Come home

For the first time in my life I might know a teeny bit how it felt. 

My parents are a world away.  A cryptic email came this morning mentioning "great difficulty."  There is no way to really get to them.  I could call and call and call their phones, but they would not answer.  I do not know where they are sleeping tonight.  If I needed them I could only send a message into cyberspace and hope they would read it.  If they wanted to come home today they could not. 

I remember years of my life when my parents could not get to me.  I was wounded and broken.  I withdrew from a prestigious woman's college where I had an elite scholarship, because I couldn't move anymore.  An avalanche of life had begun crushing anything and everything I believed about God.  This began with huge life changes like two brothers adopted from Romania, old pain from my parents younger selves being revealed, an ugly church split, my older sister who slept on my floor every night getting married and moving away, isolation from all the people I had known most of my life and my parents and siblings moving to Ohio.  Trauma was the tipping point in a seventeen year old girl living on her own and completely alone.  I was a sophomore in college, working two jobs, a Young Republican, active in Right to Life, active in the college's Baptist Student Union.  It's true one storm can blow everything away.  The younger you are and the more sheltered and naïve the worse the damage will be.  I was decimated. 

The story of the almost year between when my world blew up and when I called my parents to tell them is too graphic for this heart to retell.  I know on their side they were thinking maybe I had simply changed my mind about schools.  I did transfer to a larger state school the next semester.  They were dealing with new jobs, special needs kids and making a new life.  I had managed to keep working and paying my rent in my basement apartment.  There wasn't really anyone left in my life to be accountable to so my slipping away was easy to hide.  When we did talk I know I told them what they wanted to hear to make it easier on them.  Still, they would call some nights, and I did not answer.  They did not know where I was sleeping or if I was really okay. 

When I finally told them, because my sexual assault counselor told me I had to, I know it was horrific for them.  Can you imagine the guilt a parent has when circumstances spiral to one of your worst fears being realized for your daughter?  My dad got in his car and drove all the way to our home town.  We met at an Econo Lodge.  We got down on our knees, and he prayed with me.  Then he asked me to come home.  There was nothing in my heart that even moved toward making that kind of decision.  Ohio wasn't home.  I wasn't Monica anymore.  I told him I couldn't.  I hugged him and said "goodbye" and "I love you" and went back to my dorm room to cry myself to sleep.  I was a sophomore in college.  I was a binge drunk.  I was a whore.  I was a blasphemer.  I was eating with the pigs.  I changed my major to sociology.  I became a feminist, a humanist and a liberal.  Still, when I was alone at night and could not numb myself any longer I could hear my Father calling my name. 

Today I know what it must have felt like. 

I just want them to come home. 

I want to say "I'm sorry" for the million ways I hurt them.  I want to forgive them for the million ways they thought they were doing what was best that hurt me.  I want to show them grace.  I want to honor them for their faith and courage and service.  I am like them in many ways.  I can hear my girls on the phone someday saying I was too involved in other's lives, praying too much for people we don't really even know, giving to people when we don't have "enough" ourselves.  I've faulted my parents for these things before. 

I am so much like my father.  I see the world through a theological lens I will never be able to leave behind.  I hope it's not theology.  I think it is Jesus.  I will always be digging and searching and maybe too serious.  I will always need to retreat from social situations and need time to be alone to be okay.  He is a lover of Grace and truth seeker.  He is a writer, an early riser to seek the face of God and carries the lives of hundreds of families in his heart. 

I am like my mother.  I will learn of a friend of a friend who is hurting, and I will pray and ask you to pray.  It is annoying to most and enduring only to those who know how sincere we are.  I am sometimes an optimist like her.  I used to call her house a glass castle.  I understand over these last years it is a coping mechanism for making it through really hard things and also a ruthless trust in a good God no matter what.  She is a journal keeper, early riser to seek the face of God and carries the lives of hundreds of families in her heart. 

I want them to come home. 

I want them to know after thirty-seven years an email from a far away land healed more in me than all the therapy I've ever been through. 

I love you dad and mom. 

Come home. 

Father, bring them home. 

If you don't have your health you don't have anything

I used to say this all the time.  In some ways it is true.  When you are chronically sick and in pain life is overwhelmed by a shadow that will not move.  I know God has changed my heart and mind through the long years, because I have surrendered to the truth I may never be any better than right now and in the same breath I fight because I refuse to lose hope.  I also have learned to focus in on blessings in the midst of my own suffering.  There is almost always a light shining near me no matter how I hurt.  I feel horribly this morning.  I could name the many ways my body is screaming at me, but some of them would be redundant to other posts and some would just gross you out, so I won't.  The point is as I sit here in pain that is my day I hear Danica playing music in her room and pretending with her stuffed animals.  My pup is snuggled beside me.  I hear soft rain outside on the deck of our home with sweet birds chirping from the trees.  Laney is still peacefully sleeping in her bed.  My faithful husband has gone to work at a job God has given him for over five years.  So much grace surrounds me I can scarcely breathe.  I have everything.

I'm sorry.  It has been weeks, maybe even months, since I promised a health update.  I am finding it more and more uncomfortable to talk about this stuff online.  Still, so many of you ask and email and message me to know how to pray and support our family during ongoing crisis.  I am reluctantly going to try to update in general terms what is on our plate right now.

Over a week ago I went into my monthly flare of endometriosis pain.  It has been getting worse month to month.  I have been managing with days in bed, torodol injections, dilaudid and many tears.  I have an appointment with Dr. Falcone on Friday, June 27th.  He is the surgeon at Cleveland Clinic who removed the endometriosis from my bowels after my hysterectomy.  His office has my number on a sticky on the phone to call if anything comes open or they could work me in sooner.  It is time to let him go back in.  I have a remaining ovary and the pros and cons of having no hormones with EDS are very clear to me.  The past months have made me sure whatever increased disability is caused by cutting off all hormones increasing my bone loss and decreasing collagen production is a fair price to pay to have any relief from this pain.  Endometriosis is an insidious disease.  At stage IV, it is as aggressive and wide spread as cancer, but besides operating over and over again which can actually spread the cells, there is still very little treatment.  I am hanging on for my appointment to make a surgical plan.  The colorectal surgeon I saw last month wrote notes to Dr. Falcone about his department dealing with my rectocele.  This is my large intestine prolapsing into my vaginal wall.  I am hoping these surgeries could be done together.

Thursday I ended up back at my general doctor because my belly became so distended and my pain even worse than I had been dealing with.  I had diarrhea and nausea.  I was sent for a CT and there was free flowing fluid in my pelvis.  Because of the pain and remaining ovary it made sense it was a burst cyst.  My wise doctor also wanted me to do a cdiff sample.  My immune system is so weak I am constantly treating an infection of some kind.  The monthly wide spectrum antibiotics could surely have cause a cdiff infection.  Saturday I continued to have stool symptoms and pain but my swelling had gone down.  I was exhausted and my bowel sounds were so loud they made my family and I laugh.  I took a cdiff sample to the hospital so the word is out on this.  I am still not venturing far from the bathroom or eating much.  My abdominal pain is sharp and constant.  All this inflammation and pain causes many of my other symptoms to flare.  I have had increased instability, particularly in my neck and back.  I've had increasing headaches.  I know everything about my body is a domino effect.  I try to document my issues without becoming too excitable.  There are always little things all over my body.  A spot on my clavicle that will not heal doesn't seem worth mentioning but when the doctor asks what is under the band aid she instantly thinks to test for MRSA.  This is one of the culprits of my enduring antibiotic use.  My actual rectal issues have improved greatly with the special medicine from the Cleveland Clinic doctor.  I thought the tear was pretty much healed and then this awful bout of diarrhea came and now I am in the same place it seems.  When you see me and think I look good please show me a little grace because underneath my strained smile and biting my cheeks I have so many things hurting me.  My joints are ever popping and cracking.  I am dizzy and have trouble remembering words.  I am tired.  I am bone tired from never ending pain from so many origins.

Are you waiting for good news?  Remember my appointment with Dr. Grubb, the cardiologist in Toledo?  The new medication for my POTS symptoms has helped so much.  I have the least amount of POTS symptoms I have had in years.  Praise!  I attribute the really good weeks I had last month specifically to Bystolic.

This scratches the surface of my health, but it is the top issues this week which I always say is about all we can focus on.   It's like putting out fires.  

Many of you have asked how we are financially with the continued strain of all these medical appointments, procedures, scans, trips, etc.  The truth is we are back to a tough place.  We had help from Rocktoberfest for several months with our mortgage.  Without this love we would not have been able to pay the deductibles we faced.  My claims for this year without any major surgery are already over $65,000.  I get bills I cannot even begin to pay.  I owe my hematologist money that needs paid before my next appointment.  (I have needed expensive iron infusions this year).  I was dismissed from my gastroenterologist's practice for an unpaid bill.  A new bill for over $2,000 for the MRI I had out of network in Maryland just came last week.  When I am as sick as I have been with pain I shove all this into a drawer beside my bed and we balance on manna.  Dan brought a check for $30 home from church yesterday.  A family who doesn't have much still remembering us and our struggle.  It brought me to my knees.

A need in the next few weeks is a trip we are planning to take to Maryland as a family.  I have an appointment with my neurosurgeon, Dr. H, on Friday morning, July 5th.  Before this appointment I have to have a new CT of my cervical spine to assess fusion, stability and some other markers of healing.  I was asked to participate in a long term research study of patients with EDS and craniocervical instability.  The director is Dr. Clair Francomano, the foremost geneticist in the study and treatment of Ehlers Danlos patients.  Dr. H is a co-director.  This study plans to follow the participants for as long as 25 years.  There is no compensation for participating in the study.  Having a scan ordered and a physical appointment with Dr. H is particularly helpful for me at this stage because of my symptoms.  Although I will not be charged for the office visit, the cost of travel and the portion of the scan my insurance will not cover is my responsibility.  People may wonder why with everything else going on would I consider doing this.  The answer is clear.  Our hope remains.  When I see my Danica suffer her continued pain I know I must do this.  I receive emails from moms who have sat and read the entire archives of this blog looking for answers for their own children.  I must do this for them.  I must do this for my grandchildren who may inherit this genetic code.  It's important.  I make plans to do all kinds of things to try to help in the world and cancel because my body betrays me, but I must do this.

If you want to help I have humbly added the "Donate" button back to the top of this blog.

Most of all you have asked how we really are.  You lovingly ask about our hearts.  I have many unanswered emails, and I pray you will forgive me for only focusing on what I can do in this pain. The girls are home for the summer now, and I am needing to push myself more physically to care for them throughout the day.  When Dan gets home he must take over until they are tucked in and we can rest and begin again.  Remember how discontent our hearts often were at the beginning of this journey, especially when summer would come and the world of facebook and photos of vacation and the zoo and concerts and swimming and a hundred other fun things would flash across our screen reminding us of what we could not do?  There is now very little sadness left.  It is a beautiful thing to find contentment in this.  We still feel as if our home is a vacation.  I wish you could hear our prayers of gratitude every single day for this place.   We don't take a moment for granted.  We have found a true joy in watching those we love live out loud while we have a different kind of life altogether.  This is grace.

Thank you.  As always we covet your prayers as the day to day is grueling.  We hold on to the perfect faithfulness of God and the Hope that will not disappoint as we move forward and do the next thing. We love you.

Oh, and if you are healthy today.  If you feel well.  Don't take it for granted.  Do something good.  It is a gift.

Tao Te Dan (A video tribute to our superman)

"The future is something which everyone reaches at the rate of sixty minutes an hour, whatever he does, whoever he is.” C.S. Lewis

He is not a philosopher.  He is a self described simple man.  I heard him on the phone last night talking to a friend.  He was explaining his way of life.  "I get up in the morning and do what needs to be done.  This is my purpose.  I don't reach back into the past, and I don't look far into the future.  God has a plan for me and today is the plan . . ."

He is character.  He is faithfulness.  He is love.

Husband of the hour.  Father of the hour.  Husband of the day.  Father of the day.  Husband of the year.  Father of the year.

And he is ours.

(Cutie Patootie videos from the girls at the end!)

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When I think too much

Have I lived enough?

Have I loved enough?

Have I considered Right Action enough,

have I come to any conclusion?

I say this, or perhaps I'm just thinking it.

Actually, I probably think too much.

Then I step out into the garden,

where the gardener, who is said to be a simple man,

is tending his children,

the roses.  

Mary Oliver, A Thousand Mornings

(An explosion of pink roses is the view from my kitchen window today.  It makes the swirling in my head and my heart slow to the simple gratitude we were meant to live in.  Thank you.  Thank you.  Thank you.  This is too much grace.  Suddenly the cross I bear is lighter.)

It's just not true

Before our children were even born we began dreaming for them about what their lives might be like.  We hoped and prayed for health and happiness and some measure of success while doing something they loved.  We wanted them to know the joy of giving back to the world in a meaningful way.  It seems we began to whisper the "lie" to them in our arms as wee babes, "You can be anything you want to be."

Yesterday our Danica had her last day of preschool.  There was a time we couldn't have imagined her independently learning and socializing and being safe.  Because the weather was so cold and icky the preschool picnic was held inside.  We all spread out blankets on the floor to share the last hour of time together with lunch and goodies.  The kids began playing after eating.  One of the little girls in Danica's class had a rhythmic gymnastic kind of streamer.  Danica was in love.  A group of girls began doing somersaults.  Oh my, Danica's little heart was aching.  She was dreaming.  As soon as we got in the car to leave she began telling me all about how much she wanted to do gymnastics as soon as her neck was all better.  I was quiet.  I know we have said this too often.  "When your neck gets better you can . . ."  We never mean to be dishonest when we say this.  There are some things she may be able to actually begin doing if everything is fused and stable in October, 2015, her five year anniversary.  There are plenty of things she just won't. 

When we got home she asked to put on the Amercan Girl movie "McKenna".  Later I heard thumping in her room and rushed in.  I could tell she was trying to do some kind of gymnastic type moves on the bed.  I sat down, and we talked about it.  I reminded her how much we had invested in her neck and how well she was doing.  I talked about how even though everything seems all better she is still growing and fusing.  Now is just as important as ever to obey Dr. Crawford and be careful.  I explained this was not a punishment for anything.  It is just part of her special life.  She told me there is a gymnastics place close to our house where her friends "train".  She asked if as soon as her neck was healed she could begin.  With tears in my eyes I told her the truth.  Finally, I was brave enough to say it.  "Honey, you will never be able to do gymnastics.  It is too dangerous.  There are hundreds of other things you can do, but this isn't one of them." 

It would have be easy for me to jump to some kind of story about kids in wheelchairs who are so sick they can't get out of bed and remind her how incredibly lucky she is.  This is the internal dialogue I carry on in my own head when I begin to feel badly about all the things I simply cannot do any longer.  No amount of wishing or hoping or willing or trying will make most of my old dreams a reality.  I know many who are worse off than I am.  If I focus on that won't I be more grateful?   Theodore Roosevelt said, "Comparison is the thief of joy."  I used to think of this only in relation to people who had the good, better and best I desired.  I realized yesterday comparison to people who have less is also a bandit.  It's something my mom would always do.  She would tell me how much worse something could be to try to bring my heart back into a right place.  I know she meant well, but it frustrated me.  Our family was in ministry.  There were always people much worse off.  This too was taking away cultivating authentic gratitude for my right now, exactly how it was, whatever it was. 

Last night Danica decided to have a sleepover in my bed.  It wasn't even dark yet and we snuggled under my covers.  We entwined our fingers, one of my favorite rituals.  Our breathing became the same.  I never knew a child could be so connected to their mama in this many ways.  Danica's sweet little voice said, "My neck and my head hurt so bad, mom."  Yes, my child, I know exactly how it feels when you push your body to do something you want so desperately but God just didn't intend.  Tears welled up as I rubbed her little spine and the base of her neck. 

We can't be anything we want to be. 

We can only be what God intended. 

Aligning these two will bring real peace and happiness.  Our days are written.  I have been feeling a little better (I promise to tell you about all this soon), and I find my head pushing my body to get as much mileage from what could be fleeting good days.  I end up hurting and cycling back to discouragement and discontent instead of the real gratitude I should be experiencing.  I am so much healthier today.  This is my joy.  I want to tell the truth about all this to my girls.  I want them to believe in impossible things but temper this hope with the realism that brings them continually to God's plan for their lives. 
   

Your eyes saw my unformed substance;

in your book were written,

every one of them, the days that were formed for me,

when as yet there was none of them.

Psalm 139:16 ESV

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.