Love letter to my Dan

My prince,

I have two appointments at different Cleveland Clinic specialists in separate locations next Monday.  I didn't have a plan for who would drive me.  I made arrangements for the girls after school . . . kind've.  I already have a friend who graciously offered to take a day off from her job to take me to Toledo this Friday to give you a break.  I have to go back to the doctor early tomorrow morning because I can't quit coughing.  I have hematology tomorrow at 1 pm.  The appointments next week are for treatment for the searing pain in my abdomen, so bad today I can't get out of bed, and my colon hanging out of my butt.  Neither delicate issues are something a husband wants to think about or talk about or hear about, but they are slowly strangling me.  You know this.

The thing is I need YOU.  For some appointments I need YOU.  It may have seemed a simple thing to repeat again to me because you've said it before in these long years of juggling all this.  Last night it took my breath away.

"I don't care about my job.  
You know what I mean.  
Of course I do, 
but I promised myself I would always do what you or our family needed first.  
If they let me go they let me go.  
You come first, Monki." 

I was laying here crying.  It happens at least once a week.  I stop trying to be brave and open the flood gates with you.  You let me say the same things over and over.  I tell you how much it hurts.  I tell you how I can't do this anymore.  You listen without saying anything.  Then I wipe my tears, blow my nose, and I try to make a plan for the week together with you.  I go over the appointments, the money that isn't there, the girls and who will watch them.  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 have faithfully worked there for five years.  You have never once complained about how you are stuck in a job that is way too entry level for you.  You never grumble about how you cannot explore other options or even seek promotion there because you have had to take off so much time for Danica and I over the years, often without any notice.  They have been so good to work with you.  You have always offered to make up your time or work overtime, but it doesn't change the fact your family has had to come first and any personal ambition or desire for success has not been an option for you.

No one here really knows the Dan I first met and fell in love with.  The manager.  The Inner Circle award winner.  Your life with the trips and recognition.  The bonuses and stability.  The social network.  The friends.  Golf.  Your boat.  Your motorcycle.  Things that made a life outside of what I was to you.  I have seen you sacrifice everything.  At first it was so I could go back to my career.  I was so selfish.  You stepped back so I could succeed.  My pride almost ruined our family back then.  God's Grace . . . your grace saved us.   I have watched you sell everything down to the most humbling day when I gave you my beautiful diamond solitaire in the red and gold box.  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 fairy tale or real life about a man who loves like you do.  You are constant service and sacrifice for the girls and I.  A woman recently visited me and was comparing 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 even though I have betrayed you before.  You forgive me over and over again.  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 you to be out on the water and see the Washington Monument in the setting sun and remember what it is like to feel really free.  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 run such a perfect home.  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 don't let yourself fall asleep until the laundry is out of the dryer and folded.  You run the vacuum, make the girls a bedtime snack 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, which you know I love to do, 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 birthday parties and shopping and every endless outing moms have to make, because 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 play Polly Pockets on the floor when your favorite football team is on TV.  You do art and homework and ride bikes and tuck kids in when I should be doing all those things.  When I want to be doing all those things.  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 it is like I am breathing gratitude for the only earthly thing I know has sustained me during this journey.

I read back over this blog and my journals before that and see the love story He is writing.  I know we quit looking for the reasons 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 waves this long and not turned and swam to save themselves.  You were made for me.  You were made to love Danica and Delaney.  Every part of your life until our life began made you ready to be the man you are.

The sun in shining in the window in our home in our room, and I thank God for this day, this place, this love.  Our Hope remains, Dan.  It does.  It has to.

Monica Kaye

Photo by Christina Adam of Grace Designs Photography.

Five things God wanted me to know today

Source: flickr.com via Rinnie on Pinterest

I've been drowning.  I've been sinking in the cold dark abyss of pain and fear and doubt.  I thought in pride in might never happen again, but it did.  I've wanted to slip away and make it all end.  Saturday, the sun was shining, the birds were chirping and my beautiful, healthy and happy girls were riding bikes just outside the open window with my prince, Dan.  I sat here wondering how I could make sure they would be okay if I just couldn't be.  No amount of gratitude or positive energy or Scripture or hymns or spiritual songs I could will into a prayer changed the paralyzing depression.

A friend who I rarely see messaged me, "Can I come by at 4?"  She brought me a big rock.  It is engraved with the word "HOPE".  Of every single person I have known in my life she is the one person I could tell how I was feeling.  She had been there.  Before I ever knew her my mom and dad visited her in the hospital when she tried to die. They had taken her a picture of Dan, Delaney and I.  My mom told her about me.  How I had wanted to end it all too when I was about her age.  She told her how God saved my life and how He redeemed me from sadness.  Exactly five years ago I finally met this twenty-three year old mess of a girl, and I became a mentor of sorts.  God has rescued her in almost every conceivable way since and is making a beautiful trophy of her.  He also made her my friend.  He moved her to visit me when she did and to bring me a tangible life raft to hold.  I love this.

I've been wrapping myself in Truth and Grace since.  If you've been here you know when your lungs have filled with so much water and you have stopped breathing from the pain the journey back to the safety of shore is slow and arduous swimming.  If this was just a spiritual journey for me or a psychological one or even a biochemical one perhaps it would be easier, but I am physically broken in so many ways that I can truly only float some of the time and pray the waves are headed toward land instead of deeper into the sea.

I read this today while hanging on.  It is a blog post written by singer, songwriter and author Andrew Peterson titled Five Things I Want My Children To Know.

1. The world was good.
When you walk outside, breathe deep and look around. Think about the air in your lungs. Think about air. Think about lungs, expanding and contracting. Think about the gravity that makes walking possible. Think also about the difference between inside and outside: we tend to dwell in structures with walls and ceilings because we are comforted by boundaries, by order, by knowing our place in the world—but then we walk outside and move about on the surface of a planet with nothing substantial overhead, nothing but atmosphere between us and billions of miles of space; this is our home: order, boundary, place. In this world where we live, there is air to breathe, earth to tread, light to see, and wonder to last your whole life if only you stop to consider the simplest, most abundant beauties around you.

2. The world is fallen.
There’s a secret your heart knows. It has known for a long, long time, though you may not have told a soul. The older you get the more you will feel it, the more you will see it in the eyes of your friends and family, and in your own eyes when you look in the mirror, the more you will understand why Jesus had to die. Here is the secret that everybody knows: this beautiful world is broken. Something is wrong. People hurt each other. People hurt themselves. Sometimes you feel afraid and lonely. Know that everyone, from the President to the janitor to your parents to your friends to the kings of distant lands, everyone that has ever lived—knights of the Age of Chivalry and samurai warriors in ancient Asia, servants and spies and soldiers and singers, preachers and authors and plumbers and pyramid builders—everyone has felt the same. You are not alone in your loneliness.

3. The world will be redeemed.
We need rescue and God is the only one who can do it, the only hero able to complete the quest. Jesus lay in the tomb as dead as a doornail—and then he woke and kicked down death’s door. Light burst forth. Believe that! Notice the way your heart leaps at the thought of it! The clock is ticking down to the last sad heartbeat, the last flash of anger, the last dark thought, the last selfish impulse, the last cruel word, the last broken heart, the last weeping baby, the last dying mother, the last wicked laugh—and it is Jesus who waits at the gate astride his warhorse, watching for the Father’s signal, ready to gallop out of the skies at the head of his angel army to set us free forever. The world will be redeemed.

4. You are broken.
But until then, child, understand that you need Jesus. You need him because your heart is under construction. But from the moment you invite Jesus into your heart, the song of your life is written into the symphony God is composing. Every bad decision, every stray word, every sinful thought laid on the altar of his love becomes a shadow in a beautiful painting, a dark tone in a beautiful song, the conflict in a good story that propels the character toward the joyful ending. This is complicated. To remember your sin is to deepen your gladness that God is good. And that is the final thought.

5. God loves you.
The Lord of Life, the maker of lightning, lions, mountains, tides, moonlight, meteors, the vast silence of the stars, and the music of laughter—the one who not only spoke it into being but whose good pleasure alone binds every molecule together—that is the God who loves you. He loves you. He loves you (somehow!) even more than I do, and that’s saying something. You will spend a joyous eternity exploring the mountain of that truth. Lean into it, believe it, delight in it. Now walk outside, breathe deep, and look around at the good world. Notice the ache in your heart. Remember the resurrection. Be humbled by your helplessness. Remember the kindness of the King.

Now, rejoice.

Thank you, God,  for making joy possible for me through these timely words.  Continue to deliver me from this fallen world and my own brokenness and help me to see my Redemption is finished and Your love for me is always sure.  

Desperate Warrior

Source: google.com via Pam on Pinterest

It would be very helpful to write out the details of the past week, but I can't because the pain and pressure in my head is so insane I feel like vomiting just trying to look at this screen.  I suffer from what we know are high pressure headaches.  Early in the week they were off the charts.  My doctor worked with my neurosurgeon to arrange a therapeutic lumbar puncture locally on Thursday.  I experienced great relief initially, but I woke with a horrible headache yesterday morning, and it has increased in intensity today.  It is hard to know if this is pressure building again or perhaps side effects from the tap.  I know I should go to the hospital, but Dan is working today and the girls are at church with my mom, and I just want to have NO intervention.  I want all this to GO AWAY.  I am very emotional.  I am frantic.  I am having hopeless thoughts.  I feel like I can survive almost anything but not this headache one more day.  I searched the internet and strangely enough people have shared these same feelings post LP.  Apparently this is one of the worst headaches you can possibly endure.

Dan gave me affirmation this morning as he left for work.  He glanced at my back while I was changing and said, "You are a warrior.  That's why I married you."

I'm wounded and desperate.  God, please, help me get through this battle today.

Morning certainty

Source: society6.com via C on Pinterest

"We say, then, to anyone who is under trial, give Him time to steep the soul in His eternal truth. Go into the open air, look up into the depths of the sky, or out upon the wideness of the sea, or on the strength of the hills that is His also; or, if bound in the body, go forth in the spirit; spirit is not bound. Give Him time and, as surely as dawn follows night, there will break upon the heart a sense of certainty that cannot be shaken."  Amy Carmichael

"Yet this I call to mind and therefore I have hope: Because of the LORD's great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him." The LORD is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the LORD." Lamentations 3:21-26

On running and crying and being quiet

Source: google.com via Neely on Pinterest

One of my favorite roads in the entire world is the George Washington Parkway headed from the beltway into Washington DC.  I love winding along the Potomac toward so much history.  When Dan and I first met he kept a boat with his brother by the Washington Monument.  So many times we drove with early evening sun, perfect air and weightless feelings ready for a night on the water.  The most beautiful stretch is across the river from Georgetown where the road snakes alongside the running and bike trail.  No matter what life someone lives they are free in motion on this path.

On my trip to Maryland early this month I rode in a taxicab from my appointment with my neurosurgeon in Chevy Chase to Reagan airport.  I was exhausted.  I was overwhelmed.  I was suffering physically.  I slumped in the backseat with my body turned awkwardly in my seat so I could look out the window.  I saw a woman who appeared to be my age with a lean and strong body moving fluidly through time and space.  I wanted to be her.   "God, please, just for a moment let me be like that again with a heart pumping blood through beautiful veins and muscle and connective tissue supporting every instinctive step."  I was jolted from my prayer by the voice of the driver asking, "What do you do?"  I had to think for a moment about what he even meant.  "Ummm, I used to be in real estate marketing when I lived here . . . I am a married . . . and a mom . . . and I'm here because I am a patient."  Yes, really that is who I am.  I'm a sick person.  A tear fell down my cheek.

I have been very quiet here on the blog.  Sometimes I think if I stop talking about how sick I am it will disappear.  I used to preach a "fake it til you make it" kind of message.  This is what strong people do, right?  I feel like so many of you have a stake in my healing or at least in me getting some better.  I just want to talk about all the ways it really is better and not the new ways it is even worse.  I cannot seem to share in the same post with nitty gritty details the way it hurts.  I have lost the ability to look someone in the face and tell them the truth about all this.

So here's a rundown from most critical to maintenance issues:

1.  I have a burning lump growing in my abdomen on the left side where the mass was removed in late August and the large hematoma was removed a week and a half later.  It has gotten so bad in the past week I cry.  I know it's bad, because I don't cry anymore.  Ever.  I wonder if I am bleeding internally or if it is just the wicked endo growing something new.  I have an appointment on February 28th with the Cleveland Clinic surgeon who removed the endo from my bowels in March of 2011.  My local surgeon who performed laparoscopies, my hysterectomy and most recent endometrioma and emergency hematoma surgery won't operate on me any more.  I am beyond his experience and have too many risk factors.  I can't wait.  No pain medication will touch this.  It's my body throwing up red flags.  I am planning to go to the ER sometime this weekend because Dan wants me to.  He doesn't understand why I don't want to rush into getting pictures of what is there.  Perhaps they can scan me and tell me what is wrong.  Maybe they can give me an hour of pain relief in exchange for me winding through the nauseating triage, health history and gasps and sighs at what a tough road I've traveled.  What can they really do though?  My mom is gone out of town.  The girls are off school Monday.  It's just stupid.  Yep, I said the "S" word.

2.  I have increasing pressure issues.  There is nothing that gives me relief when I have an episode.  My neurosurgeon wants me to return to Maryland for a therapeutic lumbar puncture and to discuss the possibility of a shunt.  Thursday night I thought my head would explode all over my bedroom.  I am not sure I can travel to Maryland for my March 14th appointment.  The alternative is to find a competent doctor here to do an LP and measure my pressure under imagery because my spine is well, to put it mildly, a mess which makes this riskier than usual.  I have also increased my dose of Diamox, a glaucoma drug used in patients with symptoms like mine.  It often helps for a few days and then my pressure increases again.  I'm not seeing any real relief.  The Ohio weather is a constant barometer for my pain.

3.  My iron levels are crazy low.  Of course there could be lots of "real" reasons for this like an absorption issue which is common with EDS patients, or bleeding somewhere internally or lets say rectal bleeding from a prolapsed rectum.  The hematologist in Maryland prescribed a super duper supplement as a last ditch effort, and it caused side effects which in turn made a bleeding issue worse so I am set to see a local hematologist on Tuesday for an infusion.  I have to get it to 100 and keep it at 100.

4.  I'm already too tired to make any more points but there are plenty.  I have a bleeding disorder confirmed by extensive genetic bloodwork.  I have an appointment at Cleveland Clinic the morning of February 28th for a platelet flow cytometry which further isolates the granules.  I am amazed as I study about this particular MTHFR gene how many things in my medical past are explained by and related to this.  I would urge all my EDS friends reading to take the time to see a hematologist who understands EDS and the related bleeding and clotting disorders.  If you are young and plan to try to have children this is particularly important.  It could save you much grief from multiple miscarriages and trauma to the baby and sac from bleeding and clotting.  My gynecological history is screaming for someone to diagnose me and still no one thought to do these tests.

5.  I will begin wearing a back brace to add stability to my thoracic region and seek to avoid more spine surgery for as long as possible.  I will also begin regular physical therapy to try to strengthen this area.  I do not do well with PT.  Even the gentlest stretching and manipulating send me into a pain spiral.  The actual effort it takes to get ready and go to the therapy wipes me out for the entire day.

6.  March 1st I will finally see the oh so esteemed cardiologist in Toledo about my POTS.  It's been a year and a half since I was placed on his waiting list.  I'm hoping he will shed some light on not only the POTS but my other chest pain and symptoms and pectus.

Is this what happens?  A writer is reduced to bullet points to tell her story?

Yesterday my girls were off school.  I was in crazy abdominal pain and had that horrible "hangover" feeling from the beating my brain took from the pressure the night before.  Still, they wanted play dates so badly.  We never have people over.  They are not invited to others homes much either.  I am just not active at school or church.  I don't know many of the moms of their friends.  I can't offer to pick up and drive days in advance because I have no idea if I will be able.  Delaney and Danica are loving and understanding.  Our family of four is our special Sanctuary.  Not a day goes by one of us doesn't just exclaim how thankful we are for this house and the privilege of living here together.  Still, they are both at the age when forming community is important.  Dan and I don't really remember how to do this.  Yesterday, I really wanted to try.  I drove to my doctor for a prescription and to have them copy reports from other doctors.  I took Danica to her friend's house for a play date.  Delaney and I drove across town to pick up her friend to come here and hang out.  Plans changed and Delaney's friend ended up staying here until much later because they were having such fun just hanging out.  I got Danica tucked in and Dan was urging me to pack up and head to the hospital.  By the time Delaney's friend's mom came to get her I was barely able to form sentences.  I think I acted pretty weird at the front door.  I hadn't taken any meds yet.  I don't treat my pain if I'm with my girls, I have to drive or if other people are here.  If you haven't noticed I have a real issue with treating my pain.  Ever.  I knew I had smiled and acted fine, but I don't think my awkward sentences were real conversation.  There is no way to explain to people you have just met how completely broken you are.  I watch these ladies work and volunteer and make cupcakes and take each child to their sports activities and attend games and drop off and pick up and have girls night out and Bible studies with their friends, and I did one afternoon of just a taste of that, and I could barely stand.

It's Lent.  A season of specific heart searching and surrender to my Savior.  I go through the discipline of my devotions and know my heart is lukewarm.  I can't circle back in this post to some grand statement of faith or declaration of hope.  I want to run.  I want to make myself cry not from pain but from my heart and offer my soul ache in lament and nothing comes.  Perhaps I need to be quiet a little while longer.

Hiding and writing a little over here . . .

I know I'm long overdue for a post about my health and my trip to Maryland this week and next steps for me in managing and treating my diagnoses.  I've been hiding out for quite a few reasons, the best of which is a ministry God planted in my heart five years ago.  You can read about "Angie's Room" on my new blog dedicated to this calling.  I promise I will write here soon.  Our Hope remains!

First world prayers for third world children

“Adoption is a beautiful picture of redemption. It is the Gospel in my living room.”
― Katie J. Davis

 

One of the scariest and most sincere prayers I have prayed in my life happened in early 2007.  It was the last time everything was really almost "perfect" in my life.  Dan and I were so happy.  We were financially secure.  I was working at a job I loved.  Delaney was thriving in an amazing Montessori.  We were finally trying to have another baby.  On top of all this we were in a position to give to others.  I had a yearning in my heart for a missing community of relationships and especially a closer walk with God I had neglected during some very selfish years.  I asked God repeatedly to enlarge my territory. 

 

If you have been reading this blog the past almost three years you know the story well.  In February, 2007 I became pregnant with Danica.  I lost Danica's twin in March.  I lost my job in late April.  Our lives became completely changed by circumstances and especially my health.  Looking back I see God specifically working to answer the above prayer for my heart and life.  I was wanting to become open to something so much bigger.  I really did desire Kingdom work.  I wanted a front row seat to soul business.  I never could have imagined how He was going to rock my world.

 

As I've written about our tiny little life here our "territory" has grown in leaps in bounds.  We have people from all over the United States and the world who have faithfully prayed for us and loved us.  With the expansive world wide web it is easy to get distracted and frenetic in our prayer lives and confused about what God might really be leading us to use our energy and resources for to make a difference.  I think this is one of the reasons I have been stunned over and over again when people have supported us.  The world is a big place, and there is so much need.  I never take for granted when someone is led to love us.  I also have been learning to listen very closely for the Spirit telling our family how to share with others.  Sometimes quick obedience is hard.  There's so many reasons not to move on something God has clearly put on your heart, but the simple truth is your action may be the answer to smeone else's desperate need. 

 

In an effort to keep this blog from going in too many directions I have not written about many of the other stories God is writing that cross ours. 

 

Once in awhile I must. 

 

Today, in your first world life you found your way to these words through facebook or a bookmark or susbscription to Team Danica.  Perhaps someone shared it with you.  You may be pressed on many sides in your own ways.  Life is hard.  You have people you support with kindness and prayer.  You probably give regularly to your church or to charitable organizations that matter most to you.  As a defense mechanism it is sometimes easiest to not reach too far outside our own "territory".  It can get messy and start to pinch in all kinds of uncomfortable ways. 

 

I have a personal connection to adoption because my parents searched out and chose two boys from Romania and made them ours.  If you are a believer you should have a connection too.  You were chosen and brought into the family of God.  Do you ever wonder like I do how we are really supposed to live out Christ's love?  He makes it simple here, "Religion that is pure and undefiled before God, the Father, is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world."  James 1:27  I wonder what God thinks for real of us in our big churches with a list of programs to keep ourselves and our children busy learning about Jesus.  I wonder how He feels about our homes and cars and retirement accounts and family vacations and cruises and ten percent going back into ourselves over and over again.  Where is pure religion REALLY happening? 

 

It's happening HERE. 

 

 

Please pray for Jeff and Brenda and their call to bring these girls into their family.  Please bookmark the Amazon shopping link and use it EVERY time you may order something.  Please consider how your own family could make sacrifices to give directly towards their adoption expenses.  Please bookmark their blog and follow their story of redemption. 

 

Oh, and turn up your volume and take a few minutes to watch and listen to this.  Children are waiting.  These four girls are waiting.  God has made a plan to set them in this family.  He will make a way too.  Could you be part of this?  I can't wait to see the Gospel in the Wojton's living room!