Health. Chiari, Ehlers-Danlos, POTS, Mast Cell, PANS/PANDAS | Monica Kaye Snyder

Jul 16
2015

Do you See? Gauntlet Story Feast

by Monica

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

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.

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.

Jun 20
2015

I Said Yes. Gauntlet Story Feast. In Memory Of

by Monica

This post is late.

It is not written by a warrior but in memory of one.

I will never forget the first time I saw her striking beauty in the waiting room of Diagnostic Imaging in Lanham, Maryland. She was there with her equally lovely mother. She was wearing a classic tulip skirt and finely knit cardigan. She was tall and willowy with the most translucent skin, piercing eyes and perfect pixie cut. I waited for a long time. They were waiting too. I was finally called back. I had a brutal IV attempt for contrast, a painful CT scan and was sent out to wait some more for the tech to look at my images. I must have twitched during one of the pictures, because he let me know we needed to go back in to redo a few. I was crying. My arm was quickly turning all shades of purple. I saw these same colors in multiple bruises on the young girl’s long legs. They were the only outward sign there might be anything wrong with her at all. I glanced at her face. She was crying too. Our eyes met. We recognized the messy DNA in one another in an instant. We didn’t speak that day or introduce ourselves. Caught up in our own unfolding suffering we did not use an ounce of energy to form relationship or step into one another’s worlds. We did not need to. They were already overlapping in the venn diagram way the hearts and lives of each of us with these rare disorders are connected.

Much later, when I understood I needed ongoing plasmapheresis for my chronic autoimmune disorder, my dear friend Pam connected us online. I realized I “knew” her already.

Morgan Amanda Fritzlen.

Just as long as I have breath
I must answer yes to life
Though with pain I made my way
Still with hope I meet each day
If they ask what I did well
Tell them I said yes to life.
Just as long as vision lasts
I must answer yes to truth
In my dream and in my dark
Always that elusive spark
If they ask what I did well
Tell them I said yes to truth.
Just as long as my heart beats
I must answer yes to love
Disappointment pierced me through
Still I kept on loving you.
If they ask what I did best
Tell them I said yes to love.–Alicia S. Carpenter

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.

Jun 12
2015

Recapture My Heart

by Monica

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

Jun 11
2015

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

by Monica

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

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

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

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

Bringing Good Out Of Bad
By Delaney Jayne

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

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

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

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

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

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

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

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

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

About Delaney Jayne:

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

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

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

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

May 14
2015

An Inspiration. A Hero. Broken. Gauntlet Story Feast

by Monica

This week’s Gauntlet Story Feast writer, Sarrah, holds a very special place in my heart. I met her through a local friend who shares an EDS diagnosis and the same neurosurgeon. She attended high school with Sarrah, and they reconnected online while she was in Boston getting her master’s degree. This friend opened her home so Sarrah could have needed surgeries in Maryland and recover here. Sarrah’s bravery to leave her dream job and seek treatment blew me away. Her courage to take her recovery at face value, move by herself to Texas and jump back into her career inspires me even more. This piece shows the achingly honest truth about the brokenness we suffer.

An inspiration. A hero. Broken
By Sarrah Hannon

An inspiration. A hero.

I’ve been called these things many times by family and friends. They have observed the events of my life and the hurdles I’ve overcome. And because all they see is the outward appearance I’ve adopted of humor, self-assurance and smiles, they tell me this is who I am.

My story is not heroic. It is not inspiring. If I am supposed to be an example of how to live when you’re dealt a difficult life you can’t control, I worry for others like me.

“You’re just being modest,” you say. No, I’m just being honest.

What people cannot see is the every single day struggle. I’m not talking about the physical struggle. The physical struggle is impossibly difficult but you develop ways of managing it. And while the pain is unbearable and takes over your life, it is sadly not the most paralyzing obstacle. No, I’m talking about the mental and emotional struggle. The one that you think you have handled at the start of every day until you realize that you’re just lying to yourself. You end up having the same arguments in your head repeatedly, no matter how many times you’ve had them before. And yet each time you come to the same conclusion after arguing both sides of the story; your life has changed, you have changed. That realization feels like a fresh wound every single time.

Just a few years ago I would wake up each morning the minute my alarm sounded. I would bounce out of bed instantaneously and be ready for work in no time. I performed my job with the greatest of energy, producing more work than 4 people in half the time. My mind was moving a million miles a minute while I assessed and analyzed each facet of my job. After work I was going to classes, getting my masters degree. Pushing my mind even further. I loved it. I was invincible. “A force of nature,” as my dad used to call me in high school. My type A personality and OCD served me so very well. My energy was poured into applying my extensive knowledge or, outside of work, pushing my young body to new limits. I handled all of my adult responsibilities with ease; money, taxes, appointments, vacations, cleaning, etc…I had aches, pains, injuries and even serious surgeries, but they didn’t stop me. My spirit was stronger than my body.

Not anymore.

I’m a shell of that person. It takes me a solid twenty minutes after my second alarm goes off to just convince myself to drag my body out of bed every morning; not just because of the pain but because I no longer have that thirst for the day. My type A personality and OCD are now a mortal enemy to me. I struggle to keep up with my adult responsibilities because of the anxiety that grows inside of me. My mind still runs a million miles a minute, but it is filled with worries instead of analyses. I get anxious every time I receive mail from a hospital or doctor, to the point where I simply do not check my mailbox. I get anxious calling doctors to make new appointments, and that anxiety completely freezes me when I actually have to attend the appointment. Cleaning seems like a daunting task, not because it will take me time to do it, but because I know that it will lead to hours upon hours of rest afterwards to recover.

I am constantly running the figures in my head to determine just how much energy I can spend. Arguing with myself about the things I really would like to do versus what my body should actually be handling. I convince myself that my pain is justified, and this is not big scary go to the ER pain. Minutes later I’m in a puddle of tears, because I have also convinced myself I’m being a baby. Suck it up, Sarrah, you’re not that sick. Minutes after that I’m reassuring myself its okay to feel this way. I AM sick.

They tell you that your faulty collagen will cause your bones to be less dense, tendons and ligaments to stretch, digestive tissue to shred, and anything else that uses collagen as glue to fall apart. This breaking happens over time, all at once, and most of the time more than once. They give you surgeries and medicine to temporarily patch these things up. Each break comes with a barrage of doctors who know what to do or can at least come up with a plan.

What they don’t tell you is that it will also break your spirit. And only you can find a way to put those pieces back together. Only you can figure out how to navigate the inner turmoil of re-defining yourself. No doctors can help. There is no plan. Every time your fragile spirit shatters you’re forced to pick up the pieces and define yourself yet again. But how many times can you do this? How many different labels and definitions can you give yourself? How many different people can you try to be?

An inspiration. A hero.

These are labels.
The sign I wear today says

Broken.

About Sarrah:

Sarrah is a 28 year old forensic toxicologist. She has three degrees, in chemistry, forensic chemistry and a masters in forensic science. Sarrah is a self proclaimed gypsy girl, growing up in Ohio, then living in West Virginia, Boston and now Texas. She is living with Ehlers Danlos and a host of other conditions. Recently she had three spinal surgeries. In her free time she’s a fervent pit bull rescuer and advocate. Her boy Orfie is her savior.

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

May 13
2015

A Quote. A Poem. A Song. On Hope

by Monica

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

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

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

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

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

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

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

May 12
2015

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

by Monica

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

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

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

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

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

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

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

Photography by Cindee Snider Re. Used with permission.

May 10
2015

Mother Risk and Rest

by Monica

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

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

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

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

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

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

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

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

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

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

No mother risk at all.

Just rest.

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

May 7
2015

United We Stand Taller and Braver. Gauntlet Story Feast

by Monica

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

United We Stand Taller and Braver
By Sarah Fatherly

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

One gift stands out.

People.

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

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

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

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

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

With our suffering comes strength.

United we stand taller and braver.

About Sarah:

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

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

May 5
2015

Holding On. Letting It Go. And a giveaway

by Monica

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

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

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

Acceptance and maybe even hope are supposed to come next.

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

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

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

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

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

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

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

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

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

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

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

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

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