Archive of ‘Prayer’ category

Feeling Forsaken. Knowing I’m Not. Moving West

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“I have called to God and heard no answer,
I have seen the thick curtain drop, and sunlight die;
My voice has echoed back, a foolish voice,
The prayer restored intact to its silly source.
I have walked in darkness, He hung in it.
In all of my mines of night, He was there first;
In whatever dead tunnel I am lost, He finds me.
My God, my God, why hast thou forsaken me?
From His perfect darkness a voice says, I have not.”–Chad Walsh

Light

Two weeks ago I sat on the North Carolina coast with the sun in my face, the clean ocean air filling my head and my heart and my bare feet grounded in the sand. I was without pain. It was the perfect and oh so rare cocktail of environment, weather and wellness gifted to me a few days during our family vacation. I didn’t take a minute for granted. I scribbled in my journal all the beautiful things that flow from the kind of hope born in pure light. Mary Oliver’s words echoed in the ebb and flow of the waves, “What is it you plan to do with your one wild and precious life?”  

This is day seven of unspeakable suffering I don’t understand.

In the fall of 2013 I had my very first lumbar peritoneal shunt placed after several years of struggling with Intracranial Hypertension. Of all my pain, the brain pressure puts me in bed, holding my head, weeping and even wanting to die. I lose vision in my right eye and hearing in my right ear. On the worst days I am completely debilitated. I knew that shunts, both lumbar and ventricle, are not engineered well and are especially problematic in EDS patients, but I was desperate. The first LP shunt clogged quickly, and I had a revision in February, 2014.  A week after surgery I flew to Arizona to heal. I arrived being pushed in a wheelchair with a large wound just under my ribs where the device was replaced and incisions in my side and back where the tubing snaked around into my spinal cord. I left having hiked over a mile the last day there. It was the most well I’d felt since 2007.

Since, I’ve had another LP shunt revision and a VP shunt placed in my brain that needed revised last April. The brutal Ohio months of January and February were always a catalyst for failure. Escaping to Tucson became a way for me to get relief. Because of planning and executing my first Option EDS – the retreat in May I didn’t plan on traveling west this year, but my tell-tale symptoms of a clogged device escalated. Delaney and I took a last minute, emergency trip in February. My relief was instant. On the flight home we both wept.

The following weeks of drastic weather changes battered my brain. I was more scared than I’ve ever been. My vascular neurosurgeon moved from Virginia to Pennsylvania since my revision last spring. I reached out, and he had me come immediately. March 22nd Dan and I drove five hours to Hershey Medical Center. I was admitted through the ER, and he revised my shunt late that night. The device and tubing were clogged. The next morning Dan asked him how long he thought this one would last. He said maybe a year at best and next time he would have to place a shunt on the left side of my brain instead of the right. It’s too much cutting.  It’s stenosis in the arteries and ventricles. It’s trauma that cannot be healed anymore.  I’ve had six shunts in four years, and there is no real fix in sight.

With thirty staples in my head I returned to Tucson with my dear friend Janet. It was another unplanned trip. I spent my time there seriously considering what I’ve known I need to do to save my life. I looked at schools for the girls. I looked at real estate. I spent the few days imagining what moving there would look like.

Several weeks later, in early May, my family and I and my parents traveled to Tucson together. The girls visited their possible schools and shadowed students that may become their friends. We looked at short and long term housing options. We spent time exploring what we’ve known we have to do to save my life. We put an application in on an apartment even though we felt the multi-family environment may be unstable for my mast cell disorder. We took a step in faith.

The day before we left I received my insurance EOB for my most recent shunt revision surgery at Hershey. The cost is shocking. $145,566.16.

We can’t afford to move. We can’t afford not to.

We flew back into Cleveland on Sunday afternoon. A pressure system was bringing rain. I literally walked off the plane to an escalating headache. I cried. I sat on the baggage carousel and cried.

We can’t afford to move.  We can’t afford not to

In all the preparation for the retreat I also began to ready our home for sale. It’s complicated because this house is in my parent’s name. It was…is a miracle, and we are deeply rooted in these literal four walls. Dan began sending his resume to job opportunities in Tucson. I wanted to ask you all to pray, but I didn’t want to distract from the important work of the retreat. Dan had a Skype interview the Monday of the retreat week. It didn’t go well. He was distraught. I was not here. He became afraid. The girls were absorbing the weight of his emotions. I was experiencing the untold beauty of a calling fulfilled. It was exhausting and exhilarating. I flew home to a storm of doubt and backtracking. The expectation of a plan to relocate so quickly was not easy for Dan. He is a man of faithful doing. He has not hustled or sold himself even once during the last ten years. He’s sacrificed any personal ambition to care for our family. I did not fully realize the kind of inadequacy he was feeling about a job search. The girls and I met and prayed. We had a family meeting and removed the “deadline” date of the beginning of school in early August. I watched my husband reappear just a little. We leaned into our family beach vacation. While sitting on the beach I wrote an email canceling our lease which was to begin June 15th.

We flew back into Cleveland in pouring rain. My head felt like it would explode. It’s been hurting since. The past week has been a testing of everything I’ve said about not cutting my brain open again. I’ve tried every possible treatment. I went to the ER Saturday and asked for IV meds which only took an edge off the constant debilitating pressure. I’ve hid in my cool, dark room and cried out to my God. I’ve been in touch with my neurosurgeon who suggests a large volume lumbar puncture to remove fluid and provide some relief and also give information about a shunt failure. I would have to travel to Pennsylvania for this. I believe I am not supposed to have another surgery.

I received an email from the realtor in Tucson last night. The community we would love to live in is releasing their first lots. There is an opportunity to build a small home with a suite where family could stay or we could host EDS warriors who need to know there is a place they could heal and feel more well. This has been a dream of mine since I began traveling to Tucson. The retreat only reinforced this desire to minister to others in such an intimate and life changing way. In my desperation I wanted to delete the email. I couldn’t even get out of bed. How in the world would we ever make it to Tucson now?

I had a Toradol injection yesterday and began a medication that has helped in the past when my shunt has failed. I am trying to write this clunky post while I can.

My life doesn’t seem wild or precious at all. The long hours curled up in the dark feel like wasted time. What are my days worth?

I spent time with a wise counselor this morning. She has walked every step of this journey with my family and I for so many years. She’s seen the medical costs that could have bought a half dozen homes. She’s seen me heal and even blossom on trips to Arizona and regress when I return. She knows my complete devotion to and admiration for the man who has loved and served my family and I through a decade of doing the faithful and sacrificial next thing. She championed the purpose that grew from my pain and became Option EDS – the retreat. She understands this particular hurt is the one kind of suffering that brings me to the utter end of myself and makes me want to disappear. She believes I am supposed to stay. Today she reminded me of what’s been possible, because we’ve been vulnerable enough to admit we could never do this on our own and then humbly ASKED. This has been no easy thing. Especially for my Dan.

You all have been invested in our story from the very first blog post on Team Danica. You’ve prayed and encouraged and supported and loved us into miracles. This is big. We are ever grateful. I cannot even begin to imagine how God will do this new thing. But I’m asking you to pray. Plead with us for a way in the wilderness. I want the story to have some kind of restoration, celebration, land of milk and honey resolution here in this life.  It may not come.  But the changing of our hearts day by day and the healing of our eyes to really see Him and know Him is preparation for the eventual total healing of my body and our souls forever and ever.  This is Grace.  Our Hope is built on nothing less.

In my crying out today I echo the voice of the one who endured the ultimate suffering for me. We share the same Father who has a perfect plan for our good and His glory.

I feel forsaken. I am not.

I believe. Help my unbelief.

“For from Him and through Him and for Him are all things. To Him be the glory forever! Amen.”–Romans 11:36

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Dear God, (About Laney)

by

LaneyLookAZ

“Be alert, be present. I’m about to do something brand-new. It’s bursting out! Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.”–Isaiah 43:19

Dear God,

I found a letter Delaney wrote to You. It was a gift, because all mamas wonder where their children’s hearts truly lie. I’m loving my girl in a more desperate way lately. Each day is one less I have with her across the hall. I question if I’ve loved her in the right ways, and if I’ve pointed her to You before anything else.

I’ve sat in this tiny corner of the world for so long now. She’s seen my faith in private ways. My open Bible in the morning. Music streaming about You. My knees on the floor at the bench where I go for the crying kind of praying. She’s seen my service to others through piles of letters waiting to be mailed or care packages sitting out until I get them just right. She’s listened to me take phone calls late at night from people I’ve never met, sharing our story, helping them take the next brave step in their own. She sees my eyes light up when I talk about the Option EDS retreat. She’s seen meals show up on days I could not feed her. She’s seen checks come in the mail from all over the world and understood they were Your provision for us through other’s hands and hearts. We haven’t been in church regularly. She doesn’t have the muscle memory of every Sunday worship and preaching. Instead we mostly gather around the living room and have “home church.” She says it’s one of the most special things about our family. I hope she knows the Body of Christ is as big as we’ve been loved, but the local gathering of believers is important and necessary too. I’ve failed her there. I’m sorry.

You’ve cared for her all those times I’ve packed my suitcase and went away. I always left her a letter to find. Surgery after surgery I wrote her as if I might not come back. I never wanted her to guess about how much I love her or how much peace she could find in You if it was time for me to go. You’ve given her a way of moving forward with joy even when things were so painfully stuck here at home. She’s seen me in unspeakable pain. She’s watched her sister suffer. She’s felt her daddy’s breaking heart for it all. And still she gets up and does life with a fierce expectation of good.

Lately I’ve felt the world pressing in on her. I’ve seen her scratch her head about people who call themselves by Your name but do and say things that look and feel so completely different than Jesus did. I’ve had to talk about nuclear war, sexual harassment and abuse, divorce and drugs. I don’t know if I’m getting any of it right. She is thinking about her future. I haven’t raised her to be looking for a husband or dreaming of having babies at fifteen. She knows my greatest calling has been in my role as a wife and a mother. I think this is enough. You’ve given her gifts. I tell her over and over again if she seeks You first all these things will be added unto her.

A few weeks ago I felt Delaney’s spirit hurting. Looking through her eyes I could see how small this cold and snowy street in Ohio seems. I was in so much pain. I was paralyzed with the fear of my brain shunt failing again. You made the way for us to travel to Arizona together. Just my girl and I. She fell in love with the desert. She could scarcely believe how happy and well I was when we were there. We spent every moment together, and it seemed to fill in empty spaces of time we thought we’d lost.

She talks about all this in the letter she wrote You. Moving our entire lives across the United States feels too scary. Four times I’ve left Ohio in February to find relief and heal. Four times I’ve come home knowing I could have a more well life in that place. But I was afraid. She believes us staying here. Me hurting like I am today. Me risking another invasive brain surgery. Me not being able to lift my head some days. Me biting my cheeks to try and hide the suffering. That it’s not the role of a martyr so she, Dan and Danica can have the better choice here. She believes what Dan has always said. She is only as well as I am. Why would I not take the risk to have the best life?

God, It’s true. I’m scared.

On our last hike through the saguaros we built an Ebenezer. “Thus far the Lord has helped us.” I believe You direct our paths through providence and provision. I know for sure with You all things are possible. I want Delaney to see You make the way in the wilderness. I want her to see You doing a new thing.

Give us the faith. Show us the way.

From You. Through You. To You. Glory forever.

Amen

Ebenezer LaneyandIAZ SaguaroShadows

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A Felt Risk. Good Gifts. Paying Attention

by

Fall Bookcase
“Did you ever imagine that what we call ‘vulnerability’ might just be the key to ongoing growth? In my experience, healthily vulnerable people use every occasion to expand, change, and grow. Yet it is a risky position to live undefended, in a kind of constant openness to the other—because it means others could sometimes actually wound us. Indeed, vulnera comes from the Latin for ‘to wound.’ But only if we take this risk do we also allow the opposite possibility: the other might also gift us, free us, and even love us. But it is a felt risk every time. Every time.”–Richard Rohr, The Divine Dance

I’m sitting in my favorite place in the world. It’s not the beach or the Shenandoah Valley. It’s not the Tucson mountains. It’s my worn “nest” chair in the corner of our little ranch in Uniontown, Ohio. It’s chilly today. I have the windows cracked and the screen is still on the open front door. I’m listening closely for the change in the bird songs. The cicadas are gone. The breeze in the leaves has a different tone as if they are saying a sweet farewell to one another before they let go. Five years ago God gave this home to us. Do you remember the miracle? So many of you prayed. It’s the longest Dan and I have ever lived in one place together. There is not a day I don’t utter gratitude for this sacred space. I follow the light from east to west. I know which plants will bloom first and where the cardinals will make their nests in the spring. I cherish the sound of the rain on the chimney flue. I love the old Magic Chef stove that bakes more evenly than any oven I’ve ever had before even though it doesn’t match our other appliances. The seasons change in the farmland around us. The corn is mostly harvested now and the fields feed the geese and birds beginning their journey’s south. Great is His faithfulness. Good gifts. I’m paying attention.

It’s almost time for the girls to get home from school. A dear friend began bringing them every day she can for me. It’s out of her way and takes a half an hour off her afternoon, but she does this thing that saves me anxiety and spoons. It protects my spine and keeps my children and others safe on the days I truly shouldn’t be driving. Last week she grabbed us Panera for dinner on a day we would have eaten cereal. Good Gifts. I’m paying attention.

Lying beside me on the side table is beautiful hand designed letter from a friend who has followed our story since we were on a book launch together. She and I finally met in real life at a retreat this spring. Their family has been praying for us. Over the past decade of hard I thought I’d seen specific kindness in almost every form. Their love is fresh. Dan has been working any overtime he can to help with our always challenging financial situation. This friend’s husband is a physical therapist. He committed to taking at least one extra client a week in solidarity with Dan. They have been sending what he makes to us to help with our bills. Good gifts. I’m paying attention.

I scroll through the texts on my phone to find the one I received Friday from the same friend who flew from Denver to Maryland to drive me around to my most recent appointments. It says, “Booked November 13-17th. Woohoo!” I was confused. I thought maybe she meant their condo at Winter Park. No, she booked plane tickets to come be with me in the hotel after my surgery. I’ve been most frantic about being alone after my operation. Dan has to leave Sunday, the 12th, to return home to work. My surgery instructions clearly say I need a caregiver four weeks post-op. The first few days after discharge are rough because of pain and wound care. I was worried about coordinating rides to my appointment where I’ll be cleared to come home and to the airport, my desired mode of transportation back to Ohio, while trying to keep my spine straight and juggle my things. She will be there to help me. This friend who just fought Lymphoma, who works full time, who has young children with busy lives is the answer to my prayer, “Please, God, I don’t want to do this alone.” The sacrifice is not only hers but her husband’s as well. He will step in once again and hold the fort down while she shows up for me. Good gifts. I’m paying attention.

I spent a few weeks after finding out about my re-tethered spinal cord and needed surgery in grief and shut myself down emotionally. I needed to move through Danica’s sadness about having to adopt Rolo out to a new family and throw myself into making her tenth birthday a kind of redemption for this huge loss I felt personally responsible for. The birthday surprise would not have been possible without the great love of a friend and her daughter who took Danica and I to Columbus for an overnight American Girl celebration. I pushed my body to make a long ago planned trip to Jacksonville, Florida with my family to attend my little sister’s wedding. It was good, but I paid dearly. I had a kind of breakdown last week when I returned. I didn’t move from the bed Tuesday. I had a video session with my counselor, and everything I’d been holding in came rushing out. I hadn’t shared my fear, my sadness or my shame with anyone. Another surgery is incredibly painful for the people I love. I especially try to protect Dan and the girls from how close I am at times to just quitting this fight. My support system has shifted. People I relied on previously have been called away to care for others in their lives. I don’t want to lay even a bit of this burden on their already full plates. I most of all didn’t want to share specifics about the money we need for this necessary surgery to even happen. I want to give everything back tenfold and never receive again. I want my husband to never feel the guilt he experiences when someone else meets our needs, because he has done all he can, and it feels like it’s not enough.

The kind of wound that comes from being vulnerable hurts even when good blossoms from it. My wise counselor encouraged me to once again take the risk to be loved. She reminded me how continuing to tell our story here, allowing provision to come and then paying attention and telling about the gifts, is the place where we change and grow and invite others into this exquisite dance of caring for one another. She reminded me of my ministry of prayer and #pentopaper and beautiful dream of the EDS beach retreat being realized. She reminded me I am giving too.

The girls had off school last Friday. Delaney and I were listening to Adele. She was singing passionately about “Turning Tables.” Laney said she couldn’t imagine a relationship making her feel that desperate or sad. This led into a conversation about the great risk of giving your heart and mind and body to another human being with very little control over their response and their ultimate decision day after day to stay or turn around and leave you. Knowing this we can decide to protect ourselves by never risking, but we would miss the gift, the freedom and the love possible because of vulnerability.

As we talked I realized the writing I do here is a long and meaningful relationship with those of you who’ve invested in us. Shutting down now or becoming informational instead of baring my heart, because it feels too risky, is a little like walking away from the great love of God through you.

I’m ever humbled. I’m opening again to allow the hurt and the healing of this next surgery to expand, change and grow my family and I. I’m stepping out hoping someone shows up and just maybe they will receive a gift through our fleshy bare and trusting souls. Good gifts. I’m paying attention.

(If you would like to donate towards my surgery deposit and the two weeks of hotels in Maryland you can give here and through the gofundme link on the right of this blog. We trust and wait and suffer gratitude.)

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Kingdom Currency. Where Life is Found

by

FamilyCorolla

“We didn’t need our own miracle to believe that God can perform miracles. His word already speaks this truth. We needed His perspective, sown into our inner understanding of Him, to be able not just to witness but to receive the real miracle He was working. Again, it was looking at Him, long and rightly, that was performing miracles. Adoration makes walking with God more than just reacting to a series of externals. Adoration calls the circumstances, no matter how high or low, into proper submission in our hearts. Adoration roots us in a reality that no amount of pain and no amount of blessing can shake. Adoration steadies us. It repatterns our thinking. It centers our lives around a God-man instead of forever trying to make sense of the God-man through the lenses of our circumstances. Adoration aligns us under Him. This is the place where life is found.–Sara Hagerty, Every Bitter Thing is Sweet: Tasting the Goodness of God In All Things

I am sitting in my bed with pillows propped around my braced neck and crumbling spine. I’m in pain. I’m in the kind of pain that makes me bite the insides of my cheeks raw and cry without warning. I’ve done basic hygiene and made my bed. I wrote a note to a friend who is struggling. I answered one text. I drove Delaney to Sable Creek golf course, there and back home, twice today. Driving is the hardest thing I do. I’m done. That’s all I have to give. It’s 4 pm. In my body’s demand to completely stop my mind begins to race.

The tree company arrived next door early this morning. They are still working. The sound of the vibrating machines is almost more than I can bear. Every synapse is firing. I’m so overstimulated I might go mad. It’s the third time our neighbors have had tree work done this summer. Both our homes back to woods. We have one towering dead tree on the hill behind our house. Dangerous branches have fallen during recent storms. It threatens us, but we can’t imagine a time we will have the money it would take to have it removed. We haven’t been sitting on our deck this summer because we can’t bear to look at the dead tree or the bank leading to it without mulch for the second year in a row. We haven’t grilled once because the propane tank is empty, and we don’t allocate the money to refill it. The ‘replace filter’ light is blinking on the thermostat. I’ve added it to a list of escalated things I need to rearrange the budget for. Delaney’s bedroom window is taped shut and literally falling out of the front of the house. We planned to replace it this spring, but there was my shunt surgery, and it never happened. We should not live in a home we cannot maintain. This little ranch rescued me. It saved our family in a hundred ways after living in my parent’s basement. It was a miracle, but it was a stretch. Five years later we are worn thin.

I was hospitalized two weeks ago. After finding out I was in serious adrenal crisis, most likely since my April shunt revision, I began taking a medication I’d used before after surgeries for Addison type symptoms. For some reason it began causing horrific peripheral neuropathy in my legs. I suffered in writhing pain for days until I surrendered to the fact I needed medical attention. The sixteen hours in the emergency room and days admitted there were traumatic. They are always traumatic. Only my EDS family can fully understand how hard we have to fight and how vigilant we have to be with every interaction. With all due respect to the wonderful men and women who give care in these settings, it is a brutal exchange for those of us with a rare disorder, a rap sheet of surgeries and accompanying conditions and a scary list of medications. I was released in less pain but completely broken. I am waiting for an endocrinology appointment while barely dragging my body around.

In counseling I tried to explain this never ending life of ‘fight or flight.’ The financial part of this is as real as the physical. We cannot catch our breath or ‘rest and digest.’ We have reached a point where we must take stock of what we’ve lost, what is owed and seriously consider if this survival mode is sustainable any longer. If it’s not, where do we go?  What do we do?

I quit writing because my old, hand-me-down laptop crashed and died. A new one showed up on my doorstep just as I was needing to create a website for an exciting dream coming true. (I can’t wait to tell you all about it!) Delaney needed golf clubs to begin practice for school and a family we hardly know from Cleveland drove some down to her. Enough. My parents took Danica to shop for her school supplies. A friend texted me to let me know she mailed a gift card to help with some of the other things the girls need. Enough.  At Rolo’s first vet visit last week we found out he has a few health issues. I cried and hyperventilated as she went down the list of medication he needs. Checking out, I had twenty dollars left over after paying the staggering amount we owed. Dan was getting paid the next morning. Enough. A gofundme donation came through as a medical bill escalated in collections, and I could pay it. Enough.   

Our God has been ever faithful. He’s always provided enough. But what if His ‘Dayenu’ is a different currency? Would I recognize this kind of wealth? Would I call it abundance? What if enough is only ever found in knowing and adoring Him?

We had a family ‘come to Jesus’ meeting last weekend. We looked our girls in the eyes and talked to them as straight as we always have. We tempered the reminder of our reality with the goodness of God through the love of so many. We assured them we would be okay, but let them know we are at a crossroads that requires input from each one of us and a lot of prayer. Somehow we came to the question about choosing. If I could choose a fresh slate…all our debts forgiven…a new start for my family or complete healing for myself which would I pick. I answered too quickly. I would choose to set them free. I would take the pressure off Dan. I would have a college savings account for Delaney. I would hear the phone ring and check the mailbox without fear and panic. Even as I thought it I realized how flawed the question was. Either answer would be wrong, because this place of perceived lack is exactly where God wants each of us to be. He is working a thousand things we cannot see in my suffering and in our need. These are fashioned for Dan, Laney, Danica and I in a perfect way to train our hearts to know Him and depend on Him alone. He has been glorified in my pain and in the pouring out of provision over and over again. We are rich in Kingdom currency.

I’ve been living in the Psalms this year, and they have slowly retrained the way I see and know God’s character. I visit them first thing when I rise. Dan makes me coffee. I sit in my nest chair and open my Bible to a book of songs and poetry about God. Tim Keller’s little gem of a book, The Songs of Jesus, has guided me. Several days ago I was in Psalm 86:1-7:

“Hear me, LORD, and answer me, for I am poor and needy. Guard my life, for I am faithful to you; save your servant who trusts in you. You are my God; have mercy on me, LORD, for I call to you all day long. Bring joy to your servant, LORD, for I put my trust in you. You, LORD, are forgiving and good, abounding in love to all who call to you. Hear my prayer, LORD; listen to my cry for mercy. When I am in distress, I call to you, because you answer me.”

Tim ends the devotional with this prayer:

Lord, I am constantly asking You to give me Your strength, to change me and heal me. But nothing is more empowering and life transforming than simply adoring You. Inject the truth of Your wisdom, love, holiness and sovereignty down deep in my heart until it catches fire there and makes me new. Amen.

I’m grinding my teeth as I type. I have to focus to relax my face and my mouth. My neck literally twitches in spasms. It’s easy to stay fixated here, because my pain screams at me. This is when I call out in distress and believe He will answer me, because I know who He is. He is forgiving and good and abounding in love. And He is enough. His Grace is enough. And even this is Grace.  

Kingdom currency.

This is where life is found.  

(Will you please pray for us. We feel pressed to make some kind of change. We need wisdom to know each next thing. Please pray for my health. I have chemo next Tuesday, and I will see the new endocrinologist in several weeks. Until then I have to keep functioning. Please pray for Danica. Her scan and neurosurgeon appointment in Baltimore are on the 15th. Her neck has been hurting her. I rubbed it last night as I tucked her in and felt the all too familiar lumps of knotted muscle around her hardware. She is so hopeful for most of her restrictions to be lifted before school begins. Something in my gut says this is too soon. It will break her heart. Please pray for Dan. I see him crumbling in a new way. We have always stayed close in our hard, but this feels different, and we are both struggling to connect. Please pray for Delaney. Oh how I wish I could make this different for her somehow. Her compassion and empathy has grown. We talked candidly about her personal faith yesterday, and it reminded me again of all the soul business God is doing in what looks like a hot mess from the outside. I have to trust Him with the most precious currency, the hearts and lives of my husband and girls. Our Hope remains.)

Photo by Audra at 12th Street Portraits

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When All Else Falls Away. A Team Danica-Monica Update

by

Winterlight

There is a poem titled “The Invitation” by Oriah Mountain Dreamer. (Totally made up name or hippie parents!) I have loved it since college and lean into the last few stanzas over and over again,

” . . .It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.

It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.

It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away. . .”

Everything is packed. Danica is tucked in her own cozy bed for the last time before we step out the door into the unknown. We prayed with our fingers laced together and tears running down my face. “God, bring us back here to this place.” I told her how I take a mental picture of my bed and my room in my sanctuary, and it becomes the thing I fight to get back to when I am in the hospital or hotel after. When I think I’m too far into the pain or the trauma of all these trips and all these surgeries I think of home.

I am weary and bruised to the bone. My recovery has been slow. I know the stress of the fire we are headed into is part of the reason my body has resisted rest and healing. My cervical spine continues to spasm, but the searing pain is below my fusion rod in the thoracic spine. It is learning to hold my body and sustain all the movement I need.

Our entire family has moved back to survival mode. This is something we know. We understand these relationships are built on something stronger than good days. We have loved one another through very hard times before. As we move towards Danica’s surgery on Wednesday morning EVERYTHING ELSE FALLS AWAY. What will sustain us THIS time?

I read these beloved verses from Deuteronomy this morning. “This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now CHOOSE LIFE, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life.” My heart was hard and there was a root of bitterness. This powerful message dug it up in one big chunk and then watered my parched soul. We will keep choosing life. He will sustain us.

Your outpouring of love is part of His plan and purpose in our lives. Thank you. Your cards and gifts and continued donations to our family are sometimes the way He reminds us, especially on really bad days, He has not turned away. Your faithfulness mirrors His faithfulness.

We are humbly asking you to be prayer warriors for us. Please pray for travel mercies tomorrow as Dan and Laney drive the turnpike to DC. Danica and I will fly direct from Akron-Canton to Reagan. Our hope is the easy security, no luggage, close gate and one hour flight will save spoons and cause much less pain for Danica and I’s necks. Please pray for our last night together as a family for quite some time in the hotel in Baltimore. Please pray for Dan and I to grow closer not apart. We both have a hard edge about us today. It’s difficult to be so wounded and know we are heading to allow wounding to our daughter and not lash out or pull back. Please pray for Delaney as she visits family, comes to see Danica post-op and returns here while we stay on. She has such a brave face, but we’ve been leaving her and sending her away since she was four years old while I was fighting to give life to Danica. It’s a painful reality, and she’s conditioned her heart to protect it.

I checked my email tonight. I found the promotions tab which was emptied yesterday full of 405 Black Friday sales sent today. What if there is nothing in this whole wide world that matters except your little girl making it to one of the best hospitals and two of the best neurosurgeons in the world and surviving a rare and difficult brain and spinal surgery? What if all you want is to see her through this…out of danger and out of pain…back in her bubblegum pink room with “Sleep Sound in Jesus” playing her to a peaceful and comfortable sleep? This is when ALL ELSE FALLS AWAY.

I’m going to crawl into my bed now. I’ll play my hope playlist and try to sleep a little. I’ll try to pray a little too.

“Father God, Love us as a mother loves her children. Pull us to your breast and give us comfort and rest. Hold our hands and our hearts in this hard and bring us through the gauntlet to give you praise and glory. By Him. For Him. Through Him. Amen.”

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Morning Prayers. For Dan. A Team Danica-Monica Update

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Dance2

I love to slip out of bed when my husband and girls are still sleeping. Tucked under warm covers with their precious heads cradled in soft pillows, I watch their bodies rise and fall with sweet gift of breath. I see their faces relaxed in perfect peace. I quietly sneak out to a mostly dark living room and settle in my nest chair with a steaming cup of coffee. My chunky throw is wrapped around my legs, and my dear Twixie pup is snuggled beside me. I watch the night become day as light slowly rises in the east and in perfect quiet I pray.

I pray for my Dan, lover of my heart, my mind and my broken body. He cherishes me like Christ does the church. He is the man who says, “Whatever is happening to you is happening to me.” When I returned home from my Maryland trip last week we sat on our bed looking at the calendar trying to make sense of the days to come purely from a logistics stand point. At first it seemed it was truly impossible for him to come to Maryland this week with me. He wept. He said, “You know you’ve reached rock bottom and are a failure as a man when you cannot be there when your wife goes into major surgery.” Many times before we’ve made Dan staying here with the girls the priority. He needs to work. The girls need continuity and the comfort of one parent being present with them. Now, more than ever, it is difficult to leave Danica. The situation with her neck is precarious, and she fell and fractured her wrist and elbow last Saturday. There is something about this particular operation, the bigness of it and my own anxiety, that makes Dan want to be there more than usual. We’ve made a plan. Dan will drive me to Maryland Tuesday and be there forty-eight hours to make sure I come out of surgery okay, and then he will rush home to Ohio. Yesterday, I was sitting here in my usual place of morning ritual, and he brought me a #pentopaper card. He knows I’ve been doubting the value of fighting any more. He reminded me of my own vows. “If I do nothing else but love Dan, Delaney and Danica well it will be ENOUGH.” He reminded me of the deepest parts of myself, my love for others and my good God that transcend this brokenness.

Father God, If there was no other evidence of Grace in this life, the abiding love of my husband Dan would have me completely convinced. You see how he is hurting. You know the shame he feels when we once again have to beg others for provision, as if any family, even a wealthy family, could have carried such a heavy financial weight for this long. Encourage his heart by each gift of support. Help him to find joy in the love we continue to receive. Help him to know his wife and children, those who are giving and especially You do not see him as inadequate in this regard. Please give him strength in the days and weeks to come. He is a servant leader in our home. Help him know the groceries and the laundry, the cleaning and the yard work and the care he provides the girls and I are not small things. They are a living sacrifice. Protect his body from illness. Please give him mental and emotional strength to move through the drive to Maryland, the long waiting during my surgery, the seeing me in such a wounded and pain filled state, the hard drive home alone and the many days here working and loving on our girls while I am away. Help him know for sure You love him and have plans for a future and a hope. Amen.

Dave Matthew’s “Steady as We Go” is one of the love songs on our life playlist we slow dance to in hard times. It is exactly the way my Dan loves me.

I’m pushing over the next forty-eight hours to do all the things a momma does before she leaves her family for two weeks compounded by the fact I will be in great pain and recovering when I return. We have exactly six weeks between my Wednesday, October 19th surgery at Doctors Community Hopital in Lanham Maryland and Danica’s Wednesday, November 30th surgery at Johns Hopkins in Baltimore Maryland.

We are grateful for your great love for us. It is God making a way. Many of you have asked how you can specifically help in other ways. There are needs. After my surgery I will form a private facebook page where we can post how and when we need help and you can respond in kind.

Our Hope remains.

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When I Simply Cannot Pray. Help

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hospital

Some mornings she simply cannot
bring herself to pray. Even so, a prayer
will at times break through her clenched lips,
announcing the slow drain at her heart.
She will raise her face from its cage of fingers
and gape at the fog that has lain itself down
over the field behind her house like
a dream of erasure. Even the green trees have
lost color. No air breathes. Not a wing of sound
flies back from the highway behind the hill.

And then some midnight, when faith
has quite emptied itself, a familiar loneliness
makes itself at home under her ribs.
A ghost of God? An inkling? She holds
her breath, listens as a small draught
weathers its way through the eaves,
into her ears. The next moment she hears her child
stir in the room down the hall, calling
her name, as if (s)he names her longing and in
that naming, names a kind of answer.
–Luci Shaw, The Angles of Light

I texted a friend last night. “I’m losing my religion.” Yes, full blown, Michael Stipe singing in the background, losing it.

“Oh no, I’ve said too much.”

It was day three of a new round of plamapheresis slowly emptying the flaring infections attacking every part of my body and brain. It is always grueling. I arrive early to have labs drawn. It takes a few hours for the numbers to come back. Twice, last Thursday and today, my treatments have been cancelled because my fibrinogen is too low. The hospital where I receive treatments is in a major shift in their dialysis unit. It’s left them with only two nurses who know how to run the machine I need. My usual nurse leaves tomorrow for a long vacation and the other nurse is off all this week. We were trying to cram five treatments that should be given every other day into less than a week, and my body appropriately screamed “No way!”

As Dan was driving me back to the hospital yesterday I was on the phone with Cincinnati Children’s confirming what scans Danica will be having next Tuesday. Realizing my last pheresis will be Monday, the day before we take this oh so hard trip, I was already unhinged. The head ortho nurse looked back in the spine conference notes and said it indicated a CT angiogram that had not been ordered. Trying to get this scheduled at the last minute is nearly impossible even at the main campus much less at the Liberty location where our other scans and appointment is. She said she would work on it and call me Thursday. Yes, this is how things happen in health care. There is clinic and surgeries and other people’s children in the balance. I learned long ago how to walk the delicate line of being a strong advocate and also a compassionate patient. When my daughter is in the exam room or on the OR table I want others to respect and care for us too.

When Dan picked me up several hours later I was ashen, freezing cold in 80 degree heat, crazy nauseous and tired and never more aware of how hard all this is. Anne Lamott writes in her treasure of a book, Help, Thanks, Wow: The Three Essential Prayers, “If I were going to begin practicing the presence of God for the first time today, it would help to begin admitting the three most terrible truths of our existence: that we are so ruined, and so loved, and in charge of so little.” Yes. This.

I am ruined. My body failing me over and over again in countless ways is the ultimate betrayal. It’s never been about believing God can heal me. It’s surrendering to the fact it will not fully happen in this life. There are some victories. The fight is not in vain, but I have to put out a white flag on this complete healing thing. In eternity, yes. Here, no.

I am loved. So loved. My friend who takes me to treatment and comes to get me whenever she can is love. I don’t call her. She calls me. She knows the asking is my Achilles heel. Her calling her son-in-law to help when she can’t is love. Him coming on his precious day off is love. The same friend’s husband buying our favorite Stouffer’s frozen enchiladas while he’s shopping is love. The expression on his face when he sees me and the wisdom in his words, “There’s nothing I can say,” is love. Another friend showing up with an unplanned meal on a day our family was near implosion is love. Tuna casserole can in fact be manna. A package in the mail with epsom salts, unscented lotion and herbal tea and #pentopaper encouragement is love. A friend showing up with food, pet meds and a check from a lemonade stand her sweet girls had to help with Danica’s trip is love. All your donations on our gofundme site are scandalous love. Your prayers, especially when I just cannot pray for myself, are love.

I am in charge of so little. Really, nothing. I can’t orchestrate the rest of this treatment and plan rides to and from even if I asked for help. I can’t predict exactly how our Cincinnati trip will go. Both outcomes of these scans and appointments are worse case scenarios. I can’t tell Danica it’s all going to be okay and soon she will be able to run and play. I can’t ease her very real fears about the future of this broken metal in her neck that once gave her a miracle. I can’t keep my Laney safe while we are away or heal any of the scars leaving her over and over again all these years have left on her heart and mine. I can’t pay our bills. I can’t stop the constant swirling spreadsheet of debt from cutting off my air supply and sending my body into a stress induced panic every time the phone rings or the mail truck pulls away. I can’t go back to work to try to fix all this. I want to work so badly. I want the prideful, self sufficient feeling of doing anything to make this less of a mess, but I can’t. I can’t give my husband the one thing he wants more than anything in the world–his Moni Kaye back. Worst of all, I simply cannot pray.

After my family was in bed last night I slipped into the pitch black sun room, laid on the cold floor and called the friend I texted earlier. She is always my place to tell the whole truth. I cried. I shook my fists. I told her how mad I am. I told her how I really want to give up. In the same breath I had to talk about the love. I couldn’t not mention the love. Something happened. In Anne’s same book she calls it a “divine limpness.” I was saying all the things to my friend I wanted to get on my knees at my prayer bench and say to my God.

“…In that divine limpness you’ll be able to breathe again. Then you’re halfway home. In many cases breath is all you need. Breath is holy spirit. Breath is Life. It’s oxygen. Breath might get you a little rest. You must be so exhausted…

Through prayer, we take ourselves off the hook and put God on the hook, where God belongs. When you’re on the hook, you’re thrashing, helpless, furious, like a smaller kid lifted by the seat of his pants by a mean big kid. Jesus, on the literal hook of the cross, says to God, ‘Help,’ and God enters into every second of the Passion like a labor nurse.

When you get your hooks out of something, it can roll away, down its own hill, away from you. It can breathe again. It got away from you, and your tight sweaty grip, and your stagnant dog breath, the torture of watching you do somersaults and listening to you whine ‘What if?’ and ‘Wait, wait, I have ONE more idea…’

You can go from monkey island, with endless chatter, umbrage, and poop-throwing, to what is happening in front of me. God, what a concept. It means I stop trying to figure it out, because trying to figure it out is exhausting and crazy-making. Doping it has become the problem.

So when we cry out ‘help’, or whisper it into our chests, we enter the paradox of not going limp and not feeling that we can barely walk, and we release ourselves from the absolute craziness of trying to be our own–or other people’s–higher powers.

Help.

We can be freed from a damaging insistence on forward thrust, from a commitment to running wildly down a convenient path that might actually be taking us deeper into the dark forest. Praying ‘help’ means that we ask that something give us the courage to stop us in our tracks, right where we are, and turn our fixation away from the Gordian knot of our problems. We stop the toxic peering and instead turn our eyes to something else; to our feet on the sidewalk; to the middle distance; to the hills, whence our help comes. Something else. Anything else. Maybe this is a shift of only eight degrees, but it can be a miracle.

It may be one of those miracles when your heart sinks, because you think it means you have lost. But in surrender, you have won. And if it were me, after a moment, I would say, ‘Thanks.'”

I hung up the phone, wiped my eyes and blew my nose. I peeked into my girl’s rooms on my way to bed. I remembered my Danica’s prayer, the one I was almost too jaded to hear, “Dear Jesus, Thank you for this day. HELP mommy to get her treatments and to get better. THANK YOU for my friend’s lemonade stand to raise money so I can see my doctors in Cincinnati. THANK YOU for my stuffed peas in a pod. (A gift from her friend she held tightly as she prayed.) Help grandpa and grandma to get home safely. HELP Anna Mae at her new home. THANK YOU for Jesus who died on the cross for our sins. HELP us be more like Him. Amen.” (This is a variation of her same bedtime prayer every night.) Her childlike faith and Sleep Sound in Jesus lullabies tucked her heart and mind safely in when I could not.

I crawled into my own bed, put my earbuds in and listened to R.E.M.’s old song “Losing My Religion.” I was transported back to the summer I saw them in concert at the Gund Arena. I was so far from God but wanting Him and needing Him so badly it ached. I held up my lighter during “Everybody Hurts” as tears ran down my face. Even then I know He heard my “Help.”

This morning Dan and I left our house at 6:30 am so he could drop me at the hospital for labs before he headed to work. A few miles down the highway I felt utterly sick, and we took an exit so I could run into a McDonalds and empty my stomach of the curdled worry and grief I’d ingested the night before. After the needle and the many tubes of blood I waited for hours to get the results. The director of dialysis found me in the sixth floor waiting room. She felt so badly about their staffing issues pushing me to come on days I clearly was not going to be able to proceed. She told me she called the nurse who was on vacation locally. Her daughter had a baby, and she took the week off to help her. She would come in Thursday to get another treatment in. I cried. More love. More thanks. I called my sister, Alecia, who has managed more nonsense in the past week than any one person should have to. I said, “I’m sorry. I need HELP. Can you come get me?” She rallied her girls, got them dressed and drove the twenty minutes to pick me up. I sat in the light filled atrium waiting. I turned my face towards the bright sun, and the Spirit groaned for me what I could not utter and then I said,

“Thank you.”

Amen.

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”–Romans 8:26

atrium

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

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

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

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

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

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

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

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

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

Prayer Bench

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

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

A Prayer By Sherry Larsen

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

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