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

Nov 9
2015

Surrender Every Little Thing. And a super sparkly giveaway

by Monica

“When we search for significance out side of surrender to God, we create our own version of God’s plan for us, and it rarely measures up.”–Deidra Riggs, Every Little Thing, Making a World of Difference Right Where You Are

It’s been more than eight years since God asked me to give up a life I thought was “significant” and become a vessel of brokenness and suffering. Three years into the journey He told me to take my Isaac, our little Danica, and surrender her completely to Him as well. October, the month of Danica’s birth, and three years later, the month of her big brain decompression and fusion, is and will always be full of gratitude and celebration of miracles and provision tempered with remembered grief and pain. My heart breaks and is healed over and over again on these and other personal anniversaries tattooed forever in my calendar brain. After twenty-one surgeries of my own there is not a safe month or even a week anymore.

I’ve seen the ram in the thicket. In every possible and literal way God has been our “Jehovah-Jireh.” He gave us the miracle healing of Danica. He showed up financially at every turn to give access to the specialized care Danica and I both needed. He gave me a clear diagnosis after years of mental and physical anguish. He moved mountains to get doctors near and far to be willing to take the risk to treat me. He’s surrounded us with the kind of love and support I never believed possible, and it hasn’t stopped.

I’ve been told by beautiful, nose wiping, carpooling, snack bringing, essential oil using moms they are in awe of our “story.” They say God has used it in their own hearts and homes to garner more gratitude for their everyday. I’ve mostly prayed God would use this hard He’s written for me however He deems to bring Himself glory, but on the worst days I feel sad and even a little mad when my nothing like I dreamed of life is a springboard for someone else’s comparative thankfulness. I want goldfish in my car seats and play dates and sleepovers at my house. I want to be cheering my daughter on at her volleyball games and to sit in the front row at her orchestra concert. I want to volunteer as a classroom helper and listen to second graders recite their Scripture verses. I want to go on even one field trip with my girl. I want a drop of frankincense diffused to somehow make me more well. I want to be tired from something other than trying to survive. I want to be tired from living. It’s not because I don’t think this struggle could matter. It’s because this isn’t what I wanted at all. None of it. I squirm at any romanticized version of the pain going on over here. It is brutal. It is one crisis to the next, and I know in my heart the supernatural healing God gave my girl is not what He has written for me at all. Until heaven I will be some measure of broken. Every day I wake up wanting something different and “better” for myself and my family. Every day I find my way back to the foot of the cross and remember even this is Grace. Every day I am called to surrender.

Deidra writes,

“Surrender to the work of the Holy Spirit and you will come alive. Exhale, and you will live. When you have spent it all and left it on the track, when you are left in silence and someone else runs all the red lights on your behalf, when you are at the end of yourself and you can barely remember the difference between up and down, choose to breathe. It is our direct reminder of the Holy Spirit at work in this world and on our behalf. It is our immediate reminder that God is always reaching toward us and lifting us to himself to breathe life into our long reach for a life that matters for something.

Breathe.

God will meet you there and receive your one, beautiful, miraculous breath as an act of worship and as a surrender of yourself into his purpose for your life.”

Much of my life is now lived in this Jacobean tapestry chair I like to call my “nest.” I am here in the early morning with numb feet, aching head and joints and too tight heart to sip the coffee my husband brings me, shake off my night time meds and snuggle my littlest. I find a Psalm here. I study here. I pray here. I write pen to paper to my family, my friends and even strangers here. I write for you to read and mostly for no one to read in this place. I am here on the computer and phone tending to a territory of people needing encouragement and prayer and light on their own difficult walks. I am sitting here when people come to visit and sink into the comfort and peace of my yellow sofa with a throw. I listen here. I am here juggling a calendar of appointments and treatment and surgeries. I am here when the bill collectors call and call and call again. I am here when I balance our checkbook and always find there is Dayenu, enough. More than enough. I am here when my girls are dropped off from school on days I cannot drive. My legs always wrapped in a blanket and dozens of books and journals and paper and pens stacked around me like a fortress. Beside me is my little dog, Twixie. She is faithfully here. I cry here. I cry a lot. I find myself back here in the dead of night when everyone else is sleeping soundly. My pain brings me to this place I’ve chosen over bed, as if being upright even on the worst days and nights will make me feel less worthless and more productive. I refuse to waste this. I plead with God to not let me waste this. Make this count. Please God. For You. I struggle here. I resist. I think there is no way this is where God could use me best, so I beat His chest and beg for something different. Anything different. I hold my breath here like a temper tantrum toddler. When I am almost unconscious from the display of lack of trust He gently helps me see my here and now, this time, this place, this body, this life, this chair is exactly where I will find my significance. He causes me to surrender EVERY LITTLE THING, and I inhale Grace and exhale praise, and I believe.

I turned forty years old last Thursday. An unplanned brain shunt revision in Maryland just a week before left my family and I weary and worn again. Surrender. I had to cancel a week long writing retreat on Lake Michigan I was sure He wanted for me and for Gauntlet. Surrender. I humbled myself to receive help once again from others to make my surgery possible. Surrender. Friday night my dear friend Janet and her husband along with my sister threw me the most fabulous birthday party ever. Janet made a toast and mentioned the illustrious “forty before forty” list I’d made and how many of those things I’d longed to accomplish were left unrealized. She then pointed out the almost forty people gathered together in celebration. They were in fact my true and important life work. I gasped at the beauty of this realization. Most of these relationships have been formed and nurtured and grown from this chair.

I am entering a new year of life and a new decade with a heart humbled. I trust you, God. I do. I know there will be moments and hours and days I will struggle, but I surrender EVERY LITTLE THING to you. I will inhale your Grace and exhale praise. I will believe this life in this chair matters in your kingdom and counts. My Hope remains.

Second only to words gifts are a crazy loud love language of mine. I’m so excited to invite you to join me in celebrating the launch of Deidra’s book with some awesome gifts! The winner will receive a gift set which includes a copy of Every Little Thing: Making a World of Difference Right Where You Are along with an Everlasting Light Shine necklace from DaySpring!

Here’s how to enter:

1. Share this post on social media to give your friends a chance to win this amazing book and super sparkly necklace. Maybe they will turn around and gift it to you!

2. Please leave a comment here about a way God has asked you to surrender your ideas of significance and give in to His greater plan for your life and let me know where you shared.

3. Totally optional but highly recommended is to head over to Deidra’s place and subscribe to her blog Jumping Tandem. I had the honor of meeting her at The High calling retreat last November and have been truly blessed by her writing and her life.

A winner will be randomly chosen from all the entries on Sunday night, November 15th, and announced Monday morning!

Oct 1
2015

Keep Moving. Just Five Minutes. Gauntlet Story Feast

by Monica

This week’s story comes from an EDS warrior who is passionately committed to awareness and empowerment in our community. I have to be honest, when I first read her story I hesitated. I personally have a hard time maintaining any type of physical exercise. No matter how many times I try to head back to the gym or even do daily walks and basic yoga and stretching I end up looser and in a flare. It is only since my recent surgery and beginning dry needling with an amazing physical therapist I have begun to understand why I am failing. Like everything else in my life my adrenaline tricks me into pushing myself way beyond my limits. Forty-five minutes is too much. Every day is too much if I’m not listening to my body. Kendra’s story began to resonate. Just five minutes. My PT added wisdom by giving me a simple formula of green light, yellow light, red light when doing simple stretching and resistance exercises. I had an “aha” moment. What if I could do “just five minutes” three times a day. I am thrilled to say I have lost weight, am stronger and feel better. When my tendency is to curl up into a ball I may need to stretch it out and breathe. I hope this story encourages you in your journey. Please take time to check out Kendra’s resources at the bottom of her story. She really is amazing.

Keep Moving. Just Five Minutes
By Kendra Neilsen Myles

I’m still searching for the perfect chair, position or anything that helps me tolerate sitting and working, even for five whole minutes. I do have a treadmill desk, but it’s too low and causes mid and upper back pain to flare also. When I am working, I do this constant dance between strange yoga positions while sitting, kneeling on a beanbag cube, or stretching while sitting and trying to work. You will never catch me sitting too long anyway, unless I’m surrounded by beautiful blue water, laying in the warm sun and have a frozen cocktail in my hand. That’s pretty much the only time I will drink more than a few sips of alcohol also.

Movement keeps me going. It’s momentum that helps me manage chronic fatigue and it is my biggest coping mechanism for chronic pain. I’m not talking about working out, I’m talking about the fact that I hardly stop moving unless I have to. I’ve never been someone who sits on a couch and watches TV or lays in bed. Laying in bed has its own fair share of issues. No matter what, I am constantly shifting positions – seated, standing, or laying down. I don’t think I’ve ever slept through the night, even as kid. I’ve always dealt with some kind of pain.

Being in constant movement, allows for me to shift positions all of the time. If I have to stand in one place for a minute or two, I start doing ballet exercises in place – i.e. heel lifts, first position ballet glut squeezes, etc. I move a lot even sitting or laying down, and I take any opportunity to engage and work my muscles. Doing so has always helped take the pain away, even for a second or two. However, all my little tricks and coping mechanisms prove nearly impossible when having to sit in a car for many hours. Read below:

I will be completely honest when I say that long car rides are the bane of my existence. Now I know why my husband was totally cool flying me to Florida after the EDNF conference, instead of me driving with him and the kids. I’m guessing that I’m not so fun to be around when I’m in so much pain. I have been known to start pounding on my legs, in order to help diffuse where and why I have the pain in the first place.

Car yoga – a safe stretch for me. No different from if I had my legs straight in front of me. Knees aren’t hyperextended.

The pain is excruciating and the muscles spasms that I get from sitting too long are horrendous. I try to work my muscles as much as I can in the car and when we stop, but it’s always such a hard cycle for me to get out of, once my legs have been cramped, or I’ve sat too long. The spasms become so tight and strong, that I can barely hold a squat (ie. In a public restroom), before my legs feel like they are going to collapse from fatigue. The fatigue is from my muscles constantly working so hard. When this happens, I am always reminded exactly why working out & staying mobile throughout the day is so important. If I wasn’t as active as I am, this is how my body would feel all of the time. I usually have constant muscles spasms and contractures in some places, but staying active and keeping my muscles strong, helps them not have to work so hard all of the time. However, sitting is a different story for me. Standing is a bit more bearable, because I can do ballet exercises while standing or modified squats, but sitting for extended periods of time is awful.

When I sit for too long, in a car or at a desk, all the little accessory muscles around my hips, pelvis and lower back, don’t have the rest of my body or the larger muscles of my lower half to help stabilize my pelvis and lower spine. Having a Hypermobile pelvis with a sacrum that constantly slips out-of-place (I usually pop it back in by contacting my gluts), bursitis in each hip, tethered cord, lordosis in my lower spine and issues with arthritis and degenerative discs in my lumbar spine (yes, this is just my mid-lower part of my body. Does not include other areas and issues there), doesn’t help one bit.

Why am I saying all of this when I usually don’t discuss my issues publicly? Because this is life with EDS. It’s real. I have my own fair share of daily struggles, but I’ve chosen to not focus on them. Doing so has never helped me in any way and always makes me feel worse. Leg pain is by far one of my most challenging issues. It makes me want to punch a wall. And I don’t really ever feel anger like that, but I do when the pain is this bad.

So, here’s what I’m going to do, because I really don’t feel like working out. I have to and need to — this is why I pick something small to do & I do it for “Just 5 Minutes.” Just five minutes is my own rule for myself to get me going when I’m not motivated or I’m in pain. It’s tangible, measurable and anyone can do something for just five minutes. It holds me accountable to myself for the promise I made years ago, so I wouldn’t end-up bed-bound, unable to walk and in constant pain like my Gram. My mom was on a similar path, but for different reasons. I knew as a kid that if I didn’t change my mindset, I would eventually become what was around me, because that’s all I really knew and all I saw.

I also know now that this is par for the course – part of the roller coaster of living with EDS. I’ve been here before, thousands of times and it gets better, because I’ve learned what I need to do and what I do not need to do. I also don’t freak out and think this is it, my body is falling apart and EDS sucks. EDS is hard, but harboring negativity only causes more physical pain and that is a proven scientific fact.

I’ve also learned that as much as I want to stretch (not too far, but I did stretch some bc it helps relieve pain temporarily for me), it doesn’t help me when my muscles in such tight contractures.

For my Just five minutes today, I’m going to do an online Pilates video and barre video. I’m also going to use my foam roller and trigger point balls to help relieve knots, as well as do a little yoga for my IG challenges. And if needed, I will take something to help me get through the night. That’s what the medicine is for – times like this and once I’ve done all that I can to help myself.

Then tomorrow, I will get up and go about my day like normal. However, I probably will head to Zengo to cycle the crap out of my legs.

Please read the disclaimer here. My way isn’t the right way for everyone and I’m not stating that these stretches are advised. Performing safe stretches is one of the ways that I’ve learned how to cope with severe chronic leg pain and it works for me. However, that does not mean it will help or is right for you. We are all different. Please seek the advice from your physical therapist or physician, before performing stretches that you have been advised against or have not done in quite some time. Attempting any of the stretches seen in the pictures included in this post, is done at your own risk.

About Kendra: http://strengthflexibilityhealtheds.com/kendra-neilsen-myles/

Facebook: https://www.facebook.com/Kendra.Neilsen.Myles
Instagram: @SFHEDS & @EDSPatientSolutions
Pinterest: @EDSPatientSol
Tumblr: Actvfaith3/StrengthFlexiblityHealthEDS
Twitter: @SFHEDS, @KNMyles, @EDSPatientsol & @StrengthStories

Or, visit sfheds.com for the latest on living a healthy and active life with EDS.

Other projects:
– Wellapalooza 2015 is here! Integrative Health & Wellness Conferences for patients with chronic and invisible illnesses: http://www.wellapalooza.com
– Moving Naturally with Hypermobility seminars: http://movingnaturallywithhypermobility.com/
– 2nd Annual “EDS Ride for A Cause” on November 15th, 2015 at Zengo Cycle in Bethesda, MD: https://www.facebook.com/events/814063915305731/ **All proceeds benefits EDNF**

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.

Sep 10
2015

In Everything You Do. Choose Life. Gauntlet Story Feast

by Monica

I have a beautiful new Gauntlet Story Feast story to share with you, but I haven’t quite finished getting it all together. My facebook memories brought up this quick post I made a year ago today on Team Danica. It left me in a puddle of tears. There is no way to number the minutes, the hours or the days when I have had to consciously choose life. It’s only by His Grace I’ve continued to say “Yes”.

Whatever you are facing today. Keep saying “Yes.”

“This day I call the heavens and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, that you and your children may live.” –Deuteronomy 30:19

This goes out tonight to every one of my warrior friends. We know what it is like to literally contemplate the choice with every dawn. How will we see this suffering, our own and that of our children today? Will we be paralyzed in the curses or move in the strength of the blessings towards the light and grace of this life . . . our life, the lives of our spouses and sons and daughters, our parents and sisters and brothers and friends???

CHOOSE LIFE.

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.

Sep 6
2015

If I Leave? Why I’m Going Away

by Monica

I’m sitting here in bed with a blinking cursor pushing me to keep adding words to this sentence, this paragraph and this post. I have six windows open on my laptop. My email, Facebook, Twitter, Pinterest, Instagram and WordPress are all places I share community. They are good. The relationships I’ve made and sustained on the web keep me from feeling isolated in my mostly home bound life. I connect with beautiful TRUTH here. I learn your stories. I watch your lives unfold for the glory of God. I share in your pain and struggles, and I pray for you. I celebrate your victories and accomplishments. I also channel my online life into real life with paper to pen, care packages and, if you live close enough, by inviting you to rest awhile on my yellow sofa to know and be known by me. I schedule phone dates with far away friends and even strangers who need pieces of my story to take the next step in their own. When I am not doing these things I am managing my own health care, wrestling with insurance and debt collectors and getting treatment. These things fill my days until my children and husband come home. I try to pour into them what I have left which is often the least of me. Every night I swallow five crazy pills supposed to slow down my brain and my body enough to rest, but I fall into bed with a racing mind and bursting heart. I make lists in my head or on scratch paper on my nightstand in the dark. I am overwhelmed by all the people I need to pray for. I am wanting to remember your birthday or send you a note of encouragement, because it might be the only real mail you get in your hard this week. My life is full because of this screen. I am grateful for it. I also know it is time to step away.

Something bred out of this culture of continuous sharing is the absolute inability to believe the world can and will go on without our input. We don’t know how to do real retreat. We don’t know how to stop the whispering or the shouting long enough to decide who and what we really are without it. I see this as blatantly in the Christian community as I do in secular media. Those of us who write are particularly prone to feeling we must keep our words out here. Isn’t that why God gave us the gift? I have been blogging since 2008, and it has been one of the most beautiful and challenging things I’ve done in my life. I’ve told truth here I would have never been brave enough to bare in any other place. This has wrecked me and healed me. The hundreds of people from around the globe who joined our Team Danica journey encouraged me to know people are hungry for community, and we are all more the same than we are different. My blog and social media gathered an army of prayer warriors for us. It became a place we humbly made our great need known and where God chose to meet much of it. I am grateful for it. I also know it is time to step away.

My heart aches to have been writing and submitting a book for publication before all this. I wish I could tell my story, birth it and give it away. No build up. No platform. No marketing plan or commerce. Just a year and a half of heart work poured onto pages. God, do with them what you will. Take my name off. He is the author. I am merely a character in this narrative of redemption. I’ve been told I am naive. I’ve been asked if this desire is driven by fear of failure. I’ve been asked if I want to be a writer or if I just have this one amazing miraculous tale to tell. Publishers don’t just want one good book. They want to know if you have another and are worth the investment they make in you. I wrestle with the deep threads of faith in my book making it a book only Christians will buy. Do I really want to shine my light into an already lit room. If not, do I pull a few golden stitches out and hope the Jesus shines through the strength of the story itself? I’m asked to focus on my target audience. Is it people who have suffered and are suffering? Is it my ever growing community of EDS and Chiari people who hurt exactly like I do? Or is this a story about finding gifts no matter what your gauntlet making it a book for almost anyone, because none of us are immune to the struggle?

If you’ve been reading here you know I had my twentieth surgery and seventh neurosurgery on June 24th. I never wanted this “new” blog to be focused on my continued pain, treatment or disability and especially not about our ever growing need for support. This is why I’ve been very quiet. Here’s the rub. This is my life. I spent the first eight weeks of my recovery without words. It scared me. I cried more than I have ever cried in my life, sometimes hours at a time. The loss of range of motion in my neck and the new normal I was facing terrified me. The pain from having skin and muscle and nerve cut down my head and spine for the third time in the same place was driving me into despair. I wanted to quit, and I felt the story I’ve labored over was a farce, because I couldn’t see a gift anywhere. At the bottom of the valley I had my finger on “delete.” God stopped me.

I cannot answer many of the questions I’ve asked above. I do know God is asking me to be quiet, pull away from ALL this here and focus completely on what I know for sure He called me to do. This means saying no to people in all kinds of ways. This means my children and husband will lose even more of me as I set my jaw like flint to finish this work. This means I have to believe my presence in your life on this screen is not necessary for a period of time and trust God to bring you other encouragement. This means I’m asking you to respect the absence but promise me you will be here when I return, because I will miss you all, and I need you too.

I remember a poem written by L.L. Barkat in her precious book “God in the Yard.” I found it quickly tonight as I pulled my well worn copy from the shelf. I had forgotten she wrote it for Ann Voskamp. I wondered if Ann was feeling these same struggles as she poured herself into her first book. I will leave you with it tonight.

Stayed: for Ann Voskamp

Why do we not
leave home.
Is it really for fear
of what lies
beyond, or rather
for fear that the
roof will abscond
with the doors
and the shutters
we’ve always known.
And who would they
blame if it happened
just so, if the whole
curtained place simply
picked up its stakes,
disappeared on the wind
in our absence. What
are we really afraid
of, why do we not
leave home.

I will be gone literally as much as figuratively over the next two months. I leave a week from today for a trip to Maryland for a scan and fusion check up with my neurosurgeon. I plan to head further south to the Virginia valley I love between the Blue Ridge to see my Angie after this. God has provided for me to take an overnight trip with dear girlfriends, a very long weekend at the beach with one of my most faithful five and an entire week of writing on Lake Michigan as I finish out my thirty-ninth year of life. Will you please pray for me physically as I continue to heal and learn how to live once again with new challenges? Will you please pray for the decisions I have to make about further PANDAS/AE treatment? I have decided not to continue chemo or add long term steroids, the next suggested steps from my physician, until my symptoms become unbearable and dangerous again. Will you please pray for God to provide for our family as He always has and for us to live this manna life with great joy. Will you pray over the words I am committing to write as I finish “Gauntlet with a Gift” and for God to make clear the path where it should land for His glory? I humbly thank you for taking these things to our God who already knows what we need and still beautifully invites us to enter in by asking.

(I will continue to publish Thursday’s Gauntlet Story Feast here, because your stories are important and are one of the main reasons the book was conceived. I have made commitments to several author friends to help launch and promote their own soul work, and I will be showing up, because their books are changing me, and I want you to read them and be changed too. Besides these things I will be quiet. If you truly need me I will check email and messenger daily.)

Aug 27
2015

Howard Hughes and Things I’m Missing. Gauntlet Story Feast

by Monica

This is a repost from December 2011 following my first neurosurgery. I’ve been trying to write something about my recovery from this most recent fusion, my seventh neurosurgery in four years. I am dealing with more disability, or as my counselor says, “different ability,” than ever. I have adaptive equipment to help me put my socks and pants on. I am thirty-nine years old, and the fusion I have now will not heal into a better place. I am stuck. The grief. The loss. The crying. It has been very difficult to write about. As many time as I’ve born my heart to you here, I feel like this is the ugliest thing I could show you. It’s important because it’s true. I know people read this blog for many reasons, but my target audience are people like me. They already know there are two sides to this journey. They know you can Hope in razor sharp suffering because it is our only option if we want to live.

This is a more humorous post about things we deal with in the Gauntlet. I hope you get a giggle. I also hope if you can showered without pain and dressed yourself today you feel a little more gratitude for simple independent things you may take for granted. If you are sitting in traffic or picking up your children from school in the annoying car rider line I hope you say Grace. If you can get groceries or clean your toilets try to be thankful. These things are lost to me, and I’d give almost anything to reclaim them.

Howard Hughes and Things I’m Missing
By Monica Kaye Snyder

I think I’m maybe just a little grumpy today. I figure I’m entitled to have a day or two when the barometric pressure reminds me this surgery is not a total fix for the complex medical issues I have, some of which will be a life long struggle for me, and I still just let myself go to a discouraged place for a little while. I’ve been trying to hard to focus on all the amazing positive gifts God has given and the healing. If I’m totally honest, I’ve even been playing the Pollyanna “glad game” to try and keep my mind/body connection moving in a forward direction.

I woke up this morning to cold rain and my head hurts. Thank goodness, it’s nothing like before, but still really bad, especially where those crazy screws were in the top. I think I’m still miffed I just never realized they were going to screw my head to something. How could I not have known that? My joints hurt. This is my EDS. I cannot be cured of this or even have it “fixed” in some way by a surgery. I will see the geneticist in Cincinnati in February to discuss management and possible treatments to help me deal with this ongoing pain. But realistically it’s just something God has asked me to do. Much of the widespread pain I had before my recent surgery has resolved, especially the neck and shoulder pain which was unbearable and crippling. I was cautiously optimistic because of all the drugs I have been taking. As I have been working on dialing back the medication this week, I still feel so much better overall than I have in years. This is good. Very good.

I think it’s the annoying little things about my recovery and new “disabilities” that I’m finding hardest to cope with and maybe just a little bit of loneliness for my husband and my kids and my space. Yes, I even miss my basement home and “bomb shelter” bedroom over this gorgeous light filled space, because it’s where my people are.

I thought I’d make a little list of things I miss. Maybe it will help ME to appreciate them if and when I ever get them back but maybe just maybe it will make YOU feel more sane and more grateful today and even make you laugh a little which is the best medicine, right?

1. Shaving. This is not a random choice for number one. I have not been able to shave since the morning of my surgery. I am Howard Hughes in sooo many ways and hair removal tops my list of OCD issues. I cannot in any way move my neck and head and body to shave. Last week when Dan was coming for date night I thought I would at least try to shave my armpits. To my horror I realized I cannot look over to the right and left enough to even see them. This is a problem, people. short of beginning a fund for laser hair removal or finding a stranger to come wax me periodically because a friendship would clearly be ended over this kind of interaction, I am in trouble. BIG trouble. I spend a lot of time thinking about how to solve this problem . . . SOON.

2. Tweezing. In the same vein, but also a critical part of my hygiene, I tweeze daily. I tweeze my eyebrows and any random facial hair and my one genetic chin whisker that pops out without warning. Again, I cannot move my face or head or hold a hand mirror or in any real way get this properly accomplished. It is making me crazy! At home I would climb up on our bathroom sink criss cross applesauce and tweeze. My husband and kids know if mom’s in the bathroom for more than a half a minute and if the door is locked this is my “me” time. One of my requests to Dan if I ever become a “vegetable” is please, oh please, have someone come and tweeze me. Last night I even forgot I cannot look down at my own body and see my own boobs. I was worried. Don’t worry, I don’t have “hairy” boobs, but you know how every once in awhile there is a hair that appears and needs to immediately be taken care of. It’s something women in our culture don’t just do. We take it seriously. We don’t speak of it even amongst ourselves, but it has to be done to keep the civilized world running. Well, I’ve outed us. Things are spinning out of control.

3. Caring for my feet and toenails, oh and clothes. I should have gone for a pedicure before surgery. It’s not like I could really even hold my head up or felt well enough to care but now I do. I would ask someone to drive me to get one this second. I would spend money to have someone else fix these rough feet with nails too long and polish grown out except for the above mentioned issue of unshaved legs. I would be too embarrassed to have anyone near my feet and legs to let them do my toes. Add on to this not wearing anything besides sweats and pajamas, ugly flat shoes and a pony tail for months and a self image problem emerges. Yes, I am so much more than clothes and hair and toenails too, but I’m the classic beauty, right? For years I have worn timeless clothes and beautiful scarves and simple jewelry which everyone wondered how I could afford when the truth is I probably bought them at least five years ago when I could afford them, but they are gorgeous still because they are classics. I haven’t bought real clothes in a very long time. I really want to be pretty again, not in the vain sense but in the “her clothing is fine linen and purple” way. Oh, and I bet that virtuous women had trim feet. I’m just saying.

4. Driving. I drove very little for months before my surgery because I had passed out a few times and frankly after seeing the 3DCT of what my neck looked like when I turned to the right or the left I realized I was most likely putting my own life and the lives of others in danger by continuing to drive. Not to mention I could barely get out of bed anyway, and we only have one vehicle. I have been home bound for so long you would think this would be further down the list but I REALLY miss being able to go putz for an hour at Marshalls or go to the grocery store and pick out what I want to eat. I’m so tired of wasting so much time browsing online sites for little Christmas stocking gifts I could just get at Walgreens if I could only go there. I wish I could pick Delaney up from school or take Danica to Chic-fil-A. I’ve had my driver’s license since the day I turned 16, and I have always associated driving with freedom and the ability to escape any situation when I need to but also make something happen when I want to. These things are gone now. I do not know when I will be allowed to drive again or how easily I will be able to with my new “range of motion.” I think about it a lot. If I get special big new “old lady” mirrors don’t laugh.

5. Drinking. drinking alcohol is a Christian liberty issue I’m in no way prepared to address here and certainly don’t want to get private emails or facebook messages about it. If I cause you to stumble dear brother or sister, I am sorry, and we can address that in a different forum. Technically it has been months since I’ve had anything to drink so it’s a non issue right now. That being said, oh how I miss having a glass of red wine. It makes me almost cry. Anyone who knows me well knows I always had at least a split in the fridge because at any moment something might need to be celebrated. Life and champagne are friends that must hold hands often. I really want to “Cheers!” something soon.

6. Cleaning. This is a little sick but then again if you’ve read this far you get the picture. I am desperate to clean something. It really hurts me to want to do this so badly and truly be physically unable. Now that I’ve been living here two weeks I’ve figured out how to swiffer the hard woods for “exercise” to avoid blood clots and yes, may empty my bathroom trashcan EVERY morning, but I want to vacuum and dust and clean my toilet, and I can’t. My own family has been taunting me about how they are living the life over there. Delaney tells me, “Dad let us make a big fort of blankets and pillows and animals and then we just went to bed and LEFT IT THERE.”

7. Tucking my girls in. Listen, all this other “coo coo for cocoa puffs” stuff aside, if you get to be there every night to tell your kids you love them, sing to them, read to them and tuck them in knowing they will be the first thing you’ll see in the morning, thank God. Don’t rush through it no matter how tired you are. In all my years of illness and pain this is the one thing I always pushed myself to do. It is the thing my girls are sure of. It’s the thing I will do long past when they want me to and the thing I’ll cry about every night after they leave for college or whatever else God might take them away from me to do. I snuggle in and talk to them and ask them questions about what made them happy or sad that day and we pray and we pick a sleep playlist, and I stroke their hair or rub their back, and they know, they know without a doubt, they are loved and safe and no matter what it’s going to be alright.

And you thought I wasn’t going to make you cry today!

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.

Aug 25
2015

Calm Seas. Raging Storms. Father Love

by Monica

“For I know that the Lord is great, and that our Lord is above all gods.
Whatever the Lord pleases, he does, in heaven and on earth, in the seas and all the deeps.
He it is who makes the clouds rise at the end of the earth,
Who makes lightnings for the rain and brings forth the wind from his storehouses.”–Psalm 135:7

It was the first morning of worship at Laity Lodge during The High Calling retreat last November. Laura Boggess read aloud Mark 4:34-39 in the contemplative style called Lectio Divina. The soft lilt of her voice with a slight West Virginia dialect slowed my breathing and focused my mind on the syllables of a well known story as they rolled off her tongue.

That day when evening came, he said to his disciples, ‘Let us go over to the other side.’ Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, ‘Teacher, don’t you care if we drown?’ He got up, rebuked the wind and said to the waves, ‘Quiet! Be still!’ Then the wind died down and it was completely calm. He said to his disciples, ‘Why are you so afraid? Do you still have no faith?’ They were terrified and asked each other, ‘Who is this? Even the wind and the waves obey him!’

(I cannot confirm through research or otherwise what version of the Bible Laura read from. I know it was not exactly what is above, a direct quote from the New International Version, but the words below are identical to what I journaled in my bright green Moleskine during contemplation.)

*Leaving the world behind
*Just as He was
*Asleep on a pillow
*Peace
*Be still
*Completely calm
*Why are you so afraid?
*Faith
*Who is this?

It was June, 2009 when we last saw the shores of the Atlantic. Delaney was six. Danica was eighteen months. A few weeks before leaving we realized something was horribly wrong with our baby, but the trip had long been planned. We went anyway. I will never forget how each mile of Route 12 seemed like one hundred as Danica screamed in agony in her car seat. Every single photo from our week shows Danica with a crooked head and neck wincing in pain and confusion. Through the years we have begged God to redeem that trip to Corolla in His time. He did this through the love of dear ones who have carefully watched our struggle and wanted to make some kind of respite happen for us all in a place we longed for and needed to return to.

The last week of May God made a way for my family and I to literally and figuratively “go over to the other side.” We left this life behind and took a real vacation to the Outer Banks of North Carolina. Our time was sacred in every way. The seven days we spent together were our happiest in at least six years.

The week was peace.
The week was still.
The week was completely calm.

We didn’t speak much about the trip before leaving. Our plans have a way of tragically falling through. Those who knew said things like, “You guys deserve this.” I would squirm. I know too much. I read too much. I pray too much. My heart touches too many lives that suffer and break without even a hope of a beach vacation. I never once thought this was anything but pure gift.

This is what Grace feels like. This is what Grace looks like. This is what Grace lives like.

My June surgery was all scheduled. We knew this week was in all reality the sum total of our summer fun. I spent the days taking continuous amounts of medications to fight the pain and feel the best I could to enjoy my family. I am always more well in the sun. I am always more well near water. I am always more well away from Ohio. I made a conscious effort to not even once say to my husband or children, “I have a headache.” I didn’t tell them about losing feeling in my fingers or my hands and feet going numb. I wanted our time to be about who we might be. I wanted it to be about who Dan and Delaney remember I once was. I wanted to know somewhere deep down inside I had the capacity to taste and see unfiltered good. There were minutes and even hours of this kind of clarity. It fueled our hope. For too long it has been deferred and made all of our hearts sick.

During our time we didn’t have a drop of rain. The seas were calm. The temperature perfect. It was like the great big God of the universe, our Father God, planned the weather for just us. We were sleeping on a pillow in the stern of the boat. We were resting. We had no idea here in Ohio there were several huge storms including high winds, hard rains and strikes of lightening. The same God who gave us peace also allowed a huge bolt of lightening to hit a very old and tall tree behind our home and split it down the middle. It did not just fall. The water inside the tree conducted the electricity and caused a bomb of sorts. It’s hard to explain unless you’ve seen something like it. It threw shrapnel chunks of the tree from the woods behind our home over our house and plunged deep into the front yard. One strike and the tree exploded. It was Tuesday night of our week away.

My father was coming by daily to check on our house and check the mail. When he arrived Wednesday afternoon our neighbor came running out to explain the war zone and show him the worst of it. Half of the tree split down the middle was hanging over their fence, into their yard, threatening their home. Another storm would most likely cause great damage to their property. He didn’t call us. He didn’t text us. He got on the phone with homeowners insurance and determined because our home wasn’t damaged they would not cover anything. He called several tree companies. A few would not even take the job. The position of the tree and the almost impossible way you could access it with necessary machinery would make the job a financial loss and risk. Finally he found someone to bring a crane up our neighbor’s driveway into our yard and do the difficult job of taking down the entire tree to the stump.

As we flew back into Cleveland Saturday night we hit lightening and bumpy storm clouds. We drove home in torrential rain. I held my head filling with pressure and pain and cried. I was thinking, “God, don’t you care if I drown?” I can’t live here. I can’t do this. Sunday morning Dan went out to try to mow our grass in between bursts of showers. He came in and told me in the most serious tone, “Someone stole one of our big trees while we were gone.” I laughed and explained how ridiculous that was. He then began to worry something bad had happened, and we would get some crazy invoice for it. I told him to go knock on the neighbors door and just ask them. He came back with a story I could hardly believe. My parents texted that morning asking if they could stop by after church. The photos and videos my dad showed us were astonishing. When we found out how much it cost to take care of the situation we went numb. $2800. I felt like throwing up.

Over the next day or so I looked up all the verses I could about lightening. God could have made that lightening strike any tree. We have a dead tree that is threatening our home, and we haven’t had the money to have it cut down. Why not that tree, Lord? What purpose did this storm have in our lives, my father’s life and the lives of our neighbors? I then thought of the passage from Mark. I reflected on the great love of my earthly father showing discernment and love by not calling us at all. He stepped in and took care of the disaster knowing we needed to rest. He paid the price knowing we did not have $2800. He loves us so much he did this sacrificial thing that pointed us to Jesus. At the very same time our Heavenly Father calmed the literal seas. He gave us peace. He reminded us who He is.

Today is my earthly daddy’s birthday. I celebrate him in new ways each year. Our relationship grows more pure as we both get deeper in our walks with God. I realize how very like him I am. When I look back across the landscape of our Gauntlet years I am brought to my knees remembering the countless ways he and my mother have done everything they could to love us and support us. We have come to trust them with our hearts and our storms. My father will do anything he can to calm the seas for me. He counts my husband as a son. He loves my daughters perhaps even more than he can love me, because that’s what love on top of love does. Most of all he points me to my abba God.

Calm seas.
Raging storms.
Father love.

All Grace.

Aug 20
2015

The Light Around Me. Gauntlet Story Feast

by Monica

This week’s Gauntlet story is written by a young woman who shines her light and the light of Jesus through her own deep pain. I’ve learned to move from the shadows of fear and despair into glistening hope by watching her faith endure. In our community of suffering we band together and whisper to one another,

“Don’t be downcast, soon the night will come,
When we can see the cool moon laughing in secret
Over the faint countryside,
And we rest, hand in hand.
Don’t be downcast, the time will soon come
When we can have rest. Our small crosses will stand
On the bright edge of the road together,
And rain fall, and snow fall,
And the winds come and go.
And so we seek the light, my Friend,
Silken threads glinting in the gloaming,
Woven into heartbeat, breath and tear,
Sweet Jesus, always, ever near.”–Herman Hesse

The Light Around Me
By Emily Dreyer

I woke at 2am with the left side of my spine, shoulder, and neck on fire. As I lay awake praying for the pain to calm, all my thoughts, doubts, and fears kept running themselves through my mind over and over again. Like some kind of horror movie that just won’t stop repeating itself, all I could feel and see was the pain of it all. I’ve found that even if you seem sane the day before, when it’s just you and your thoughts in the middle of the night it quickly becomes easy to question your sanity. Yet as I lay there I found my eyes were fixed on the cluster of glow-in-the-dark stars that I had stuck on my bedroom ceiling years ago. I couldn’t help but think about (as the saying goes) how “the darker the night the brighter the stars”. As I began to ponder this, I began to think about light and darkness. How does one stop the day from becoming night? How does one chase the shadows back into light? I do not know, and oh, how I wish I did. And though there may not be a way to remove myself from the darkness around me…I can still see the light.

I can see light reflecting off of my friends, the people I love. I can see the light shining through others even when they themselves cannot see it. I can see it struggling through a suffering friend who puts one foot in front of the other just to get through each day. I can see it radiating from another beloved soul even as she sits in the ICU while her daughter is in a coma nearby. I can see it shining off of a mom who can hardly take care of herself yet gives all of herself to care for her children. I can see it in the eyes of one who lost a child way too young after years of fighting for her life. I can see it through the smile of a doctor who is exhausted and discouraged yet who continues to fight. I can see the light all around.

What about when I can’t see the light in myself? Where do I turn when I can’t feel it piercing the darkness of my own pain? It is then I need to look to the light all around me. If you stare at the sun too long you’re left with bright spots in your squinting vision, and if you stay in the darkness too long it takes longer to adjust to the light when you see it. So maybe this is just a poor sort of analogy to some glow-in-the-dark stars on my ceiling. Or maybe it’s a way of acknowledging the darkness you are in, while taking note of and looking to the light around. It’s a way of realizing that anything that happens or has happened in the past, will be okay. Where the light is the darkness doesn’t really stand a chance. Where the Lord is the darkness will not prevail.

“I survived because the fire inside me burned brighter than the fire around me.” –Joshua Graham

About Emily in her own words:

I was diagnosed with Ehlers-Danlos Syndrome when I was 10 years old after two years of declining health and searching for answers. In the almost ten years since then I have had 22 neurosurgeries including a brain decompression, tethered spinal cord releases, numerous lumbar shunts, and cervical and thoracic spine fusions. I live in Michigan with my family, love to read and write, listen to music, and spend time outside. You can read more about my journey at http://www.carepages.com/carepages/EmilyDreyer

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.

Photography by Cindee Snider Re. Used with permission.

Aug 13
2015

Even Giants Fall. Gauntlet Story Feast

by Monica

This week’s story is a flashback written by my friend Cindee five years ago. Many of us are not just walking the Gauntlet on our own. We have genetically passed the DNA glitches to our children and are navigating this painful journey with them as well. It is heartbreaking to see them suffer. In families like Cindee’s and my own, there may be a sibling who has been spared. All the guilt and gratitude the well child feels along with fear and sadness for their brother(s) or sister(s) swirls into a vacuum of physical and emotional pain we never could have imagined.

God brought Cindee and I together last fall in the most beautiful place at the perfect time in both our lives. Her kindred heart is treasure. She has faithfully covered me with her prayers and words. During my last plasmapheresis treatments she sent me a card with a poem every single day. Before my last surgery she filled an entire journal with handwritten quotes, poems and verses. They continue to be balm for the wounds of my soul.

Today Cindee is at appointments all day with her daughter Meg. They had PT this morning then four hours in the research unit this afternoon. Tonight they are helping genetics and their PT/OT clinic launch a brand new offering (Thursday Night Live) for teens with connective tissue disorders and their parents. This is what warrior moms do. We are not just fighting for our own children to have the most whole life possible but also for the ones to come after us. Will you please pray for my friend and her family today?

Even Giants Fall
By Cindee Snider Re

(This post was written about five years ago when Sam was 15 and about 2 years into diagnosis. Kyle was 17. The boys are now 22 (Kyle) and 20 (Sam). You may remember Sam shared his story here earlier. You will want to go back and read it if you missed it or are a new reader here.)

It was late Tuesday afternoon. My son Sam and I were driving home from Children’s Hospital. Traffic was heavy and although the radio was on, I wasn’t listening. Sam was. “It’s true, you know,” he said.

“What’s true?”

“That ‘you never know what you’ve got till it’s gone,’” he answered as the song’s chorus replayed in the background. “I never understood that before, never appreciated waking up and feeling good or being able to do whatever I wanted when I got out of bed. I just took it for granted, figuring it’d always be that way.”

Tears welled in my eyes as I struggled to find words to answer my son. In February, he’d been diagnosed with Eosinophilic Gastroenteritis, an auto-immune disease affecting his GI tract. He’d lost 22 pounds in ten weeks and spent time in the new acute care wing of Children’s Hospital. Sam’s illness had caught us off guard. He’d been a physically strong, able, active teen who regularly ate us out of house and home, and suddenly, overnight, he wasn’t eating at all and rarely left the house, rarely left the recliner.

Tuesday afternoon, four months into treatment, we were heading home from more appointments. “I’d give almost anything to go back to before I got sick and really appreciate what I had,” Sam continued.

His words sliced through my soul. “Oh Lord,” I prayed, “why does my son have to go through this? He’s only fifteen, such a hard age to be different, sick, unable to eat his favorite foods or go out to eat, and he never, ever complains. He just gets quiet and tries so hard to focus on something, anything besides the pain. This is hard, Lord!” I silently cried out. “And I don’t know if I’m strong enough to help him through this.”

My oldest son, struggling with similar emotions and rocked by the changes in his brother and their relationship, poured his heart out in song.

This is a song of my greatest friend,
The one whom I love and would die to defend,
Whose honor and loyalty have no compare,
A soldier in a battle, too much to bear.

(Chorus)
I thought that you were unbreakable
That my faith was firm and unshakable,
But now I find that I was wrong.
There’s only one Being who’s that strong.

I can’t stand that you’re in pain,
And I don’t have the power to take it away.
It’s just too much for me to take,
That even a giant like you could break.

(Repeat Chorus)

So hold on, Sam, this storm will pass.
Just hold on, Sam, this pain won’t last.
Hold on. Hold on. Hold on.
God’s got you in His Hands.

I feel like I’m dying on the inside,
And I’d rather run than face a lie, cause
When it comes to compassion, I’m hit or miss
But you stand and say that we’ll get through this.

And He’s watching, watching out for you,
Just have faith, and we’ll make it through
Together.

“Father, there are no answers, just questions and emotions and a family holding on in faith, knowing You’ll see us through, and that we’ll make it there together, hand-in-Hand, standing strong in You! Amen.”

About Cindee in her own words:

I’m wife of 23 years to an amazing husband and mom of five creatives — Kyle, 22, Sam, 20, Sarah, 18, Anna, 17, Megan, 14. We’ve homeschooled for 16 years — kindergarden through high school. Quite an adventure! Our oldest graduated from college (with honors!) in May. Our home is often filled with teens/early 20s I’d claim as my own in a heartbeat. I love words, photography, nature, hiking, cotton, denim, and tea. And I crave quiet. Four of our five (and me) have Ehlers-Danlos, a genetic connective tissue disorder, through which I’m learning the deeper the valley, the greater the joy. I live in hope, grateful for grace.

Cindee’s blog can be found at http://www.breathedeeply.org

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.

Photography by Cindee Snider Re. Used with permission.

Aug 12
2015

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

by Monica

“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.

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.

Aug 10
2015

Sweet Tea and Jesus

by Monica

I have been quiet here. I continue to write elsewhere like I breathe. The fire of suffering the past months has been wild. Just when I think it might be under control there is a flick of a cigarette. The wind blows the sparks over my dry bones, and once again I am choking in the smoke of loss. Deep pain, my own and that of those I love, fans the flames. My pride keeps me from putting my whole heart here. I fear if you truly saw my charred fleshy wounds you would want to turn away. I’m finaly beginning the hard work of sifting through ashes. I’ve been through too many fires to doubt there is beauty here somewhere. I’ll find it. I will. Until then my God and my friends sit in my lament and let me cry.

I am continually amazed at the reflections of my life through blogging. The following post is from a year ago to the day, August 10th, 2014.

Today was the last Saturday of our summer. From the second I woke up I held on to moments like golden strands of fine thread needing to be tied off carefully so the tapestry won’t unravel. I am not sure if I ever fully believed God might give me a day like this . . . or a week . . . or a month . . . or three months, but I fought like He might, and He did.

I have been in recovery. I am a person who lost part of my brain and my soul. I have been relearning the simple things in life most people take for granted. I am in many ways like a child. If you spend time with me I will probably exclaim out loud about a hundred things you think are ordinary. I may have seen them or heard them, smelled them, tasted them or felt them before, but it has been years since anything did not pass through the brutal filter of chronic pain.

Dan and my girls are getting to know me again.

Delaney told me today I was funny. She only ever saw this mom in old home movies. I was the crazy one drinking a bloody mary for breakfast while dancing around the living room doing Elaine Benes impressions and belly laughing. I still believed life was good. She will tell me “Thank you” in an “I can’t believe you were able to do this for me way” for normal mom stuff like making her a peanut butter and jelly sandwich. It takes me off guard until I remember she has been making her own lunch and Danica’s lunch for too long. She turned around from the yard and said to me tonight, “I’m so proud of you mom. You’ve been through so much and still you provide.” I asked her, “What do I provide?” Her answer, “Kindness and love.” A tear falls, and I think . . . maybe she is going to be okay after all. Maybe I haven’t hurt her too much. Maybe she sees the big picture at almost twelve years old. Only the gift of the summer we’ve had could give this kind of clarity.

I see flashes of pure joy on my husband’s face when his old Monki shows up. I’ll do something simple for him like a wife might do for her husband. Maybe it’s just asking him if he needs a drink or a bowl of cereal, but I know symbolically it takes the tiniest bit of the incredible load he has carried for so long off him. It starts to tip the balance back to give and take instead of him always giving and me always taking,

For Danica it is different because our relationship was built on pain, mine or hers, and she doesn’t remember me any other way. She is thrilled to have a mommy planning playdates or going shopping with her, but she is not tenuous like Dan and Laney are. For Danica the fact her mom is out of bed is just her life today, not something she’s terrified we might lose. Still, her bedtime prayers have changed. Every night for as long as I can remember she would end with her little plea to a big God, “Please make mommy better.” I would cringe wondering how messed up a child’s faith could get if the answer never came. Slowly this summer she has moved on to pray about other things and for other people, letting me slip off the list. I love knowing her tender heart is getting a break from worrying about her mama.

During my plasmapheresis and IVIG treatments I made a list of things I really wanted to do this summer if I was well. Some of them were simple like taking the girls putt putting yesterday. Others were bigger like attending an outdoor concert, a major league baseball game and a trip to the beach, all activities that brought me true enjoyment before I became so ill. We never got to the bigger things because of money, but in some ways I think it was for the best because we learned how to live and love in this sacred space of home and everyday life again.

I also set out to lose steroid weight and become thinner over these summer months. This hasn’t happened, because I’m hungry for the first time in years, and I want to eat. I’ve realized the part of my brain that forgot how to enjoy anything is loving food again and drink and the community it invites too. I’m letting myself remember these right now. I’m showing myself grace. This body has been through hell. It’s okay to look in the mirror and respect the wonder of flesh and blood surviving all I have no matter what the scale says.

This evening our family was hanging out on our deck. We had just finished my “famous” corn dip. The sun was setting behind the trees. Over the Rhine was crooning “Favorite Time of Night” from our playlist. The girls and Twixie were playing badminton and soccer. I got that thick feeling in my throat as the cicadas sang. I felt my anxiety about all we are facing financially begin to sprout in my mind and try to rob me of the perfect night. I felt my fear about the evil in the world and the sadness for the suffering and brokenhearted. Why are we allowed to be here like this when so much of humanity is wailing tonight? Why does my heart ache over my own medical debt when people are starving and dying? How do I balance the goodness of God with all these things?

I have always been too serious. Life has always been a struggle between the highs and lows. I feel everything too deeply. I think about you and you and you, and I pray for you too. I wonder how you are today. I’ll write you a note to let you know. I’ll buy you a gift when I see something that makes me think of you even when I can’t afford it. If I just met you I want to cut through anything casual and hear your story. I want to know what you read and the music you listen to. I want to know what makes you laugh and what makes you cry. I know for sure God is real, and I’ll give the reason for the Hope in me. I know for sure life is hard and love is real, and we have to keep believing no matter what. All this is exhausting. Most don’t have the stomach for it and need to numb themselves or dumb it down as a coping mechanism. I get this. I do. I’ve tried to change. I’ve tried to medicate away the very thing I am learning is most likely a gift not a curse.

In this age of trying to capture our feeling in a facebook post or a tweet, I try to imagine telling some kind of narrative in just a few words. It’s not natural for me. Most of the time I just can’t do it, and I run to write for real in places no one reads. Instagram is a little easier. After all a picture is worth a thousand words, right? Sometimes I run to grab my camera and capture the way the light is falling or the girls are playing. I’m grasping to simplify what has always been so complicated for as long as I can remember. I don’t often succeed. On the rare occasion it happens it is usually just a few words strung together, hanging out there like a mantra for my soul. My OCD brain holds onto them, and I chant in my head like a child rocking to sooth away the day and finally sleep.

Today it came in a pillow that showed up in the mail.

SWEET TEA AND JESUS.

This I know.

I feel my symptoms returning slowly. I have quietly let the people who need to know begin to monitor how far we let this go before I get help again. I’m terrified, because I was released from a kind of prison, and I need to be free like this no matter what. No matter what the cost. No matter what the toll is on the people around me. No matter how many more scars. I can’t go back where I was. I knew another round might be needed. I remember asking, “How long will this last?” The answer was, “We don’t know. Maybe three months, maybe six . . .” I scribbled this in my little notebook I kept in the hospital those worst twelve days.

SWEET TEA AND JESUS. SWEET TEA AND JESUS. SWEET TEA AND JESUS.

This I know.

. . . It’s Sunday morning now. No church for us. Dan and the girls have taken a month off, and I am not sure when I can go back. I’m not sure why, but it has been good. We slept in until almost nine. All of us. We had coffee and breakfast and played Scrabble. I am so tired from my twitching body and racing mind. Symptoms. Our family will work on thank yous today. Gratitude for a family who gave us Christmas in July. It was amazing. Gratitude for a used laptop that showed up on our back deck when mine died. Someone who knows my world is still small and the keyboard and screen are the place I sort things out and reach out and am touched by you too. Gratitude for a friend who tells me this. “I don’t believe God brought you this far and provided all you need to walk away from the help you might still need to fight for your life.” She’s right. I ask, “Do we have everything we need today?” Once step in front of the other. Be faithful. Do the next thing. Love harder. Celebrate the gifts. Give the rest to Him.

SWEET TEA AND JESUS.

This I know.

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