Monica Kaye Snyder

May 12
2015

When We are Sick. When We are Tired of Being Sick. A Prayer by Ann Voskamp

by Monica

Saying “I’m praying for you” on social media seems too easy and even insincere at times. Is the thought of you and your struggle really a prayer? Did I couch my thought in “Dear God” and “Amen?” If God wants us in the secret room is Facebook a little like crying out loud in the temple for everyone to hear?

Friend, your daughter is in the hospital recovering from surgery. It didn’t go the way we hoped it might. I want you to know I’m on my knees. I need you to know I’m circling your name. I’m writing her name. I’m lifting up your weary husband. I’m knowing the heart of the sibling left at home with caregivers patched together. I’m thinking of your puppy who doesn’t understand where you all are and why you are gone so long. You’re so tired. Your body hurts. Your mind is racing. You cannot rest for even a minute from this advocacy. The minutes and hours have become days and nights where time has no meaning. Every single thing you had written on your calendar doesn’t matter at all anymore. The world is moving fast and lives go on, but you are there. She is there. I want to come to you. I want to sit with you. I want to hold your hands and pray face to face and heart to heart. I’m asking Him now to wrap you up in the comfort of knowing how incredibly held you and your family are. I love you. He loves you more.

Lord, yeah, we do get sick and tired of being sick.
We get fed up with the nausea and keeping nothing down.
We get shell shocked by the cancer at every turn, the chronic that wears us down to acute agony, the hospitals and doctors and appointments; the waiting rooms that have us wildly waiting on You,
mad with the waiting for You to show up and do something, heal someone, free everyone now.

And You cup our faces; come so close we can feel the warmth of You on our weariness and You breathe relief upon us: “My grace is sufficient for you, for My power is made *perfect* in weakness…
Your present sufferings; hard times are not one drop compared to the Niagara of glory and good times I’ve got coming for you *forever*…
Instead of trusting on your own strength or wits in the midst of all this, come trust on Me totally—which is a good idea since I’m the God *who raises the dead!”

The warmth of God is closer to us in sickness than in health.
The comfort of God heals our soul… regardless of our health.
And the grace of God touches us with the heat of the healthiest love –a love that death can’t touch, that will enflame us through life without end, forever and ever; into eternal living, Amen.

In the name of the only One who loved us to death and back to the real *forever* life,
Amen.

A prayer by Ann Voskamp. I return to it often.

Photography by Cindee Snider Re. Used with permission.

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.

Apr 14
2015

Who Do You Think You Are?

by Monica

It’s late.
My family is asleep, and I am awake.
Nights are the longest.
Nights are the hardest.
There is no one left to convince I am okay.
There is no one waiting for me to say the right and true thing.
There is no one needing me to shine a light on their own version of this difficult life.
I am alone.

I began a new round of plasmapheresis treatments last Tuesday. After Monday’s brutal attempts to get IV access before my catheter placement I was already beaten up. A large hematoma began to form where the doctor, through ultrasound, finally found a vein in the upper part of my right arm. This along with the pain and invasive nature of the plastic tube stuck from my jugular into my heart’s main artery had shaken me. I felt like the first three treatments went as well as expected. I had the usual exhaustion, headaches and nausea, and by Easter Sunday I was wiped out. I knew something wasn’t right beyond the treatment side effects. Dan took the girls to church and to my parent’s for dinner and egg hunting. I stayed in bed. My headache was gaining momentum. When I woke Monday morning I knew I was in trouble. I couldn’t lift my head off the pillow.

Dan drove to the emergency room Monday evening at 5:30 pm.
He dropped me off at the door in the pouring rain.
I was alone.

It seems strange every time I tell it like this, but it is not for us. Dan makes sure the kids are okay. I take care of myself. Something about my demeanor made the ER staff take me back quickly even though many were waiting. The pain was so severe I couldn’t lift my head from my hands. My right eye was twitching. Stinging tears were running down my face. I keep a typed medical history with me and a list of current medication. If I’m too sick to tell my story I hope they can piece it together somehow. If nothing else the long list of operations and insane list of pharmaceuticals give me some credibility. In emergency rooms this is gold. It’s been almost a year since I resorted to going there. I hate the process and the place that much. I will only go if my pain is a 10.5 on a scale from 1-10. I live at a 4 or 5. Every single day I hurt. This was so much worse. This was scary worse.

As I laid on the hard stretcher with no pillow, I waited and tried to pray, but mostly I listened to the stories happening around me. In the holding bay next to me a woman was wailing. She wasn’t in physical pain. She wanted to die. The security guard and nurse kept probing about how many pills she had taken and whether she had any alcohol with them. Did she hear voices? Was she on her way to the crisis center? She was in tortuous pain of a completely different kind. My heart was breaking. I had been that woman before. I could hear the complete loss of identity in her voice. They kept asking the same questions. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

The doctor decided I needed a lumbar puncture to test my cerebral spinal fluid, CSF, for meningitis. After two attempts to take blood and two IV tries I became filled with anxiety. I had been given 1mg of Dilaudid for pain. If you know anything about me or how EDS affects my body’s processing of medication you know this amount of medicine is nearly placebo. I asked for Toradol. I explained this non narcotic worked the best with this kind of headache. They seemed thrown by someone not wanting to get doped up in the ER. They did not want to give me anything with blood thinning properties before an LP. Because I had this small dose of meds they asked I call someone to drive over in the middle of the night and sign a consent. This has never happened before in my long medical life. My dear parents, just back from Spain and tired to the core, answered my call and came quickly to sign the paper. I was taken down to the empty radiology floor and put face down on the freezing cold table. The same doctor who placed my cath was called out of bed to do my LP. It had to be under fluoroscopy because of the unstable nature of my spine and the brain shunt tubing there. A long needle was placed deep into my back and pulled tubes of fluid from my spine. I couldn’t stop my tears. “How long, oh God?”

Around 2 am I was taken up to the fourth floor to be admitted. I was utterly exhausted and had no real relief from my head pain. Now I was now suffering from all the needles in my arms and back. Then the process began again. My new nurse came into my room, flipped on the overhead lights and asked me the same litany of questions I just answered hours before. I kept thinking of the woman downstairs. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

One of the overwhelming feelings I get every time I’m admitted is the helplessness and bizarre anonymity that comes with stripping off all your clothes and jewelry and anything that identifies you to put on a hospital gown. You are now just a chart on a computer screen, a case to be discussed, a room whose call bell they hope won’t be rung too often. Even with the best nurses and doctors there is a very real sense of no one knowing you. The longer you are there the feeling of being institutionalized grows. Your legs get hairy. Your hair gets greasy. Your hospital issue footies get filthy as you get out of bed over and over again to unplug your IV pump and drag it into the bathroom to pee which you have to do at least every hour because of the bags of fluid they are giving you. For me this is all compounded by the frustration of being stuck over and over again because my veins are so weak and damaged they will barely give labs and my IVs will hold for only hours. I questioned why they couldn’t use this beautiful access in my chest for blood draws and meds and fluids. Oh no, that port belongs to dialysis. We cannot touch it. Okay, but it is my port, and you are repeatedly hurting me. At this point my arms looked like I was the worst skilled IV drug user ever. They were covered in tracks and bruises. A new IV team finally found a vein in the top of my shoulder that was a virgin and held. I asked for Tylenol. We can give you more Dilaudid they said. It took four hours to get an order for Tylenol from the doctor and the pharmacy to send some to me.

By Tuesday morning I wasn’t any better, but I began to feel frantic and caged. At least once every hour I fantasized about ripping my IV out and escaping. Why in the world did I come here where no one knows who I am? I’m Monica Kaye. I am the wife of a prince. I am a mother to two beautiful daughters. I am chronically ill but refuse to quit fighting. I believe in Jesus, and He is the only reason my Hope remains. I wished I could wear a sign or hand them a copy of Gauntlet With a Gift to tell them my story. I wanted them to know this snapshot of a sick woman getting treatmeant for some weird autoimmune disorder called PANDAS who came in with an unbearable headache didn’t explain me at all. This list of weird disorders called Chiari, Ehlers Danlos Syndrome, Dysautonomia, Mast Cell Activation Disorder and more were not ME.

After being “released” on Thursday I came home to sleep until my final pheresis treatment on Friday. Over the weekend I slowly began to steep myself back in truth. I kept thinking about the woman behind the curtain in the ER. I continued to think about my own identity in all this brokenness. Sunday morning I opened Paul David Tripp’s New Morning Mercies: A Daily Gospel Devotional to find this message in answer to my heartache.

Who in the world do you think you are? I’m serious. Who do you think you are? You and I are always assigning to ourselves some kind of identity. And the things that you and I do are shaped by the identity we have given ourselves. So it’s important to acknowledge God has not just forgiven you (and that is a wonderful thing), but he has also given you a brand-new identity. If you’re God’s child, you are now a son or daughter of the King of kings and the Lord of lords. You are in the family of the Savior, who is your friend and brother, You are the temple where the Spirit of God now lives. Yes, it really is true–you’ve been given a radically new identity.

The problem, sadly, is that many of us live in a constant, or at least a rather regular, state of “identity amnesia.” We forget who we are, and when we do, we begin to give way to doubt, fear and timidity. Identity amnesia makes you feel poor when in fact you are rich. It makes you feel foolish when in fact you are in a personal relationship with the One who is wisdom. It makes you feel unable when in fact you have been blessed with strength. It makes you feel alone when in fact, since the Spirit lives inside of you, it is impossible for you to be alone. . .

So if you’re his child, ward off the fear that knocks on your door by remembering who God is and who you’ve become as his chosen child. And don’t just celebrate his grace; let it reshape the way you live today and the tomorrows that follow.

Our family photographer just sent me the files from an anniversary photo shoot of Dan and I from February 2011. The above picture of me is from that day. Danica was still in her Minerva brace and wheelchair. I had come through my hysterectomy in August, 2010 knowing I needed a bowel resection, but I was literally breathing the 24/7 care my Danica needed not realizing how each day was breaking me just a little bit more in every possible way. Since this photo I have had ten of my nineteen surgeries. My body resembles almost nothing I see there. I barely remember who that beautiful woman was, but I know who I am today.

I am more than flesh and bone.
I am a daughter of the King of Kings.
The Spirit of the living God resides in me.
I am not alone.
I will never be alone.

(I am done with my treatments and had my levels tested yesterday. I am waiting to hear if they are low enough to have my catheter removed. I will begin the chemo drug for six months to suppress the antibodies from returning in hopes this invasive treatment can be slowed or avoided altogether. Please pray for my body to respond well to the new drug and for it to work as anticipated without toxicity or drastic side effects. Please be in prayer for a trip to Maryland on April 29th. I will fly alone (there’s that word again) and have a tough day of a flexion and extension MRI and then late appointment with my neurosurgeon. I will stay the night and fly home the next day. Like always the financial aspects of my out of network treatments here and these trips burden us. The emotional and physical toll are an even greater weight. My instability from C4-6 or 7 is causing a great deal of pain. I am wearing my collar more and more and praying the removal of inflammation from the pheresis will help with my symptoms. Thank you to each one of you who has been praying for my family and I, making meals, sending letters and cards, and especially those who mailed care packages to the girls during their spring break with a sick mama in bed. You are God’s hands to us. Bless you. Our Hope remains!)

What in your life causes you to lose sight of your identity? What sign would you wear so others would really see you and know you? When you begin to feel alone what Scriptures or songs bring you back to the truth of who you are in Jesus Christ?

Photo by Grace Designs Photography