What remains of Team Danica

When I saw the return address of the Canton Clerk of Courts I think I stopped breathing.  Since Akron Children's filed the lawsuit against us for very old medical bills we have had this additional feeling of anxiety added to our usual worry.  I have begun to understand what happens when something like this becomes public record. The other medical creditors have ramped up their already aggressive tactics to collect.  The letter was actually a beautiful "DISMISSED" notice for the suit against Dan and I.  I want to frame it, hang it on the wall and live with the reminder of God's faithfulness to provide for us and deliver us.  

Last night while I was watching special coverage of the horrific tornado in Oklahoma I was surprised to hear the news anchors telling it straight about what they called "faith based FEMA".  This is what I've been saying all along in our journey.  Community is the best place to care for one another and solve big overwhelming problems born of tragedy.  It is how we bless and are blessed and how gratitude can grow from some of the ugliest things in the world.  

Our first Team Danica donation was in April, 2010.  Do you remember this story?  Would you believe we are still driving on those tires?  Since then the number of people who have loved and supported us from near and far is achingly beautiful.  The Akron Children's law suit was not for bills incurred during our search for answers.  It came from before we ever heard the word "chiari" or for the months and months of physical therapy, scans for Klippel-feil, Botox injections or MRIs. It was for a several day hospitalization that occurred from a strange virus Danica had resulting in high fever, dehydration and a measle like rash.  

There was a lemonade stand, a Chic-fil-A fundraiser, Cookies for a Cause, wear jeans to work fundraisers from clients of the company I worked for in Northern Virginia, a Com Doc ice cream fundraiser, Sugardale Credit Union fundraiser, private donations here on our website, an angel from Australia, a family from California, cards from all over from friends of friends and even friends of people we didn't know.  If you had time you could read back through the archives of this blog and find story after story of how we were cared for.  By the time Danica needed her second brain surgery and fusion we had been adopted by The Canton Chapter of the Foundation for Community Betterment.  This was the biggest fundraiser to date.  It was love on top of love on top of love.  

Wisely we had been counseled to set up a separate "Team Danica" account.  This kept money specifically for her bills and care apart from other very real needs our family was experiencing.  In the completely overwhelming task of juggling the insane amount of bills that came in to our house I also had to decide some kind of priority system for paying them.  This was determined by all kinds of things I began to understand along the way.  One of the most important was keeping current providers paid so they would continue to treat Danica. This made Cincinnati Children's our top payee once she began treatment there in spring of 2010.  As a result this very old Akron Children's bill somehow got lost in the shuffle as well as intentionally not paying University Hospital Systems any more money for the first brain surgery.  I knew this would slide into collections.  The paper would keep coming, the calls would get more and more frequent and harassing, but Danica would have the care she needed NOW.  Our life was about day by day at this point.  Nothing mattered if we couldn't help her in the moment.

Since the recent lawsuit I began a massive project and dug out every single piece of paper I have filed.  Several small trees were crying.  I was crying.  

This is what we have in collections for Team Danica.

$2800.42

This is what remains.  

Here's what I know.  

"WHERE THERE IS GREAT LOVE THERE ARE ALWAYS MIRACLES."  (Willa Cather) 

University Hospital dismissed the money we owed except for $928.45.  This is a miracle in and of itself.  The remainder is owed to Cincinnati Children's.  

How in the world does $250,000 of medical care become this?  

COMMUNITY. 

KINDNESS.

And the biggest miracle of all is Danica Jean.  You gave her the best life possible.  We could not have done this without you.  

Look at her.  

This remains!  

("Team Monica" health update tomorrow.  Although I am being crushed right now from a bad storm approaching and have been bleeding rectally today after improvement from my special compounded medicine I can still say I have felt better in the past two weeks than I have in well over a year.  This has given me an adrenaline rush for life I have forgotten is even possible.  I don't take a minute of it for granted and find myself reaching in a million directions to try to grab some life.  My spreadsheet is a bloodbath.  I have over 30 creditors.  The amounts owed for some of them are staggering.  It feels impossible.  Do I just quit opening the envelopes?  Do I change our phone number and hide when the doorbell rings?  No.  I will press on because I have seen mountains moved.  I believe in impossible things because I've seen them appear from the most unlikely places and at the most desperate moments of doubt and despair.  When I think I can't do this another day I feel myself moving and look over to find you and you and you carrying my mat.  My Hope remains!)

Rescued by someone like me

Heroes didn't leap tall buildings or stop bullets with an outstretched hand; they didn't wear boots and capes.  They bled, and they bruised, and their superpowers were as simple as listening, or loving.  Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else's.  And maybe that one act could lead someone to rescue you right back."  --Jodi Piccoult, Second Glance

On February 11th a private facebook message popped up.  It was from a mom in Virginia who is a friend of a friend.  I knew of her because my friend had asked prayer for her daughter before.  This dear girl has suffered over a decade from a mysterious illness that leaves her fainting repeatedly and unable to participate in much of life.  Her pain and suffering are like mine in many ways, especially my symptoms before my decompression and fusion.  Surrounding this message was a deep struggle in myself about continuing on social media, this blog, and responding to these emails and notes from people I know and don't know about my experience with Danica's and my own Chiari and Ehlers Danlos diagnoses.

There was a local little girl who was diagnosed with Chiari.  A friend of the family reached out wanting me to advise.  I became so emotional about reliving what we had been through.  If you know me you understand anything I share is with a huge disclaimer about how different every single case is.  I always remind how critical more than one set of eyes on the scans and symptoms are.  I always encourage the evaluation for connective tissue disorders by a specialist before letting someone cut.  These are things I can own because they would have saved much pain and grief in our life.  I often put these things gently in an email when asked and then step back and pray.  I believe more than anything everyone is on their own journey.  There was someone else who was also giving advice to this family.  Someone with a different personality.  Someone who had not walked the surgical road at all yet.  Someone who, with the best of intentions I'm sure, alienated this family from all the messages coming in.  It grieved me.  I did not sleep nights.  I really wanted to remove myself from all the online Chiari and EDS support groups for good and just move on with my life.  I was so not well personally, and I couldn't seem to handle the risk of continuing to share something so personal without knowing it would be received and make some kind of difference.

The message from the Virginia mom pushed me to respond.  I knew in my heart of hearts her daughter had cervical instability.  I knew my neurosurgeon could help her.  I knew what scans she needed.  I knew she could be helped.  How could I turn away from this?  How could I decide I was going to just step away from this community now?  I began passionately praying for this dear girl and her family.  I sent a package and card.  I talked to her on the phone a day she was in the hospital after fainting and falling.  I talked to the mom.  And last week they finally saw my dear Dr. H.  The pictures were clear.  Much like my own diagnoses, she is suffering from brain stem compression.  She will have other specialists confirm the accompanying disorders.  She will be offered hope through this network of amazing physicians.  What if I had deleted her message?  What if I had not pushed with Dr. H's information and my own story?  What if I had quit trying to untangle someone else's knot?

We've been rescued over and over again by you.  The faithful ones who have continued to read here long after the "exciting" hospital drama and fundraising and miracles to pray us through hard days of pain and doubt and debt.  You have been a community to me.  You've been heroes to Dan and my girls.  You've untied our impossible.  You've brought us meals.  You've sat with me so I wouldn't be lonely.  You've prayed with us and for us.

This week I am going to write everyday about the superheroes of our community and how they have changed our lives.  I hope you'll come back and read and even one story will encourage you to never be weary in doing good.  I was reminded last week of something I've always believed.  My story matters.  Your story matters.  Sharing the deepest parts of our experiences can SAVE A LIFE.  Listening to the Spirit when He tells me to act is critical.  We are the rescuers.  Take the risk today and BE COMMUNITY.

No firm resolve

It is not what you first think. There is no effort of will, no firm resolve in the face of this thing called living.  There is only paying attention to the quiet each morning, while you hold your cup in the cool air and then that moment you choose to spread your love like a cloth upon the table and invite the whole day in again.  Brian Andreas, Story People

I find myself back here over and over.  I tell myself in the lesser pain days I will make a better plan for next time.  I will communicate more clearly to my health care professionals how bad it is getting.  I will call a family meeting and make better support system for Dan and my girls.  I will be more honest about the scale on which I'm sliding.  I will find stronger faith and better bootstraps.

I'm lying here with my laptop propped on my belly and my cervical pillow wrapped around my head to eek out some words.  I think it is important because I've been writing in my head all day.  (Note to self.  Must get some kind of of modern electronic thing to dictate into when I am too sick to type.)  I haven't been writing blog posts, because I really don't want to do this anymore.

I haven't had a pressure incident since the last really big rain.  I moved it down on my ever changing list of medical priorities hoping I could get through the summer and nicer weather without seeing my neurosurgeon about a shunt.  A storm rolled in yesterday, and it began building in my body and then my chest and then my head.  I could not sleep.  I felt tortured.  Today I have been in the bathroom no less than ten times emptying every possible thing.  I am dehydrated.  I am nauseous.  I feel like I may have a stroke.  My eyes bubble and pop.  My head is numb and my face is red and hot and my cheeks have no feeling.  If you're still reading this blog you know I will not call anyone.  I won't go to the emergency room.  This may eventually be my demise.  In the meantime there is nothing anyone can do.  I keep a record of these.  I try to tell Dan, although I know he has to be tuning it out to survive.  I want someone to know.  It is never any less scary.  Ever.

I am on the last few chapters of reading a memoir titled Until I Say Goodbye written by Susan Spencer-Wendel, a remarkable woman who was diagnosed with ALS.  It's about her "year of living with joy."  I've gleaned many things from her very personal story I will carry with me in my own journey of losing myself and the life I wanted.  One of the most profound was the decision she and her husband made not to chase radical treatment.  In essence they eventually resigned themselves to the truth about her condition and got busy living and loving in a different way.  It's one way to deal.  It is a beautiful way to navigate unspeakable suffering and loss.  I admire it, and I wish I knew how to find the same path.  Still, missing from this book is the strangling in-between minutes and hours and days when the coping mechanism will undoubtedly fail, and you have to find something else to sustain you.

When there is no firm resolve in my human spirit I can only say His name, "Jesus, Jesus, Jesus."  This power and Life and Hope gives me breath.  I can only pay attention to the good He gives in spite of all this inexhaustible pain.  There is so much love.  There is so much good.  It tips the balance every time, and I choose life. Again. For you it is something that just comes like air, but for me it is a battle.  Truly.  I don't want to do this anymore, yet He makes me want it more than anything.  It's the invitation I accept because it's His party, and I'm an honored guest no matter what.  These are my bootstraps.

(There is much to update on my appointments, procedures, our financial need and hard decisions.  There are also beautiful stories of peace and joy already written quietly elsewhere that will be shared in time.  I promise to write an informational post soon for you.  Thank you for praying.  Tonight, please if you only ask God for one thing  for me will you ask for some relief for my brain pressure?  We suffer gratitude most of all and can scarcely move through the love you show us.)

The thing with feathers

Pain for days now.  Stabbing, knifing pain in my left abdomen.  Nothing new.  It comes every thirty days.  Endometrioma.  Dilaudid.  4 mg.  Repeat.  Barely touches it.  Throwing up.  Family turns away.  Sometimes alone is the only way to live this.  I smile.  I limp.  I crawl.  I wait until the door closes this morning to cry.  Then I put a happy face for email and facebook.  God, could I be a blessing in this?  Just think about someone else.  Encourage someone else.  (I'm not trying to earn Grace, just be anything but this waste.)  Wrestling God with a hip out of joint.  I hear a song.  I get on my knees.  It feels like broken glass.  I see His face.  Cleveland Clinic doctor calls.  He's on a trip.  I need to have imaging done now in this flare.  I need to treat the pain better.  Dan is working.  Mom is working.  Dad is working.  Kids are so tired and have tomorrow off school.  Delaney has a party and then a sleepover planned here.  Dan and I have an overnight date planned this weekend around my surgeon appointment Monday.  We haven't touched in days.  We need to touch.  I need someone to touch me.  I waffle between surrender and anger.  Two stations play in my head.  Foo Fighters blares.  The best of me.  Turn it off.  A bird sings.  How can this be redeemed?  I have to shave my legs.  This is the next step.  Gather my bag of meds.  Brace for the nightmare that plays over and over and over with no resolution.  PTSD is a real thing.  

Tweet, chirp, triiiiilllllll. 

Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops 

At all

(Emily Dickinson)

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.  

I want to shout it loud.  GOD IS GOOD.  NOTHING IS TOO BIG FOR HIM.  LOVE IS REAL.  HE IS FAITHFUL.  BELIEVE.  HE WILL MAKE YOU FREE.  YOUR DEBTS ARE PAID IN HIM.  GOD IS GOOD.

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.)

Summons

"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!

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.