Archive of ‘Poetry’ category

Struck. A Team Danica-Monica Update. And a Giveaway

by

Struck Like a Bell

I get the notification every day on my facebook feed. You have memories. Most of the time they include a blog post from the old Team Danica blog where I was much more faithful about writing for you. They also include status updates about pain, sickness, medical tests, treatments, surgeries and hospital stays. Either I am asking for prayer and support or thanking you for it.

I’m tired of our story.
I’m sure you must be too.

Danica’s healing since her surgery has been a miracle. You know I don’t use the word without understanding the full weight of it. Our joy in the excellent news during her visit to Hopkins several weeks ago and celebration of removing her neck brace has been tempered by my suffering.

After a random April snow last week I’m convinced spring is here to stay. I am wildly in love with the birds and blooms. I want to slosh in the mud and hunt all things new. I want to sit still and study the rebirth of dormant life. This is the season when my hope is made visible. It is also when my mast cell disorder explodes. My skyrocketing histamines raise my intracranial pressure in tandem. My already hurting head and accompanying symptoms are somehow worse on these pollen soaked sunshiny days than when the roller coaster barometer reeked havoc on my fluid filled brain. I forget this happens every year. Social media memories remind me.

It’s holy week. Danica has been sick with a fever and headache since Saturday and home with me. After Dan and Laney leave each morning we’ve been reading through the Old Testament prophecies and New Testament Gospel accounts of the days leading up to Christ’s death and resurrection. We aren’t at the foot of the cross yet, but we see the sadness of Jesus as He nears and hear His aching lament. It comforts me to know my fully God yet fully man Savior understands the cry of a heart that trusts my Heavenly Father but wails just the same.

Tonight I am crying out.

It’s been hard for me to read and write since my shunt failed. I have always said the pressure is the one part of my complicated diagnoses that I cannot live with. A year ago I was so desperate I wanted to die. After three failed LP shunts God directed me to a vascular neurosurgeon at the University of Virginia who had only recently begun seeing EDS patients and was brave enough to help us. The VP shunt he placed gave me complete and lasting relief for almost a year. I didn’t take a day of it for granted. No matter how broken the rest of my body is I most desire to be mentally and emotionally able to think clearly, read, write and learn and form and nurture relationships. When my pain and brain fog cloud these abilities I become frantic. I’ve come to terms with all the other loss and disability, but I beg God to leave the core of who He created me to be in tact. My habit of voracious reading comes to a snail’s pace when I am in this much pain and lose so much vision in my right eye. I edit my list of books and slog through the ones I most want to read. “Struck: One Christian’s Reflections on Encountering Death” by Russ Ramsey moved to the top of my stack.

I read it cover to cover in one sitting. Like always, I read with a pen to mark up the margins and a journal to copy words I needed to save. I have to admit there were points in his story I felt upset. All the things he was experiencing with one sudden diagnosis, surgery and recovery I’ve been through repeatedly. In the last ten years many people have begun a conversation or note or email with something like, “It’s nothing compared to what you are going though…what you’ve been through, but…” I cringe. Every time I cringe. Here’s the thing I always tell people who are going through different but no less hard things,“There is no monopoly on suffering.” Once I got past the self indulgent contrast between my life and his I began to gobble his experience seasoned with truths.

Days before I picked up “Struck” I’d read an article on Desiring God by Matthew Westerholm titled “Lament Like a Christian Hedonist: How Joy in God Bears Real Pain.” I book marked it and returned to it several times. I found comfort in the reminder it’s biblical and okay to wrestle hard with your hardships. It was this prepared soil the seeds of chapter fourteen fell.

Because the Lord often withholds explanation for our pain, we must not look at suffering as though it is some divine gimmick designed to teach us some important life lesson. That would make too little of the reality. God’s people do not walk through suffering toward the moral of the story. Rather, we walk toward the eternal presence of the Maker and Love of our souls, This I must remember…Suffering is not an event. It is a path…There are plenty of advisers out there who would counsel me to dress this up with positive thinking. But I do not think it would be honest to try to pad my experience with cleverly contrived optimism that denies what is true. My faith in Christ provides a deeper, truer way. I want to feel my sorrow. I want to walk in it. If the Lord walks there with me, what possible advantage could there be in conjuring any other way? No, I choose the road of suffering, and I pray for the courage to walk it honestly. The truth is my heart is broken. I need time to say as the psalmist said, ‘When I remember God, I moan, when I meditate my spirit faints.’ As part of my confession of faith, I need to say that I am not okay–not completely.

Tonight I am not okay. I can beat on the breast of my Father God, and He will hold me close and listen to every cry. “Though I continue to ask why, more often than not the question on my mind is ‘What’s Next?’ Sometimes He will answer, sometimes He will not. And I will again have to lean on what I know of who He is when I cannot make sense of what He allows.”

The God of the universe. The same God who sees Syria tonight. The same God who sat with my beloved friend this afternoon as she met her oncologist to see if her brutal cancer treatment is working. The same God who watched my sister and her family bury their dear Pops today. The same God who sits in the psych ward at the bedside of a fellow zebra’s husband who tried to take his life because he cannot bear to watch his wife and children suffer any longer. The same God who formed my Danica in my womb, fearfully and wonderfully, errant DNA and all and knows why she is running a fever for so long. The same God who sees my CSF logged brain and feels the bulging behind my right eye. He is good. He suffered hell for me. Love like that can be trusted with ALL THIS.

As I lay my throbbing head on a tear soaked pillow tonight I pray Russ’s song of lament:

Lord, You are with me. We walk through the valley of the shadow of death together. Since I do not know the way, I have no choice but to trust You. To trust You means I walk a steady path believing you are with me. The sound of my footfall echoes the two operative words you use to call me to the communion table–remember and proclaim. I remember that You are a Man of Sorrows, acquainted with grief, and I proclaim that I have no better guide. I have no better guide for two reasons: because You are God and because no one has stepped forward to lead me in a worthy manner. So I follow. What else can I do?

I haven’t asked for prayer lately.

I am tired of our story.
I’m sure you must be too.

But God is not tired. He does not grow weary or faint. Danica asked me to post something on facebook this afternoon when her fever spiked. Her childlike faith remembered your prayers for her miracle and wanted the same prayers for her sick body now. I was humbled. Won’t you please pray for her tonight? If she is still spiking by morning we will head to the children’s hospital. Please pray for my brain. I am terribly anxious about our trip to Charlottesville on Monday and my procedure Tuesday and what the next steps might be. I am terrified of a shunt revision. Please pray for Delaney. She is so sad about Dan and I leaving next week. She wants the joy of the sunshine and warm breeze to play as a song in our home instead of the dirge of sickness. Please pray for my Dan. He worked overtime this past Sunday offsite to help pay for another expensive medical trip, and he is working all week and then Saturday and Easter Sunday so he can take the days off to drive me to UVA. He is exhausted. He comes home to do laundry and dishes and look into the faces of a woman and children he loves desperately and wants to save somehow. Please pray for healing and provision and strength and Grace to do each next thing we think we cannot do.

Our Hope Remains.

What is your song of lament tonight?

I’m listening to Michael Gungor’s “Beautiful Things.”

I’m giving away a copy of “Struck: One Christian’s Reflections on Encountering Death”. Comment here on the blog or on social media with your heart cry by Sunday night. I will randomly choose a winner from the comments and send you a copy of this special book.

You might also like

Begin. One Word. A Team Monica Update

by

BeginAgain
“Always we begin again.”–St. Benedict

I bought the beautiful hardback book “Every Day Sacred: A Woman’s Journey Home” by Sue Bender in January, 1996 at a Walden Books at the Valley Mall in Harrisonburg, Virginia. The simple rendering of the empty red bowl on the cover drew me in. My life was out of control. I was lost in my faith. Nothing seemed sacred anymore. As I flipped through the pages I saw lots of white space, rudimentary illustrations sketched in black and only a few words. I realize now that my life word, Dayenu, was being planted way back then. In Sue’s introduction she spoke of a begging bowl,

“All I knew about a begging bowl was that each day a monk goes out with an empty bowl in his hands. Whatever is placed in the bowl will be his nourishment for the day.

I didn’t know if I was the monk or the bowl or the things that would fill the bowl, or all three, but I trusted the words and the images completely.

At that moment I felt most like the empty bowl, waiting to be filled.”

BeggingBowl

Sue’s book became a treasure I’ve carried with me everywhere. There were more than a few times I could fit everything I owned into my powder blue two door Chevy Cavalier marked with the Grateful Dead dancing bears sticker on the back windshield. Somehow my Bible and this book were never lost in the fray of my vagabond life.

If you visit my home you will see little bowls everywhere. Some are sitting empty. Some hold a rock and a feather, a small cross or piece of sea glass. They are not all displayed at once. I rotate them in my decor. They tell a kind of story. In late November, 2003, the night before my brother Neculai died, I painted a rather large bowl at a pottery studio with my mom. I scratched the date and my initials on the bottom. It’s now a deeply emotional space. I brought it out on my kitchen counter the week of Thanksgiving, a holiday that will always be tempered by sudden loss. Every time I’ve passed it since returning from Danica’s surgery in Baltimore I get a lump in my throat. I knew my word for 2017 was somewhere in the hollow of the simple blue glaze.

Since my own complicated fusion in October I’ve been the monk begging, the empty bowl waiting to be filled and the sacrifice filling the bowl for someone else.

I first heard the poem “The Singing Bowl” by Malcolm Guite at the opening of The High Calling retreat at Laity Lodge in November, 2014. I scribbled down the words in my blank Moleskine. Later that night in the silence of my room I read them over again and again. Each stanza was emptying my heart for every sacred thing I would receive in that hallowed place. There was no internet access in our rooms. I desperately wanted to google Malcolm and find his work. Sitting quietly with the scrawled letters in my own handwriting was gift. Before every session that weekend I opened my green notebook and read them again. Waiting at the San Antonio airport a few days later, finally with Wi-Fi, I found his book of poetry by the same title and ordered it.

Begin the song exactly where you are,
Remain within the world of which you’re made.
Call nothing common in the earth or air,

Accept it all and let it be for good.
Start with the very breath you breathe in now,
This moment’s pulse, this rhythm in your blood

And listen to it, ringing soft and low.
Stay with the music, words will come in time.
Slow down your breathing. Keep it deep and slow.

Become an open singing-bowl, whose chime
Is richness rising out of emptiness,
And timelessness resounding into time.

And when the heart is full of quietness
Begin the song exactly where you are.

My word for 2017:
BEGIN.

DesertSun

God made a way for me to take a solitary trip to Tucson last week. It was something I’d prayed for and desperately needed. In this world of constant sharing I wanted to keep it quietly tucked inside my hurting heart. It was everything I’d hoped and more. After spiritual famine and astigmatism I could taste and see good again. Tuesday morning I sat at the airport waiting to return home with absolutely no pain. Zero. No headache. No neck pain. No joint pain. No cardiac symptoms. No burning and stabbing needles in my feet. No mast cell attacks sitting near people with all kinds of scents. I was well. I filled my journal pages with gratitude for the body and spirit healing. I wrote about the things I long to do in this new year, specifically a dream I’ve had for some time to host a retreat for young zebra women in Arizona. I want to offer them respite from their medical lives, encouragement in community together and a few days of knowing there is a beautiful place where they could feel some better. I made important contacts and explored locations moving the idea into real planning. I was hopeful and excited.

ZonaMKS

My travel home included flights from Tucson to Chicago and then on to Akron/Canton. A little over two hours into the first flight the captain alerted us there were extreme storms around Chicago and no flights were being allowed to land so we would hang out at a high elevation circling above Nebraska and Iowa and hope things improved. An hour later he let us know we would have a very uncomfortable landing in Milwaukee through turbulent weather. It was during this descent and pressure change I experienced an ice pick pain in the right side of my head, loss of hearing in my right ear and fluid leaking from it. We sat on the plane in Milwaukee waiting for some kind of small window in the Doppler radar to make it into Chicago. Almost all of us on a large packed flight were making connections there. Suddenly we were ascending quickly and descending again through lightning and pouring rain at O’Hare. The airport was in total chaos. Every passenger needed to be booked on new flights for the next day. I stumbled off the jet way and began to cry.

With each new surgery I’ve been increasingly afraid to do things alone. I had to work through this doubt before I committed to the Arizona trip. I’ve felt more and more of myself being swallowed by disability. I’ve found myself resenting my broken body as an enemy instead of caring for it as a temple of the Holy Spirit. I used to be a seasoned solo traveler. In the past I’d have been frustrated by the inconvenience of an unplanned night in Chicago, but I would have jumped on the Marriott app and found a room, hailed a taxi and adjusted my sails. Instead, I felt like a lost and injured child. It wasn’t just the circumstances upsetting me. I was instantly questioning my theology and belief in everything I’d just been grateful for. Thousands of people were being affected by the weather. Of course God was doing things providentially in many hearts and lives through this maddening detour. My myopic view left me sobbing in a wheelchair by the baggage claim holding the howling shunt side of my head in my hands.

The first time I ever spoke of the desire to host a zebra retreat was with my friend Christy who lives just outside Chicago. I knew her from Chiari and EDS support groups on Facebook for several years before she went out of her way on a particularly difficult day of her own tests and appointments in Maryland to visit me during a long and lonely hospitalization for my initial AE/PANS/PANDAS treatment. We are kindred. Since meeting three years ago we have written many #pentopaper cards and notes and letters, emailed, texted and talked on the phone. Both our lives are impossibly knotted. We’ve longed to see one another again face to face, but it’s never happened. Tuesday night I texted her without hesitation, and she jumped at the strange and stressful opportunity to show me hospitality. She arranged for a car to pick me up and came out to the driveway to greet the mess that I was with an umbrella and a smile. It was late. Her husband and girls were in bed. She was reeling from a challenging and emotional week away for invasive diagnostic tests in Georgia. Everything about me showing up in the middle of the night was inconvenient. Sitting across the table in her warm and cozy kitchen with a cup of hot tea sharing hearts for hours…falling into the most comfortable guest bed with silky linens and perfectly plump pillows…waking to her beautiful face shining Jesus the next morning was God giving me a glimpse of His purpose for this detour in my life.

Since returning home Wednesday afternoon I’ve continued to experience intense intracranial pressure. Other symptoms that accompany this pain are also constant. My amazing miracle VP brain shunt is not working properly. Tomorrow my dad will drive me to Charlottesville, Virginia for a Monday scan and appointment with the University of Virginia vascular neurosurgeon who placed my shunt last April. I am undone. I begged God for a year without surgery. It was difficult to leave my family for the time in Arizona. Leaving them tomorrow is crushing. We are so close to Danica’s trip back to Baltimore to see her fusion and meet with her neurosurgeon. I don’t understand.

The rule of St. Benedict, “Always we begin again,” reminds me of fresh starts in Jesus. It invites a trust for my daily bread and the strength and Grace to move through time and space with exactly what is given to me. It encourages me in my Dayenu life of always enough. Chronic illness and daily suffering have a way of emptying over and over. Rising each morning asking God what He wants to do through this brokenness is a part of healing but never being healed. I am a beggar, aware of my need and completely dependent on His love. My life is an offering.

I can’t tell you what new thing He is doing in this pain, but I believe. I have to believe.

“‘Don’t be afraid, I’ve redeemed you. I’ve called your name. You’re mine. When you’re in over your head, I’ll be there with you. When you’re in rough waters, you will not go down. When you’re between a rock and a hard place, it won’t be a dead end. Because I am God, your personal God, your Savior. I paid a huge price for you’…This is what God says,…’Forget about what’s happened; don’t keep going over old history. Be alert, be present. I’m about to do something brand-new. It’s bursting out! Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.'”–Isaiah 43:1-3, 18-19, The Message

This is my heart song tonight. Soli Deo Gloria.

You might also like

Yesterday’s Pain. Will You Give Us a Hand? A Team Danica Update

by

miracles

“In the godforsaken, obscene quicksand of life,
there is a deafening alleluia
rising from the souls of those who weep,
and of those who weep with those who weep.
If you watch, you will see
the hand of God
putting the stars back in their skies
one by one
Yesterday’s Pain
Some of us walk in Advent
tethered to our unresolved yesterdays
the pain still stabbing
the hurt still throbbing.
It’s not that we don’t know better;
it’s just that we can’t stand up anymore by ourselves.
On the way of Bethlehem, WILL YOU GIVE US A HAND?”
–Ann Weems

We have weak hands and feeble knees this morning.

We were discharged from the hospital yesterday late afternoon and made our way to a Springhill Suites in Gaithersburg for our remaining time here until Danica sees Dr.Theodore again is cleared to travel. Discharge went as smoothly as any I’ve ever been a part of. Many departments assisted in helping us with the details of support and care after leaving. This included arranging for physical and occupational therapy to come here to the hotel so there would be no lapse in Danica’s healing progress. Danica and I had negotiated a plan for taking her oral medication that seemed to be working after a horrific period of trying to transition her that included vomiting and hysterics. They were ready to bring in behavioral psych for an evaluation…something I opposed as strongly as discharge to a rehab facility. She had taken several doses with no event, and I thought she was ready. There are several beautiful photos of us leaving the hospital smiling. The pictures I don’t take tell a larger part of the ongoing struggle.

DCvideo

We arrived safely to Washingtonian Center. Many of you know we lived here for over three years. Danica was born just down the road at Shady Grove Adventist Hospital. This feels like home to us. The Children’s House was a convenient and much less expensive place to stay pre-op and a perfect crash pad within walking distance to the hospital for Dan and our things during Danica’s week long hospitalization. Unfortunately the building and rooms are very old. The rooms are not set up for the kind of accessibility and devices Danica needs for her particular kind of recovery. This hotel room is arranged in the traditional Springhill Suites style that has always worked best for our family during trips for medical appointments. We have a small refrigerator and microwave, a sofa that folds out into a comfortable bed for Dan and a king size bed for Danica and I to snuggle in that keeps me at her side constantly throughout the night. Most importantly the ground floor suite has the extra room for ambulating, grab bars in the right places to assist Danica and a handicap shower with seat and bars. It is perfect. We are close to every possible kind of food to help get Danica to eat, and the Target which includes CVS pharmacy is right here too.

We checked in and EXHALED. We had done each next thing and graduated to a place closer to getting home.

Within the first hour of check in the manager of the hotel knocked on our door with a gift bag of treats for Danica. I’ve written before on my old blog about extraordinary customer service at many Marriott hotels across the United States as we’ve traveled for the best care. These are not Ritz Carlton hotels, but they carry this level of service across their brands in the training of exceptional employees. This gift bag came from THEIR heart and not a company manual. This was unexpected grace.

SpringhillSuitesKindness

We dosed Danica with oral Tylenol and Valium and replaced her Lidocaine patches around the large wound on her back just before leaving to try and make the drive here the least painful as possible. She was so visibly thrilled to be here without the constant rounding of doctors and nurses coming in and checking vitals. We were all thrilled. Dan ran out to get her favorite macn’cheese from The Corner Bakery. She ate the most we’ve seen her eat in over a week. I held off on the Valium dose until closer to bed so we could possibly not do any meds in the night and really rest. She was hurting. Her biggest complaint is not actual pain but the tightening and spasms of the muscles cut in the neck and her back. The PTSD reared it’s ugly head. I was tired and having a bit of a panic attack myself as the struggle in coaxing continued. Dan was trying to be helpful, but he had not been part of the majority of our negotiating the deal to take this particular medication if we were allowed to leave the hospital. She did tip the tiny amount back but proceeded to gag and throw up the medication and ALL the macn’cheese. I fell apart. She kept crying, “I’m sorry. I’m so sorry. I just can’t do it.”

I slept some last night holding her sweet little hand with our feet touching under the covers. She was restless. This morning I snuck out into the lobby for coffee and came back to begin my phone calls to make a new plan. In the last hour the neurosurgery resident has worked out for Valium in pill form to be called into the pharmacy here. Dan will go to pick it up, and we will try to crush it in something she will eat. We’ve tried this before. PLEASE pray we can find a way to get her to take this regularly without the battles and without throwing up.

Brain and spinal surgery is hard.
Hospitalization is hard.
Doing the next minutes and hours, days, weeks and months of healing and recovery on our own is perhaps the hardest.

Our hands are feeble.
Our knees are weak.

Thank you for all the ways, big and small, you’ve given us a hand. I’m receiving messages and emails about how you can help provide some kind of Christmas for us and how you can help when we return home. I plan to take some time today to work on the details and share. At this point I realize I will not be able to do any shopping or planning. Your love in these specific ways will be the hand we need.

Even miracles take time.
Our Hope remains.

“Strengthen the feeble hands, steady the knees that give way;
say to those with fearful hearts,
‘Be strong, do not fear;
your God will come…'”–Isaiah 35:3-4

You might also like

When All Else Falls Away. A Team Danica-Monica Update

by

Winterlight

There is a poem titled “The Invitation” by Oriah Mountain Dreamer. (Totally made up name or hippie parents!) I have loved it since college and lean into the last few stanzas over and over again,

” . . .It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.

It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.

It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away. . .”

Everything is packed. Danica is tucked in her own cozy bed for the last time before we step out the door into the unknown. We prayed with our fingers laced together and tears running down my face. “God, bring us back here to this place.” I told her how I take a mental picture of my bed and my room in my sanctuary, and it becomes the thing I fight to get back to when I am in the hospital or hotel after. When I think I’m too far into the pain or the trauma of all these trips and all these surgeries I think of home.

I am weary and bruised to the bone. My recovery has been slow. I know the stress of the fire we are headed into is part of the reason my body has resisted rest and healing. My cervical spine continues to spasm, but the searing pain is below my fusion rod in the thoracic spine. It is learning to hold my body and sustain all the movement I need.

Our entire family has moved back to survival mode. This is something we know. We understand these relationships are built on something stronger than good days. We have loved one another through very hard times before. As we move towards Danica’s surgery on Wednesday morning EVERYTHING ELSE FALLS AWAY. What will sustain us THIS time?

I read these beloved verses from Deuteronomy this morning. “This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now CHOOSE LIFE, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life.” My heart was hard and there was a root of bitterness. This powerful message dug it up in one big chunk and then watered my parched soul. We will keep choosing life. He will sustain us.

Your outpouring of love is part of His plan and purpose in our lives. Thank you. Your cards and gifts and continued donations to our family are sometimes the way He reminds us, especially on really bad days, He has not turned away. Your faithfulness mirrors His faithfulness.

We are humbly asking you to be prayer warriors for us. Please pray for travel mercies tomorrow as Dan and Laney drive the turnpike to DC. Danica and I will fly direct from Akron-Canton to Reagan. Our hope is the easy security, no luggage, close gate and one hour flight will save spoons and cause much less pain for Danica and I’s necks. Please pray for our last night together as a family for quite some time in the hotel in Baltimore. Please pray for Dan and I to grow closer not apart. We both have a hard edge about us today. It’s difficult to be so wounded and know we are heading to allow wounding to our daughter and not lash out or pull back. Please pray for Delaney as she visits family, comes to see Danica post-op and returns here while we stay on. She has such a brave face, but we’ve been leaving her and sending her away since she was four years old while I was fighting to give life to Danica. It’s a painful reality, and she’s conditioned her heart to protect it.

I checked my email tonight. I found the promotions tab which was emptied yesterday full of 405 Black Friday sales sent today. What if there is nothing in this whole wide world that matters except your little girl making it to one of the best hospitals and two of the best neurosurgeons in the world and surviving a rare and difficult brain and spinal surgery? What if all you want is to see her through this…out of danger and out of pain…back in her bubblegum pink room with “Sleep Sound in Jesus” playing her to a peaceful and comfortable sleep? This is when ALL ELSE FALLS AWAY.

I’m going to crawl into my bed now. I’ll play my hope playlist and try to sleep a little. I’ll try to pray a little too.

“Father God, Love us as a mother loves her children. Pull us to your breast and give us comfort and rest. Hold our hands and our hearts in this hard and bring us through the gauntlet to give you praise and glory. By Him. For Him. Through Him. Amen.”

You might also like

Still Walking. A Team Danica-Monica Update

by

At home
I still walk.
Doctors, looking
down at me, say
YOUR SPINE IS DISINTEGRATING,
STAY IN THE WHEELCHAIR OR ELSE.
Or else what? I’ll never walk again?
Never stand up? Of that
I am not afraid.
I am afraid
of sitting down
for the last time.

So,
I still walk at home.
Unlock the door,
wheel inside, then
up:
My remembered feet
on the cool slate,
My gaze straight into Gran’s painted eyes.
Someday, I will have to look up
to remember…
or take her down with me.

For now
I still walk at home.
Nothing fast, nothing fancy,
Nothing but one foot in front of the other,
Which is everything, really,
Everything if you appreciate
the shift of weight from heel
to toe, the way your arches
sigh into the carpet, and
the small dance that happens
when you just stand still.
–Lynn Goldfarb

I searched for a stock image of a younger person using a walker. One in a medical institution would have worked, but I really wanted one outdoors, maybe a young woman like me walking in the sun and leaves. There were hundreds of photos of older people with someone caring beside them helping them take each next step. There were no photos of a forty year old wife and mama gripping a metal support with wheels praying each step will take her closer to restoration.

In a way it’s sad I don’t write much during the several weeks between major surgeries and days like today when the fog begins to clear, and I’m able to process the pain and grief I’ve endured. I know I’ve lost wise things, and I’m sure I’ve buried others. This is how we survive any recurring trauma isn’t it?

Twenty-four. It’s a lot of anything. It’s a crazy amount of wounding.

I felt afraid. This terror was new and different. Fear is rarely part of these operations anymore. My pain becomes a place I’d rather die than keep living. I get a scan, see the new damage and mark the date on a calendar. I don’t ask myself how many patch jobs we can do before my spine disintegrates. This time as I woke from anesthesia I wondered if we’d gone too far. I had oxygen, but I couldn’t breathe. If I stayed awake I could make myself take breaths, but I was under the plastic bag of too many drugs. I just wanted to sleep. Every time I fell asleep I stopped breathing. An alarm would sound. I’d jerk awake. The nurse would remind me, “BREATHE.”

There was something about the way my body was positioned during this surgery that completely ruined my hips. The op notes are vague. I know part of the pain and inability to walk alone was from the bone marrow aspiration from my right hip. Once we moved to the hotel my sister and sister-in-law would help me to the bathroom. I felt my legs dragging behind me as I held onto the walker for dear life. There were burgundy stripes in the hotel floor, and they became like little mile markers for my marathon.

I’m grateful for hard fought battles won. I’m thankful for the scars, new and old alike. They are my beauty marks.

I won’t JUST sit in a chair.
Not even my “nest” chair.
I will put one foot in front of another.
Which is everything really.
It’s everything.

Presurg

Postsurg

You might also like

When I Simply Cannot Pray. Help

by

hospital

Some mornings she simply cannot
bring herself to pray. Even so, a prayer
will at times break through her clenched lips,
announcing the slow drain at her heart.
She will raise her face from its cage of fingers
and gape at the fog that has lain itself down
over the field behind her house like
a dream of erasure. Even the green trees have
lost color. No air breathes. Not a wing of sound
flies back from the highway behind the hill.

And then some midnight, when faith
has quite emptied itself, a familiar loneliness
makes itself at home under her ribs.
A ghost of God? An inkling? She holds
her breath, listens as a small draught
weathers its way through the eaves,
into her ears. The next moment she hears her child
stir in the room down the hall, calling
her name, as if (s)he names her longing and in
that naming, names a kind of answer.
–Luci Shaw, The Angles of Light

I texted a friend last night. “I’m losing my religion.” Yes, full blown, Michael Stipe singing in the background, losing it.

“Oh no, I’ve said too much.”

It was day three of a new round of plamapheresis slowly emptying the flaring infections attacking every part of my body and brain. It is always grueling. I arrive early to have labs drawn. It takes a few hours for the numbers to come back. Twice, last Thursday and today, my treatments have been cancelled because my fibrinogen is too low. The hospital where I receive treatments is in a major shift in their dialysis unit. It’s left them with only two nurses who know how to run the machine I need. My usual nurse leaves tomorrow for a long vacation and the other nurse is off all this week. We were trying to cram five treatments that should be given every other day into less than a week, and my body appropriately screamed “No way!”

As Dan was driving me back to the hospital yesterday I was on the phone with Cincinnati Children’s confirming what scans Danica will be having next Tuesday. Realizing my last pheresis will be Monday, the day before we take this oh so hard trip, I was already unhinged. The head ortho nurse looked back in the spine conference notes and said it indicated a CT angiogram that had not been ordered. Trying to get this scheduled at the last minute is nearly impossible even at the main campus much less at the Liberty location where our other scans and appointment is. She said she would work on it and call me Thursday. Yes, this is how things happen in health care. There is clinic and surgeries and other people’s children in the balance. I learned long ago how to walk the delicate line of being a strong advocate and also a compassionate patient. When my daughter is in the exam room or on the OR table I want others to respect and care for us too.

When Dan picked me up several hours later I was ashen, freezing cold in 80 degree heat, crazy nauseous and tired and never more aware of how hard all this is. Anne Lamott writes in her treasure of a book, Help, Thanks, Wow: The Three Essential Prayers, “If I were going to begin practicing the presence of God for the first time today, it would help to begin admitting the three most terrible truths of our existence: that we are so ruined, and so loved, and in charge of so little.” Yes. This.

I am ruined. My body failing me over and over again in countless ways is the ultimate betrayal. It’s never been about believing God can heal me. It’s surrendering to the fact it will not fully happen in this life. There are some victories. The fight is not in vain, but I have to put out a white flag on this complete healing thing. In eternity, yes. Here, no.

I am loved. So loved. My friend who takes me to treatment and comes to get me whenever she can is love. I don’t call her. She calls me. She knows the asking is my Achilles heel. Her calling her son-in-law to help when she can’t is love. Him coming on his precious day off is love. The same friend’s husband buying our favorite Stouffer’s frozen enchiladas while he’s shopping is love. The expression on his face when he sees me and the wisdom in his words, “There’s nothing I can say,” is love. Another friend showing up with an unplanned meal on a day our family was near implosion is love. Tuna casserole can in fact be manna. A package in the mail with epsom salts, unscented lotion and herbal tea and #pentopaper encouragement is love. A friend showing up with food, pet meds and a check from a lemonade stand her sweet girls had to help with Danica’s trip is love. All your donations on our gofundme site are scandalous love. Your prayers, especially when I just cannot pray for myself, are love.

I am in charge of so little. Really, nothing. I can’t orchestrate the rest of this treatment and plan rides to and from even if I asked for help. I can’t predict exactly how our Cincinnati trip will go. Both outcomes of these scans and appointments are worse case scenarios. I can’t tell Danica it’s all going to be okay and soon she will be able to run and play. I can’t ease her very real fears about the future of this broken metal in her neck that once gave her a miracle. I can’t keep my Laney safe while we are away or heal any of the scars leaving her over and over again all these years have left on her heart and mine. I can’t pay our bills. I can’t stop the constant swirling spreadsheet of debt from cutting off my air supply and sending my body into a stress induced panic every time the phone rings or the mail truck pulls away. I can’t go back to work to try to fix all this. I want to work so badly. I want the prideful, self sufficient feeling of doing anything to make this less of a mess, but I can’t. I can’t give my husband the one thing he wants more than anything in the world–his Moni Kaye back. Worst of all, I simply cannot pray.

After my family was in bed last night I slipped into the pitch black sun room, laid on the cold floor and called the friend I texted earlier. She is always my place to tell the whole truth. I cried. I shook my fists. I told her how mad I am. I told her how I really want to give up. In the same breath I had to talk about the love. I couldn’t not mention the love. Something happened. In Anne’s same book she calls it a “divine limpness.” I was saying all the things to my friend I wanted to get on my knees at my prayer bench and say to my God.

“…In that divine limpness you’ll be able to breathe again. Then you’re halfway home. In many cases breath is all you need. Breath is holy spirit. Breath is Life. It’s oxygen. Breath might get you a little rest. You must be so exhausted…

Through prayer, we take ourselves off the hook and put God on the hook, where God belongs. When you’re on the hook, you’re thrashing, helpless, furious, like a smaller kid lifted by the seat of his pants by a mean big kid. Jesus, on the literal hook of the cross, says to God, ‘Help,’ and God enters into every second of the Passion like a labor nurse.

When you get your hooks out of something, it can roll away, down its own hill, away from you. It can breathe again. It got away from you, and your tight sweaty grip, and your stagnant dog breath, the torture of watching you do somersaults and listening to you whine ‘What if?’ and ‘Wait, wait, I have ONE more idea…’

You can go from monkey island, with endless chatter, umbrage, and poop-throwing, to what is happening in front of me. God, what a concept. It means I stop trying to figure it out, because trying to figure it out is exhausting and crazy-making. Doping it has become the problem.

So when we cry out ‘help’, or whisper it into our chests, we enter the paradox of not going limp and not feeling that we can barely walk, and we release ourselves from the absolute craziness of trying to be our own–or other people’s–higher powers.

Help.

We can be freed from a damaging insistence on forward thrust, from a commitment to running wildly down a convenient path that might actually be taking us deeper into the dark forest. Praying ‘help’ means that we ask that something give us the courage to stop us in our tracks, right where we are, and turn our fixation away from the Gordian knot of our problems. We stop the toxic peering and instead turn our eyes to something else; to our feet on the sidewalk; to the middle distance; to the hills, whence our help comes. Something else. Anything else. Maybe this is a shift of only eight degrees, but it can be a miracle.

It may be one of those miracles when your heart sinks, because you think it means you have lost. But in surrender, you have won. And if it were me, after a moment, I would say, ‘Thanks.'”

I hung up the phone, wiped my eyes and blew my nose. I peeked into my girl’s rooms on my way to bed. I remembered my Danica’s prayer, the one I was almost too jaded to hear, “Dear Jesus, Thank you for this day. HELP mommy to get her treatments and to get better. THANK YOU for my friend’s lemonade stand to raise money so I can see my doctors in Cincinnati. THANK YOU for my stuffed peas in a pod. (A gift from her friend she held tightly as she prayed.) Help grandpa and grandma to get home safely. HELP Anna Mae at her new home. THANK YOU for Jesus who died on the cross for our sins. HELP us be more like Him. Amen.” (This is a variation of her same bedtime prayer every night.) Her childlike faith and Sleep Sound in Jesus lullabies tucked her heart and mind safely in when I could not.

I crawled into my own bed, put my earbuds in and listened to R.E.M.’s old song “Losing My Religion.” I was transported back to the summer I saw them in concert at the Gund Arena. I was so far from God but wanting Him and needing Him so badly it ached. I held up my lighter during “Everybody Hurts” as tears ran down my face. Even then I know He heard my “Help.”

This morning Dan and I left our house at 6:30 am so he could drop me at the hospital for labs before he headed to work. A few miles down the highway I felt utterly sick, and we took an exit so I could run into a McDonalds and empty my stomach of the curdled worry and grief I’d ingested the night before. After the needle and the many tubes of blood I waited for hours to get the results. The director of dialysis found me in the sixth floor waiting room. She felt so badly about their staffing issues pushing me to come on days I clearly was not going to be able to proceed. She told me she called the nurse who was on vacation locally. Her daughter had a baby, and she took the week off to help her. She would come in Thursday to get another treatment in. I cried. More love. More thanks. I called my sister, Alecia, who has managed more nonsense in the past week than any one person should have to. I said, “I’m sorry. I need HELP. Can you come get me?” She rallied her girls, got them dressed and drove the twenty minutes to pick me up. I sat in the light filled atrium waiting. I turned my face towards the bright sun, and the Spirit groaned for me what I could not utter and then I said,

“Thank you.”

Amen.

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”–Romans 8:26

atrium

You might also like

An Inch Of Daylight. If I Want To Live

by

inchofdaylight
“My heart is troubled, my strength fails me,
And the light of my eyes, even this is not with me.”
–Psalm 37:11

It was a shadowy week.
Not just Ohio cold and grey.
Not just smudged with Lenten ashes grey.
Not just a big inky cloud I can’t explain away grey.
It was so dark I couldn’t see my hand in front of my face.

Every morning I woke early with my family to move through our routine. As soon as they left for work and school I would make the girl’s beds, wipe the kitchen and bathroom counters and sinks, straighten the house for Better Homes and Gardens and then stumble to my own bed. Curled in the fetal position under six heavy blankets I was gripped with a paralyzing fear this would be the time I might not find my way out of the chasm of despair.

If you’ve ever tried to die before you understand there’s nothing worse than failing at it. If you’ve ever endured intake for an attempted suicide you understand the high stakes to get it right the next go round. I don’t believe in levels of hell, but if I did a hospital psych ward would be at the very least level one. This knowledge makes the slipping even more frightening. I can make a way of escape once and for all or I can hold on here. The lie is there is no real help to be found in the middle.

“On a scale from one to ten how likely are you to harm yourself?” The wrong answer to this question lights a fuse you have no power to put out. It’s really better to fudge the numbers. “Have you thought of specific ways to end your life?” Never, ever tell them how you would do it. People who love me and have sensed me slipping away say, “Call me. I mean it. Anytime of the day or night. I’m here.” They remind me I have to let them know when it gets this bad. If I’m faking being okay when I’m not they can’t help. I run through the short list. Lord, people have so many hard things to deal with. I can’t be one of their hard things one more time.

“My soul is exceedingly sorrowful, even to death.
Stay here and watch with Me.”
–Matthew 26:38

Until a few years ago, when I was finally diagnosed with Autoimmune Encephalitis and Adult PANS/PANDAS, I could only explain the sudden onset of the episodes as if a demon was coming over me even though I knew I was ultimately protected from them. I was mostly happy and hopeful even in the midst of intense daily pain and extreme life stress. Out of no where it would rush over me. I wanted to die. My healthcare professionals continued to try to understand and treat me as some variation of Bipolar, the best diagnosis they could squeeze out of the DSM. I now know there are chemicals, bacteria and viruses able to hair trigger me into debilitating physical and neuropsych symptoms. These are things completely out of my control, and my autoimmune disorder sets me up for continuous infections and cycles of sickness. As soon as I begin to feel unwell physically I become disoriented by hissing lies about the worth of my life. I have never really fit the depression diagnosis. I’m just not a sad person. Serious, yes. Sad, no. Every time it happens there is a moment when my mind and heart fade to black. The physiological starting place is compounded by a life of what can only be described as continuous pain that is often excruciating. This means I am already always standing on the ledge.

You want to live a long life. You want a future and a hope here on earth. You are maybe even afraid to die. I want release. I know there are people who need me now. I believe God has a purpose for me or I wouldn’t still be alive, but I want to go. I’m ready to go.

“Then they cried to the Lord in their afflictions,
And He saved them from their distresses;
He sent His word and healed them,
And delivered them from their corruptions.”
–Psalm 106:19-20

This year I am working through the She Reads Truth Lent study. It’s good. The best part is it’s mostly just straight up God’s Word. When your heart is torn wide open and fleshy with need the living and breathing part of Scripture finds an especially perfect soil to take root.

I am crying to Him in my distress.
I’m LISTENING hard.
I’m pointed east.
I’m looking for the light.

Another Lent resource I have used for many years is a small book of daily readings by Emilie Griffin titled Small Surrenders. She suffers from chronic illness and tells of one of my favorite poets, Gerard Manley Hopkins, as an example of a man “plagued by frailty and weakness, not just physical but psychological. At times he would plummet into an abyss of darkness, what he called ‘cliffs of fall.’ The steep dropping-off places of the soul seemed worse than any physical distress. This, therefore, was Hopkin’s prayer, his hope: ‘LET HIM EASTER IN US. BE A DAYSPRING TO THE DIMNESS OF US.’

The sun was shining this morning as I drove to my counselor’s office. I played the JJ Heller song “Daylight” over and over and over again on the way there and the way back.

There is an inch of daylight underneath the door.
It’s enough for me to fill up my canteen.

If I want to live
Your love is what I need.

Be near me.
Be near me now.
Be near me.
Be near me now.

There is an inch of daylight underneath the door.
It’s enough for me to fill up my canteen.

If I want to live
Your love is what I need.

“You do not want a sacrifice or I would give it; You are not pleased with a burnt offering. The sacrifice pleasing to God is a broken spirit. God You will not despise a broken and humbled heart.”–Psalm 31:16-17

Photography by Cindee Snider Re. Used with permission.

JJ Heller’s “Daylight.”

(Thank you for praying for me in the “Shadowlands.” This is the first February in several years I haven’t been able to escape to Arizona. Those trips were times of retreat and healing but also reminders I could be some better. I’m missing the desert. For me it was a little like the Promised Land.)

You might also like

If I Leave? Why I’m Going Away

by

DSC_0164

I’m sitting here in bed with a blinking cursor pushing me to keep adding words to this sentence, this paragraph and this post. I have six windows open on my laptop. My email, Facebook, Twitter, Pinterest, Instagram and WordPress are all places I share community. They are good. The relationships I’ve made and sustained on the web keep me from feeling isolated in my mostly home bound life. I connect with beautiful TRUTH here. I learn your stories. I watch your lives unfold for the glory of God. I share in your pain and struggles, and I pray for you. I celebrate your victories and accomplishments. I also channel my online life into real life with paper to pen, care packages and, if you live close enough, by inviting you to rest awhile on my yellow sofa to know and be known by me. I schedule phone dates with far away friends and even strangers who need pieces of my story to take the next step in their own. When I am not doing these things I am managing my own health care, wrestling with insurance and debt collectors and getting treatment. These things fill my days until my children and husband come home. I try to pour into them what I have left which is often the least of me. Every night I swallow five crazy pills supposed to slow down my brain and my body enough to rest, but I fall into bed with a racing mind and bursting heart. I make lists in my head or on scratch paper on my nightstand in the dark. I am overwhelmed by all the people I need to pray for. I am wanting to remember your birthday or send you a note of encouragement, because it might be the only real mail you get in your hard this week. My life is full because of this screen. I am grateful for it. I also know it is time to step away.

Something bred out of this culture of continuous sharing is the absolute inability to believe the world can and will go on without our input. We don’t know how to do real retreat. We don’t know how to stop the whispering or the shouting long enough to decide who and what we really are without it. I see this as blatantly in the Christian community as I do in secular media. Those of us who write are particularly prone to feeling we must keep our words out here. Isn’t that why God gave us the gift? I have been blogging since 2008, and it has been one of the most beautiful and challenging things I’ve done in my life. I’ve told truth here I would have never been brave enough to bare in any other place. This has wrecked me and healed me. The hundreds of people from around the globe who joined our Team Danica journey encouraged me to know people are hungry for community, and we are all more the same than we are different. My blog and social media gathered an army of prayer warriors for us. It became a place we humbly made our great need known and where God chose to meet much of it. I am grateful for it. I also know it is time to step away.

My heart aches to have been writing and submitting a book for publication before all this. I wish I could tell my story, birth it and give it away. No build up. No platform. No marketing plan or commerce. Just a year and a half of heart work poured onto pages. God, do with them what you will. Take my name off. He is the author. I am merely a character in this narrative of redemption. I’ve been told I am naive. I’ve been asked if this desire is driven by fear of failure. I’ve been asked if I want to be a writer or if I just have this one amazing miraculous tale to tell. Publishers don’t just want one good book. They want to know if you have another and are worth the investment they make in you. I wrestle with the deep threads of faith in my book making it a book only Christians will buy. Do I really want to shine my light into an already lit room. If not, do I pull a few golden stitches out and hope the Jesus shines through the strength of the story itself? I’m asked to focus on my target audience. Is it people who have suffered and are suffering? Is it my ever growing community of EDS and Chiari people who hurt exactly like I do? Or is this a story about finding gifts no matter what your gauntlet making it a book for almost anyone, because none of us are immune to the struggle?

If you’ve been reading here you know I had my twentieth surgery and seventh neurosurgery on June 24th. I never wanted this “new” blog to be focused on my continued pain, treatment or disability and especially not about our ever growing need for support. This is why I’ve been very quiet. Here’s the rub. This is my life. I spent the first eight weeks of my recovery without words. It scared me. I cried more than I have ever cried in my life, sometimes hours at a time. The loss of range of motion in my neck and the new normal I was facing terrified me. The pain from having skin and muscle and nerve cut down my head and spine for the third time in the same place was driving me into despair. I wanted to quit, and I felt the story I’ve labored over was a farce, because I couldn’t see a gift anywhere. At the bottom of the valley I had my finger on “delete.” God stopped me.

I cannot answer many of the questions I’ve asked above. I do know God is asking me to be quiet, pull away from ALL this here and focus completely on what I know for sure He called me to do. This means saying no to people in all kinds of ways. This means my children and husband will lose even more of me as I set my jaw like flint to finish this work. This means I have to believe my presence in your life on this screen is not necessary for a period of time and trust God to bring you other encouragement. This means I’m asking you to respect the absence but promise me you will be here when I return, because I will miss you all, and I need you too.

I remember a poem written by L.L. Barkat in her precious book “God in the Yard.” I found it quickly tonight as I pulled my well worn copy from the shelf. I had forgotten she wrote it for Ann Voskamp. I wondered if Ann was feeling these same struggles as she poured herself into her first book. I will leave you with it tonight.

Stayed: for Ann Voskamp

Why do we not
leave home.
Is it really for fear
of what lies
beyond, or rather
for fear that the
roof will abscond
with the doors
and the shutters
we’ve always known.
And who would they
blame if it happened
just so, if the whole
curtained place simply
picked up its stakes,
disappeared on the wind
in our absence. What
are we really afraid
of, why do we not
leave home.

I will be gone literally as much as figuratively over the next two months. I leave a week from today for a trip to Maryland for a scan and fusion check up with my neurosurgeon. I plan to head further south to the Virginia valley I love between the Blue Ridge to see my Angie after this. God has provided for me to take an overnight trip with dear girlfriends, a very long weekend at the beach with one of my most faithful five and an entire week of writing on Lake Michigan as I finish out my thirty-ninth year of life. Will you please pray for me physically as I continue to heal and learn how to live once again with new challenges? Will you please pray for the decisions I have to make about further PANDAS/AE treatment? I have decided not to continue chemo or add long term steroids, the next suggested steps from my physician, until my symptoms become unbearable and dangerous again. Will you please pray for God to provide for our family as He always has and for us to live this manna life with great joy. Will you pray over the words I am committing to write as I finish “Gauntlet with a Gift” and for God to make clear the path where it should land for His glory? I humbly thank you for taking these things to our God who already knows what we need and still beautifully invites us to enter in by asking.

(I will continue to publish Thursday’s Gauntlet Story Feast here, because your stories are important and are one of the main reasons the book was conceived. I have made commitments to several author friends to help launch and promote their own soul work, and I will be showing up, because their books are changing me, and I want you to read them and be changed too. Besides these things I will be quiet. If you truly need me I will check email and messenger daily.)

You might also like

Worthy. Gauntlet Story Feast

by

CindeeFlower

This week’s Story is an achingly beautiful poem about what it feels like to live with chronic illness when you are young, single, childless, unable to finish a degree, barely able to eat enough to keep you alive, body wracked with pain and mind and soul buried beneath the ultimate question, “What am I worth?”

Worthy
By Tessa Rice

My stomach is smooth, besides the loose skin refusing to leave. No sign of the map-like markings that tell a story of a child being born.
My flimsy body lays alone and empty on the couch, the space next to me reserved for the imaginary hero that doesn’t exist.
No wife. No mother. No matter.

Irrelevant stacks of papers and writings, books and ideas, clustered in disheveled piles of dreams lost.
Mirrors down, covered head, hidden in the darkest corner of an unlit room for one.
Haunted by visions and yearning of what I never was, what I became, what I am.
No career. No acceptance. No matter.

Twisting, pulling, panting, pleading, the clock reaches time of now. My Breath becomes labored as labor becomes wanting, as wanting becomes night. Endless.
Morning comes with the cruel roll of the dice, anointing me with sweat for remembrance of the dusk.
No health. No life. No matter.

My joy plucked and used away, for a Saturday, many years ago. A Thursday once was nice, but forgotten as disappearing moments once only drizzled away. Now a Broken dam. Flooded days. Memories lost. The shell of me imploding with fragility.
No happiness. No laughter. No Matter.

They look at me with a shade of pity, a touch of curiosity, and a wealth of resentment. Turning heads of society, justifiable only by practice.
Fighting, begging, scratching for the path that is mine. One that I know. One that I want.
Ripping blank pages from my unwritten story, my voice trembles as I speak
My hope. My fight. I matter.

Tessa

About Tessa in her own words:

I was diagnosed last year with EDS type 3 after 12 years of declining health that led me to be unable to walk, and with a horrible movement disorder called dystonia. In the last year I have had two neurosurgeries, including brain decompression and spinal fusion, as well as a tethered cord operation, and have battled gastroparesis and MCAD relentlessly. Despite these things, I still love music, singing, nature, and the ocean, as I spent many years surfing. I love to write, specifically poetry, love science and psychology, and have a deep desire to help others and animals. My 13 year old pitbull named Stella is my best friend and has helped me through everything. I continue to fight and push through always with the memory of my mother in my heart, choosing to not give up in her honor.

You can connect with her on Facebook here. You can donate towards her two most recent neurosurgeries here.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.

You might also like

Recapture My Heart

by

DSC_0055

I wish your care was always easy, predictable, safe—
a cool drink
a soft pillow—
but you are too wise,
too loving,
too committed to your work of
transforming grace.
So your gracious care comes to me
in uncomfortable forms:
the redeeming care of
disappointment,
the unexpected
trial,
suffering, loss,
These things don’t tell me you’re
cold-hearted,
absent,
uninvolved.
No, each is a sign of
zealous grace,
redeeming love.
I struggle to grasp how much you
care,
so I struggle to rest in that
care.
You care enough to give me what I
need,
not what I want.
You care enough to break my bones
in order
to recapture my heart.

By Paul David Tripp

You might also like

1 2 3