It seems like forever that I have had something decent to write about.  I have some things that I have written in my journal but the thoughts, the experiences are just too depressing or deep to share.  Those things I write down and then lock away, burn and bury.  There is nothing good in those things and only someone that has experienced them would understand.  I do save the experience and the spirit of hope in my heart when I talk with others in similar situations around the world.  When you are not going through this type of thing you don’t think so much about what pain people really go through in this world.  But when it happens to you or someone you know, the realization becomes up front and center.

We have been through the ringer with all the things that come with dealing with a long-term disease.  Our needs are great, our resources few and on top of that there are those sneaky wants and desires that edge their way in too.  Hey, we are only human.  We try not to have the mindset that we “deserve” certain things but you do have to do certain non-need things to keep life for the kids somewhat normal and to relieve some of the tensions that are constantly trying to pull you and your family apart.  So we ask for certain things to help cover our needs and we have been fortunate enough to receive things as they in a timing that can only be explained as beyond explanation.  We have also received things that go beyond what we have asked for and what we could imagine.  Things like my good friend Amy Hitchman paying for our family to go down to Serenbe so that the kids could go to the camp that they love and we could stay there and just be separated from our daily ritual.  Kristin Quintero has given us so many flights on Delta that I have lost count.  We have had friends that I won’t name because I haven’t asked their permission, but they have given us things that have kept us moving financially, spiritually and have given us the love and prayer that we need desperately above and beyond measure.

There have been so many things that people have done for us, some that we don’t even know about, and it has made our lives easier than doing this alone.  Because you can’t do any of this alone.  I’m not saying that there is never a feeling of loneliness or hopelessness, but it is the people in our live that are the greatest gifts in themselves.  The little prayers at night, the moments in thought while looking out a window, and the calls, emails, Facebook, Twitter messages at just the right moment, this things have helped fill the loneliness and give us hope in the face of this disease.  I put no gift above another.  To me, a simple prayer is no different than a million dollar donation, although we haven’t gotten the latter, they mean the same.  Support for our hearts, our spirits and the financial aspects of our lives.  This stuff is personal.  People are giving from their hearts and praying from the deepest part of their souls to help us.  If that isn’t the greatest reason for living and fighting for this life, there isn’t much more that can help you.  It is the people that we meet, the people that are all around us that give us life and affect us in so many ways.  It humbles me to think of all the open hearts out there to our situation.  It humbles me to no end and it drives me to want to be able to help others as others have helped us.  Humanity and grace are the sustenance of our very souls.

There is one gift that has opened my eyes to a whole new perspective on how much people care about not only us but those that are in need.  Lynn and Eric Stover brought to us a gift that caught me off guard, in a good way.  Lynn came over one day and gave me a gift personally and called it “A Prayer Shaw”.  It is a hand woven shawl that is big enough to cover me as a blanket.  They made it in as manly of colors as they could and it is quite beautiful.  What is truly beautiful is the story behind it.  The women in her church made this hand-woven shawl for me.  In my mind, I can see them making it and praying over every turn and every weave, every knot and every new color.  They pray as they make it, praying for my health and healing and for my family as well.  When they finished the shawl, her church prayed over it.  Every fiber of this shawl represents the prayers that are not only from them but all the people that know us well all the way to people that have only heard of our situation.  It is to me a representation of the fabric that connects us all.  The way that when one bad things happens, the people connected to your life help to bring strength to the weakness in the fabric.  They tighten the fabric to hold you and support you.  When you get better you do the same to help support others.  It is the fabric that binds us all.  Author Brian Greene would call it the “Fabric of the Cosmos” and explain it as the superstring theory.  That everything is connected by string-like particles smaller that the parts of an atom.  They connect the parts of every atom to each other so that if something happens on one side of the world, or the universe, it affects the entire fabric and in order to bring stability to the fabric, things must give way or help support deficits and also help distribute abundance.

When I first received the shawl, my daughter Reese quickly grabbed it and slept with it every night.  It had my smell on it and she said that it helped her sleep and she didn’t have nightmares anymore.  Reese has seen the gamut of this disease.  She remembers when I was well and we actively did so many things.  She tries to deal with the now daddy.  The current dad spends most days in bed and doesn’t always make it to her plays and doesn’t take her to the all the cool places.  Both of my daughters Reese and Lakin love the shawl.  A few weeks later we received a shawl for Mary, Lakin and Reese.  They are each beautifully and wonderfully made.

Tonight, several people are having a fund raiser tonight to help pay for my August 30th scoliosis surgery costs and costs surrounding it.  Our friend Joe Mayernik designed the beautiful poster shown above for the event.  It is based off of a new theme for our cause called “Be Strong. Take Heart” and the image is similar to the tattoo on my forearm that says “May Grace Free You Forever” (something that I have to constantly look down to remind myself to do!).  “Be Strong. Take Heart” is about not only our vision of my recovery from this disease but also us getting to the point to where we are helping others in our situation.  Ryan Snuffer has been gracious enough to allow us into his Appalachian Community Mission to help with local fundraising.  If you can’t make it to the fundraiser tonight and want to give then you can click on the link above to do so.  If you need to make payments by credit card then please use the Helping Hands Ministry that is listed on my home page.  Of course this is if you want to and I don’t expect you to.  We are trying to just have a good evening of music and community with our friends Mandy and Kevin Mann from Nashville.  Mandy played at my last benefit in December 2009 for those of you that were with us there in Atlanta.

Mary and I will try to blog as much as we can in the coming weeks and especially as the surgery starts and as I go through a very tough recovery period.  Prayers will be needed above all so keep this in mind or on your mind in the coming weeks and especially on August 30th when the 8-12 hour surgery will be performed.

Love you guys!

I feel like I can’t do it sometimes. Feeling as if some days I can’t go on--Seeing my husband in bed all day broken and drained from this disease that takes most of his life. Raising the kids with a fuzzy mind and a burdened heart.

As I look at the flower on our front porch growing through the concrete I know what it is saying to me. I know its message.

The disease, the fatigue and the drudgery that consume me at times are like cement. And I feel stuck. Will it ever loosen its cold deadly grip? Will I ever make it through to the other side, will there be freedom from this immense pressure--this pressure that is too much for me to bear sometimes.

And I know the difficulties I face are not nearly as enormous as those in Japan and Haiti, for example. Or the 350,000 in Sudan living with HIV and Aids. Or the 70% of children and adults in South Sudan who don’t have access to safe drinking water and who die daily from diarrhea and other water related maladies. And who, unlike us, don’t have hospitals in every town with educated doctors and life giving medicines.

Don’t get me wrong I am not belittling my circumstances. I am a firm believer that everyone has their own pain. And just because someone else's pain seems greater than mine that doesn’t make mine any less painful.

BUT what it does do for me is it puts my pain in perspective and it gives me things to be thankful for, which in turn lifts my burden and gives me a heart of gratitude.

Like, why me? Why was I born in a country where we have safe drinking water, where most Americans have more than enough to eat and where there isn’t violence and war right outside my mud hut? Why? Why am I so lucky?

And while I have no answers for any of the above, I am grateful for our finances, our friendships, our medical care and our fresh water. I am thankful to be experiencing this burden during this moment in time and this place in history.

The flower is still there and so is my epiphany. I relate to the pressure and the feeling of being stuck. But there is a more powerful message in that yellow flower growing in the concrete:

Things CAN grow. They can be beautiful when the perplexities press.

But how?  How in the world do I grow? And more than that, how in the world do I bloom? Where do I get my water? Where do I find room to breathe?

The answer: You just do.

Life has a weird way of working, of providing hope and a way where there seems to be no way. Of pushing us through and making something beautiful out of a life stuck in concrete.

But for me I have to be open to seeing it. I have to be like a little child. And know that I will grow whether the soil is rich and hearty. Or if God is silent and far away--If my “soil” is like rock.  A rock that presses in and withholds the light and the water but miraculously, somehow, allows me to grow and to bloom.

I have been having dreams of my friends becoming wax and falling apart before my eyes.  Not only them but everything they give me.  Maybe, I miss my friends, need friends or maybe I am afraid of being alone.  Maybe my friends are made of wax, who knows.  At this point, I would not discount anything.  With all the drugs, outside deprivation and total lack of control, I sometimes can’t tell my dreams from reality.  Sometimes when I wake up I don’t know if I have slept for a few minutes or a few days.  Most of my dreams are painful and vivid.  Some are incredibly rich and encouraging.  The one thing I do realize is that I cannot exist in sleep and this was my only escape.

I feel like getting a good pain control system in place and moving to an island where I can just be away from everything.  I would love to just listen to music that inspires me like Sara Bareilles and write more of my own.  I would like to be able to get up and try to swim in a clear lagoon every day, work on writing books, arrange for friends to come and visit frequently and just get away from all the sad faces around me.  I hate the look I get as I describe my story.  There is nothing worse than slowly seeing a polite smile slowly melt into concern, from there to disbelief and from there the bottom of their expression which is helplessness. 

I am tired of asking people struggling to get by to help us get by when I meet people that have more means in their pinky to relieve my financial worries forever and they don’t flinch.  But that is the love of oneself or the “I am God, I am self-reliant” complex that you meet out there.  C.S. Lewis describes this best in his book “The Four Loves”.  People who have little are most likely the ones closest to God and are in touch with loving or giving to others.  Those who are self-reliant do not “need” God so loving others and giving are foreign to them in quantity needed. 

Don’t get me wrong, the $25 dollar check or maybe even the $250 dollar check you gave is much appreciated.  But if you have $25 million then it is almost insulting when you know the need and you know the story.  I mean, I could never have that much because I would give it all away to help others in need.  When you hit bottom, when you have nothing, you realize that you don’t need $1,286,589 as your “number” to “retire”.  What is your “number” as the commercial goes.  My number is dead even.  Enough to feed my family, be as comfortable as possible physically, and not have to beg for every dime just to cover the unknown of what is coming next week. But I haven’t always been this way.  I have had to go through a very painful journey to get here.  I am trying to tell others so that they do not have to go through this to get to a comfortable place of loving and giving to others.  I am trying hard not to judge others or put them where I am.  This is difficult but you have to accept people where they are no matter where you are.

After saying all that, I must say that I am still humbled by the little and not so little things that people do for us and help us with.  Mary’s parents allow us to live with them and they help take care of my family.  My sister always helps us and never, ever asks for anything in return.  She never asks for how we use what we are given or even cares.  She just loves us.  My good friend and angel Amy Hitchman just sent money for not only my girls to go to their favorite camp, Serenbe but also money for Mary and me to join them for the week staying down there.  I can’t explain what this means to me and giving my girls and my family a “break” from reality.  With my surgery coming at the end of August, this will be one of the things that I will always remember.  God forbid the surgery leaves me on the table in NYC, at least this will be a magical memory for family and something so meaningful to me that I cannot put into words.  There is a chance that I could die, become paralyzed or even that the surgery could be successful.  But that pendulum of reality will at least get a week off. 

There are others that have helped us as well so many and too many to mention.  Just know that I love and appreciate your gifts to us.

For some reason, I feel compelled to write a prayer.  Even if you don’t believe in God, please believe in the power of all of us helping each other.

God, if I am going to have a slow, agonizing, painful death that lasts the next 6-12 years then God please get rid of everything else!  I have given everything, and I mean everything to this disease and it has left me with a life rich with sad friends, crying family and incredible insight.  I would thank God for the ground but I feel like I have yet to reach it.  I keep falling and falling, hitting things very hard along the way down.  I have been shown the amazing grace of God through people and unexplainable events.  So I pray for the ground so that I can thank God for the ground every day.  I want the ground to be higher but I know that it probably will never be where it was.  And I am deeply afraid of how far down the rabbit hole can go. 

God make me a vessel of your love and grace.  Give me the ability to bring people together to make this world a better place.   Through my pain, give my sorrow your triumph in delivering understanding to those that suffer as I do or just need answers.  I know that sometimes we are not given answers because if we had all the answers we would not pray, we would not go to you.  So give me the strength to not give in to what I have done or what I am, for I am nothing without you.  My life was given as a gift to all those that meet me not because I am something special on my own, but because your light shines through my eyes, through the holes in my inadequacies, on the book of my weaknesses and around the wallows of my immense pain.

God as my cup becomes empty give me a smaller cup that I can hold.  Give me a cup that will always run over to others and feed the thirst of those who are thirsty.  Give me strength to hold my head in humility as you give your grace and your gifts to me to help nourish others that hunger for help, hunger for relief, those that hunger for healing.  If I must suffer all the days of my life from this day until the last, I will willingly do so if only to help one person.  This promise is not by my character but by your grace that you have given me life and not just a beating heart, but a heart that feels the life of the people around me and the people I see.  You gave me a heart that seeks justice for those unable to fight their oppressors and the heart that seeks wisdom in doing what is right with every beat.

God save me from the darkness surrounding this disease and those that would lead me astray.  Light my path to those that can help me in my daily life.  Surround my spirit with wise souls that can help me with this heavy burden.  If I should be so graciously freed from my afflictions allow me the means and the measure to do even more for those in need.  If I should go quickly please blanket my family with love, security and the strength to continue your work my life started.  If my days should be slowly and painfully measured, then please allow your good works through my suffering to be the light of my story and my suffering be the doorway to those seeking all things great and small from your grace and for your glory.  

In your name I pray, Amen.