could sense I was being beckoned. You saw my body turn blue again. You heard the monitor switch to a gut-wrenching monotone beep, alerting the medical staff I was dead. You fell into daddy’s arms, weeping uncontrollably.

But mommy, what you saw was only part of the story. When I died I simply left my bars of bone and my house of flesh to transition into eternity. You saw my body stop breathing, but I was more fully alive than ever, breathing in the purest air of love and warmth and light. To go back to my little earthly body would feel clumsy and suffocating. My death certificate says I died because of “respiratory insufficiency,” but that was only earthly air for my earthly body. Here there is no lack of oxygen. Here my lungs breathe deep the air of angels.


The mountains and streams and wildflowers, the sunrises and sunsets and stars that help you feel so connected to me, I’m there, opening your eyes to the beauty beyond the veil of your flesh, the reality that the best is yet to come.

You’re still needed there, mommy. I’m safe and free here, but my brother and sisters and daddy need you, and many others who need to hear your story, our story, to know they’re not alone. I wish you knew how many children I play with here while you meet with their parents and siblings there. We have “Sadie Rose” meetings too, but the tears are absent because God himself has wiped them from our eyes.

Hold on mommy, because yet for a little while we are separated in body. But the day will come when you hold me again, and on that day I will take you to meet the One who has given you the hope and promise of our reunion. Until then, I’ll see you in the sunrise, in the faces of my siblings, and in the hearts and lives of others who know what it’s like to lose a child.  

 

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