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Jun 11
2015

She Will Pollute The Shadows. Gauntlet Story Feast. Our Stories Of Strength giveaway

by Monica

“The world is rated R, and no one is checking IDs. Do not try to make it G by imagining the shadows away. Do not try to hide your children from the world forever, but do not try to pretend there is no danger. Train them. Give them sharp eyes and bellies full of laughter. Make them dangerous. Make them yeast, and when they’ve grown, they will pollute the shadows.”― N.D. Wilson, Notes from the Tilt-A-Whirl: Wide-Eyed Wonder in God’s Spoken World

I have written privately to my girls since they were in my womb in journals I will gift them someday. Dan too keeps a journal to them. We have amazing little rituals like writing notes to one another, especially if we are mad, sad or sorry. We have a treasure box where we keep them all. I know there are so many things we share that busy “soccer moms” might never get to with their kids. We snuggle a lot. We read and talk about what we read. We collage our visions and hopes and prayers for the seasons in our lives. We pray. Since writing “Gauntlet With a Gift” I have had this fresh perspective on the gifts that are wrapped in ugly packages like chronic illness and pain. I do believe our slow life, early bedtimes and lots of talking and listening to one another has shaped us. The compassion I see growing in both my girls for me in my suffering is forming their character.

Through all our hard we’ve tried to teach our girls these simple things. THE SHADOWS ARE REAL. Just because you know Jesus doesn’t make the sun shine all the time. THERE IS DANGER. Keep your eyes open. Laugh. You, be more dangerous. You, grow up bigger than the bad. You, shine brighter than the dark. YOU WILL POLLUTE THE SHADOWS, MY CHILDREN.

Delaney wrote the following as a paper for school. Because of the length and the necessary scientific references some parts are edited out. If you are interested in her full study you are welcome to contact me. I love she chose this topic to explore. I appreciate her honesty and conclusions about the juxtaposition of light and dark in a very difficult life for a child and adolescent to navigate. I grew from viewing our world through her eyes, and I hope you do as well.

Bringing Good Out Of Bad
By Delaney Jayne

In 2009, I was eight years old and found out that my little sister, Danica, had Chiari malformation. She was two when she had her first brain decompression. She was three years old and had to have a second brain surgery and rare spinal fusion. For a year and a half she was in a neck and brace and a wheelchair. Many long trips to Cincinnati Children’s Hospital for check ups left me at my grandparent’s house or with friends every time my parents and Danica were away. I learned to be independent early on because even when my mom was pregnant with Danica she had to be hospitalized in Maryland for three months, and I came to live in Ohio with my grandpa and grandma. I began kindergarten at Lake Center Christian School when I was only four years old.

Research suggests that when one family member’s health is challenged or unpredictable the whole family is affected. And while all children rely on their parents to help them feel safe and secure, parents in families with health concerns may be too preoccupied or overwhelmed to provide this attention. Other important family research states that some lingering negative effects on well siblings growing up with an ill sibling or parent may appear in late adolescence and early adulthood. Specifically, the later negative effect it has on their social functioning, including their ability to be comfortable and trusting in social relationships becomes a critical issue as a child matures. The results of the study also suggests that parent’s ability to manage the needs of their well children is crucial to their children’s resilience. If parents focus the majority of their attentions on the ill child at the expense of the well child, a higher probability exists that the well sibling would be susceptible to behavioral and emotional problems in late adolescence.

After Danica’s second surgery my mom quit her job to take care of Danica, and she was getting sicker herself. This, and many medical bills, led us to lose our home and live in my grandparent’s finished basement. Even though I had my own room, and we had our own bathroom, and a small kitchenette, it was a place to stay and not our home. My grandparents had just built their home one year before we moved in. It was brand new, but just like every basement there were bugs, very little sunlight and mold. My room didn’t have a window at all. This is when my mom started to feel even worse. She had several rough surgeries for endometriosis that had been growing all over her insides, but I think the stress of everything she did for Danica and the living environment made her feel the worst she ever had. She went to a doctor in Maryland and found out she had Chiari and EDS too. Her neck was always in pain and some days she couldn’t lift her head or even get out of bed. My life changed drastically when Danica had her first brain surgery and hasn’t been the same since. Really, it began back when mom got pregnant with Danica in 2007.

An issue of The Journal of Child and Family Studies published in 2012 states that when children grow up with a parent who has a chronic medical condition they are at risk for adjustment difficulties. Illness or disability in the family can have many effects, negative and positive. Differences in behavior, academic outcomes and psychosocial outcomes may occur. Many benefits can come as well, like becoming more responsible, being a kind and loving person, and valuing life.

Children in families with disability or chronic illness usually face real life concerns at an earlier age than most. This was definitely true for me. I feel like I had to grow up quickly because I had more responsibility for my own self care, school work, and around the house than most kids my age, One of the biggest ways my life is different than my friends is how much we are at home. My mom is in bed a lot and never knows how she will feel, so we cannot plan ahead, and I rarely get to have anyone to my house. She is allergic to all kinds of smells, so she has trouble coming to events at school and cannot go to church. She can be feeling okay one day and suddenly be very sick.

The American Academy of Pediatrics published a study that highlighted the positive opportunities of growing up in a home with a chronically ill sibling and parent. It can provide opportunities for the family to bond closely and develop resilience. For our family this is definitely true. No one understands how hard the past eight years have been for us. We appreciate small things and good days others might take for granted. I also have an understanding of pain that helps me be empathetic to others hurting. I know what it is like to lose material things and be aware of what really matters. I appreciate my mom and how hard she fights to keep moving. This has taught me to never give up. Even though we don’t do a lot of normal things, we have more time to just be together instead of running from activity to activity. For me, my grandparents really helped take care of Danica and I while my parents were away for medical reasons, and often times people provided meals on days where my mom was too sick to cook. I know what it is like to be loved by many other people.

Going through all this has been really hard for everyone in the family, and as I get older and grow up I will always remember everything that has happened to me through the years. It may make me feel sad or depressed, but I know many benefits have come out of it all. I have become more mature and responsible with my chores, taking care of Danica as well as my mom and much more. Most kids my age get together with their friends all the time, but I never have anyone over to my house except my friend Lauren. She has been my best friend since kindergarten and has stuck by my side since then. She has encouraged me through everything my family has been through.

My life has been full of sadness, and it has been hard to get through it all. There are times I wish my family was different, but I also know God is using the bad and the good to make me into who I am supposed to be. I have learned that family is very important when you are in a situation like this. God has also been a big part of it all. He has healed my sister and encouraged my mom mom through all her surgeries and treatments and trying to make it through day by day.

It’s true negative things can develop from growing up with a family member who has a chronic medical condition but many benefits can come as well.

About Delaney Jayne:

Delaney Jayne is twelve years old and entering the eighth grade in the fall. At four years old I let her leave me in the hospital in Maryland and come here to Ohio with my parents to begin kindergarten. She has always been fiercely independent. She sees the world through color, pattern and texture. She collects vintage cameras, lockets and art books. She loves Jesus, Audrey Hepburn and Harry Potter. She is friendly with all but has one or two close friends. She guards her heart. She dreams of traveling to Europe and having her own life far away from here. I hold her loosely.

I am donating the highly anticipated book Our Stories of Strength: Living with Elhers-Danlos Syndrome as this week’s giveaway. Mysti Reutlinger and Kendra Neilsen Myles have beautifully woven together an inspirational collection of stories, filled with devastation, heartbreak, triumph, and strength as written by those affected by different types of Ehlers-Danlos Syndrome. Our community’s dear geneticist, Dr. Clair Francomano writes the foreword.

WHEN DID YOU FIRST HEAR THE WORDS EHLERS-DANLOS SYNDROME? WHEN DID YOU FIRST SUSPECT YOU OR SOMEONE CLOSE TO YOU MIGHT HAVE THIS CONNECTIVE TISSUE DISORDER? Enter for a chance to win a copy of this amazing book by leaving a response here in the comments section of this blog post. Share this story somewhere on social media with the links below using the hashtag #GauntletStoryFeast. Each share will be an additional entry to win the book. The winner will be randomly chosen next Wednesday, June 17th after midnight and announced with next week’s Gauntlet Story. Don’t worry! If you don’t win, you may also click through the above link and purchase the print or Kindle version on Amazon. Please join the Our Stories of Strength online community here.

SHARE YOUR STORY. 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.

May 13
2015

A Quote. A Poem. A Song. On Hope

by Monica

“The difference between shallow happiness and a deep, sustaining joy is sorrow. Happiness lives where sorrow is not. When sorrow arrives, happiness dies. It can’t stand pain. Joy, on the other hand, rises from sorrow and therefore can withstand all grief. Joy, by the grace of God, is the transfiguration of suffering into endurance, and of endurance into character, and of character into hope–and the hope that has become our joy does not (as happiness must for those who depend up on it) disappoint us.” ― Walter Wangerin Jr., Reliving the Passion: Meditations on the Suffering, Death, and the Resurrection of Jesus as Recorded in Mark

I wanted to write today, but my head hurts so badly I cannot form complete sentences. I need to take some pills and crawl into bed. Dan will leave work early to help with the girls. I do it rarely, but we both know when it hits like this I have to clock out.

On the way to my cool, dark room I got on my knees at my prayer bench. I couldn’t even muster a guttural plea. Not even a “Dear God, Please.” Nothing. Numbness. I held my favorite heavy gray stone in my shaking hands. It is engraved with my life word. HOPE. I thought of a song I’ve claimed as “mine” for eight long years. How do the lyrics go? I came back to my computer to find my folder on hope. It’s a digital scrapbook of anything I’ve ever read, watched or listened to on the subject. Next to the download of Natalie Grant and Christa Well’s song, “Our Hope Endures,” the above quote is saved in a text file. I listened to the song. I read the words, and I wrote this. It is only the second poem I’ve written since my early twenties. I’m going to lie down and soak my pillow now.

Pain.
I call him Sorrow,
Because there are no new words.
I’m crying out,
“How long, Oh Lord?”
Does He hear?

Happiness.
I miscarried her early on.
I don’t visit the grave.
I won’t miss someone I don’t know, but
She didn’t deserve to die.
Should I believe this?

Joy.
Born of suffering.
Endurance was the doula’s name.
Her mother was Hope.
I held her wet with vernix.
Would I clip the cord?

Grace.
The place we live together now.
Adoption is true religion.
Character is the swaddling cloth.
Suffering is transfigured.
Could this ever disappoint?

May 10
2015

Mother Risk and Rest

by Monica

The smooth notes of Ray Lamontagne’s “The Best Thing” swell on the stereo. The girls are playing with the miniature doll house and have been for hours now. I hear Danica’s near pitch perfect whistle along with the bluesy tune. It’s one of those rare and extremely peaceful times when the five years between Delaney and Danica do not matter, and they are simply sisters lost in a pretend world together. I am exhausted from driving to Walgreens by myself to get Mother’s Day cards. It felt good to brave the car and the road and the store all by myself, but I felt a little panic too. I am coming to understand my courage comes in fits and starts. I am perhaps one of the most daring people you will meet when it comes to the ability to push myself and do almost anything independently. Most people were stunned I did most of my hospitalization in Maryland alone. I chose to be discharged alone and fly home alone last Saturday. These decisions are purposefully made in sacrifice to keep my girls here, safe, in their own beds and their own home with Dan and my family who will care for them the next best to how I would. I have consciously chosen to have less personal support so they would have more.

Delaney wanted to go to a sleepover tonight. I don’t know the family well at all. It’s my first weekend home, and it’s Mother’s Day tomorrow. I said, “No.” Delaney cried and begged. I offered for her to go hang out with her friends, but I would come get her at bedtime. I told her I want her here, across the hall from me to sleep. She said the words I know are true, “Mom, I just wish you weren’t so OVER protective ALL THE TIME.” She’s right. I am. I wasn’t like this when she was young. Yes, I was vigilant about the right car seat and sunscreen and anti-tip wall anchors, but I was much more trusting of others and nurtured her free spirit. Since Danica’s neck went crooked everything in our lives is a calculated risk. Delaney has paid a high price for all this. I choke on knowing for sure I may have robbed her of something I simply cannot return now.

I read Ben Carson’s book Take the Risk again this week. I don’t think I’ve pulled it off the shelf since 2010 when we were making huge decisions regarding Danica’s surgery. I raced through his wisdom about the right questions to ask when making important life calculations, especially big medical ones. Toward the end of the book he specifically talks about the risk of parenting. He shares how developing young adults need to be allowed to have “acceptable” risk in their lives to redirect what can become dangerous risk taking behavior. I’ve taken this to heart as I watch my girl this weekend. Delaney is eleven going on twenty. If you know her you understand what I mean. I trust her with so much. Still, I am fiercely needing to keep her safe.

I am not like most other moms. I won’t get the card thanking me for shuttling my kids to practices or cheering them on at games or performances. I won’t be recognized in their graduation speech as the mom who was “always there for me.” My girls haven’t had big birthday parties, hand decorated cakes or lots of fun outings to explore the world. They haven’t had all the lessons and social opportunities most kids in their peer group do. They haven’t had a faithful church mom who is the example of weekly attendance and volunteering in programs and events. I haven’t been a “normal” mom. I’ve been sick a lot. I’ve been gone for long periods of time emotionally and physically. Through all this I’ve been brutally honest with my girls about how insanely beautiful this life is and how much hurt necessarily runs along the same path. I talk about fear when I’m afraid. I talk about hope because I believe with all my heart His perfect love casts out fear. I write my girls on days when I mess up and fail them. I try to piece together a genuine narrative for them not only about their childhood but about my story woven into the fabric of these foundation years. I don’t want them to compare their roots to that of their friends or Hollywood. I want honest expectations of sinners saved by Grace doing the best they can with what they have TODAY. In the morning I greet them, “Hello beautiful, How did you sleep?” At the end of the day I kiss them goodnight and play “Sleep Sound in Jesus.” I pray for them. I pray for them. I pray for them. It’s a risk, this love thing . . . this mother thing. It’s a huge risk, and it is so constant I feel myself holding my breath at least half of the time.

In a beautiful little book titled LIFT by Kelly Corrigan she writes,

“My default answer to everything is “no.” As soon as I hear the inflection of inquiry in your voice, the word no forms in my mind, sometimes accompanied by a reason, often not. Can I open the mail? No. Can I wear your necklace? No. When is dinner? No. What you probably wouldn’t believe is how much I want to say yes. Yes, you can take two dozen books home from the library. Yes, you can eat the whole roll of SweeTarts. Yes, you can camp out on the deck. But the books will get lost, and SweeTarts will eventually make your tongue bleed, and if you sleep on the deck, the neighborhood raccoons will nibble on you. I often wish I could come back to  life as your uncle, so I could give you more. But when you’re the mom, your whole life is holding the rope against these wily secret agents who never, ever stop trying to get you to drop your end.

This tug-of-war often obscures what’s also happening between us. I am your mother, the first mile of your road. Me and all my obvious and hidden limitations. That means that in addition to possibly wrecking you, I have the chance to give to you what was given to me: a decent childhood, more good memories than bad, some values, a sense of a tribe, a run at happiness. You can’t imagine how seriously I take that—even as I fail you. Mothering you is the first thing of consequence that I have ever done.”

If I do nothing else, this mothering thing is what I will be measured by.

No wonder it’s all so scary so much of the time.

Every day I’m given my Delaney Jayne and Danica Jean I step outside my comfort zone and dare to love the best I can. Early on I thought it would never be enough. I know now He is making me exactly enough and the places I can’t fill He wants them to seek Him instead. It’s not dangerous at all when you believe what I do. Our days are written. Our sovereign God has a perfect plan and nothing I can do will mess that up for them.

No mother risk at all.

Just rest.

(This post was first published a year ago, May 10, 2014, on Team Danica.)

May 7
2015

United We Stand Taller and Braver. Gauntlet Story Feast

by Monica

I met this week’s Gauntlet story writer in the waiting room of our neurosurgeon in Chevy Chase, Maryland. She was strikingly beautiful. She and her husband were waiting for a post operative appointment. I remember their humor and obvious love for one another. I remember the Brooks Brothers bag they carried with a gift for our dear Dr. H who is never without his navy blazer and beautiful silk ties. After our short meeting Sarah and I connected online. We’ve mailed pen and paper notes and small gifts across the pond. We’ve encouraged one another in the ups and downs of this maddening battle between our minds and hearts and all we want to do and be and the limitations of our broken bodies. Sarah is a shining example of the special sorority of suffering that has formed through the years in both our lives. Would I take all this back and not know her? Never.

United We Stand Taller and Braver
By Sarah Fatherly

I ponder my personal gauntlet with chronic illness and the devastating effects this has brought to my quality of life, and the waters are muddied.

One gift stands out.

People.

As humans we are not made to be solitary creatures, but when struck with illness, particularly chronic and rare, we suddenly find ourselves plucked like fish out of water or a flower out of soil feeling lonely and isolated. If we are lucky enough to having a loving and supportive family our pain is eased somewhat. But what happens when the kids go to school, spouses go to work and the time we spend with them is fraught with obstacles and guilt? At this point we have often lost contact with friends as we struggle to keep up with the demands of socializing with any regularity. I spent five years of agonizing isolation and acute loneliness resulting in a depressed and morbid state. When I did feel up to activities with others I never felt like me. Who I used to be and who I wanted to be had slowly been chipped away. We see who we are through the eyes of others and without their reflective gaze we find ourselves in a crisis of identity. It wasn’t until more recently that I found myself on a new voyage of self discovery and ultimately a road back to myself.

Needing neurosurgery is never an enticing prospect. Needing to travel across the Atlantic away from family for an extended period even less so. This was my reality in 2014. It goes without saying that all the doctors, nurses and my surgeon were a great gift, but it is the unsung heroes in my journey who were shining treasure.

Melanie was my first gift. Before I even got to Maryland for surgery she was the person who cared for my most basic needs on a daily basis. I could share my darkest fears about what lay ahead and with her, and I could weep without shame or guilt. Her present to me was laughter, and we laughed a lot. With her help I could cope much better with all the anxiety I felt.

As I blogged about my experiences with EDS, Chiari, CCI and tethered cord, so many people (too many to name) sent messages of love and support which held me high when I was low. On the tide of their words I was carried along. In the surgeon’s waiting room someone recognized my English accent and shouted out support. There was a mother at the hospital whose daughter had just come out of surgery who wished me well. There were three wonderful girls who delivered chocolate mousse to my husband and I while I was enduring a particularly painful recovery. The hotel staff made us feel truly at home for the six weeks we stayed there. These are all gems mined from my painful journey. I have also had the privilege of making some fantastic friends who have ‘virtually’ held my hand and given me strength and determination on a daily basis.

One thing I have learned over the years is enduring the same health issues doesn’t automatically make people compatible as friends. However, if you are lucky, you can find people who not only reflect and understand your burdens but who also reflect the very essence of what makes you an individual. I have been this fortunate with my dearest friend, Lydia, who has given me the greatest gift of true friendship for no other reason than ourselves. I would never have met her had it not been through our shared medical conditions, and she has made it easier to navigate the murky waters of my gauntlet.

With our suffering comes strength.

United we stand taller and braver.

About Sarah:

Sarah lives in the UK with her husband, Will, children, Noah and Nell, and her beloved Jack Russel Terriers, Duchess and Moo. She was diagnosed with EDS, autonomic dysfunction and chronic pain at the age of twenty-seven. She is now thirty-five. She has recovered from multiple neurosurgeries for CCI, Chiari and tethered spinal cord. She is living a better and more hopeful life. She is re-becoming a mother, wife and individual.

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.

May 5
2015

Holding On. Letting It Go. And a giveaway

by Monica

The messages are mixed.
Hold on for dear life.
Loosen your grip and let it go.
What’s a girl to do?

Since finding out I need neurosurgery again I’ve been vacillating between hope and despair. It’s always the same process.

Denial.
It’s just a flare.
Fear.
What if they can’t find a reason for this pain?
Relief.
I’m not crazy.
Anger.
It’s too much for too long.
Grief.
How much more can my family and I endure?

Acceptance and maybe even hope are supposed to come next.

I’m stuck in the ache right now. I am not holding on or letting it go. I’m wedged in between irrational suffering and the lie this is somehow proof God has turned His back on me and peace that can only come from believing this is Grace, and He is working it for my good and His glory.

My friend Christin Ditchfield’s beautiful book What Women Should Know About Letting It Go: Breaking Free from the Power of Guilt, Discouragement, and Defeat was just published.

I’ve been sitting with her words.
Underlining.
Page flagging.
Marinating my mind and heart.

Christin was a stranger to me until a Holy Spirit filled night at Laity Lodge in November. After a group of women prayed circles around me she pulled me aside. Shining with Jesus she shared Isaiah 38. At the beginning of the chapter it says King Hezekiah was “ill to the point of death.” God told him to get his house in order because he would die. He would not recover. I’m pretty sure if God sent me a real life prophet that said I was going to die I would make some funeral plans, hug my husband and girls and submit to it as God’s will. Hezekiah did something different. He turned his face toward the wall and as he wept bitterly he prayed, “Remember, Lord, how I have walked before you faithfully and with wholehearted devotion and have done what is good in your eyes.”

Guess what? His prayer changed God’s mind. Here’s that tricky sovereignty thing again. If Hezekiah hadn’t prayed this prayer would God have taken his life then? Did God plan for this prayer to open Hezekiah’s eyes all along so He would get the glory?

Listen to these beautiful words penned by Hezekiah himself after his illness and recovery:

I said, “In the prime of my life
must I go through the gates of death
and be robbed of the rest of my years?”
I said, “I will not again see the Lord himself
in the land of the living;
no longer will I look on my fellow man,
or be with those who now dwell in this world.
Like a shepherd’s tent my house
has been pulled down and taken from me.
Like a weaver I have rolled up my life,
and he has cut me off from the loom;
day and night you made an end of me.
I waited patiently till dawn,
but like a lion he broke all my bones;
day and night you made an end of me.
I cried like a swift or thrush,
I moaned like a mourning dove.
My eyes grew weak as I looked to the heavens.
I am being threatened; Lord, come to my aid!”
But what can I say?
He has spoken to me, and he himself has done this.
I will walk humbly all my years
because of this anguish of my soul.
Lord, by such things people live;
and my spirit finds life in them too.
You restored me to health
and let me live.
Surely it was for my benefit
that I suffered such anguish.
In your love you kept me
from the pit of destruction;
you have put all my sins
behind your back.
For the grave cannot praise you,
death cannot sing your praise;
those who go down to the pit
cannot hope for your faithfulness.
The living, the living—they praise you,
as I am doing today;
parents tell their children
about your faithfulness.
The Lord will save me,
and we will sing with stringed instruments
all the days of our lives
in the temple of the Lord.

Since I’ve been back from Maryland I have been trying to force some kind of illusion of control over what’s coming next. I have forgotten the rich treasure of knowing for sure even this is for my benefit. In one of my favorite chapter’s in Letting It Go Christin writes, “We’ve got to learn to trust Him and His leadership. Trust Him and His power. Trust Him and His wisdom. Trust Him and His love. It’s because we trust Him–trust that He is in control–that we can let go.” By this I live.

The mountains I face are very real.
The physical.
The emotional.
The spiritual.
The relational.
The financial.
None of those need moved today.

Instead I will pray with my Jesus, “My Father, if this cannot pass unless I drink it, Your will be done.”

I am holding on to hope and letting the rest go.

What are you trying to control in your own life? What mountains are you facing? What truth reminds you to let it go and rest in Jesus? I am giving away a copy of Christin Ditchfield’s book What Women Should Know About Letting It Go: Breaking Free from the Power of Guilt, Discouragement, and Defeat. Comment here to be entered into a random drawing Sunday morning, May 10th. Share on social media for an extra entry and please use the hashtag #LettingItGo.

May 3
2015

How Can I Go On Like This? Abide With Me

by Monica

“What surgery meant to *Monica and what it meant to almost anyone else were two different things entirely. For *Monica, a single surgery was more like a fitting for a dress, or the rearranging of living room furniture: it was only a step towards something else. She never gave up believing that there would be a final moment, a last surgery, a point at which her “real life” would begin.” Ann Patchett, Truth and Beauty (*Lucy was Ann’s dear friend)

I need another surgery.
I am thirty-nine years old.
This will be my twentieth surgery.
This will be my seventh neurosurgery.

This IS my life.

In January I asked God to let me go just one year without a scalpel.
I made a list of 40 things I wanted to do before my 40th birthday on November 5th.
I created a beautiful vision board.
I planned out the finishing of Gauntlet With a Gift by April 30th.
I arranged Dan and I’s Tucson trip in February.
I booked a beach house in Corolla for a family vacation the last week in May.
I registered for a writing conference at Princeton in June.
I dreamed of a long July weekend in my Shenandoah Valley hometown with a childhood friend.
In August I wanted to make good on a five year broken promise to Delaney to visit NYC together.
I penciled in a Cleveland Indians game and a concert on the lawn at Blossom before summer’s end.
I booked a hotel in Columbus for my friends and I to attend the Country Living Fair in September.
In late October I intended take my girls to Fallingwater as the leaves turned.
And I wanted a birthday party. A big one.
More than anything I purposed in my heart I would not NEED you.
I would not fund raise.
I would not talk about our medical debt.
I would not blog about my day to day health struggles.
I wanted to do something new here.
I wanted to shine Hope.
I wanted to talk about healing.
I wanted to share other’s stories.
I wanted you to know all your praying, all your giving and all your caring tangibly changed something.

My trip to Maryland last week revealed the reason I cannot get through twenty-four hours without a debilitating headache. It makes a crescendo around 2 pm every single day, and I crumble.

I have all different kinds of headaches, and I am able to tell you about them in detail.

A pressure headache is the feeling my skull and brains will explode. This typically comes from weather changes. I have a lumbar shunt sewn in my abdomen that snakes around to my spinal cord. Theoretically it removes excess cerebral spinal fluid building up and empties it into by belly to be absorbed by my body but often it is not enough. This headache makes me cry. I hold my head in my hands while I curl up in a ball and beg God to make it stop.

A “brain on fire” headache comes from illness like Strep or a wicked mast cell attack from something like bleach or a lilac or your perfume. This headache makes me certifiably insane. I am mean. I am crazed. I am desperate. Praying is almost impossible.

A migraine is like an ice pick in the front of my head spreading pain all over. Any light or noise makes it worse. I am nauseous, and I often throw up. I know it will last for at least twenty-four hours but often I wake up the next day with it. This headache makes me sad.

The headaches above come and go but lately have been layered on top of a never ending, something is smashing my spinal cord, seizing from the back of my neck up my head and over the top of my skull, buzzing and numbing, I cannot live like this pain. I have not suffered this kind of headache since my brain decompression and skull to C2 fusion in November, 2011. It began in Tucson. I explained it away as travel and hiking and washing and flat ironing my hair every day. The popping and grinding of my cervical vertebrae not already fused escalated. I wake and think it is manageable but rotating my neck at all, looking up or down or lifting anything ruins me. This headache makes me cry, “How can I go on like this?”

A month or two in I knew. A scan was just the calling card for a sure thing. I wondered how much damage was being done. I worried about a syrinx forming. I flipped ahead on my calendar to see what would need to be canceled. I saw another season of my life and my family’s life swallowed up by a nightmare deja vu.

I need a fusion of C5-C7. There are two different options for this surgery, one going in the front of my neck, removing the hardware from my C3-C4 fusion I had in October because it is solid and then fusing the three vertebrae below with hardware and bone slurry. The second option is more invasive. I would be cut in the back of my neck and the C5-C7 would be fused posteriorly as well as adding extra stability with bone slurry from my C4-C5 and my C7-T1.

My surgery is scheduled at Doctor’s Community Hospital in Lanham, Maryland on Wednesday, June 24th.

Like every time before I have no idea how we will do this. There is a $5,200 deposit. There is more travel and more hotels. Dan will take off work. The girls will stay here with family. Their summer story will be held in place by the bookends of their mom suffering and trying to hold on until surgery and their mom recovering from and trying to heal after surgery.

This is their life.

I only wanted one year.

How can I go on like this?
How can they?

I’m sitting here in my “nest” chair with both great room windows open. The early evening sun and breeze move like skilled dancers in the woods behind us creating the backdrop and the lighting for a concerto of bird songs. A daddy and mommy cardinal are building their home in the orange blossom tree along side our deck. They take turns swooping in with new materials for their sweetly thatched hideaway. By the time the delicate flowers flourish their precious eggs will be be nestled safely to incubate and hatch new feathered babes. If I look long enough I can see our grass growing greener. I witness bright yellow dandelion heads morphing to puffy white seeds. If I listen closely I can hear leafy buds on our deciduous darlings opening fuller than even the moment before. The tulip tree outside my kitchen and sun room windows finally risked to bloom. The petals are a graduated palette of blush to rosy pink spun like the softest silk. It is the maid of honor to our flowering pear tree, a bride wearing the most intricate lace gown. This is our third spring in this miracle house. When you are gifted a view of seasons changing over and over again from the same looking glass you begin to let yourself feel at home. If you know our story you know my heart. I thank God every day for this place.

My dear Amy Carmichael wrote these beautiful words:

“We say, then, to anyone who is under trial, give Him time to steep the soul in His eternal truth. Go into the open air, look up into the depths of the sky, or out upon the wideness of the sea, or on the strength of the hills that is His also; or, if bound in the body, go forth in the spirit; spirit is not bound. Give Him time and, as surely as dawn follows night, there will break upon the heart a sense of certainty that cannot be shaken.”

Tonight I am asking God for certainty that cannot be shaken.
Again.
Without it how can I go on?
I will trust.
I will abide in Him.
He will abide with me.

This hymn sung by Indelible Grace has been one of my favorites since I was a child. It was written by Henry Francis Lyte in 1847 while he lay dying from tuberculosis. He survived only a further three weeks after its completion.

Apr 30
2015

I’m Not Sorry. Gauntlet Story Feast

by Monica

I was introduced to this week’s Gauntlet Story Feast writer, Rachel, through Sam Re’s story published two weeks ago. Rachel’s book, The Reality of Chronic Illness is an achingly beautiful account about what it’s like to live in these broken bodies.

I’m Not Sorry
By Rachel Allison

I’ve been sick for three and a half years now. I’ve been through a lot. I’ve endured harder times than I knew were possible. And I’m not out of the woods yet. We believe my worst is behind me, but I’m still chronically ill and the road to recovery is long.

This journey has been emotional and spiritual as much as physical. Perhaps even more so. I’ve come so far from where I started and God has used this illness to grow my heart and faith in amazing ways. I still have scars, I still cry, I still have days where I wish it were over, and I still struggle. But the way that I trust God now is so much greater; the peace that I have is beyond words. The blessings have been just as overwhelming as the pain ever was.

Lately I’ve begun using this journey to bring understanding for those also fighting chronic illness. I’m sharing photos of the reality of my life to shed light on the real, raw facts of what it looks like to live with chronic illness day in and day out. The response has been astounding and I am beyond blessed, but also torn by some responses. The love, support, and sympathy of others means so much to me and I am in no way ungrateful, but I’m continually met with the response, “I feel so bad for you. I’m so sorry.” And that pains me.

I don’t want you to feel sorry for me. I don’t feel sorry for myself. I’m not sorry that I’ve endured this. There’s a fine line here that I need you to understand. Your compassion, understanding, patience, and sympathy means so much to me, whether I know you or not. I want people to understand what I’m going through. It’s hard when people don’t. And I understand that when people hurt it’s only human to hurt for them and with them. I’m not asking that you don’t sympathize with me on the rough days, but please don’t be sorry that this is my life.

My life is so blessed. My heart is so full. I would not trade these past years for the world and I’m not sorry that they’ve happened. I am in a season right now of being astounded by the blessings flowing from my illness. Without this illness I would never love like I do or be loved like I am. Without this illness I couldn’t reach out in such a profound way. Without this illness I wouldn’t know my God like I do. Without this illness I would not have the peace that I do, nor the understanding. Without this illness my faith would be so much weaker, my life so much emptier, and my heart so much darker.

For the longest time I felt cheated of the life I “deserved.” The life everyone else had. The growing up, a driver’s license, a job, moving out, a high school diploma, going to college. To me, that was life. A sign of life. A sort of “rights of passage” to adulthood. I put my identity in my academic standing. I wanted to excel, to be better than average. But chronic illness stepped in and now I’m searching out the easiest ways to complete the required tasks in order to graduate. This isn’t me. I don’t look for the “easy way out.” But the truth is that I’m simply not able to perform in school like I could before chronic illness. In order to get the same grade I did before I have to push myself so much harder than I ever did. And for a while I really struggled until I finally realized that I was putting too much of my identity in that.

Is it wrong to push yourself? No. Is it wrong to strive for excellence? No. It is good character to do your best in all you set your hands to; it’s not only good character, it’s a Christian attitude. And I will finish what I set out to do. I will receive my diploma, but it’s okay if it takes me a little longer or if I don’t do extra credit work or if I have days where school simply isn’t an option. Why? Because I am chronically ill. And that’s my life.

I understand that most people should graduate and go to college, but I’m not most people. I can’t be most people. And I don’t have to say no to those things, I just have to let go of what’s “normal” in that regard. I’ve let go of “normal” and it’s beyond freeing. With God’s help I will graduate and I will go to college, but I don’t have to do it like everyone else does. Most importantly, my identity isn’t found in whether it happens or not.

I want to get better, but I’m at peace with the journey I’m on. This is where God has me and it’s so much richer and more fulfilling than any of my dreams. I haven’t been cheated, I’ve been blessed. I’ve had to lose what I considered to be life to find out what life really is. Because health, momentary happiness, academics, and jobs are not life. You can have those things and not know life. I would rather face this every day and have these blessings than be counted successful by the world’s standards and have no peace. The wealth of God’s goodness flowing through my life outshines any achievement I could ever make and it’s guiding me to achieve things I never thought possible.

So please don’t be sorry I’m enduring this. I know you mean well, but in my ears those words sound as if you’re saying, “I’m sorry you’re so blessed. I’m sorry God is so good. I’m sorry you have to be loved by Him.” Instead, love me with a heart that says, “I know this hurts. It’s okay to cry. Let’s hold on to each other and do life together and watch God make beauty from this pain.”

Because I’m not sorry that my life is more beautiful than I ever could have dreamed.

*Since this post was first written on March 28th, 2014 I have continued in my recovery, graduated high school, and published a book documenting my life with chronic illness. You can order The Reality of Chronic Illness here.

About Rachel:

Rachel Allison is a nineteen year old writer and photographer, living with Adrenal Fatigue (Chronic Fatigue Syndrome) and Dysautonomia since November 2010. She’s a lover of details, creativity, truth, understated elegance, words, and cheesy humor. She lives life with a passion for learning and a deep need for the God who created and cares for her. She blogs about life, faith, and photography at rachelallisonartist.com.

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 Rachel Allison. Used with permission.

Apr 27
2015

What Kind Of God?

by Monica

“What comes into our minds when we think about God is the most important thing about us.”–A.W. Tozer

I didn’t want Gauntlet to be a treatise on the sovereignty of God. There are plenty of really good books, most of which I’ve read, attempting to explore the why and how of God’s control over the big and small in the universe and in our lives. I just wanted to write our story and let my own struggle with and eventual acceptance of this truth to shine through. Over the years I’ve blogged very candidly about the ways I’ve grown to not only believe but cherish the specific providence of God. People have questioned me, and I have tried as best I can to explain what my feeble mind understands about how His ways are higher than our ways and why I wouldn’t want it any other way. As I began posting other’s stories in Thursday’s Gauntlet Story Feast I’ve received emails and messages asking, “How can you have endured so much pain and loss for so long and still say it comes from the hand of a LOVING God who has planned it all from the beginning? How can you bless His name and give Him praise for even these bad things?”

One of the greatest struggles I’ve had since I was a child is reconciling theology taught to me from a young age, some very right but taught in a wrong spirit and some clearly wrong, with my own reason, the pull of humanism and all kinds of other religions that sell a different God than the Bible, and TRUTH. Yes, a dirty word, but I’ll say it. The above quote has been critical to me these past years as I have grappled with the question asked since the fall,

“What kind of God…?”

I could go straight to Job. It is perhaps the clearest picture in Scripture of the behind the scenes workings of God allowing great trial into the life of a man who was “blameless.” I cling to this narrative as if it was my own. It is hard to read, but it sums up the before and after so simply, “The Lord gives and the Lord takes away. Blessed be the name of the Lord.” (Job 1:21)

I find it more challenging to look at God’s sovereignty in places like Matthew’s gospel account of Christ’s birth. We seem to gravitate to and focus on parts of the stories that make our hearts swell with emotion. Every one loves a choir singing of peace on earth, goodwill towards men and a baby that doesn’t cry. The miracle of the birth of Christ has been read through time, embellished and romanticized, sung about in carols and celebrated by many who never really desire to understand the rest of the God who WAS the very human baby Jesus born in the manger so long ago. Mary is celebrated. Joseph was the best “baby daddy” ever. The wise men and the shepherds are heroes. Truly, there was so much more going on there that night than the nativity scene we set in our homes and altars.

I cringe when I get to the section Massacre of the Innocents in chapter 2, verses 16-18. I know it is there, but only because Herod is generally told as the bad guy in this epic, and He wanted Jesus dead in the off chance he really was going to become the literal King of the Jews. I don’t remember anyone ever preaching about these verses in an expository way or focusing on them at all. I think we always just kind’ve stop when Joseph whisks Mary and Jesus away for safe keeping in Egypt and then fast forward to Christ’s idyllic childhood in the carpenter shop once they return. Not much else is told to us until we get into the thick of His earthly ministry leading up to the greatest sacrifice, His death on the cross for our sins.

Here are the verses so you don’t have to run and look them up:

“Then Herod, when he saw that he was deceived by the wise men, was exceedingly angry; and he sent forth and put to death all the male children who were in Bethlehem and in all its districts, from two years old and under, according to the time which he had determined from the wise men. Then was fulfilled what was spoken by Jeremiah the prophet, saying: ‘A voice was heard in Ramah, lamentation, weeping, and great mourning, Rachel weeping for her children, refusing to be comforted, because they are no more.'”

What kind of God needed to allow every other baby boy to be murdered to fulfill His saving plan? If Christ’s death on the cross was such a great sacrifice then what was this? Every single family with a baby boy two and under in the region had their sons snatched from their homes and brutally killed. We start in Matthew and separate the Old Testament law from the New Testament and Grace. There are so many beautiful truths about how the saving work of Christ changed how we access God and how we are forgiven. Praise God it is finished. There is no more need for continual shedding of blood and sacrifices on man made altars. So why this great sacrifice of all these lives as soon as the Savior finally enters the world? Is it just to fulfill a prophesy? If so, why? Do I really want my God to be a God who says, “Because I said so”??? If I didn’t have the light and the grace of the New Testament would I believe in the Old Testament God? Here’s the thing. He never changed. The person and work of Christ did not change the Alpha and Omega. He was and is and is to come. He gives and He takes away. He wrote this story from beginning to end before any of it was spoken into existence. Blessed be His name.

So what comes to mind when I think of God? What kind of God needed to allow the physical pain, emotional suffering and loss and financial ruin to our family these past years? If He loves us so much that He sent His only Son to die for every single one of our sins why would He let us be hurt this way for so long? The answer is simple. God is God. His ways are higher than our ways. His purposes are always about the soul. We see in a mirror dimly what will someday be shown clearly to us face to face. We will know what is already known by Him. If we traveled back to Eden we would have bought the same lie Adam and Eve did. They wanted to be wiser than God. You ask me, “Did God plan for them to sin? Did He set in motion this entire cosmic story so He could be the Savior of the world? Do we have free will or are we nothing more than puppets?” The answer is simple. God is God. His ways are higher than our ways. His purposes are always about the soul. We see in a mirror dimly what will someday be shown clearly to us face to face. We will know what is already known by Him. Every single bit of this is more than we can comprehend. It is also more than we deserve. It is all Grace and we walk by faith.

More than six years ago, in my very first post about Danica’s Chiari diagnosis, I ended with a quote from Oswald Chambers. I committed it to memory and have returned to it a hundred times in this walk. It is the answer to the question that still nags on days like today when my pain is still oh so present and the future seems unclear. What kind of God?

“Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason — a life of knowing Him who calls us to go.”

I spent the entire weekend in bed. My headaches and neck pain are steadily increasing. My neck is falling apart below my last fusion. I will fly by myself to Washington DC on Wednesday for yet another flexion and extension MRI and visit with my neurosurgeon. Yesterday I felt so much despair I returned to a place I hadn’t been in months. I wanted out. I cried. I raged. I collapsed.

This morning I woke and God took my morning worship to these words from Frederick Buechner:

It is out of the whirlwind that Job first hears God say “Who is this that darkens counsel by words without knowledge?” (Job 42:3). It is out of the absence of God that God makes Himself present, and it is not just the whirlwind that stands for His absence, not just the storm and chaos of the world that knock into a cocked hat all man’s attempts to find God in the world, but God is absent also from all Job’s words about God, and from the words of his comforters, because they are words without knowledge that obscure the issue of God by trying to define Him as present in ways and places where He is not present, to define Him as moral order, as the best answer man can give to the problem of his life. God is not an answer man can give, God says. God Himself does not give answers. He gives Himself, and into the midst of the whirlwind of His absence gives Himself.

I am asking for God to turn my heart and mind from the uncertainty and fear of what could come next and from asking the questions about how in the world could I ever really be healed and restored to just wanting to KNOW HIM MORE, listen to His call and go where He leads. It really is that simple and beautiful. He gives Himself. It is Grace. It is enough. I believe this pain will turn into joy and greater good and His glory. I trust him because He promises.

Bitter today. Painful this week. Hard this month. Sweet for eternity. Yes, please.

Photography by my dad, Gregory Scott Roberts. Used with permission.
Linking up with Jennifer Dukes Lee’s beautiful #TellHisStory post.

Apr 23
2015

Addy’s Army. Gauntlet Story Feast

by Monica

Once in awhile in our community of heroes there is a family…a child…a story so similar to your own you feel like you are sharing one heart. LeighAnne’s fight for her daughter Addy mirrors my own battle for Danica in so many ways. Addy’s surgeries, her recovery and her personality are so like my brave girl. Their family’s faith in a good God, overwhelming prayer and financial support from people near and far and their hope for the future remind me “Where there is great love, there are always miracles.” –Willa Cather

Addy’s Army
By LeighAnne Busby

Many people have asked me, “What are Chiari, EDS, and Cranio-Cervical Instability?” I give simple as possible medical definitions. I explain they are a cluster of disorders inflicting great suffering on those diagnosed. In the same breath I also share how they have been the gateway to the unfathomable love, grace, and mercy of our Creator. Before diagnosis I didn’t need God this desperately. I didn’t collapse into my Heavenly Father’s arms this completely. I didn’t fall to my knees and worship Him this fully.

When my daughter Addysen was born she seemed as “normal” as my older 4 children. I now know she is anything but ordinary. Not because of her disorders, but because of how she lives her life. Her strength and determination make me believe God prepared her for for what she would be asked to endure for His glory long before He formed her in my womb and gave her breath.

When we received her diagnosis in October, 2013 I nearly fell to the floor. Her presenting symptom was a seizure which prompted an MRI. I was told by her doctor that the Chiari Malformation we saw was not to blame. I knew in my gut this was not true. I stopped living for the next few months in order to pray and research. God guided my every move. I felt completely powerless, and I still do. It was exactly where God wanted me. He needed to move and to be able to guide my husband and I to the right people at just the right time.

We met the first surgeon in February, 2014. He looked at me and said, “You and all your children need to be scanned.” In the next few months, we discovered that EDS was a genetic factor, and I passed it down to Addy and some of my other children. For just a moment I felt utter devastation, but there was no time for a pity party. A dear friend of mine encouraged me to travel to the best expert we could find. I told her there was no way, because we could not afford it. Her response was, “Whether you decide to travel or not, do NOT ever let it be because of finances. God is bigger than that!” It was the best advice I ever got.

One of the greatest blessings through all of this has been watching God use ordinary people in extraordinary ways. A month before Addy’s first symptom appeared we left our church family due to a painful chain of events. We settled into a new church a couple of months later, but we had no intention of really sharing our struggle. We now realize He placed us right where we needed to be so we could be ministered to in a way that we had never seen before! I don’t even remember ever fully explaining to anyone all we were facing, but God revealed it somehow. Before long Addy had an entire army around her. Even our local police chief heard about Addy’s situation and led the charge of fundraising for her. The teachers, staff, and parents at the elementary school that my children attend all took the “Polar Plunge” for her in order to raise money. Friends, family and strangers alike rallied around us and have never left our side. In our darkest moments we know the prayers and support of others have been the literal arms of God and carried us. We are forever grateful for God’s provision, and we are hopeful that each and every person who has helped us will receive a blessing that cannot be contained.

Addy has now had three major brain and spinal surgeries within seven months and two of those were done over seven hundred miles away from our home. God is faithful.

He led me to other moms and dads who spent countless hours answering questions before I even knew to ask them. He led us to Dr. Rekate in New York who has become almost a grandfather to my children.

There have been many good and bad moments in this fight. I will start by sharing the worst. Following the second and third surgery Addy was unable to swallow, and she was no longer talking at all. The speech therapist and several doctors came into the room and shared in front of her that she may have lost the ability to swallow on her own and would likely need weeks and weeks of therapy if it was to come back at all. Over the next few hours her whole demeanor changed, and she rapidly went downhill. We were very sure she may not make it through the night. I called a mentor of mine late that night, and I screamed into the phone pleading with her, “Please, please tell me what to do to save my baby!” She told me, “You go in there and talk straight into her soul as only a mother can, and you give her all your strength and the encouragement she needs to keep fighting.” It sounded very strange, but I did it. I wrote the words I spoke to her and shared them with the world later that night. I believed. I had nothing else to hold on to. Late in the morning on the next day Addy smiled at me. It worked! God breathed life into my words that night, and that life went straight into my little girl!

When Addy came off the ventilator, she spoke only a few words. “Hi Mommy!” Then she said pointing up in a circular motion, “They were up there. They said you are gonna be okay. Addy, everything will be okay.” She didn’t speak again for days. She didn’t need to. She said it all. They were there! Best. Moment. By. Far.

Addy is healing, but there is much more to fight. If you are on a similar journey my advice is simply this. You must BELIEVE. Believe there is a purpose for your hardship. Believe God is working on your behalf. We cling to Romans 8:28. “And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Without faith and hope these disorders have the power to destroy you. In God they can be grace and gift.

You can continue to follow Addy’s story here: https://www.facebook.com/AddysArmy?fref=ts

About LeighAnne Busby in her own words:

I am a wife to Nick, a mother to five beautiful children, a friend, teacher, and a student of life. I am incredibly impatient, analytical (sometimes to a fault), and greatly flawed, but I am blessed beyond measure. I was born to a gifted, brilliant and spiritual mother who taught me more in the first seventeen years of my life than most people learn in a lifetime. Sometimes I feel that when she went to be with the Lord she poured all of her knowledge and fight into me. Music is an important part of my life. It has the ability to bring me up or make me broken depending on what I need at the time. My favorite pastime is driving alone in my mommy-mobile minivan and listening to Casting Crowns or other uplifting music (although I am known to listen to a little rap/R&B as well.) I am living my life one moment at a time and try to find God in every second of every day.

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.

Apr 16
2015

Walking Through Fire. Gauntlet Story Feast. And a giveaway

by Monica

I met his mom in November in the Texas hill country. We came for retreat, and God brought our hearts and lives together over shared diagnoses and Hope in Jesus. This week’s story is so real I have not been able to shake it from my mind.

Walking Through Fire
By Sam Re

A friend recently asked me how I was doing, not, How are you? or How’s life? or What’s been going on lately? but, In all reality, how are you actually?

Imagine if you will, walking up to a cashier at your favorite fast food place. You’re standing in line, awaiting your turn. Suddenly your right knee begins to hurt, almost as if it’s going to stop supporting your weight, not a ton of pain, but you can feel it. Now imagine the pain duplicated in your left knee. Then your right elbow, your shoulders, your left foot, right wrist, your entire left hand, ebbing and flowing, surging, retreating.

Now stomach pain so intense it feels like a pit where your internal organs should be, your body imploding to fill the void.

Next a pain in your throat, a burning pain from acid reflux. Water helps, but doesn’t quench it. Then sudden shooting pains in your chest as a nerve fires. On. Off. On. Off. There. Gone.

Another sudden shooting pain in a different location, randomly, no rhyme or reason, each leaving an ache.

You’ve had a headache all day, a mild one, but you can feel it, pressure in your forehead, pain in your temples.

Your back, shoulders, legs, and arms are now aching. Your whole body is aching. Then the nausea. You feel borderline sick, but you’ve felt this on and off all day and had to eat anyway to keep up your strength and weight.

You are tired; so, so tired.

All you want to do is collapse, right then and there on the restaurant floor. Your body doesn’t want to hold itself up anymore. You fight to keep standing. The pain, nausea and exhaustion are wearing you down. You struggle to keep standing there, acting normal, like you are fine, like everything is fine. But you are so incredibly tired, exhausted beyond belief, weary, and a little voice at the back of your mind is siding with your body, wanting you to give up and sleep.

But you’ve woken up feeling like this every day for the past week. The past month. The past year. The past six years.

So you focus. Steel your mind. Decide what you want. Then you hear something. You’ve been hearing it for awhile. People talking. Not just the words, but the conversations. All of them. Words bouncing around in your skull, pounding, piercing, painful.

A fly buzzing too? No, the sound of the ceiling fan, spinning, squeaking quietly against it’s metal bearings, the wind, people opening doors, moving, shuffling, cell phones ringing, buzzing. Noises, tiny and big. You hear them all, but they’re mixed together, bouncing around inside your skull like pinballs, a cacophony of white noise. But wait. What’s that?

The all too familiar feeling of adrenaline coursing through your system as every sense in your body is amplified. Every noise, every sight, every little thing that dares to touch you, the breeze gently moving your arm hairs. You are in full alert.

Then you realize the cashier has asked you what you would like. You need to order. You force yourself to think. The pain and nausea are getting worse by the second. You are starting to become afraid, but you focus. You start to utter the words of your order and realize you are stuttering, not making sense.

You focus harder, mumbling, “Uhmmm,” to complete what you were saying, focusing on each word. You stumble through the order.

Congratulations. You answered the cashier’s first question. What about the second?

* * * * *

This year is the hardest I’ve ever gone through. And yet, if I had the choice, I wouldn’t go back six years ago and change that I got sick. I wouldn’t remove these diseases I carry, wouldn’t cure myself. And really, I don’t know if I ever want to be cured.

I’ve often heard people say that your diseases don’t define you, and I agree. My diseases are not who I am, not the entirety of my being, but they have melded with my vision of myself. They have become something non-removable from who I am, as much a part of me as the gifts God has given me.

My flaws, my mistakes, my failures, my diseases, I’m not looking to get rid of them or hide from them or pretend they don’t exist. I’ve already lost so much that once was me. What’s left has been thrown with me into the forge, and when I emerge, those things will not be impurities or faults in the metal, but they will become my strength, for I am in the unique position to bridge worlds.

I know what it is be healthy, strong, fast, optimistic, and hopeful, and I know what it is to be unhealthy, slow, worn out, in pain, broken, pessimistic, and afraid.

I am in the flames where the forge burns brightest, being taken out and hammered into shape, thrust back into the flames. It will not always be like this, but my pain is not holding me back. It is not holding me down. It is my anchor point, necessary to forge me into who I need to be when God calls upon me, who I need to be for my part in His plan.

This is who I am now. And I have a voice.

About Sam:
Sam Re is a wildly creative twenty-something with an old soul, a quick wit, and a disarmingly loyal cat named Tiger. Six years ago, Sam was diagnosed with Eosinophilic Gastroenteritis after losing 22 lbs in eight weeks and winding up on the critical care floor of Children’s Hospital. The ensuing years added dysautonomia, POTS, Ehlers-Danlos Hypermobility, asthma, eczema, allergies, reflux, and spontaneous pneumothorax to the diagnoses mix.

Sam’s words can be found at: https://freedomfalsified.wordpress.com/category/walking-through-fire/
And his 3D creations at: https://www.etsy.com/shop/PhenixEmporium

Sam has donated his friend Rachel Hoffman’s book The Reality of Chronic Illness, A Photo Documentary, by Rachel Allison Hoffman. It is well-written, beautifully illustrated, poignant, and important. If you or someone you know are living with chronic illness, this is a must read.

Would you take back a diagnosis and erase the way suffering has changed you?
Share this Gauntlet Story somewhere on social media with the links below and using the hashtag #GauntletStoryFeast. Leave a comment to be entered in the giveaway for Rachel’s book and let us know where you shared. The winner will be randomly chosen next Wednesday, April 22nd after midnight and announced with next week’s Gauntlet Story.

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.

Searching for "One word"