Archive of ‘Book Reviews’ category

Dear God, Please Take My Hand. A Prayer Gift. A Healing Prayer

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Prayer Beads
“Of all spiritual disciplines prayer is the most central because it ushers us into perpetual communion with the Father.”–Richard J Foster

I have always loved holding on to something physical when I pray. I have a collection of special rocks, some painted or engraved with words, several are special gifts from friends, a cross made from olive wood gifted to me last fall from a woman I just met who is now a dear kindred sister, and a delicately embroidered handkerchief that was Dan’s grandmother’s. These objects have no power or influence over the prayers, but they keep my focus on praying.

Yesterday I received a package in the mail from a friend I met at The High Calling retreat last November. I’ve written about her before and even shared her newest book with you. She knows about physical suffering and understands the struggle to keep your mind and heart on prayer when pain overwhelms you. The gift was beautiful smooth pink prayer beads with a silver cross attached. They come from Prayerworks Studio. They are not a rosary, but Protestant (Anglican) beads. I know I will use them as I do my other objects, something to hold while I lift my heart, but they also have specific meaning as a “Full Circle Prayer.” It is described like this:

This devotion is intended to take us through a complete path to God, one that puts a “new and right spirit” within all of us: praise, confession, intercession, and thanksgiving.

Cross: In the name of the Father, Son and Holy Spirit, Amen.
Invitatory Bead: Create in me a clean heart, O God, and put a new and right spirit within me. (Psalm 51:10)
1st Cruciform Bead: I praise you, Lord, for . . .
1st set of Week Beads: use each bead to praise God for His wondrous acts of grace.2nd Cruciform Bead: I ask, Lord, for forgiveness for . . .
2nd set of Week Beads: use each bead to confess your sins before God.
3rd Cruciform Bead: I pray, Lord, for . . .
3rd set of Week Beads: use each bead to list prayer concerns for yourself or others.
4th Cruciform Bead: I thank you, Lord, for . . .
4th set of Week Beads: use each bead to recall something for which you are thankful.
Invitatory Bead: recite The Lord’s Prayer
Cross: In the name of your Son, Jesus Christ, Amen.

Sometimes I pray like I’m a child. This is the easiest. I’m just talking to my Father. Other times I pray properly, like I’m being graded for getting all the “right” things in when I approach the throne. There are prayers when I groan and no words will come at all. This is when I believe the Holy Spirit is carrying my pleas and Christ Himself is praying for me. I spent much of last year studying prayer. I now own a shelf full of books on the subject. I’m most grateful for the wisdom from Richard J. Foster’s Prayer: Finding the Heart’s True Home. Richard writes,

“I discovered that regular patterns of devotion form a kind of skeletal structure upon which I can build the muscle and tissue of unceasing prayer.”

I realized that much of my “pray without ceasing” life was throwing out little thoughts towards Him throughout the day and calling it prayer. After reading Richard’s book I began set times during the day to pray. I haven’t always been a knee praying person, but I knew if I was to follow the discipline of a pattern of prayer I would need a place, and it might need to be a little uncomfortable. This is when I bought my prayer bench.

Prayer Bench

The past few months I have struggled the most I think I ever have to find words. I kneel at the bench with my heart broken open, and I cry. It is during these times I am grateful for the prayers of other saints lifted up and also recorded. I read them out loud. I repeat them. I thank God they found the words for me. The following prayer is one I took to the hospital with me for my surgery, and I have prayed it over and over again since.

Dear God, please take my hand and help
me walk through this fire.
Don’t let me slip away, please hold me
in your power.
Help me see the light and to hold on
tight, to have faith.
Help me to learn what it is you want
me to learn.
Help me retain my dignity and help me
to accept what I can’t change.
Guide me … sit in my heart.
Don’t allow despair to swallow me.
Please God, show me a road out of here.
Help me find the strength to cope …
and to grow.
Help me regain my health … please God.
Carry me if I can no longer manage to
stand,
and set me under the shade of your tree
so I can heal.
Please show me the path to peace, and
mend my heart.
God, I am powerless in this valley of pain,
please lift me up and always let me know
your presence.
Please be in my heart and take my
shaking hand.
Amen

A Prayer By Sherry Larsen

Is there a written prayer you cherish? Do you find discipline aids or hinders your prayer life? I’d love to know what God has taught you about praying.

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Do you See? Gauntlet Story Feast

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*“Our whole business, then, brethren, in this life is to heal this eye of the heart whereby God may be seen.”–St Augustine

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I wrote the following post December 2, 2011, having just returned home from my first neurosurgery. I’m now snuggled under the same quilt in my own light filled home recovering from my seventh neurosurgery. I am so filled with suffering I can scarcely breathe. It is not the physical hurt. I’m convinced I could win a pain endurance trophy in a suffering Olympics. I am only slightly bothered by intense post surgical pain, because I can mentally understand it. Compared to the headaches before this latest fusion and the insane burning of my hands and feet, both of which resolved instantly with the pressure removed from my spinal cord, I know this is the good kind of ache. This is skin and flesh binding to one another over additional scaffolding in my delicate spine. The suffering I face now is in my mind and my heart.

I believe I see clearer than ever, but those who have necessarily walked this Gauntlet with me seem to have cloudier vision and lost more perspective each time we’ve done this. Maybe they are just tired. My oldest daughter, Delaney, came to the foot of my bed yesterday. We were talking about upcoming school shopping and in the honesty we’ve always shared she said, “This is just hard. You are grumpy, and I know it is because you are hurting, but every summer is like this.” I am wrecked. The truth is I have one of those “on this day” apps for Facebook, and I realize how many years we have been in continuous crisis, leading up towards it or recovering from it. Dan and I had a fight last night. We don’t fight. Ever. Truly. I sometimes want to give him an out. He has to want that. All I wanted was a hug. He said I was too “brittle.” I know he wonders if he will ever have his wife back. We both know he is not cut from the cloth that cares for someone sick long term and certainly not disabled. He cannot advocate. He can barely sit in a hospital room. I don’t think his love for me is tied to this. I think it’s just too much to ask of him. I know that’s a real thing. You’re a fool if you think it’s not. My dad reminded me recently one of the most painful things I know to be true. “Most men would have left.” It is only my little Danica whose empathy seems to know no bounds. Although she cannot remember fully her own surgeries or even the months of being held in a brace which kept others from real touch she finds me and clings to me in the awkward way you must when your mommy is wearing an Aspen collar all day and night.

I see like the blind man who Jesus took outside the city and spit on earth and covered his eyes with clay and healed him. When I read this oh so old post I almost laugh at the beginning of that miracle in my life. Surely it was not only meant for me. The suffering I feel today comes from my vision being almost crystal clear and less myopic every day, and the paralyzing fear those close to me are seeing less and less. As I wade through my usual post surgery self pity I push to begin going back to work. I am finishing my book. I edit based on these new stories I’ve gathered and the added perspective they bring. I realize more than ever this book is for those of us who drag our chairs around in a circle each week and say, “Hello, My name is Monica, I have,” and we state the laundry list of conditions that are not us but that make up our bodies and have become the threads that hold together our lives. We share the things even those who love us most and try the hardest can only make out through a mist.

Nora Gallagher was presenting at a writing conference in Washington DC the weekend our family left for the beach. I desperately wanted to attend. I took her book Moonlight Sonata at the Mayo Clinic to read on our trip. I suggest anyone beginning or walking through a journey in the world of illness and medicine and sorting out their faith in the darkness and sometimes blinding light the long walk brings to read this honest and beautiful narrative. In her last chapter she writes:

Following Jesus was meant to be an ongoing movement, not a creed, not a wall of set in stone words. A place where practices, like prayer, like meditation, were taught, where stories and memories, largely about vulnerability and suffering were collected and shared. The body’s pain and suffering were meant to be a part of this whole: I don’t think Jesus had in mind a place where you had to tolerate the empty predictability of a service and stand upright at the coffee hour if you had been diagnosed with lymphoma or sarcoidosis or lung cancer. He was, at the heart of his ministry, a healer.

And the stories of his followers were meant to be taken seriously to become part of the ongoing larger Story. A river of stories, joining the sea. The living stories of a faith’s followers are what keep it alive.

I have more regard for how each of us finds a way, the man in scrubs playing the Moonlight Sonata at the Mayo Clinic, the girl in the wheelchair, the boy with no hair running in the wind, each of us feeling our way in the dark. “The infinite value of one human being,” a friend said, “isn’t that what it’s all about?”

This land of illness, behind the wall, is much larger than I thought, and through its lens, the world we all live in, what we call the natural world, becomes more precious. I said I would give quite a lot to have my own body back, but yesterday I saw the evening light falling on the old oak trees in our park, their bark like the skin of elephants. This world is so beautiful, and not only can I still see it, I no longer pass through it quite the same way I did before. I, at least sometimes, am in it, in its beauty, in its enchantment, in its divine life…”

I want healing in so many ways, but more than any physical restoration I want the kind of heart healing that causes me to see Him clearly. This is my work. This is my calling. This gives me purpose in my suffering this afternoon.

Do You See?
By Monica Kaye Snyder
Written December 2, 2011

I’m sitting here in bed propped on many pillows and covered with my favorite “story” quilt from home. I’m looking at the sun glistening off the peaceful lake right outside the floor to ceiling doors and windows to the left of where I rest. I watch the dancing rays on the simple colors and patterns of the soft rug covering the hardwood floor. Classic and simple furnishings comfort me and are a present wrapped in the way beautiful space has always been a gift to me. There are pictures of people I do not know smiling at me. They have a summer life here, and because they are part of this big household of faith they opened their home to me to heal. I have wanted this. I have prayed for this. I have desperately needed this time and place more than I ever could have imagined. I see.

If you have been reading this blog from the beginning you know my theology has often brought me to ask many questions to a God I believed in and trusted but still held at bay when it came to His providence and how it worked in tandem with my sin. I especially questioned Him when it came to the suffering of Danica and my family. He recently brought me to this passage from John 9:1-3.

“As he walked along, he saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him.'”

Four years ago Danica was born through months of intense physical suffering and great loss on many levels. The verse I would cling to was from Job 42:5, “I have heard of You by the hearing of the ear; but now my eye sees You.”

I have literally a hundred amazing stories to tell about my trip to Maryland and surgery and healing. They all speak directly of a God who is always in the details and thrives in showing His Grace through people. The morning of my surgery my sweet sister-in-law Amy took me to the hospital to get registered and get my PICC line placed. I did not feel so much nervousness as I did really dreading the process that leads up to actually being wheeled into the room and getting to the real business of surgery. If you’ve been through many surgeries you know that everyone comes in and meets you and chats about certain history and reminds you of the risks and complications that could arise and then has you sign a bunch of forms. There were two people during this process who blew me away. First I had to go over and register and show my identification and insurance card, etc. When anyone finds out you are a patient of Dr. Henderson it seems there is a special kind of reverence and care surrounding all the dealings moving forward. This sweet woman saw a countenance on my face that she instantly recognized as being a “believer.” She said, “I am already praising God with you for what will happen in that operating room today and during your healing.” I see.

When Dr. Henderson came in to speak with us he had his classic blue blazer on and held my hand tightly as he prayed over Dan and I. He asked for God’s guidance of each movement of his hands and each decision he would make during the surgery and then he asked specifically for my healing so I would further be able to glorify God by doing His will in His kingdom.

Stop. Read it over again. This man who would cut open my head and neck and painstakingly move around in my brain stem and spinal cord had just prayed the desire of my heart. All I have longed for is to be doing God’s will and giving Him glory. I know these heavy burdens are not given lightly. With them come great responsibility to bear them into something beautiful and eternal. This is why Dr. Henderson does this work. I cannot be healed and go back into a life anything like what it once was. I’ve SEEN and have to tell about it.

When I came out of surgery and began to get my bearings in the recovery room all I could say over and over was, “I CAN SEE.” The black floaters I had suffered from for years, particularly in my right eye, but most severely the last months as the pressure in my head had worsened were completely gone. As I type this now I have no obstruction of my vision at all. Although I am in considerable pain from the rib harvesting and my large head and neck incision I do not have the paralyzing vice grip in the back of my head. I do have quite a bit of nerve “damage” from the screws put in my upper skull to hold it in place during surgery. I have felt like my head is numb. I know many of these post surgery pains will take patient healing and rest to make it a true success.

I am praying that all the faith being made sight will unfold in your life and mine so the power of God can and will be seen in us.

About Monica Kaye:

Monica Kaye Snyder is a voracious reader. She is a blogger, a writer and maybe even an author. She continues a long journey of chronic illness and daily physical suffering. Some of her diagnoses include Chiari malformation, Ehlers-Danlos Syndrome, Tethered Spinal Cord, Craniocervical Instability, Postural Tachycardia Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder and most recently PANS/PANDAS. She’s seen real miracles happen and holds on to Christ’s Hope as an anchor for her soul while living in great pain. She is wife to Dan and mother to Delaney Jayne and Danica Jean. She knows for sure if she does nothing else well in her life, this will matter and be enough.

MonicaBW

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

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Recapture My Heart

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

By Paul David Tripp

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

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

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

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

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

Bringing Good Out Of Bad
By Delaney Jayne

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

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

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

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

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

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

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

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

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

About Delaney Jayne:

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

Laney Trees

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

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

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

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Holding On. Letting It Go. And a giveaway

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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.

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Who Do You Think You Are?

by

Monica10

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

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Undone. Treatment Again. And a giveaway

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Trauma

I began reading Michele Cushatt’s Undone: A Story of Making Peace With an Unexpected Life at the beginning of a challenging week. You may have noticed quotes from her book on the graphics for recent posts about our new Thursday community called Gauntlet Story Feast. I finished reading it yesterday while waiting at the hospital. Michele’s narrative is full of truth spoken into my mind and heart at a time when the lies seem much louder and more believable.

Her story is completely different from my own. It involves ministry, divorce, remarriage with a blended family, foster children and recurring mouth cancer. Still, there are quotes at the beginning of each chapter that I have woven into my own tapestry of faith over the years. Most of the Scripture she shares are verses and passages I have scribbled on index cards, in journals and highlighted and bookmarked in my tattered Bible. There are moments she bares her soul in such a way I can literally see my own reflecting back at me.

I’m heading back into the trenches of treatment. There are always weeks I dance around what I know is happening in my body, and there is always a moment when it becomes clear intervention is needed again. I get that heart pounding, mind racing, nausea inducing panic. Every time, I begin with a wail similar to Michele’s when the fears of her cancer returning, prompted by some kind of physical manifestation, would cause her to cry she just couldn’t do it again. Another surgery. Another treatment. Not again.

She candidly writes about trying to do all the healthy things she knew may bring some measure healing. I certainly have been dedicating myself to these things as well. Eating well, exercise, mental health counseling, consistent time in the Word and prayer and meaningful relationships with positive people have been my primary focus since my last round of plasmapheresis over Christmas and New Years. All of this is good. But when your DNA is glitched. When your cells have morphed into invaders. When God answers a resounding “No” to the pleading for Him to remove your thorn in the flesh you start to know

. . . the hard way, that sometimes trauma grows beyond a long walk’s ability to cure. The losses, crises, transitions, and upheavals extend beyond the arm’s capacity to hold. At times, even when your belief in and love of God run strong and true, your body just can’t take any more of the trauma.

The first time I had apheresis I was in-patient in Maryland. It was a year ago. Dan and I left our girls on Easter weekend to begin this new chapter in my quest for healing. I had a three pronged nearly foot long “Quinton” catheter placed. It hung from the side of neck and made every movement uncomfortable. I had eighteen surgeries under my belt by then, five in that hospital. Because my venous system is also affected by my EDS I require a PICC line for most things. I knew the interventional radiologist and trusted him and the team implicitly. Still, I had nothing to compare this placement to. Lidocaine doesn’t really numb me. I tell this to everyone who tries to use it. They never quite believe me. I’ve learned to bite my lower lip, hold back curse words and let people take the cut. I think everyone on the outside looking in at my life must somehow think it gets easier or less frightening or even less painful to go through these traumas over and over again. I’m telling you it does not.

When I repeated my treatment locally and out-patient in early September, 2014, we decided to have the line placed at my insurance preferred hospital for financial reasons even though the actual apheresis be at a local out of network hospital. My dad took me for a scheduled 7 am surgical appointment. There was an emergency that required the room, equipment and doctor and nurses I was supposed to have. The hours dragged on while I laid in my cap and gown in holding. Every once in awhile a nurse would poke her head in and tell me it wasn’t going well in there, and it would be a little longer. I had treatment scheduled at the other hospital at 2 pm. Finally they were able to take me back, but the entire room seemed disheveled. The nurses were exhausted from whatever they had just gone through. The doctor came in and said he knew I had to rush over to make my treatment time so he wasn’t going to use any sedation drugs at all, just a shot of lidocaine. I made my “it doesn’t work for me” plea. He brushed it off, and he took the knife to me. It was horrific. The entry for this tunneled cath was different. He kept getting the needle in but couldn’t get the angle right to jam the tube in. He was frustrated and I could literally feel the frustration in his frenetic efforts. I was bleeding. I could see it and feel it. I was freaking out and hot tears were running down both sides of my face into my ears. It was sewn lopsided and pulled and chaffed the entire time I had that particular cath. I developed a huge bruise around the area from the jamming and pushing of the tube. I swore I would never let that doctor work on me again.

My last round of treatment was late December, 2014. I didn’t care what the extra cost I knew I wanted the cath placed at the same hospital I would have treatment. They were so much kinder. They tried to give me some anxiety and sedation type drugs. I think they calmed me a little. I was still fully awake and very aware. The lidocaine was once again like a placebo. The doctor was much gentler with insertion. I still remember crying the entire time. Once of the nurses stood next to me and wiped my face with tissues.

Monday at noon I will have a catheter for a central line tunneled from a cut in my jugular all the way into my vena cava. This allows for multiple lumens so blood full of bad antibodies can leave my body and theoretically clean plasma in the form of albumin can enter my body all at the same time. Tuesday I will begin the first treatment.

The plan is to have five spread out over ten days. This has typically removed about 98% of my bad antibodies. What we know now through more cases and research is my body is slowly recreating these suckers and around 60-75 days after treatment I am back where I started in terms of the science and symptoms. The new recommendation agreed upon by three of my specialists, including my cardiologist in Toledo who I saw Tuesday, is we clean me out and follow immediately with an old chemotherapy drug. It is well understood. It is easy to administer weekly. It is easy to monitor for side effects and toxicity and would hopefully suppress the bad antibodies from returning. There are three other drugs we can try if this one is not tolerated. The time frame for this treatment would be six months or longer.

My parents are in Spain. My girls are on spring break. The logistics of this treatment are so hard because each day I have to go very early in the morning to get labs drawn and either sit at the hospital for hours waiting for a call from the unit for a time or drive home and wait and then go all the way back. We have Monday worked out with Dan taking off and my sister helping with the girls. Tuesday Dan will leave work and take me whenever they set a time for treatment. Even if the girls have to ride along and they drop me and then pick me up it will work. We had a little family meeting last night. Dan said, “We are just going to do our best. That’s all we can do.” There is no molly coddling our girls anymore about how this sucks. This is another break from school where all the focus is on their mom, and they have to stay still, be quiet, watch movies and wonder how the rest of their friends are having fun.

Thank you for the offers to help with meals. My friend created a Take Them a Meal schedule. The sign in is “Snyder” with the password “Help”. All our other needs are repetitive, and I weary of making them known. More than anything we need prayer. Please pray.

Michele writes at the end of her story,

Making peace with the unexpected life isn’t some trite, Christian cliche. It isn’t a beautiful string of words that look nice and shiny hanging around my neck. The kind of peace that weathers a furious squall by sleeping in the boat is both hard earned and God delivered. One story–and serving of manna–at a time. And by the mercy and grace of the one who walked me through all the storms leading up to this one, I can finally say, even as the rain soaks my face, “I am convinced.” He will not let me go.

Today I feel like I just can’t take any more trauma.
What I believe about God says I can.
I am convinced.

Our Hope remains.

When you are faced with a daunting trial what Scripture do you cling to the most? Will you comment here with a verse so I can feed on truth in the coming weeks? And will you use the share buttons below or quietly ask a friend to pray for my family and I? We are grateful. I am giving away a copy of Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life. Each comment of Scripture will be an entry into a random drawing Friday morning, April 3rd.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

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If . . . then I know nothing. Calvary Love. And two more days to enter this week’s giveaway

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If by doing some work which the undiscerning consider “not spiritual work” I can best help others, and I inwardly rebel, thinking it is the spiritual for which I crave, when in truth it is the interesting and exciting, then I know nothing of Calvary love.

I am returning to posting If questions from Amy Carmichael’s powerful little book by the same name. 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 the next two Sundays along with a little olive wood cross donated by my friend Cindee Re. To enter please share one of the daily If posts on social media (Facebook, Twitter or Instagram) with the tags #CalvaryLove and #If. Add a comment here on the blog post you share. Martha Hutcheson and Gina Weeks are the winners from week one and two.

Let’s meet at the foot of the cross together.

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If . . . then I know nothing. Calvary Love. And two more weeks of a giveaway

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If I ask to be delivered from trial rather than for deliverance out of it, to the praise of His glory; if I forget that the way of the Cross leads to the Cross and not to a bank of flowers; if I regulate my life on these lines, or even unconsciously my thinking, so that I am surprised when the way is rough, and think it strange, though the word is, ‘THINK IT NOT STRANGE . . . COUNT IT ALL JOY,’ then I know nothing of Calvary love.

I am returning to posting If questions from Amy Carmichael’s powerful little book by the same name. 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 the next two Sundays along with a little olive wood cross donated by my friend Cindee Re. To enter please share one of the daily If posts on social media (Facebook, Twitter or Instagram) with the tags #CalvaryLove and #If. Add a comment here on the blog post you share. Martha Hutcheson and Gina Weeks are the winners from week one and two.

Let’s meet at the foot of the cross together.

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If . . . then I know nothing. Sitting with Calvary Love. And a giveaway

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If when an answer I did not expect comes to a prayer which I truly believed I meant, I shrink back from it; if the burden my Lord asks me to bear be not the burden of my heart’s choice, and I fret inwardly and do not welcome His will, then I know nothing of Calvary love.

I am returning to posting If questions from Amy Carmichael’s powerful little book by the same name. 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 the next three Sundays and a little olive wood cross donated by my friend Cindee Re. To enter please share one of the daily If posts on social media (Facebook, Twitter or Instagram) with the tags #CalvaryLove and #If. Add a comment here on the blog post you share. The second winner will be chosen randomly from those participating after midnight tonight.

Let’s meet at the foot of the cross together.

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