Come after me. Meet me here again

by

Ripening
“Even when we don’t desire it,
God is ripening.”

-Rilke, The Book of Hours I, 16

I’m sitting here at my desk watching my cursor blink as I rub my tongue over the aching gums around tooth six. It’s become the razor on my wrist. It’s the place I can touch over and over to distract from all the other pain. A few days before Christmas in 2019 I suffered a tiny injury from popcorn. Twenty months later I am not only resigned to this wounding, but it’s my darling.

I’m not exactly sure when it began. It was a slow fade during the eight weeks in bed recovering from my tethered cord surgery in March. Lent ended. Easter came and went. I wasn’t making it to my morning nest chair. The spiritual discipline and delight of beginning each morning in praise and prayer was lost. I was lost.

During this dark time a dear friend sent me a care package with a tiny canvas she painted. The above quote was hand written around the borders. How did she know? I had nothing left to seek Him anymore. I wrestled with childhood theology. The inkling of desire. The struggle with doubt. This was supposed to be the proof He’d claimed my heart. But what now?

Several weeks ago, as I was fighting for my Rituximab infusion and making plans to travel back to Ohio for treatment, I ordered the book of Psalms. A single volume. I counted the days left in Ordinary Time in the liturgical calendar and purposed to read one Psalm a day until Advent. My hope has been an honest soul reckoning and a strangled prayer, “If I’m yours, come after me.”

I cannot catch you up.

I can tell you what I did today.

My dad picked me up early this morning to drive me to pain management for occipital nerve blocks. Six deep needles under X-ray and ultrasound to avoid all the hardware and shunt tubes. If they help even a little we will ablate all the nerves in another procedure. Skull base headaches are just one brand of pain I carry, but this doctor has given me new hope. I was supposed to rest my head and neck when I got home. Instead I pushed myself to sit here in my office and fight.

Made my first entry in my post nerve block pain log.

Called the Phoenix Children’s pediatric cardiologist who did Danica’s echo to make an appointment. We are referred back to him because of Danica’s scary tilt table results. Got an appointment for September 14th.

Called the diagnosing cardiologist who prescribed two meds for Danica on Thursday to follow up on a peer to peer appeal because our insurance denied the very expensive drug that will be safe enough to slow her little heart. Still denied.

Logged pain.

Called the drug company. Yes, they have an assistance card that will help up to $160 a month for one dose daily. She needs two. It’s not nearly enough help.

Researched getting the drug from Canada.

Cried a little.

Called scheduling for imagining. Emailed the new order from Johns Hopkins for an MRI for Danica. Her X-Rays and CT show the slipping below her fusion. Got an appointment for next Wednesday morning. Called Hopkins to let them know she is scheduled.

Logged pain.

Called Delaney’s neurosurgeon at Weill-Cornell and left a message with her symptom diary. We see him virtually next Friday to go over her X-Rays and MRI.

Called our car insurance company about the $150 a month extra we are paying to insure Delaney who will be returning to college and rarely driving. Got it reduced to $100 a month because she will be over 100 miles away. I mapped it door to door. 104 miles.

Logged pain.

Called the local oncologist who has agreed to see me and consider my autoimmune encephalitis/PANS case. Made an appointment for August 19th. Called my Ohio oncologist to have entire history back into 2015 sent to him. Filled out new patient paperwork including an agreement I will pay 20% for appointments and any scheduled infusions knowing this access to care will mean several thousand dollars each treatment. But thank you God, maybe, no travel and collapsing in my own bed. Please.

Cried a little.

Logged pain.

Fielded interruptions from the girls trying to shop for back to school online. Why is this such a hard and joyless thing for us year after year? No, that’s too expensive. Go through your closets. What still fits you? Danica collapsed half way through with racing heart. Mom, I can’t do it. She needs her medication. Mom, I don’t need new shoes. Mom, Go lay down.

Called the cardiologist again. Fight dammit.

Logged onto ASU. Did the math. Texted Delaney her semester budget for food and miscellaneous expenses. Bought her a sturdy grocery tote bag on Amazon to carry her groceries in. Worried about her instability symptoms and if she can carry heavy groceries at all. She made an appointment on August 10th in Tempe for fingerprinting and an I-9 form for her new job at the ASU art museum. Worried about her physically being able to work and go to school full time.

Ran my tongue over the screaming gums around tooth six. Yes. That’s better. Focus there.

Logged pain. Called the pain management office to share my pain log. Did you feel relief? Yes. No. Maybe? It hurts so bad, but there were needles. No, I wasn’t resting. My arms and hands and low back and legs are sore and twitching. Right. Totally unrelated because you’ve never heard of this. Okay. Thanks. Made a follow up virtual appointment for Monday morning.

Laid down and watched an episode of Gilmore Girls with Danica.

Cried a little.

Texted Dan I can’t make dinner. Can he stop and buy me sweet tea? I can’t make any. I’m sorry.

Answered a text from a friend. Do you think your Ritux infusion is working? Ummm. I know it was too little too late after too long. I will need it again. Count the five weeks. The week of August 29th.

I’m suddenly in Psalm 6 with David.

“Be gracious to me, O Lord, for I am languishing;
heal me, O Lord, for my bones are troubled.
My soul is also greatly troubled.
But you, O Lord, how long?
Turn, O Lord, deliver my life;
save me for the sake of your steadfast love…
I am weary with my moaning;
every night I flood my bed with tears;
I drench my couch with weeping.
My eye wastes away because of grief;
it grows weak because of all my foes…”

Come after me.
Ripen me.
I’m not enough unless you come.
Meet me here again.

This song has been on repeat day after day after day.

(Steadfast love. Friends, you are His for sure heart for us. Until there are new words. Thank you.)

You might also like

Less to Say. Clinging to Good

by

All things hold together

“I wish I
could say this desert
to you. But I
cannot say
in words

what I am, only
what I

am not, what
occurs beyond me
and is

therefore
knowable. It’s
beautiful here; wide-
open, empty. Come
with me. There is

so much
less to
say here.”

-David Hinton, Desert Poems

Day 857.

We’ve lived in this desert place for twenty-eight months now.

This year began with my usual scribblings of a word to guide me and things I hoped God would do in and through me. Everything fell away. I sat here with only one pressing call.

Say less.

There were two passages of Scripture I tied my days and nights to. They became like breath to me. They were my holy yes.

“He is the image of the invisible God, the firstborn of all creation. For by Him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities–all things were created through Him and for Him. AND HE IS BEFORE ALL THINGS, AND IN HIM ALL THINGS HOLD TOGETHER.-Colossians 1:15-17

And “Cling to what is good.”-Romans 12:9

Delaney’s Chiari diagnosis and travel to NYC in March, the week Covid exploded, was a hard stop. Her brainstem compression was as invisible to us as a deadly virus. Both faced off with my visible idols. I was losing the rental home I’d begun clutching. I was sacrificing the plan to host another Option EDS retreat in Corolla, specifically for women who are leading awareness and research, fundraising and community efforts. I was filing away the 501c3 paperwork and my dream of establishing a respite non profit here in Tucson. All of it fell to dust in my desperate prayers.

God, Please heal my girl.

Dan’s dad, our Curt, our PeePaw, left this world, and like many we’ve had no time or space or connection to grieve. It’s a cavernous loss. Funerals matter. Delaney’s senior year of high school and traditional graduation were ‘canceled’. I didn’t realize in the dozens upon dozens of life events I’d missed I was so looking forward to this one. Celebrations matter. Our first truly consistent practice of attending church as a family, partaking in the Sacraments and being involved in a local Body in other ways came to a halt. I prayed year after year to be well enough to see this deep desire of my heart realized. I don’t know when we will go back, but we need it. Community matters. Most of the measures of healing I’d experienced since moving here were overcome by a cruel mouth wound and retethered spinal cord and no help for either. The layers of suffering strangled me in a new way. Hope matters.

And the world got desperately ugly.

Everyone had too much to say as loud as they could. I didn’t recognize the God tied to anyone’s thrones and dominions and rulers and authorities or the need to be right more than kind. Social media was the most unbridled tongue I could imagine, and it broke my heart.

I sat with the call.

Guard your mouth.
Say less.

I breathed in the peace of Him who is before all things and in whom all things hold together.

And I clung to the good.
There was so much good.

Our sweet little home. A sturdy roof. A skilled neurosurgeon. Your donations providing access to specialized care. Protection and provision traveling and while in New York City. The miracle of a safe and beautiful place to stay. The kindness of strangers. The understanding none of us are strangers. Our Amy coming to be with us. Healing. The stability of Dan’s job. Daily bread. Hunger for the Bread of Life. Delaney’s scholarships. Delaney’s brave heart to begin at ASU no matter the challenges and isolation. Danica’s scholarships. The wisdom and courage of PRCA as they committed to in person learning. Danica’s fusion hardware holding on. An anniversary of one year without surgery for me, the first time in thirteen years I wasn’t cut. A working shunt. My parents just down the road. My sister Rochelle’s visit for my birthday that saved me. The sun in my face every time I lift my eyes to the hills. Rain as mercy. Grace to endure the pain that will not let me go. Love on top of love at every right time giving us enough and always pointing us to Him. Lessons learned in how to trust Him more in abundance and in need.

You.
Yes, you.

It’s risky to be quiet. The fear of being forgotten is real. You kept praying and encouraging and giving.

I’m not sure how long I am to whisper, but if you listen closely you will hear the two silly words I say over and over again,

Thank you.

(I know I’ve shared this before, but it is one of my life songs and is my prayer and praise now more than ever.)

You might also like

Shame and Gratitude. A Dan Post

by

Note to Dan
“I was usually filled with a sense of something like shame until I’d remember that wonderful line of Blake’s-that we are here to endure the beams of love-and I would take a long deep breath and force these words out of my strangulated throat: ‘Thank you.'”-Anne Lamott

Over the past thirteen years of unrelenting hard I have experienced a roller coaster of emotions, but the two I feel the majority of the time are polar opposites.

In-between acute shame and astonished gratefulness lies Grace.

The word ‘numb’ is described as being “deprived of feeling or responsiveness.” After experiencing three brain and spine surgeries for Danica, dozens upon dozens of surgeries and medical procedures for my wife, and now a brain surgery for Delaney, numbness is a necessary survival tactic I must employ to get through all I’m asked to do. My life is work that will never provide enough for my wife and daughters. My life is loving through service that will never overcome their suffering. My effort will never be enough. I’m ashamed. I stuff it deep down inside to carry on with the next thing.

K.J. Ramsey writes in her book ‘This Too Shall Last. Finding Grace When Suffering Lingers’:

Deep down, our greatest fear is that if we express how broken and scared we really feel, we will sink into complete darkness. We fear that expressing the depth of our discouragement will separate us from God. This is the knife edge of shame in suffering, the Enemy’s favorite weapon in defeating us, depressing us, and holding us back from the love we were created to receive.

Gratitude for provision of this home is something I breathe. Access to the best surgeon and healing after Delaney’s Chiari decompression, her scholarship to ASU, Danica’s scholarship to Pusch Ridge Christian Academy, a job that’s held through the pandemic and continues to provide insurance for the girls, my wife’s working shunt and my own health are gifts. I consider them more than I worry about what is next, because God has been so faithful. There is no good thing I take for granted.

My wife mostly handles all the bills. Along with being sick she considers this responsibility of access to care her full time job. I see the way she opens the mail and adds statements to three stacks of papers on her desk neatly organized with binder clips. She has a sticky note on each stack with a total due: Monica’s medical bills, Delaney’s medical bills, Danica’s medical bills and bills in collections. She’s a master at paying what she can to keep access to their doctors and surgeons, making payment arrangements with others and letting some go to collections. The sheer number of specialists, hospitals, imaging centers and surgical costs broken down make me sick to my stomach. Somehow she has managed this weight since the months of hospitalization and Danica’s birth and NICU stay in 2007. I’ve been told we should never feel guilty about this, we did nothing wrong to end up here and no family, however wealthy, would be able to crawl out from under this never ending debt. Still I’m ashamed. I stuff it deep down inside to carry on with the next thing. Monica needs another major spine surgery. She needs to see several other doctors about serious mast cell reactions and her bladder. She’s been suffering with a mouth wound for ten months. She’s needed to spend days in bed lately from debilitating headaches. She’s stopped seeking help for now because of a laser focus on the girl’s needs and her unwillingness to create more debt or cry out for help. This breaks my heart.

About a month ago my trusty old Honda Accord needed two new tires, brakes and some other work. The total was $989.03. Our delicately balanced survival budget always necessitates these kinds of unexpected expenses go on a credit card. That same week a letter arrived addressed to me from a man I’ve never met. It was a check for $1,000 and a note that read: “Dan, Here is something to help you take care of your precious girls. You are a good man Dan Snyder!” This love, man to man, somehow took away the crippling shame of receiving. Our life is full of stories like this one. Monica has needed to stay quiet about mounting financial stress since Delaney’s surgery. I’ve always seen God providing when she humbly asked for help on Facebook or GoFundMe. This particular and personal provision was God’s reassurance we are not alone. He will continue to meet every need even when we are too tired or embarrassed to ask. During that same time we were waiting to get important genetic testing done for Danica based on new symptoms and her recent imaging. The box and collection kit from the company was sitting on Monica’s desk for weeks because we needed to pay before we sent the sample. Once again a check arrived in the mail. Just enough.

This consistent display of God’s faithfulness awakens my dull senses and gives me hope.

My life is a ‘Thank you’ greater than shame.
His Grace is always greater.

“And my God will meet all your needs according to the riches of his glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen.” Philippians 4:19-20

You might also like

Never See the End

by

Never see the end

“…We think our testimony is supposed to be about our faithfulness, But our testimony is only ever how God is faithful to us, not the other way around. When we try to keep up the pretense for too long, we grow further away from God. To stay in relationship with God, when our worlds turn upside down and nothing makes sense, he invites us to lament, How amazing that a sovereign God is not offended by our big feelings. How amazing that He comes near.”-Alia Joy, Glorious Weakness: Discovering God in All We Lack

My unrelenting pain paralyzes me. The stillness and the groaning is really more like running and hiding. And I foolishly think I’ve ruined it all. My body, mind and heart are so weary. I cannot seek earnestly. But God is not offended by my lack of faithfulness. He is relentlessly pursuing me with scandalous grace. He knows my weakness. He entered it. He became it. He died to overcome it.

I will never see the end of His love.
This is where I’ll rest tonight.

(Mission House released their new album ‘I Heard A Song I Can’t Ignore’ yesterday. It’s truth over and over again.)

You might also like

Dear Dan. On Father’s Day

by

Father's Day

Dear Dan,

I hate I wasn’t there yesterday to celebrate you. Delaney and I are in New York for surgery and you are in Arizona with Danica and Twix. We’ve been apart for so many ‘special’ days I quit trying to quantify the loss, but it still hurts. As I read other’s facebook posts about their husbands and fathers and even wrote something to my own dad I realized painting your love with a broad stroke and a few words wouldn’t do. I refuse to romanticize the way you care for us. This kind of long faithfulness is hard and messy work. Last night I searched all the blog entries you wrote on the old Team Danica site and ugly cried my way through them. Your unique voice in all this suffering is necessary and true.

Less than a month ago, on the night of Delaney’s ‘actual’ graduation, you picked up tacos for dinner on your way home from work. Delaney was hurting that day and made the decision she couldn’t physically go to the graduation watch party planned. We all felt a strange grief choking us. When you arrived the girls were grabbing paper plates and napkins and getting glasses for drinks and there was a general sense of rushing to eat. Danica sat on the end of the bench at the table and Delaney pulled out the other end quickly. Danica fell backwards off the bench and hit her head. You lost it. You didn’t curse or yell. Instead, in a pained sarcastic way, you clapped loudly. The incident triggered something in all of us and dinner was over before it began. After we were sure Danica was physically okay Delaney ran to her room and sobbed her heart out. You retreated to the hammock in the back yard feeling awful. You explained how almost every minute of every day you are holding your breath waiting for the accident that breaks Danica’s hardware and fusion again. Most of the time you are able to keep this feeling out of reach but when something like the fall happens your heart is split open for us all to see. I carry this fear too, but I shine it up with faith to make it more bearable. There is something about Delaney’s Chiari diagnosis that’s exposed us in new ways.

The mood stabilizer I take keeps me steady most of the time. Once in awhile I open the flood gates with you. You let me say the same things over and over. I tell you how I don’t think I can embody this pain one more day or continue to watch our girls suffer. You see me and you hear me, and it helps me go on. I wipe my tears, blow my nose and make a plan for the next impossible thing. I go over the appointments, the insurance battles, the money that isn’t there and the bills I’m prioritizing. I talk about the girls and their emotional needs on top of the physical stuff. This is my way of trying to maintain some control in a life that is almost nothing like we thought we wanted it to be.

Somewhere in the midst of our mess, you have this other world to manage too. You leave the house at 4:30 am every day to work. I don’t think you’ve taken a true sick day in over a decade. You have never complained. Our family has always come first and any personal ambition or desire for success has taken a back seat to the need for steady insurance coverage and a schedule that allows you to be there in the afternoons and evening when my spoons are gone. Moving to Arizona to start over with a company that has no understanding of our complicated medical journey has made it even more difficult.

No one really knows the Dan I first met and fell in love with. The Inner Circle award winner. Your life with the trips and recognition. The bonuses and stability. The social network. The friends. Golf. Your luxury car. Your boat. Your motorcycle. Things that made a life outside of what I was to you. I have seen you sacrifice everything down to the most humbling day when I gave you my beautiful diamond solitaire in the red and gold box to sell for bills. The stone you studied and chose. The perfect carat with perfect color and clarity you had worked so hard to pay for and gave me on the beach in Kauai. You brought me the setting back empty, and we both cried. Nothing was sacred in our desperate attempt to stay afloat.

I have never seen or heard or read in a fairy tale or real life about a man who loves like you do. A chronically ill woman once compared her steady husband with you. She said something that shocked me. She said, “Most men would have left women like us.” Here’s the thing. I have never once felt like you would leave me. Your love is that sure. You are a mirror of God’s love. When I can do absolutely nothing to be your help you still cherish me. When the only physical connection we can make is less than a hug because of my pain you sniff my neck deeply and sigh, not out of frustration but as if you are still intoxicated with something only you know resides in this shell. You treat me like a soul. You respect me. You forgive me over and over again for the hard edge I carry most of the time. You are so fierce in your commitment it frightens me, because I still can’t believe it’s possible.

I want to do something huge for you. I want to give you a break. I want to spend a week with just you and feel even a fraction better than I do now so I can give you all my attention. I want you to know friends again and have something to say to anyone besides how hard it is all the time over here. I want you to experience recreation or pleasure without a single shadow overhead. I want to sit in the sun with both our faces burning and feel the exact same release at the exact same time and say together, “This is good.” I want you to feel the escape you loved about riding your motorcycle alone on a spring day in Maryland down an open road lined with flowering pear trees. I want to have a meal with you and not think about what it costs or what in it might make me sick or how long we have before I crash. I want to taste every single ingredient and talk about them and sip the notes in our wine like a symphony and tell the truth in the clear way we used to on special nights alone. I want to be healthy for just one more night so I can make love to you the way I used to, when our bodies and spirits were so melded it was as if you were wearing my skin and I was wearing yours. I want to laugh out loud and not have it catch in my throat like a knife. You always make me laugh. I love how you make me laugh.

So much of your love is about Delaney and Danica too. I don’t know any other man who works all day and comes home to work just as hard. You don’t sit down until you have a load of laundry in and the dishwasher emptied and coffee ready for the next morning. You run the vacuum and ask me what else you could possibly do to make something easier or less painful for me. On nights I know you are starving, you will eat a bowl of cereal without complaining because I just couldn’t make dinner and nights I do cook you tell me how much you appreciate it. “Good job, Monki.” And in those words you are saying so much more because you know how much it hurt to stand and stir and lift and open and shut to make a simple meal. You step in for carpool and shopping and every endless outing moms have to make when I can’t. When I try to go along you have my back and see the look in my face when I’m done. You protect me even from our children on my hardest days. This hurts us both, and I don’t know any other man who is this brave.

I pray for you. I ask God to give you the strength you need to keep doing this impossible thing you have somehow made possible for us. I beg Him to bring you rest or relief or joy of any kind. I thank Him for you so many times every day and every night.

I know we quit looking for the reasons all this happened to us. I know we stopped believing it was punishment for something we did. I know we quit asking almost all the whys and have learned together to take it minute by minute, hour by hour as it comes. I just have to say it over and over. There is no one else who could have stood in the stormy waves this long and not turned and swam to save themselves. You were made for me. You were made to love Delaney and Danica. Every part of your life until our life began made you ready to be the man you are.

Thank you.
Two silly words.

You might also like

Dear Delaney…On Chiari and Seeing and Staying with Pain

by

LaneyLemon“Finding grace in suffering is less about cognitively assenting to the truth of God’s goodness than about letting our souls and bodies be seen. If you are a sufferer, be seen. If you encounter someone’s suffering, tuck your words of God’s goodness away until you’ve first listened with the eyes of your heart determined not to look away from pain.”-K.J. Ramsey, This Too Shall Last: Finding Grace When Suffering Lingers

My darling girl,

I’ve been writing in a journal to you since before you were born. Many of the entries are full of wisdom I’ve collected through the years and want to make sure I share with you. Most of them begin with the word, “On…”

When you were almost three years old we enrolled you at a Montessori school in Akron, Ohio. I would drop you there on my way to work. It was the first time I’d left you with someone who wasn’t family. Just a few weeks into our new routine I received a phone call from the school. “There’s been an accident. Delaney fell and cut her head. We need you to come right away.” It was a twenty minute drive from my office to the school. You tripped while running and the corner of a cabinet split your forehead wide open. When I rushed into the school I gasped at all the blood. A pediatrician mom told me the head is very vascular and not to worry but to take you to the children’s hospital emergency room right away. Your dad met us at the school and drove us there. I sat in the back seat holding a cold cloth to your wound and tried to keep breathing. When the time came for them to hold you down and place thirteen stitches in your perfect brow I couldn’t watch. I couldn’t hold your hand. I couldn’t tell you it was going to be okay. I began to black out and a nurse took me out of the room to sit on the cold floor with my head between my knees. I sobbed while you screamed. Your dad stayed with you.

Next Saturday you and I will fly to New York alone. You have Chiari and need a brain decompression. But it’s not that “simple.” We aren’t sure if your Chiari is being caused by something else like a leak of cerebral spinal fluid. Sixteen days from now you will be rolled away from me and have something called an ICP bolt placed. It will measure your intracranial pressure for twenty-four hours. Eighteen days from now you will have brain surgery.

One of my biggest fears is that you will wake up and look at me in the terror of post op pain and ask me why I didn’t tell you how hard it is.

I don’t want to take for granted you understand what will happen just because your little sister has been cut three times and we are just calling my surgeries “countless” now. I know the trauma of watching us climb into the car or on a plane and leave you behind all these years has settled into a hum of reality. I also know you have been protected from seeing the worst because we always needed specialized care so far away. By the time we made it home we were hurting but healing. You didn’t hear the screams when our IVs blew and no one could get a new vein. You didn’t see the hours without pain meds while we suffered and waited for IV therapy. You didn’t see the delicate dance with each new shift nurse and resident doctor fighting for the best care while not tipping the scales to crazy. You didn’t experience the dreaded day two, the day after the triumphant Facebook posts about being a warrior, the day when all the anesthesia wears off and we wondered how in the world this hurt could be better than the pain that brought us there. You didn’t see the endless parade of helpers that took our vitals and checked the equipment and cleaned the room and brought the meal tray and took it away along with the nutritionist and pain management doctor and physical and occupational therapist and social worker. You didn’t smell the antiseptic hospital odor that oozed from our pores. You didn’t taste the flush of the IV over and over or feel the tearing of the tape off skin while checking wounds. You didn’t see the desperate need to be released from the hospital just to be anywhere else just so we could finally rest.

Today I explained the process of hospital admission and getting ready. I talked about the questions you will answer over and over again. I discussed the awful moment when they will take you away from me and you will be alone in a freezing cold room with masked faces and cold hands moving you to the operating room table while placing sticky leads all over your chest. My body has become just a container for my soul but you are seventeen and no one has ever touched you like this. You are most worried about the catheter and knowing someone will be in your private places after you are put to sleep. It may be the hardest part. They will ask you your name and birth date one more time and do you have any allergies and what surgery you are there for. You will be scared and so ready for the mask and the gentle voice asking you to take a deep breath and another…

I will fight like hell to be there when you wake up. Because you are a minor and we will be at a children’s hospital they tell me I can. You will be confused and groggy. Your throat will hurt from the intubation and your mouth will be so dry. They will say your name and ask you if you are in any pain. And you will begin to grapple with what’s just happened. You will want to know how the surgery went, how large the incision is and when we can go home. From the moment you wake up you will begin thinking about your own bed, and Dad and Danica and Twix and every hard thing after waking up will be the next hard thing you do to make it there.

You rushed me through all this and began to cry. A Delaney cry. Your little nose quivered like a bunny and a tear slipped down your cheek as you quickly wiped it away and said, “It will be okay, right?.” You reminded me you are in pain every day and this is just something you have to do to move on to the life you want. You asked me while you were telling me. And I wanted to reassure you, but I’m afraid too. I’m most afraid of lying to you about any of it, because that’s not what we do. You and I have always been impeccable with our words to one another, one of the four agreements I raised you on.

It was easier for me to have faith with little Danica. I’d been fighting for her since I first heard her fetal heart beat. Laney, I always believed you were meant to fly away from all this chronic illness and suffering. You were to leave with a hard scrabble story of a character building childhood resting on the foundation of God’s faithfulness and the multitudes of kindness that were miracle to our family. I said a thousand times I was holding you loosely. It turns out I’m clutching you girl. But I know every impossibly hard thing I’ve lived and learned about Chiari has brought me to be your mother right now. I have seen the goodness of God in the land of the living. I’ve seen miracles. And I’m pleading with God for one now.

Laney, I promise you I will not look away even once during these next hard weeks and months. I won’t faint and be ushered away. I will not tell you how good God is to clean up the edges of the suffering. I will write this story exactly as it unfolds with the vulnerability of being seen. I will stay. And God will be there too. Nothing about Him will change. He will watch over us and be faithful and work out His great love for us through the pain.

Please Jesus. In the chaos of pandemic and the necessary and holy work of fighting for justice and change please see us too, a broken mother and a hurting daughter who will be far from home in a strange city fighting demons. Please be with Dan and Danica as they are left here. Comfort them. Protect their minds and hearts. Thank you for the community of love surrounding us as we move forward. Please continue to provide our needs and access to care through the generous hearts of others giving and sharing so many will pray. On Chiari, I’m begging you to lead us in the perfect plan for surgery and bring healing in the multitude of ways we need to make this a success. Help us show that honest suffering will always point to You and inspire hope. Our hope remains. We know this too is Grace. Amen.

(Friends, I’m humbly asking you to please add Delaney’s surgery dates to your calendar. They are Wednesday, June 24th and Friday, June 26th at Columbia-NewYork-Presbyterian, The Morgan Stanley Children’s Hospital. Please share her story and ask your friends and church to pray. Use the hashtag #teamdelaneyjayne. If you want to follow her story and receive updates while we are in New York please follow me on Instagram @MonicaKayeSnyder or through Delaney’s gofundme page at https://www.gofundme.com/f/help-delaney-jayne-overcome-chiari

Thank you for giving and making a way. Thank you for praying when we are weary and cannot find the words. Thank you for encouraging. This is such an incredibly hard and lonely place for all of us. We need our people to see us and stay.

You might also like

A New Nest. A Longing Fulfilled

by

5343AE46-1245-4A60-A1B3-89909E1C239D
“Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.”-Proverbs 13:12

My last post, exactly four weeks ago, spoke about how I drove to a little house that was for sale a few miles north of here. They’d just dropped the price, and it was maybe something we could afford. I cried and I prayed. I asked God to make a way. I begged Him to gently scoop our family up and set us down somewhere we could stay for awhile and even put down roots.

Later that evening my parents and Dan and I toured the home with our realtors. We knew. The six of us stood by the front door before leaving and my dad prayed. Nothing is too hard for our God. I don’t want to fill this space with the challenges we face buying a home. If you’ve read here or at Team Danica’s old blog you know our deep and abiding medical debt and the way we’ve lived off manna the past decade, manna often placed outside our tent from God through you. You may know the beautiful home we’ve rented here was literally a miracle gift of time and place to start over, something we never could have afforded to rent on our own. You may know that any house payment is a stretch because our need for access to specialized medical care and surgeries will not end and year after year the out of pocket costs are more than Dan makes. They just are.

It’s day 599 living here. I asked God for a year. He gave me so much more. He graciously let me settle into a rhythm of being fully alive. We’ve suffered gratitude and we’ve sucked the marrow out of every day. It has been ALL GRACE.

We closed on our new desert home yesterday and should receive our keys today. There is so much hope but also understandable grief, and we are letting ourselves sit in this messy emotional space. The grief of leaving a home where I’ve healed the most ever in my life is compounded by all the hard work and physical effort this move requires. And it’s all happening in a pandemic world. It’s all happening when my Delaney Jayne is losing everything we dreamed the end of her senior year would be while needing brain surgery. She’s needing brain surgery in a city with the most Covid-19 cases and deaths in the United States.

I received a message from an Ohio friend last week. She shared Psalm 84 with me. I read it in bed on my phone. I opened my Bible and read it with my coffee in my little nest corner, the only part of my home still intact. I carried my Bible outside and read it again while eating breakfast in the sun.

How lovely is your dwelling place,
Lord Almighty!
My soul yearns, even faints,
for the courts of the Lord;
my heart and my flesh cry out
for the living God.
Even the sparrow has found a home,
and the swallow a nest for herself,
where she may have her young—

a place near your altar,
Lord Almighty, my King and my God.
Blessed are those who dwell in your house;
they are ever praising you.

Blessed are those whose strength is in you,
whose hearts are set on pilgrimage.

As they pass through the Valley of Baka,
they make it a place of springs;
the autumn rains also cover it with pools.
They go from strength to strength,
till each appears before God in Zion.

Hear my prayer, Lord God Almighty;
listen to me, God of Jacob.
Look on our shield, O God;
look with favor on your anointed one.

Better is one day in your courts
than a thousand elsewhere;
I would rather be a doorkeeper in the house of my God
than dwell in the tents of the wicked.
For the Lord God is a sun and shield;
The Lord bestows favor and honor;
no good thing does he withhold
from those whose walk is blameless.

Lord Almighty,
blessed is the one who trusts in you.

Please rejoice with us as we move into our new nest, a deep longing fulfilled. Please pray for us. I heard from Delaney’s neurosurgeon this week. He still plans to do her surgeries on June 8th and 10th. Brain surgery is not elective. I cannot see my way from here to there. We need to raise money for her out of network deductible. How can we ask for help again, especially now? We need to find a safe way to NYC and a protected place to recover there after. We need to find a safe way home. Please pray for my own physical pain, the mouth issue that simply will not heal and my need for my chemo. It’s become more clear Delaney and I will be doing the New York trip, surgery and recovery there alone. My body and spirit will be pushed beyond their limits. I will need strength and endurance only God can give.

We look to God’s faithfulness and know He will make a way.

Our new nest is another stone in our Ebenezer.
Ebenezer

You might also like

Home. Returning and Remembering

by

Weighted
“…Why does the Scripture echo with the twin commands to return and remember? It is because God’s promises always intersect with places. We relate to God and to one another in some place. To remember is to return. To return is to remember. Rootlessness is a kind of forgetting. And home is the dwelling place of memory.”-Christie Purifoy, Roots and Sky

Day 571.

It came through an email and then a formal letter. A notice that our lease here will not be renewed. The children held under the trust would like to move back into their home. The home where they lived with their mother when she died. The home they had to vacate immediately so it could be rented while the finances were handled. I’ve prayed for them. I’ve wondered about their hearts.

It’s a beautiful story. How God not only brought us to Tucson but prepared this house for us. I’m crying now because I cannot imagine having lived anywhere but this healing place. Although I’ve had two shunt surgeries since relocating I have healed more than I thought was possible in this life. I’ve lived more days out of bed, driving my girls to school, making dinner, doing a load of laundry and sitting outside with my face in the sun than I did in the ten years prior. I’ve had suffering but so much less pain. Almost every night I step outside and take a picture of setting sun. I walk barefoot across the pebbly desert path to the fence looking down into the wash and out towards the Tortolita mountains. I feel the evening air on my face. And I say, “Thank you.” I thought I held this miracle time here loosely. Faced with the vacate date on the letter I realized I’ve begun to take root.

Shelter is Dan and I’s shared insecurity. We have childhood reasons and young adult reasons. Both of us felt at one time or another we didn’t have a safe place to land and made desperate decisions out of the deep need and desire. When I met Dan I fell in love with his townhouse as much as I did him. It was the first home he purchased on his own. I worked in the real estate boom in Northern Virginia and Maryland, and he worked in the early days of internet sales. Between 1999 and 2002 we bought and sold five homes, all of them new construction. I was gifted at creating beautiful spaces and several of our homes we sold with most of the furniture and decor. All of them sold within a day or two. People walked into these places and wanted to stay.

If you’ve read through the days of Team Danica you know we’ve left homes. Perhaps the most painful was in 2011, after Danica’s second brain surgery and fusion when we moved into my parent’s basement. The facebook memory came up today, “Took a huge leap of faith and gave notice on our house today.The windows are open, and I hear a bird chirping. It reminds me, ‘Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?’-Matt 6:26” I had to quit my job to take care of her while she was in her brace and wheelchair. I was also at the point I could no longer function with my own Chiari and instability and needed surgery. It was a miracle, a year and a half later, when we passed our little Rockingham ranch with a ‘For Sale’ sign and prayed for the impossible and God said, “Yes.” We weren’t even looking and barely hoping we could have our own place again. And oh how we loved that little home. I lived in my nest chair or in bed and friends would come to just sit in the sweet and peaceful space. Leaving our house, safely in my parent’s name to protect it from our endless medical bills, and affordable because of my own disability, was the riskiest part of this move west. Dan and I would have lived there until we died if it hadn’t been in Ohio, a place that was slowly killing me.

Now Delaney needs brain surgery. Out of state. Out of network. More daunting than anything we’ve faced. And we have to move. It’s heartbreaking for us all, but for Delaney to not be able to picture where she will recover is particularly agonizing. She inherited the gift of creating beautiful spaces and her room is her refuge. Dan and I’s great grief is we cannot give this stability to our girls. We could rent again. But we’ve learned how unstable that is. Apartment living is not really an option because of my mast cell. Even our neighbor’s dryer sheets here make me very ill if a window is open. For so many reasons where we live is medicine. It’s the safe place to be most well. We need some control over that.

I promised Dan we would face this problem head on when Delaney and I returned from NY and DC. When our trip was cut short by the health crisis and we flew in Sunday he pressed me. I was still in mama warrior mode. I needed to get the consult from my Maryland neurosurgeon. I needed to schedule actual surgery dates in NYC. I needed to take a breath and scan my own body for the pain and infection I’ve been ignoring. I broke apart. I told him we would look at apartments in the city of Tucson. This is what we can afford. No, we can’t, but we can try. How can we ever settle when my health and the health of our girls is forever in jeopardy? There will always be another surgery, more treatment, more than we can pay. We have been called to the achingly beautiful life of manna. No safety nets. No savings account. No college fund. No retirement. Still, we wake every day and there is Dayenu. Enough. More than enough.

As I was praying this morning I realized most of the world is now being asked to at least consider what it is like to live in this way. When everything else falls away what remains? Returning. Remembering. Home.

I picked up the contents of the girl’s lockers at their school today. They were bagged and put in the passenger seat of my car curbside. I drove to a little house north of here that’s for sale. It’s exactly the price we can afford if we could get a loan. I asked God to reconcile the struggle in my heart and make it clear through providence and provision where we are to go and to please pry my heart away from this dream of rooting in a specific place if He’s asking me to wander the desert instead. I prayed the verse I’d read this morning, “Give me a sign of your goodness.”-Psalm 86:17 As I pulled into our driveway I saw a large box on the front porch.

When Delaney and I went to New York last week we stayed in gorgeous condo in Hudson Yards. It was offered to us through a friend of a friend. It’s one of the most beautiful things we know through all our hard. There is so much kindness. This woman didn’t hesitate to open her home to us but also stocked the fridge with healthy food and left fluffy white towels, pillows and duvets. On the bed in my room was a throw blanket that looked loosely knit but was actually weighted. I slept like a baby. The first night I thought maybe it was my sheer exhaustion. But the second night I knew for sure it was magic. My relationship with rest is complicated. I’ve taken strong sleep medication and ativan every night for a decade. I swallow my pills and wait. And wait. And wait. Every synapse in my body fires. My legs twitch. My mind races. And I wait. This was a different kind of falling asleep and staying asleep. I texted gratitude to the angel who gave us the gift of staying there and asked her where in the world she got the blanket. Today my very own blanket arrived on my doorstep. I laughed and cried. It was God’s sign of goodness. Another beautiful story in this epic life of humbly receiving love. It was hope.

There are other signs today. There was a rainbow over the Catalinas in the pouring rain and the expressed heart of a church praying for us and the beauty of my parents loving us in the urgent and particular need of finding a home.

As the world shelters in place I think more than ever of Tony Woodlief’s words from Somewhere More Holy,

” . . . This is the story of how we reclaim the things that are lost. It’s also a story about how a home can be become sacred, and how in the process it can sanctify us as well. I can tell you these things because I have been in dark places–which is the only way any of us learns to love the light. . . Home is more than a place where we eat and sleep; it is where we learn grace, where we glimpse heaven. It is where we find or lose God, or perhaps where He finds us if we will only be still long enough to listen for Him.”

I can feel the collective world stilling themselves. These are dark times. As everyone returns home, whatever that looks like, may we remember the light. If we lose our way. If we forget the goodness. let’s remind one another.

Thank you for all your love and prayers. I’ve been particularly quiet this week. Tomorrow morning Delaney and I will have a phone consult with the Maryland neurosurgeons we were supposed to see in person. It will bring clarity to the surgical decisions made in New York. We have surgery planned for Monday June 8th for an ICP bolt to measure Delaney’s pressure for 24 hours and then the brain surgery on Wednesday, June 10th. It will be days in the hospital and then another week after discharge until a post-op visit that will clear her for travel home. It all seems impossible. But that is the awful place where miracles happen.

Our Hope remains.

Rainbow

You might also like

Vulnerable.

by

Warrior
“‘What is it you’re frightened of?’
asks my warrior side.
What fills your heart with such dread?
‘What happened to your coat of bravery you wore so confidently?’
I feel like a deer sometimes, I answer.
I’m not always like you.
I want to lie down in flower-kissed pasture,
let my eyes close against the sun.
I don’t want to be poised for battle, I say.
My buttons can’t always cover what’s inside.
Don’t be disappointed by what you see, I plead.
More kindly now, my warrior side asks,
‘But what is it you are really frightened of?’
The possibilities of the inevitable,
I manage to say in my soft deer voice.”

-Beverly Hyman-Fead, Patient Poets: Illness from Inside Out, Marilyn Chandler McEntyre

Today I’m the deer.
I want to lie down in a safe pasture with the sun in my face and cease to fight.

I’m terrified of Chiari. It was the first enemy. Both Danica and I slayed her. She’s resurrected and attacking my unsuspecting Laney girl without warning.

I’m angry from battling for insurance coverage for necessary imaging for Delaney and now the process of appeal for the ones denied. Maybe it’s just a cover for how mad I am this is happening at all.

I’m frustrated from fighting for care for an injury behind a tooth that has taken me to six appointments at four different dental specialists with no resolution.

I’m afraid of how sick I feel as persistent infections rage and my brain burns. There is no plan for treatment.

I’m devastated by the re-tethering of my spinal cord for the third time. I’m losing the feeling in my legs and feet. My neck is pulled backwards when I straighten my spine. I’m finding ways to curl up when I sit on the couch or in bed to make the stretching and burning less. If I sway in my belly hardens with contractions like labor. I’m not emptying my bladder fully because I cannot feel it. I’ve had two UTIs in the past month as a result. I will not seek surgery again until I’m unable to walk. I cannot.

I’m grieved by the hard decisions to close two doors to people and places I was sure God called me to this year. Things I wanted to prove I’m turning this pain into purpose. Things I wanted to prove I am doing something else with my life than just this surviving.

I’m heartbroken by the loss of intimacy with several close people in my life. I risked talking about my hurt. I forgot it’s safer to keep it to myself.

I’m lonely in the way being chronically ill always will be. Because only someone enlisted in the same war can crawl into the foxhole with me. But they can’t turn to look me in the eyes because our enemy is relentless (and their neck is most likely also fused). There are so many beautiful people waving flags and cheering from a distance. But I need triage instead of a parade. You can’t see that from over there.

I’m furious my children need a foxhole too.

I’m pretending like a good soldier. My husband needs me to say I’m okay. My girls need to feel I’m okay. If the bile starts to come up I swallow hard. Remember Monica. If you say you are hurt too loudly people may decide to walk away.

I’m ashamed. After all God’s faithfulness to my family and I how can I feel this hopeless about where we will live in a few months? This need to know where we will shelter trumps everything else all the time. Dan emailed today, “When are we going to talk about moving?” I’m paralyzed. This is just one more thing I am supposed to figure out.

I’m exhausted. Every night I sleep less my joints get looser and my body weaker.

I’m just so very tired.

Chronic illness is fraught with imagery of battles that might be won or at least an enemy that could be held at bay. We call ourselves ‘Warriors’ in the fight for big and little things in our lives especially access to care. This rubs against a faith that bids us to surrender to the will of God and His perfect plan knowing that might include long term suffering and even death for His glory. My mind and spirit are confused and fatigued by both.

I just want to lie down.

I didn’t prepare the FedEx with twenty pages of notes and reports and the discs of Delaney’s scans for the neurosurgeon in New York. I couldn’t write an encouraging note to someone else to shift any of this weight into kindness even though it’s what saves me most of the time. I didn’t make the pasta dish I promised the girls I would. I texted Dan I simply cannot pick the girls up from school even though it’s his gym day.

I’m paralyzed.
I wish I could scream.
I wish I could run.
I wish I could defect.

Instead I hear a tiny whisper of truth from a Word hidden in my heart.

“The LORD will fight for you; you need only to be still.”-Exodus 14:14

You might also like

Grief. When lightning strikes again

by

Chiari Lightning

You thought
you had hit
every layer possible,
that you had found
the far limit
of your sorrow,
of your grief.

Now the world falls
from beneath your feet
all over again,
as if the wound
were opening
for the first time,
only now with
an ache you recognize
as ancient.

Here is the time
for kindness—
your own, to yourself—
as you fall
and fall,
as you land hard
in this layer
that lies deeper than
you ever imagined
you could go.

Think of it as
a secret room—
this space
that has opened
before you,
that has opened
inside you,
though it may look
sharp in every corner
and sinister
no matter where
you turn.

Think of it as
a hidden chamber
in your heart
where you can stay
as long as you need,
where you will
find provision
you never wanted
but on which
your life will now
depend.

I want to tell you
there is treasure
even here—
that the sharp lines
that so match your scars
will lead
to solace;
that this space
that feels so foreign
will become for you
a shelter.

So let yourself fall.
It will not be
the last time,
but do not let this be
cause for fear.

These are the rooms
around which your
new home will grow—
the home of your heart,
the home of your life
that welcomes you
with such completeness,
opening and
opening and
opening itself to you,
no part of you
turned away.

—Jan Richardson, The Cure for Sorrow, A Book of Blessings for Times of Grief

It was a September afternoon like most others during that season of my life. I’d worked from home all day on database lists ordered from non-profit and political clients through my employer outside Washington DC while caring for my not quite yet 2 year old Danica. A little after 2 pm I would wake her from her one hour afternoon nap, and we would drive to Holy Cross, a Lutheran church about fifteen minutes from our rented house on 35th St. We would wait in the parking lot for the bus from Lake Center Christian School to drop Delaney. She was in 2nd grade. My habit was to arrive a few minutes early. Danica would have a bottle in her car seat, and I would stare at the church steeple, breathe deeply and pray. The spiritual discipline of “hard stops” had saved me over and over. On that particular afternoon my heart was blocked with a sadness and a fear I couldn’t name. We returned home from the bus, and I put a pot of water on the stove for macaroni and cheese. I turned the TV on for the girls to watch a show while I checked in with work to run another list order. I was standing in the little kitchen with the indian summer sun warming my face through the window when the phone rang.

We knew something was wrong with Danica since her neck went crooked in May. They called it ‘acquired torticollis’. I’d managed my telecommuting job and driving her back and forth to Akron Children’s Hospital several times a week for appointments and therapy. Her pain and disability seemed to be getting worse. Finally a physiatrist ordered an MRI under sedation. This was the first time I heard the words “Chiari malformation.” They meant nothing. The doctor kept talking, Hannah Montana was saying “Sweet Niblets” and Delaney laughed out loud as I ran to my laptop and googled the words. I began to weep. The pot of water boiled over onto the stove and floor.

Two weeks ago Delaney saw a neurosurgeon at Phoenix Children’s Hospital. We heard those words for the third time. “Chiari malformation.” Danica. Myself. Now Laney. This time these words meant everything.

Chiari.
Complex Chiari.
Brain stem compression.
Complicated family history.
The doctor kept talking, but I quickly sunk beneath his words.

Since Delaney’s appointment I’ve been in crisis management mode. The fight for access to the many additional imaging orders needed and other specialist consults is all consuming. And it all feels much more urgent because my girl is a senior in high school with very specific plans for college in August. She has always been the one with wings so ready to fly. Except now she struggles to hold her head up.

I’ve moved through the past two weeks in a dense cloud of physical exhaustion, my own very real pain and what I now recognize as grief. But it’s a sadness and loss I’ve never known before. It’s not an opening of an old wound but something new altogether. After all we’ve been through this impossibly hard thing with my Laney has buried me alive.

God is meeting me in this dark place.

I believe there is generous enough grace to hold me there as long as I need to stay.

I believe there is strong enough grace to rescue me when every bit of oxygen is gone, and I must rise.

We will need kindness and shelter to make it through this next storm. I’m so grateful you are here. Thank you for praying for us. Thank you for staying.

“For the righteous will not be moved. He is not afraid of bad news. His heart is firm, trusting in the Lord. His heart is steady. He will not be afraid.”-Psalm 112:6-8

You might also like

1 2 3 16