Tuesday, April 16, 2013

Always Miracles

 . . . this is freedom.  This is the force of faith.  Nobody gets what they want.  Never again are you the same.  The longing is to be pure.  What you get is to be changed.  Jorie Graham

Danica and I have been watching and waiting for weeks now for the buds on the weeping cherry tree just outside her window to open.  Every day we would study the intricacy of this delicate work of art.  It seemed like it would never happen.  We would have a warm day that would fall fast into freezing temps and even snow flurries.  

Yesterday morning I knew the forecast was for a warm and somewhat sunny day.  I told Danica as I kissed her goodbye for school, "I think today is the day!"  I moved about my routine of making beds and cleaning up before I settled in for quiet time and then some serious phone calls about the summons to court for an old Akron Children's bill.  My dad called, and we talked about how we could set up a payment plan if possible.  I was getting together all our bills and monthly expenses to show the judge how very little we could pledge monthly and how devastating a levy on Dan's pay would be.  There was no frantic feeling like I have had in the past.  I moved through these necessary steps knowing for sure God would help us handle what may be the first of many more serious attempts to collect money we do owe but simply cannot pay.  

A neighbor and friend facebooked me.  "Check your mailbox."  
A plain white envelope with my name on the outside was there.  
I opened it and a check for $2,470.78 was enclosed with a letter that read,

Dearest Monica,

Just because you never know when God will call you to act.  Please accept this gift and pay off your bill.  If God has already provided for this need, use this towards the endless co-pays.

I spent well over an hour last night after I read your blog trying to come up with a plan on how to do this anonymously when He told me not to worry about this minor detail.  Who gives you this money isn't important.  So just pretend my name isn't on this check.  Feel free to share this experience with others because GOD ALWAYS PROVIDES IF WE TURN TO HIM.

I pray this gives you a sliver of freedom for your upcoming week.  KEEP FIGHTING.  Thanking God our path have crossed numerous times.  Blessings and Love.

This is not the first time God has taken something financial that seemed so huge and answered quickly and easily through GREAT LOVE.  It is not the people we know who have wealth and security who you might think would give, but it is often the ones who live very modest lives and have small bank accounts.  They are the faithful ones who have prayed the hardest and become so invested in this narrative God is writing they are willing to sacrifice to be part of the story.  

It is so humbling.  It is so heart changing.  It is so encouraging.  


It was early afternoon when I peeked out to see the first blossoms had opened.  I began to weep at their beauty.  I ran to get my camera and take pictures of them.  The winter always gives way to spring.  No matter how long it seems we believe this.  We know for sure it will come.  This is faith.  The whole world is crying out for us to lift our hearts to the maker of heaven and earth.  Everything faded into the background as I focused my lens.  I was changed just a little more in the moment.  I was reminded nothing about my life is mine.  I felt lighter.  I let a huge burden roll away.  

Miracles.  Big ones like huge checks in the mail and "ordinary" ones like a tree blooming;  a card from someone who has never stopped giving timed so perfectly;  a note from a girl I haven't met saying my life encourages her like Joni, my hero Joni, reminding me there is still purpose to my sharing all this with others;  A talk on the phone with my faithful sissy;  A long talk with my Laney about evil in Boston and how in God we are okay;  A bedtime book about brains with Danica and talks about our surgeries and doctors and how her life is a miracle;  Settling in to bed with Dan with peace and rest in God's amazing care for us once again.  

Our mantra has been from dear Willa Cather, "Where there is great love there are always miracles."  

Always.  Always.  Always.  

We get to be changed.  To God be the glory.  Our Hope remains!

(Thank you for praying for me tomorrow and Thursday.  I have a brutal bowel prep tomorrow and have my procedure at Cleveland Clinic at 12:30 on Thursday.)

Sunday, April 14, 2013


"You want to cry aloud for your mistakes.  But to tell you the truth the world doesn't need anymore of that sound."  Mary Oliver

I haven't been writing here because who really wants to hear anymore of the sound of pain and sadness.  Still, lovingly so many of you continue to ask how I am doing and how our family is.  It is hard to keep up with all my communication when I am in a slump like this.  I'm sorry for neglecting some of you who could and would support us and love me in a different way if I was more honest about what is happening.

I have had a whirlwind of appointments the past two weeks with specialists.  This coming Thursday Dan will take me to Cleveland Clinic for a defecography.  Yes, it is as horrible as it sounds.  I am so demoralized by my body failing me in this area.  Wednesday I will go through a special prep.  It will be very hard on me physically, and  I never know what to expect from my crazy body.  I would really appreciate prayers for strength and courage.  I will meet with an even more specialized colorectal, pelvic floor surgeon on May 6th to decide how we could repair the damage.  I have had so many abdominal surgeries I am not a candidate for the usual surgery.

I want to write a separate post about my cardiology appointment last Friday.  My dear friend Sarah drove me to Toledo.  I can't put into words how much I needed to meet this doctor and what a positive experience it was for me in all ways.  I am beginning new cardiac drugs including bystolic and midodrine.  I'm still taking the propranolol but hoping if I find stability with the other meds I could wean off of it.  I'm hopeful my POTS symptoms will improve and allow me to be a little more active.

I am thrilled to report after a week of new treatment for my abdominal pain I am seeing some relief.  I began taking neurontin for the nerves that were cut twice within a couple weeks when my abdominal mass was removed and then the hematoma.  I began using lidocaine patches every twelve hours and a TENS unit to help change the pain messages to my brain.  A week ago I was curled up in bed crying.  I had several days this week I couldn't function.  I am still always aware there is something wrong but it is a dull ache today and not a knife in my gut.  For this I am so thankful.

I definitely haven't wanted to update on our financial journey.  I felt we had taken all we could or should.  I believed if my health issues would just calm down and Danica would be well and Dan and Delaney would stay well we could find at least a place of calm.  We have never thought we would ever achieve financial freedom again, but we hoped for something better.  The stress of the deep cost of medical care is perhaps one of the most painful parts of being sick.  One of the tragedies of living through what we have for oh so many years is losing your life and then losing it again.  There is so much shame.  There is the sweeping feeling of doom on even good days when a past due bill comes or the phone rings AGAIN, and you know you can't even make a payment plan.  We owe so many different people. If we even made a plan to pay each one $20 a month we would not be able to eat.  On top of this the actual copayments and medication are overwhelming.  In the last month I have had $200 in copays and over $300 in prescription copays.  If it weren't for the continued help from The Canton Chapter of the Foundation for Community Betterment from their fall fundraiser I would have had to cancel appointments or not buy prescriptions I need.  We have finally met our in network deductible.  These past months we have had to pay out of pocket for so many claims because Summa was not processing them.  It is a nightmare to try to even manage the paperwork and the bills coming in and trying to pick who to try to pay.

Yesterday both Dan and I were served by certified mail of a summons to court.  Imagine the heartbreak and fear.  Here we go.  More can't be far behind.  How do you respond or handle this?  The suit is for $2,470.87 to Akron Children's Hospital.  It is a little ironic because that is the place all this began.  It is probably the hospital system we owed the least to.  It was before Danica's Chiari diganosis.  We had several scans there and lots of physical therapy.  We moved on to University Hospital in Cleveland for her first brain surgery.  It quickly became a "pay to play" world for us.  We had to keep our heads above water for the current care we needed.  Dan had a year of very expensive treatment and scans for his kidney issues.  My bills and surgeries began.  We traveled to get opinions for Danica when her surgery failed.  We landed at Cincinnati Children's.  We then fought to keep them paid with the help from you all.  I needed a hysterectomy.  I needed bowel surgery.  I needed brain surgery and fusion.  I needed another spine surgery.  I needed two more abdominal surgeries.  The details are etched in my head because I try to manage this, but I can't.  I'm clearly failing.  I don't want to do this anymore.  Any of it.

I am just praying today.  I can only look to God's faithfulness over and over again and know what He has asked us to do will somehow be possible through His provision day by day.  We haven't forgotten about all the lessons in manna living.  The golden thread running through our messy story is the great love carrying us.  I know for sure He hasn't brought us this far to abandon us. We need wisdom to know how to move forward.  Won't you lift us up?  Please pray for Dan and I not to become overwhelmed with this.  We need one another to just get through the physical issues I am facing and the strain of this is so disheartening.  We always knew we might never have credit again and forever owe money to these people and places who saved our lives, but a lawsuit is scary.

I promise to write again soon about meeting Dr. Grubb.  It was life changing and gave me a fresh perspective on not just surviving with chronic health issues but thriving.  This is not wasted time.  Our Hope remains!

Monday, April 1, 2013

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.