Searching for "Listen"

Surrender Every Little Thing. And a super sparkly giveaway

by

ELT

“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.

27653(1)

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!

You might also like

Keep Moving. Just Five Minutes. Gauntlet Story Feast

by

11269453_10153186607839130_1599958277_n (1)
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.

GSF #!
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.

image1

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.

You might also like

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

by

Howard Hughes

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.

10633937_10204838002137313_8603078266312112036_o

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.

You might also like

The Light Around Me. Gauntlet Story Feast

by

LightFinal

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

Emily (1)

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.

You might also like

Even Giants Fall. Gauntlet Story Feast

by

8438288434_4149a61076_o (1)

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.”

Cindee

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.

You might also like

Sweet Tea and Jesus

by

Sweet tea

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.

You might also like

Do you See? Gauntlet Story Feast

by

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

DSC_0156

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

About Monica Kaye:

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

MonicaBW

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

You might also like

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

by

“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

Laity1

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

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

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

Bringing Good Out Of Bad
By Delaney Jayne

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

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

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

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

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

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

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

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

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

About Delaney Jayne:

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

Laney Trees

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

11269453_10153186607839130_1599958277_n (1)

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.

You might also like

A Quote. A Poem. A Song. On Hope

by

HOPErock

“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?

You might also like

Holding On. Letting It Go. And a giveaway

by

Gethesemane-CS-Lewis-224x300

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.

You might also like

1 2 3 4 5 6