Wednesday, May 29, 2013

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.)

Saturday, May 25, 2013

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

Wednesday, May 22, 2013

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.


This is what remains.  

Here's what I know.  


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?  


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!)

Monday, May 20, 2013

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.

Saturday, May 11, 2013

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.)

Thursday, May 2, 2013

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)