Archive of ‘Health. Chiari, Ehlers-Danlos, POTS, Mast Cell, PANS/PANDAS’ category

Personal Retreat as Spiritual Discipline

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“But Zion said, “The LORD has forsaken me, the Lord has forgotten me.” Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you! See, I have engraved you on the palms of my hands; your walls are ever before me.”–Isaiah 49:14-16

Hands

It was January, 2011, and my first resolution was to discipline myself to make time alone. My Danica had been through two major brain surgeries and a fusion that kept her in a body brace and a wheelchair. Our journey began in May, 2009, when her little eighteen month old neck went crooked. Every moment of my life became about finding her diagnosis, taking her to therapy, seeking treatment, scheduling surgery, fighting for resources, keeping her safe and soothing her pain. I was with her twenty-four hours a day, seven days a week.

I have always been one of those people who needs regular periods of being alone to be okay. The constant input of my children, my husband, friends, family, the internet, TV, social media and my blog swirl together and muffle the cry of my soul to be still and know God. The hairs on the back of my neck stand up when I hear the catch phrases about putting myself on the list and taking care of me first so I’m there for others. This all seems to point to selfishness of some kind, and I’m pretty steeped in the martyr life by this point. While working through Adele Calhoun’s Spiritual Disciplines Handbook I have come to realize the desire of my heart to retreat and be near God is not rooted in selfishness at all. It is a necessary spiritual exercise to strengthen my faith and remind me who I am in Christ. I am not just a wife, a mother, a daughter, a sister, a friend . . . I am a child of God.

Adele writes in her chapter on Solitude,

Solitude opens a space where we can bring our empty and compulsive selves to God. And no matter how well we ‘do’ silence, God is there to accept, receive, and love us. In solitude we see how little we embrace our true identity in Christ. And we find the truth of who we are in Christ. We are the beloved, and God is pleased with us. This identity is given; it is not earned. Many other voices pull at us, seeking to own and name us, but in solitude we learn what it is to distinguish between the voice of God and the voices of the world.

My identity was slowly stripped away from me in new ways when I became even more ill than my girl. I couldn’t work in gainful employment. I couldn’t care for my children without help. I couldn’t be a true helpmate to my husband. I couldn’t participate in corporate worship. I couldn’t be a good sister or daughter or friend. When I woke up from my first brain surgery and fusion without the vice grip on the back of my neck one of my first thoughts was, “Who am I going to be if God chooses to remove this thorn in the flesh for good?” The answer is simple. I am a child of God. This identity never changed because of my ability to perform any duties. I am His beloved. There is no guilt here. There is no shame. I don’t have to produce anything or be recognized by anyone else. My name is written on His hands!

I left my family last Saturday. I checked into a local hotel for forty-eight hours. No one besides my husband and girls knew I was there. No one needed me. The world was moving on without my thought or action. I didn’t turn the TV on. I didn’t listen to music. I was very still. I inhaled and exhaled prayer like air. This is one of many times since New Year’s 2011 I have packed my bags and gone away to be alone with God.

In practicing personal retreat I am reminded I am “Preapproved.” I realize how much God delights in my drawing near to Him. The verses above are my dad’s “go to” verses when he visits the sick and people headed into surgery. Dan and I joke he needs to find some new material for repeat customers like us who seem to find someone in our family on a stretcher in a hospital several times a year. The truth is I find great comfort in these words. God paints a picture we can all understand and relate to. Tonight I kissed my fingers and touched the picture of my girls and I. Beside it is the sweetest picture my Danica Jean drew of her and I. I was thinking about how impossible it would be for me to ever forget my children. I breathe them no matter what else I am doing. This is how God feels about me but perfectly. I ran to get a Sharpie and wrote my name on my hand. No matter what I do it’s there. He never forgets me. Not just my name but my likeness. I am never off His mind or away from His sight or out of His care.

I trace the scars in the hands of my Savior and see my name embedded there.

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Broken in Aspen. Again

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Aspen

One hundred thirty-nine days since my last surgery.

Seventy-two days since my last plasmapheresis treatment.

Just like that. It happens. I fall in love with life again. I make plans. I start to reclaim lost pieces of being the wife and mother I want to be. I slowly fill my calendar with seeing friends and family. I make appointments for normal things I’ve neglected like taking Twix to the vet and getting the girls and I to the dentist. I reschedule overdue things I’ve cancelled again and again like my bone scan and mammogram. I push off appointments that might throw gasoline on even an ember of the need for more medical intervention. I move my Dr. Henderson appointment to check fusion to the end of April. I call Danica’s orthopedic surgeon and get permission to move her big scan and evaluation from this month until October which will be her five year mark. I book a beach house for the last week of May, because we haven’t been since 2009, and it matters more than just about anything to our family. I buy summer concert tickets on the lawn at Blossom for Dan and I. I book a hotel and make plans with my girlfriends to go to The Country Living Fair in September.

Two years ago I made a list of 40 things I wanted to do before I turn 40 in November.

This is the year. I’m sure of it.

I’ve been waiting for today. The temperatures are rising. The snow is melting enough I can see patches of earth. The sun is shining. I made it through a brutal winter without a shunt revision. I’ve had the most days out of bed and without a headache. I’ve allowed myself to dream. I have fourteen chapters of the book written. I’ve let little inklings of what God might have me do after “Gauntlet” sneak out to people I trust with my hopes. I’ve let my girls and my husband hear me talking about possibilities again.

This is definitely the year.

Without warning something snaps.

I should be used to it by now. The surgery or treatment that eases some kind of pain or symptoms lulls me into thinking maybe this will be the one that changes my body for good. Everything I know about Ehlers-Danlos and all the other conditions it drags along with it flies in the face of this ludicrous optimism. Still, without it I would have given up long ago.

When the popping and neck pain began in Tucson I explained it away as plane rides, hotel pillows and the strain of showering, shaving my legs and styling my hair every day. I returned to insanely cold weather and pressure systems. It was crushing me, but some kind of high from our vacation kept nudging me out of bed and moving forward. My inner voice told me to lay off the treadmill, let someone else clean my house and have Dan carry the groceries. I naively thought if I didn’t do anything stupid I would get through this.

It’s not just my spine slipping. It’s everything all at once. My mast cell reactions are getting closer together and more severe. I went to a friend’s birthday party Friday night and the candles made me so ill I spent all Saturday in the bathroom like I had the stomach flu. My cardiac symptoms and POTS, so controlled in Arizona I actually had days I did not take my medications, are flared again. When I stand up I get dizzy and feel my blood pressure drop and my feet turn dark purple. My heart literally hurts. My joints are screaming and the pulling between my shoulder blades is like the craziest tug of war burn. My headaches are from all over. The ones from my neck and base of my skull buzz all the way to the top of my head. The pressure is like someone is blowing into a balloon that will explode with one more puff. My hearing goes out if I move my head to the right or left or bend over. I am twitching again. It’s like little electrical impulses randomly shocking me. It is all a vicious cycle.

I’ve been faking it some. I’ve been hinting to those closest to me something is definitely wrong, but the tan is a little deceiving, and I love people who have invested so much in my fight to be more well actually thinking I really am more well. I have been driving even though it hurts me more than almost anything else. I also spent almost twenty-four hours this past weekend on my laptop working on the book. I was sick, and I could not sleep so I kept working. The emotions I uncovered during the chapters I wrote were overwhelming. When I returned home Monday I broke down. I told Dan the truth. I cried. I raged. When it was all said and done Dan rolled over into the fetal position, and I tried to pray.

Last night Dan came home, and I was already in bed. By eight o’clock he was beside me. I pitched another fit. I cried. I raged. Dan reached out his hand to hold my snotty one. We prayed. “God, please, just make it stop. We know You could make this stop.”

Today I cancelled my counseling appointment so I wouldn’t have to drive. I stayed off the computer except to go back and read the chapters I wrote over the weekend. I took Valium for my spasms. (I refuse to take a pain pill, because that is one step down a road I can’t admit we are on yet.) I prayed in fits and starts. How could I have so much faith and so much hope through so many years of suffering and then dig my heels in at this new development?

I’m not speaking much truth tonight.
I’m in stage one.
I’m sad.
I’m mad.
I’m desperate.

I put on my Aspen collar this morning to try and stabilize my neck.
I passed myself in the mirror, and it took my breath away.
I am broken.
Again.

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What Can I Bring to Your Fire?

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Janet and I

This blog post was originally published on August 18th, 2013. Friday was Janet’s birthday. I can barely remember what the landscape of my life looked like before knowing and being known by her. I celebrate her every day.

I have seen them in cities, and in my own neighborhood,
nor could I touch them with the magic that they crave
to be unbroken. Then, I myself, lonely,
said hello to good fortune. Someone
came along and lingered and little by little
became everything that makes the difference.
Oh, I wish such good luck
to everyone. How beautiful it is to be unbroken.
–Mary Oliver

It’s a quiet morning here because Dan has taken the girls to church. I woke up locked in my room. My neck doesn’t move at first when my eyes open. I remember I had surgery, and I need to heal today. This is what Sunday looks like for me. Healing is my one job. I call out to have Dan bring me coffee. Normally I would go out to my nest chair and drink it while everyone else comes to life around me. Twix will crawl into my lap for snuggles and then Danica takes a turn. Today I can’t seem to move. I call Dan again to please come and get out certain pills for me to take that may raise my cortisol level, help with pain and also loosen up my poor neck. He seems annoyed. He doesn’t ask me how I slept, although I ask him, and he doesn’t ask me if I need something to eat or nibble on before I swallow six super strong pills on an empty stomach. It doesn’t even cross his mind. I don’t ask. Since I’ve been home it is much like other surgeries. I am put into my room with the door shut. I think my family looks at it as doing me a favor. The kids jiggle the bed which hurts my neck. They are loud and silly. Mostly because of the pain and meds too much input sets me off. Still, I have missed them incredibly and being alone hurts in the worst way. As they all leave for church the attitude is negative. I asked Delaney to read me Psalm 37 out loud. It’s one of my favorites. All I can feel is this rope of bad energy tightening around me. The house is a mess. As soon as they leave I cry for ten minutes straight. You know the kind of sobbing where you are just gross snot pillow soaked blotchy face and chest heaving crying? I am given a week in Maryland and that is it. I have to be better. Tomorrow Dan will go to work. I will be here alone with my girls. Delaney starts school Tuesday. Wednesday Danica has kindergarten preview and Thursday they will both be back full time. In between here I am supposed to just be mom. I’m supposed to lift up this neck and do all the things people say are stupid and careless to do following this surgery but there is no one else to do them. I am not supposed to move my neck in flexion or extension for a month. In other words, hold very still. Aside from the surgery where I went away to heal at the lake house this is how it has been. My family can barely scrape together enough time off and energy to do the mom is in the hospital thing. When my ride dropped me off yesterday my dad was waiting with his keys to leave. I asked him to please wait until Dan got home. I haven’t heard from my mom at all. I just can’t be alone yet. Dan does not function without me. He is angry at this situation. I get this. It’s maddening. But I wonder if anyone is thinking about what it must feel like to be in this body and mind and soul. Do you know what incredible shame I feel to be causing all this over and over again? He cannot come and sit with me and talk to me about how I am feeling. Even in the hospital he sat there the entire day after my surgery saying nothing. I felt so insanely alone and guilty and wanting to just let him off the hook for all of this. I always want to say to him, “You can run. It’s okay. I would totally understand.” This surgery is huge. It’s a big deal. For me, even more than the physical, it’s a mental and spiritual choice I made to try to be better. I did this only four weeks after a major abdominal and pelvic surgery. I made this choice because my husband has been given an opportunity to perhaps take on a larger role at work, my girls start school this week and last year I was completely bedridden when school began with another surgery and then another and it hurt Danica’s adjustment greatly, and my mom is completely unavailable in every way this time of year. Her family is the 600+ students entering those doors Tuesday and my dad is preparing to go to China and India for a month and good grief, how much longer can things keep being about me?

Why after all these years of blogging am I saying these things now?

Because something changed me.

Ninety nine out of one hundred of you may feel like this comes across as ungrateful, but if you know me you understand my spirit is only full to overflowing for every ounce of love and support from every corner of the universe, especially the sacrifices my parents have made. Still, what was given to me this time was something I have needed since I was a child. There has been a deep longing for a mother to care for me. Someone to just focus on me and build relationship. I have needed it so badly it is actually part of my sickness. I know this.

There she was.

An angel.

A woman I didn’t know personally until two weeks ago made this crazy offer. I didn’t really even think she was serious at first. She offered to come after my surgery and get me since Dan needed so desperately to work. Everyone who heard of this felt it was very strange. She bravely drove with her own physical limitations from Ohio to Maryland. She fed me. She took me on a hilarious trip around the beltway for prescriptions. She rubbed my neck and shoulders. I don’t think anyone had offered to touch me like that in months. Did you know you need human touch to be okay? I have been like an orphan tied to a crib. Failure to thrive. I need to be touched. She listened to me. I listened to her. Her daughter is sick with the same conditions I have. I think perhaps the windows into one another’s roles in all this was one of the greatest gifts. We talked for hours and hours and only scratched the surface of what our souls could share. I would fall asleep mid sentence and then wake and begin where we left off. She would quietly slip off as if knowing I needed space and then appear just when I was needing her. Gift. Gift. Gift. When everything else falls away WE are gift.

Before Danica’s major surgery in Cincinnati I wrote this post with a link to a song by Christa Wells that is truly my life song. I am amazed when one of the “thousand things” shows up. Christa’s new CD “Feed Your Soul” was released on Tuesday, the day after my surgery. I downloaded all the songs first thing that morning, and they played over and over in my alone time in the hospital. The song Come Close Now describes what Janet did for me.

God, every single step of this arduous journey You have given me Dayenu. It would have been enough. This present of knowing and being known makes me healed in places I thought would be broken until heaven. Even in my sadness today I understand I can only meet people where they are in their own journey. All the rest You will care for perfectly as I burn. Thank you for giving me someone to walk into my fire and just feel the heat of all this without shrinking back.

Do you know someone who is sitting in the burn today? Go close. Sing. Hold them. Be there in the fire. It will make all the difference.

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Heal the Wound but Leave the Scar

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Shadows
DSC_0053
DSC_0084

It was our first night. After an exhausting day of travel we thought we would check in to the hotel and crash. Instead, the first whiffs of fresh mountain air gave us a second wind. We felt the enormity of the gift we were given in this time away and didn’t want to waste a minute. I changed out of my airport clothes and slipped my freshly pedicured feet into open toed shoes. We floated down the grand lobby staircase hand in hand and settled in to a cozy spot on the expansive patio overlooking the city lights. I’d been there before. I loved sharing the nightly tequila ritual and toast and special menu secrets at Salud. We sipped drinks made with cucumbers and fresh agave juice. Something shifted as we bared our souls in several hours of conversation under the Tucson stars. We hadn’t wanted to admit the way we were holding insecurities and hurt in tight fists. Now we wondered out loud. How long had we moved through the motions of marriage? Recognizing one another’s unique fragility we cared too much to make even the slightest movement. We knew even one bump had the possibility of upsetting our delicate balance of survival. With open hands and hearts we purged the pain and sadness and cast it all in the fire on our way up to our room. It was a fresh start like only Jesus makes.

The next morning we woke tangled up in silky white sheets and duvet after the longest exhale of love. It had been years since we had the time and place, desire and energy to slow our intimacy to the metronome of breath. For the first time in almost eight years I let him fully see me, and he wanted to look. He traced every single scar with his fingers, and we took turns telling the story together. Not my story. Our story. I never doubted we were one heart, but something about all those wounds often made one flesh a difficult proposition. With every surgery and every long recovery I felt a gulf widening between who I once was to him and who I had become. Suddenly I could see in his eyes and hear in his voice a truth I’d not known before. He loved me even more because of the suffering not in spite of it.

Today marks a week since we returned home. When I stepped out of the plane onto the jet way here the temperature was below zero. I began to cry. I rounded the corner in the airport to see my Danica running towards me bundled from head to toe. I was wearing ballet flats with bare tan feet exposed and no coat. I hugged my sweet girl and cried even harder. Coming back here, a place I know causes very specific pain and many of my symptoms, was heart breaking. Dan looked over and winced as he saw the Monica Kaye he had reclaimed already slipping away.

It was a week ago I exiled myself with my Savior for His forty days in the wilderness. I’m daily sitting with Christ as best I know how. I’m listening to His heart as He prepares for the immense sacrifice He’s been asked to make on the cross. I am brought face to face with a God who knows every ugly sin I’ve committed or will commit. He sees my unspeakable mistakes and feels the bitter shame that wounded Him. His humanness, his hunger, his temptation, his pleas for release from this before the world began plan break me again and again. He is God made man. He sympathizes in every way without sin. My redemption could only come through a sacrifice this understandable and this unexplicable.

I’m walking closer to the days when I will see Him crucified. The wilderness, however uncomfortable, is just a preparation for the week when I will have supper with Him, tell Him I love Him, turn around and deny Him and then watch Him take the lashes, carry the cross and be wounded for my transgressions. At the last hour He will be completely forsaken by His Father and suffer hell for me.

When I’m face to face with Him I know for sure the scars I bear both inside and out are completely redeemed. His dying love stops my breath. His resurrection starts it again.

Since Tucson I pray for fresh starts and new beginnings. I long to live in a place that gives me a more whole body and healed spirit for my husband and daughters. I ache to take all this pain and turn it into a beautiful ministry for others walking this similar road.

When I’m face to face with Him. When I remember His love for me. I trust Him completely.

Every cut of my flesh has healed into a bumpy red reminder of God’s mercy to me. Every sharp memory of sadness and sin has kept me on my knees even though I’m completely free.

Dan and I hiked several miles up a mountain into the Sonoran desert. On our way we stopped to build Ebenezers. Each of us chose seven large stones to symbolize our seven years of tribulation. They stand as altars to God’s faithfulness. We were living something impossible. We were away together on vacation. I was hiking. I was breathing. I was well. We lifted prayers of gratitude as we moved on and my Dan began singing softly as he led the way.

Come, thou Fount of every blessing,
tune my heart to sing thy grace;
streams of mercy, never ceasing,
call for songs of loudest praise.
Teach me some melodious sonnet,
sung by flaming tongues above.
Praise the mount! I’m fixed upon it,
mount of thy redeeming love.

Here I raise mine Ebenezer;
hither by thy help I’m come;
and I hope, by thy good pleasure,
safely to arrive at home.
Jesus sought me when a stranger,
wandering from the fold of God;
he, to rescue me from danger,
interposed his precious blood.

O to grace how great a debtor
daily I’m constrained to be!
Let thy goodness, like a fetter,
bind my wandering heart to thee.
Prone to wander, Lord, I feel it,
prone to leave the God I love;
here’s my heart, O take and seal it,
seal it for thy courts above.

My song today.

Heal the wound but leave the scar.
A reminder of how merciful You are.
I am broken, torn apart.
Take the pieces of this heart and
Heal the wound but leave the scar.

I’ll build an altar of the rubble that You found me in and every stone will sing of what You can redeem.

Don’t let me forget everything You’ve done for me. Don’t let me forget the beauty in the suffering.

Heal the wound but leave the scar.

(This beautiful song by Point of Grace has been on my “healing” playlist for years.)

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Calvary Love. A Month of If

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heart book

Three years ago, while I was recovering from my brain decompression and fusion at a friend’s beautiful lake house, I had the blessing of entertaining angels. In May, 2010, a girl across the world reached out to our family. She became one of the most faithful to love and pray for us on this journey. We became friends in a way that I never thought possible without meeting face to face. She and her mum traveled here from Australia to get her settled so she could begin her call to seminary. That snowy January night we shared a meal together. After dinner we moved to the living room and sat across from one another in front of the crackling fire. The fellowship was sweet. I found myself bearing my heart to them with an ease I rarely feel because of my pride. We wept. They prayed with me. They asked things of God for me that I have never really been brave enough to ask for myself. The time slipped away, and it was very late when we headed to our beds. I loved having a place for them to stay. My particular gift of overnight hospitality had been buried because of circumstances, and it meant so much to be able to offer them such a pleasant place to sleep even though it wasn’t my own home. In the morning dear Bethany came down and gave me a gift. It was a little blue hardback book. I gasped when I saw the two gold letters imprinted on the binding.

IF

When I was a little girl I found my mother’s copy of this book by Amy Carmichael. I didn’t know much about Calvary love then, but I was drawn to the simple paragraphs and the pressing of the heart. I was drawn to the white space left on each page as if to say,

“STOP HERE.
YOU CAN ONLY ABSORB THIS TODAY.
MEDITATE.
PRAY.
LIVE THIS BEFORE YOU MOVE ON.”

In the short time we had together Bethany reminded me how powerful words are, and how my words here on the screen had changed her. It was God once again speaking to me about how this journey is definitely not just about us. He is working in ways we may never know until eternity. He was asking me to keep telling the truth and pointing to Him. He was asking me to suffer awhile longer because He suffered for me.

I keep the beautiful vintage copy of Amy’s book on my prayer bench. I return to it over and over again.

She writes this in the opening of her soul searching book:

There are times when something comes into our lives which is charged with love in such a way that it seems to open the Eternal to us for a moment, or at least some of the Eternal Things, and the greatest of these is love.

It may be a small and intimate touch upon us or our affairs, light as the touch of the dawn wind on the leaves of the tree, something not to be captured and told to another in words. But we know that it is our Lord. And then perhaps the room where we are, with its furniture and books and flowers, seems less “present” than His Presence, and the heart is drawn into that sweetness of which the old hymn sings.

The love of Jesus, what it is – None but His loved ones know.

Or it is the dear human love about us that bathes us as in summer seas and rests us through and through. Can we ever cease to wonder at the love of our companions? And then suddenly we recognize our Lord in them. It is His love that they lavish on us. O Love of God made manifest in Thy lovers, we worship Thee.

Or (not often, perhaps, for dimness seems to be more wholesome for us here, but sometimes, because our Lord is very merciful) it is given to us to look up through the blue air and see the love of God. And yet, after all, how little we see! “That ye may be able to comprehend what is the breadth and length and depth and height and to know the love of Christ which passeth knowledge” – the words are too great for us. What do we comprehend, what do we know? Confounded and abased, we enter into the Rock and hide us in the dust before the glory of the Majesty of love – the love whose symbol is the Cross.

And a question pierces then: What do I know of Calvary love?

The entire month of February I will be posting If questions from this powerful little book. I invite to you follow along this journey. I pray you will be drawn to Calvary love.

I am giving away a copy of this book every Sunday this month. To enter please share one of the daily “If” posts on social media (facebook or twitter) and comment here on the blog post you share. Let’s meet at the foot of the cross together.

Photography by Cindee Snider Re. Used with permission.

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Gorgeous Possibilities

by

worth

I’ve been quiet about the results of my latest plasmapheresis treatment for many reasons. I posted a small update on my gofundme account, but I have been holding much of my progress close. There are moments and sometimes hours of certain days when I feel completely well. I’m afraid to even speak of these for fear they will vanish into thin air.

This was my third round of treatments in a year. If I weigh the good days with the bad they still lose in numbers, but they win in every other way.

Today I received my statement for the treatments in December. The above is just the hospital portion. It is staggering. God found a doctor and hospital willing to take this chance on me. Part of the deal was I would be responsible for the difference between the contracted rate with an in network provider and their rate which is much higher. When you consider my shunt revision in February, the first round of pheresis that was inpatient for twelve days, the IVIG at home, the Meningitis and more hospitalization, the second round of pheresis, the fusion surgery in October and then pheresis again it seems impossible to say 2014 was a “good” year. But it was.

Living with EDS and all means makes for a kind of bipolar existence. The depths are incredibly dark and desperately painful. During these times you doubt the fight is even the right thing to do. It is the heights that convince you every better day might turn into a best. You hope no matter what the cost.

I’ve had some of these days lately. I’m floating in ordinary I count as pure miracle. I cry at the craziest times. The things bringing me the most joy are completely counter intuitive. If you are annoyed by it or dread it I’ve probably been longing for it.

A woman from Alaska who read Team Danica for years panicked when the site went dead. (I’m truly sorry I was not savvy at all about my switch to this site. I’m finding out many I never knew were reading and praying, and I left the story abruptly. Forgive me.) She eventually found us here and contacted me. She was waiting for the right time to reach out. Her gift was a year membership to our local YMCA. This is something we never would have given ourselves, but it has become this beautiful way for all of us to venture outside these walls and grab at something called wellness. Dan is able to continue his fitness which has been a lifeline for him. The girls can swim which is the closest thing to vacation they’ve had in a long time. I can walk. My puffy flesh and crumbling bones are remembering how to move. My veins are pushing blood to my head and heart. I breathe in and out with a mantra, “Thank You. Thank You. Thank You.” When I think we’ve seen every possible kindness someone appears like an angel and finds a new way to remind us we are not alone.

I’m picking my girls up from school faithfully. Every time I see Danica in the car rider line and Delaney breeze out of door one I tear up. I’m there. I’m waiting with a smile and love. Delaney used to say she would anxiously approach our front door every afternoon when my mom would drop them off. They would ring the bell, and I would appear in the sidelight. She said she could tell how much pain I was in by the expression on my face. Do you see how life altering these normal everyday things are to us?

I’m out of bed when Dan gets home. I’m doing little things around the house to ease his load. I’m able to control the insane OCD behavior that was always my downfall before and find gentle ways to reclaim my home. We are falling in love again. Every time I come out of the dark Dan is waiting there. He never forgets the person I am. Underneath the train wreck eighteen surgeries has made of my body and the wasteland this kind of suffering inevitably has made of my mind and heart he believes in me. He finds me again and again.

I’m meeting people face to face. Oh how I’ve needed this. I’m inviting others to come sit on my yellow couch and remind me how to do relationship outside a screen or a phone. I’ve met friends for coffee, had brunch, gone to the movies, prayed holding hands and hugged them all. Yes, if you touch me I will cry. I’m convinced sick people need to be touched to be healed. Failure to thrive is a real thing. I made a new rule in our house that every hug has to last at least thirty seconds. We count it out. If two of us are hugging and someone sees us they pile on. I don’t yelp in pain when someone touches me. I’m less prickly, and this makes all the difference.

I have doubted what my breath is worth when held up beside the ledger of debt and the great emotional cost to those who love me. It is in these days when the sun burns through the clouds I know for sure I must press on and save the life I can. My God wrote this story before I was a human thought, an act of love and a stirring in my mother’s womb. This relief, however long, is a miracle.

Christa Wells wrote this awhile ago on her blog, and I hold it close as I continue to tip toe through what I believe about beauty from ashes. I can still smell the burning. I know for sure He will ask me to walk through the fire again, but today all I see is redemption, restoration and renewal. All I see is Jesus paid it all. All I see are the gorgeous possibilities giving me healing and life.

My Hope remains.

When something life-giving falls from us who are riddled with want.
A word of kindness or sympathy.
An inconvenient act of generosity.
Isn’t it a miracle?

If something touched by our trembling fingers grows gold and winged, soars . . . finds entrance to another human soul. Isn’t it a miracle?

When a child looks you in your tired eyes and reaches a small hand, adoring.
Isn’t it miraculous?

When a friend hears the pained confession,
And stays.

When we find ourselves swept off our seats in laughter, even though.
Is it not the most welcome kind of miracle?

When work comes along, finally.
When the work is completed.

When an improbable friendship is born.

When we find a fragile opening to forgiveness.

When something lost is found.
Something broken healed.
Something caged released.

When one creature carries and nurtures another in the caverns of its own body.
When the crocus smiles from snowy earth,
And strangers share a meal.

When brothers and sisters pave new ways.

When suffering sweeps over and still we see light and truth and love and hope.

When the artist creates.
When the creator loves.
When the lover saves.
And the Savior lives!

May we be moved to see the marvels of things in motion here.
The miraculous, gorgeous possibilities which rise from the ashes of ”reality”
Providing what is needed for life.

“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.” Ephesian 3:20

What ordinary miracles are you celebrating this week? What gorgeous possibility are you hoping and praying for?

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Learning and Healing in Relationship

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“Healing is impossible in loneliness; it is the opposite of loneliness. Conviviality is healing. To be healed we must come with all the other creatures to the feast of Creation.” –Wendell Berry

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One of the most remarkable and constant threads in our family’s walk through suffering is the amount of love and support we have received from others. This began with just a few local friends. It bloomed and grew to span all the way across the United States and the world. We have been wrapped in a network of love much larger than our geographical location could provide because of the power of story and the internet.

Early in our journey we had a home bound and wheelchair bound child with a year ahead of us in restrictive healing. I was a very sick mom in and out of the operating room with a very long road of surgeries and treatments ahead of me. Church was impossible. Book club was impossible. Participation in the charity groups who had loved us was impossible. I received countless cards and letters and emails but very few phone calls or actual visits. People naturally felt uncomfortable talking about their next planned vacation, big home improvement project, new shoes or even silly little gossip around a family that was literally just trying to survive the day. I understood this. Over time it caused an aching desire to participate in real face to face relationships and not just those behind a keyboard and screen.

We need community. This same girl who has always in some way loved being alone was drawn into this scary place of sharing in the blogosphere. It connected my family and me with people near and far we never would have known without technology. It brought many of the prayers and much of the provision we desperately needed. In all the good growing from the blog the lack of meeting and knowing face to face brought a hollow understanding of how God intended us to see our ultimate need for Him. In the flesh is where the work and the reward of relationships are really cultivated. Tim Keller wrote in his book King’s Cross: The Story of the World in the Life of Jesus, “If this world was made by a triune God, relationships of love are what life is really all about.” The Father, Son and Holy Spirit are a continual reminder we are not soul freelancers. We need corporate worship. We need to physically be with the Body. We need to understand our brokenness is shared in some way by the whole.

In November I attended The High Calling retreat in the Texas hill country. It was a stretch for me in every possible way to join a group of people for an entire weekend in this intimate setting. I’d been begging God to restore some kind of community in my life. This was my answer. Everything God had given me, shown me and blessed me with needed the breath of life that could only come from opening my heart and being with people again. It was in this place my story began to take its’ final shape and became ready to be told beginning to end. I needed to come together with others to make my healing viable. I needed to taste the fruit that only comes by taking the risk of letting people into my life through the door of my heart to remind me how to do fellowship, friendship and love.

I am fumbling through this new found realization. As I have periods of being more well I need to relearn life from others. I need real relationship. I promise you I will be the strange lady who bursts into tears at the most inopportune times. I will not be good at small talk for a while. You will be surprised how quickly I want to talk about heart matters and soul issues. You will need to remind me to not be so serious. You may have to ask me to quit talking about the minutiae of neurosurgery and science of autoimmune illness. You will need to share your joys with me, because I DO care about your beach trip or your new countertop. I really do. I want to hear about the conversation you had with your kids in the car or your latest and greatest crockpot recipe. It will take some time and some effort, but I need you to heal.

It is authentic knowing and being known that points to the life sustaining relationship I have been given by Grace with Jesus Christ. Real bones and real flesh given in sacrifice for me encourage me to live and love more like He did in relationship. I need to finally get comfortable wearing the sign that calls me out as the poor and the brokenhearted. I need to surrender in the most uncomfortable places where I believe He does His greatest healing. Adele Calhoun sums it up beautifully in her chapter on community in her Spiritual Disciplines Handbook: Practices That Transform Us:

My life has been shaped by men and women who loved me and handed me something of God in their very human lives. Their spiritual practices were woven into the fabric of their lives on the loom of relationships–both with God and with me. They had no halos. They told me the truth about the good, the bad and the ugly while passing on the lore of the spiritual disciplines they had traversed. I believe this is the way spiritual disciplines are to be learned. We are to learn them in relationships.

Has technology slowly siphoned your participation in face to face relationships? Do you use the availability of media for worship and teaching as a replacement of gathering together with a community of believers on a regular basis? What is one way you could tangibly reach out and touch someone today?

Photography by Cindee Snider Re. Used with permission.

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Dear Mom. A Letter from Delaney

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“I heard once that the average person barely knows ten stories from childhood and those are based more on photographs and retellings than memory. So even with all the videos we take, the two boxes of snapshots under my desk, and the 1,276 photos in folders on the computer, you’ll be lucky to end up with a dozen stories. You won’t remember how it started with us, the things that I know about you that you don’t even know about yourselves. We won’t come back here.

. . . I think about your futures a lot. I often want to whisper to you, when we’re tangled up together or I’m pinning your poetry to the bulletin board or repositioning the pillow under your head so you don’t get a crick. ‘Remember this. This is what love feels like. Don’t take less.’ But what I end up saying is ‘This was my dream. You were my dream.’ I’ve said it too many times though; now when I look at you all soft and gushy and say ‘Guess what?’ You say ‘This was your dream. I was your dream.’–Kelly Corrigan, Lift

Laney Trees

Every mother bears some kind of false guilt. There is no way we can live up to the expectations in our heads and hearts telling us all we are supposed to be for our children. For a sick mother, especially a chronically sick mother, the real or supposed guilt comes in constant waves. Not an hour passes that some kind of message from the world doesn’t remind us of how we are failing.

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.

I’ve also written public letters to my girls on Team Danica. This is a little snippet of one I wrote to Laney during my brain surgery year:

I’m sorry. I ache to give you the normal ebb and flow of life. I am so sorry I can’t get out of bed so many mornings and you always have to find me lying down. I long to be the fun and energetic mom you want. I wish I wasn’t always so tired and on edge and just plain grumpy. I have felt like we are all on autopilot for so long just to get through. So many important things I want to do with you I have not. So many things I’ve said I wish I could take back. So many things I wished I had said, but I never did.

At the end of every day I crawl into bed with you. We read or watch old episodes of Andy Griffith or The Waltons. We pray and then snuggle and chat while “Sleep Sound in Jesus” plays. I see you cling to me, your mommy, no matter how many times we have tussled during the day. Tonight you looked right at me. I am so haggard and tired and broken. You asked, ‘Mom, Do you remember what you looked like before?’ It hurts me, but I understand. Danica still looks at me the way you used to, like I’m the most beautiful woman in the world. I knew this would fade and you would begin to see my flaws on the inside and the out. I want you to know this is beauty too. This taking one painful step after another to care for you is love.

And here is one I wrote her after missing another Christmas program because I was so sick:

I am so proud of you. You have worked so hard at everything you have tried. You have taken all the responsibility for your heavy school load, extra curricular program and your music. You are thriving, Delaney. Even when you come home, and I have already clocked out for the day because of pain, you remain cheerful and helpful and loving to me. You meet me where I am probably more than any other person in my life. You never make me feel guilty or manipulate this very difficult situation. You still love to be with me when I am grumpy or sad. When I look in your eyes I know I have to keep fighting so I can see what happens next.

You are everything I dreamed you would be. You are kind. You are generous. You are brave. Oh my, you are so brave. You are strong like I wish I could be. You are wise way beyond your years. You are funny. You make me laugh out loud. You are crazy creative. You are bright. I mean like the sun. You are smart too. You are tough as nails but have the most tender heart. It’s a perfect mix. You are grateful. You are a leader. You know who you are. You know who God made you to be. You are so much more. You are the most.

When I look into your piercing blue eyes and try to count the cinnamon sugar on your nose and cheeks and when I kiss you on your head and touch the gold in your hair I still catch my breath. When I see you first thing in the morning, you are a bubble floating into my day. When I tuck you in at night, you are a perfect punctuation mark to all the good and bad and in between. When I doubt why God could have put me here. When I ask Him why He is keeping me here. He answers with you.

I love you Laney. There has never been a minute in your life I wasn’t carrying the awareness of the extreme treasure you are. I worry sometimes that you won’t know how I feel. I feel afraid I can’t love you well enough because I am such a different kind of mom than most everyone else. That’s why I’m writing this now. Maybe someday I’ll be healthy again and will attend your daughter’s Christmas programs. Maybe I will be sicker or even gone, and you will have to navigate even more life without me physically present. However it goes, I need you to understand my heart for you.

It’s LOVE. Simple. True. Forever.

Last night Delaney brought me a letter. It was not a grandiose gesture. She had been asked to write a thank you letter to someone as a class assignment. She chose me. She spoke to me in my favorite love language, words. Every single reason I’ve felt sad or guilty about being a very sick mom for oh so long melted away as I read her genuine affection for me as her mama just the way I am. I never expected this from my twelve year old. Perhaps when she headed off to college or maybe on her wedding day or after she had her first child but not now. I certainly never expected her to be able to separate the wheat and the chaff from our complicated life and hold on to the good stuff like she so clearly is doing. I was blown away.

Dear Mom

One of the beautiful lines I’ve plucked from Joe Rigney’s book The Things of Earth: Treasuring God by Enjoying His Gifts speaks of guilt.

“False guilt kills true joy and ruins us for fruitful ministry . . . To feel guilty for something God does not regard as sin is itself a sin.”

Moms, read this again.

“False guilt kills true joy and ruins us for fruitful ministry . . . To feel guilty for something God does not regard as sin is itself a sin.”

I am the mother God chose for Delaney and Danica. As my friend Jennifer Dukes Lee would say, “I am PreApproved!”

Do you ever feel like God must have gotten it all wrong when He chose you as the mother of your children? Do you feel inadequate? Do you feel guilt? I’m here to tell you it’s just not so. You are perfectly matched with the hearts and lives of the children He wants you to love. Lean in to the fruitful ministry of motherhood. It may not look anything like your dreams for motherhood or like your best friend’s journey as a mom, but you are finding your way and your children are okay. Your children will be okay. And one day they will “Rise up and call you blessed.”–Proverbs 31:28

Photo by Grace Designs Photography

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Taste and See. And a giveaway

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“There is nothing so secular that it cannot be sacred, and that is one of the deepest messages of the Incarnation.”–Madeleine L’Engle

Sometimes people ask me outright and others wonder behind me about my pursuit of any kind of better health in the face of great risk and staggering cost to my family. This fight has also begged your own love for us over and over again. I could stop. I could curl up here in suffering and not battle anymore. I am fully aware I may even live longer if I did this. The law of averages suggests something will eventually go wrong in one of my surgeries or treatments. Here’s the thing. I don’t want to live long and not well. Because of my recent plasmapheresis treatment I have the opportunity to grab a few more months of sweet moments with my family and friends and do real work on finishing my book before a relapse or another vertebrae slips into my spinal cord. I am determined. I will TASTE and SEE the Lord is good, and I will tell about it.

While waiting at the hospital for my tunneled catheter to be removed on Wednesday my dad pulled out a book he was beginning to read. He didn’t just suggest it to me in passing. He opened it up to have me read specific treasures he had underlined. My reading life is an entirely different post for another time. Suffice it to say two thirds of most my days are spent reading or writing. I typically read books twice. The first time through is for comprehension and the second for underlining, page flagging and copying beautiful or meaningful passages into a journal or a file on my computer. I also write in the margins. I know I began this practice because of my dad. For as long as I can remember he has always read with a little plastic ruler and a black pen in his hand. The book was The Things of Earth: Treasuring God by Enjoying His Gifts by Joe Rigney. In those few moments of his sharing a few key passages and our discussing them I knew I needed this book. Thanks to the wonders of Amazon Prime it arrived late Friday afternoon. I read late into the night.

Much of the wisdom refutes an ugly root of guilt I feel when experiencing good things and especially when producing something that might be considered good by others. I can only explain this as a seed of rogue theology planted in childhood that overemphasized self denial as an unbalanced path to godliness. Happiness need not apply. Joe talks about this uncomfortable tension between dying to self while maintaining a right relationship with the temporal world around us and the very real danger of idolatry as we approach earthly things, but he shores it up with this truth.

“Given the persistence of this threat to true worship of God, one way to address idolatry is to seek to thin out creation, to hold it loosely like a hot potato, and to be wary of its delights and pleasures. We recognize the potency of God’s gifts, so we tread lightly, sticking to the shadows and refusing to plunge into the ocean of earthly pleasures . . . Christians need to be reminded of the goodness of God’s creation and God’s approval of it for our joy.”

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Saturday I was blessed to take my Danica and my niece to see Disney’s Frozen on Ice. We bought three tickets back in September when they went on sale. It was our Christmas gift to Danica. Making any kind of future plans is a high stakes gamble for our family. One of the specific goals of my recent treatment was to be well enough to follow through on this. Originally Dan and I planned to go with Danica. The below zero temperatures and snow and ice had me doubting I could physically get ready, ride all the way to Cleveland, park and walk in the frigid cold, be exposed to all that this kind of event necessitates and then make it back to the car and home. Dan offered to drive and drop us at the door and pick us up when it was over. This enabled our niece to come along. It was something rare and special for her and Danica to share together. As I settled in our seats I pulled Danica close and kissed her on the head. I broke down in tears. I was living. I was sharing something oh so good with my girl. No guilt. This was straight from the hand of my Father who delights in lavishing us with blessings. After reading the book the night before I felt free to revel in every detail of this experience.

Sunday morning I had brunch with three beautiful friends I rarely see at The Blue Door Cafe & Bakery in Cuyahoga Falls. I am a former foodie whose love of God’s imagination when it comes to the possibilities of what we can choose as nourishment runs deep. I’ve had this recommended spot on my two year “40 before forty” list for over a year. (I turn forty in November. I have serious living to do before then.) I ordered house made spaetzle sauteed with a medley of roasted Kumbocha squash, Brussels sprouts, leeks and button mushrooms with a cave aged Gruyere cream and a poached egg. Eating this meal was like worship. Not worship of the food but immense gratitude and praise for the people, the place, the ingredients and the chef’s creativity in combining them and cooking them.

Both the pageantry of the musical ice show and the brilliant combination of ingredients God made are examples of human beings reflecting the image of God. They both inspire me to praise and a more Godward heart. Robert Farrar Capon wrote in The Supper of The Lamb: A Culinary Reflection:

Why do we marry, why take friends and lovers? Why give ourselves to music, painting, chemistry or cooking? Out of simple delight in the resident goodness of creation, of course; but out of more than that, too. Half earth’s gorgeousness lies hidden in the glimpsed city it longs to become. For all its rooted loveliness, the world has no continuing city here; it is an outlandish place, a session in via to a better version of itself–and it is our glory to see it so and thirst until Jerusalem comes home at last. We are given appetites, not to consume the world and forget it, but to taste its goodness and hunger to make it great.

Both of these pleasures would not have been possible without my recent plasmapheresis. This is why I fight over and over again. This is why my emotional response to the enjoyment of seemingly normal things borders on embarrassing. This is why my family and I humble ourselves as receivers of good things from your hearts and hands in the midst of continued suffering and loss.

As Joe ends “The Things of Earth” he writes this:

To be a creature is to be a receiver . . . So embrace your creatureliness. Don’t seek to be God. Instead embrace the glorious limitations and boundaries that God has placed on you as a character in His story. May the Father of lights, who knows how to give good gifts to His children, teach you the secret of facing plenty and hunger, abundance and need, being brought low or being raised up. May He grant you the grace to do all things, receive all good things, lose all good things and endure all hard things through Christ who gives you strength.

Do you have guilt or spiritual angst when you receive good things from God? If you lose good things or experience suffering do you equate this with a change of your Heavenly Father’s heart toward you?

I am giving away a copy of Joe’s book. To enter please comment here on the blog with some thoughts about tasting and seeing good. In your comment mention where you shared. Each social media share is an extra entry. I will randomly choose a winner at midnight Friday, January 16th.

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One Word

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Monica Snyder One Word Large

“Commit your way to the Lord, Trust also in Him, and He shall bring it to pass.” Psalm 37:5

“Commit your work to the Lord, and your plans will be established.” Proverbs 16:3

For many years I have done away with resolutions and carefully chosen a word to represent my heart’s desires for the new year. I use this word by displaying it on a banner in my home. I wear a necklace with the word around my neck. I collage it on a big vision board I use as a desk mat for that year. I pray over it for 365 days and each month set an attainable goal to lean in to the spirit of the word.

Because of chronic illness and sudden setbacks including treatment and surgeries I cannot make plans like most of you do. Even when I try they are mostly thwarted and cause for disappointment. This leaves me in a day to day dependence on God I’ve come to recognize as gift even when it is painful to unwrap.

In the first weeks of January last year I sat across from my counselor in sadness. I had a shunt placed just months before to try to relieve the unbearable intracranial pressure that rendered me completely unable to get out of bed most days. It was the worst winter in decades. The bitter cold and constantly changing weather systems were crushing my body and brain. My counselor advised me to plan a trip away. Even though I couldn’t see how this would happen financially or physically I knew more than any kind of medical treatment I needed a reprieve. I needed a retreat. With my dear sister-in-law Amy on board with her Marriott rate and help from others close to me who knew I might not make it through the winter without this, I planned a trip to Tuscon, Arizona.

My word for 2014 was “PLAY”. This was my first attempt to lean in and claim something I had prayed would make real change in my mind, body and heart. The trip was planned. Then my shunt failed. A week before I was to fly to Arizona I was back in Maryland for surgery to have my shunt replaced. It snowed so heavily even the hospitals shut down, and my surgery was pushed while Janet and I holed up in a Courtyard in Gaithersburg. A week later I took a wheelchair ride to the gate at our local airport having determined not to let this trip slip away no matter what.

The time in Tuscon healed years of suffering. It was nothing short of a miracle. Not only did I become the most well I had been in years but almost every physical symptom vanished. Even with the fresh incision, a second cut in the same place to insert the shunt, I hiked in the Sonoran desert. I took long walks every day. I woke early to meditate. I had a lymph cleansing. I ate healthy food. I soaked in Vitamin D in the sunshine for hours each day. I sat on the patio each evening watching the stars appear. I didn’t need or want to sleep because I was PLAYING. When I did finally crawl into bed I didn’t need the fist full of pills to drug me into rest. I slept because I had LIVED.

While in Tuscon I revisited the call to write Gauntlet with a Gift. I took a suitcase of real books. I read five while I was there, none more profound than Bret Lott’s Letters and Life: On Being a Writer, On Being a Christian. I have read many books by writers on writing. Nothing comes close to this beautiful memoir of his approach to telling stories with the foundation of faith.

In the first chapter He tells of writing the above verse from Proverbs on a yellow sticky note before he wrote his first book.

“Commit your work to the Lord, and your plans will be established.” Proverbs 16:3

Twenty-one years later he still has it taped to wall above his desk. I kept reading it over and over. It planted a seed in me that would be choked and burnt in weeks after from more suffering but not destroyed. Two months after Tuscon I was back in Maryland for twelve days of hospitalization and treatment. It was during this time God brought a virtual friend who lived in Chicago to my room to tell me I had to obey God. I had to write this story. It was the care I needed for the seed to finally germinate and grow. I returned home and began writing in earnest.

The word “COMMIT” used in both Psalm 37:5 and Proverbs 16:3 is the Hebrew word “gol” from the root “galal” which means to “roll away” or “heap.” This means to trust or commit with the connotation of rolling away one’s trouble away from one’s self to someone who can help. As we commit (galal) our way to the Lord we are rolling away things that compose our daily lives to Him. When we trust in His love we “roll away” the burden of our lives to His care and our thoughts will be established. Only then can we freely enjoy the knowing God is directing our way (Psalm 37:23. Psalm 90:17, Proverbs 16:9)

This year I long to roll away the very real things that have held me back from finishing this book. I am giving every effort and every word to Him. I trust Him. I trust His providential call. I trust His provision to establish these plans and bring them to pass.

This year I “COMMIT.”

Do you have a word you want to claim for 2015? What do you want it to mean for your life in the coming weeks and months?

The image of my 2015 word was created by Traci Michele Little.

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