I’ve been quiet about the results of my latest plasmapheresis treatment for many reasons. I posted a small update on my gofundme account, but I have been holding much of my progress close. There are moments and sometimes hours of certain days when I feel completely well. I’m afraid to even speak of these for fear they will vanish into thin air.
This was my third round of treatments in a year. If I weigh the good days with the bad they still lose in numbers, but they win in every other way.
Today I received my statement for the treatments in December. The above is just the hospital portion. It is staggering. God found a doctor and hospital willing to take this chance on me. Part of the deal was I would be responsible for the difference between the contracted rate with an in network provider and their rate which is much higher. When you consider my shunt revision in February, the first round of pheresis that was inpatient for twelve days, the IVIG at home, the Meningitis and more hospitalization, the second round of pheresis, the fusion surgery in October and then pheresis again it seems impossible to say 2014 was a “good” year. But it was.
Living with EDS and all means makes for a kind of bipolar existence. The depths are incredibly dark and desperately painful. During these times you doubt the fight is even the right thing to do. It is the heights that convince you every better day might turn into a best. You hope no matter what the cost.
I’ve had some of these days lately. I’m floating in ordinary I count as pure miracle. I cry at the craziest times. The things bringing me the most joy are completely counter intuitive. If you are annoyed by it or dread it I’ve probably been longing for it.
A woman from Alaska who read Team Danica for years panicked when the site went dead. (I’m truly sorry I was not savvy at all about my switch to this site. I’m finding out many I never knew were reading and praying, and I left the story abruptly. Forgive me.) She eventually found us here and contacted me. She was waiting for the right time to reach out. Her gift was a year membership to our local YMCA. This is something we never would have given ourselves, but it has become this beautiful way for all of us to venture outside these walls and grab at something called wellness. Dan is able to continue his fitness which has been a lifeline for him. The girls can swim which is the closest thing to vacation they’ve had in a long time. I can walk. My puffy flesh and crumbling bones are remembering how to move. My veins are pushing blood to my head and heart. I breathe in and out with a mantra, “Thank You. Thank You. Thank You.” When I think we’ve seen every possible kindness someone appears like an angel and finds a new way to remind us we are not alone.
I’m picking my girls up from school faithfully. Every time I see Danica in the car rider line and Delaney breeze out of door one I tear up. I’m there. I’m waiting with a smile and love. Delaney used to say she would anxiously approach our front door every afternoon when my mom would drop them off. They would ring the bell, and I would appear in the sidelight. She said she could tell how much pain I was in by the expression on my face. Do you see how life altering these normal everyday things are to us?
I’m out of bed when Dan gets home. I’m doing little things around the house to ease his load. I’m able to control the insane OCD behavior that was always my downfall before and find gentle ways to reclaim my home. We are falling in love again. Every time I come out of the dark Dan is waiting there. He never forgets the person I am. Underneath the train wreck eighteen surgeries has made of my body and the wasteland this kind of suffering inevitably has made of my mind and heart he believes in me. He finds me again and again.
I’m meeting people face to face. Oh how I’ve needed this. I’m inviting others to come sit on my yellow couch and remind me how to do relationship outside a screen or a phone. I’ve met friends for coffee, had brunch, gone to the movies, prayed holding hands and hugged them all. Yes, if you touch me I will cry. I’m convinced sick people need to be touched to be healed. Failure to thrive is a real thing. I made a new rule in our house that every hug has to last at least thirty seconds. We count it out. If two of us are hugging and someone sees us they pile on. I don’t yelp in pain when someone touches me. I’m less prickly, and this makes all the difference.
I have doubted what my breath is worth when held up beside the ledger of debt and the great emotional cost to those who love me. It is in these days when the sun burns through the clouds I know for sure I must press on and save the life I can. My God wrote this story before I was a human thought, an act of love and a stirring in my mother’s womb. This relief, however long, is a miracle.
Christa Wells wrote this awhile ago on her blog, and I hold it close as I continue to tip toe through what I believe about beauty from ashes. I can still smell the burning. I know for sure He will ask me to walk through the fire again, but today all I see is redemption, restoration and renewal. All I see is Jesus paid it all. All I see are the gorgeous possibilities giving me healing and life.
My Hope remains.
When something life-giving falls from us who are riddled with want.
A word of kindness or sympathy.
An inconvenient act of generosity.
Isn’t it a miracle?If something touched by our trembling fingers grows gold and winged, soars . . . finds entrance to another human soul. Isn’t it a miracle?
When a child looks you in your tired eyes and reaches a small hand, adoring.
Isn’t it miraculous?When a friend hears the pained confession,
And stays.When we find ourselves swept off our seats in laughter, even though.
Is it not the most welcome kind of miracle?When work comes along, finally.
When the work is completed.When an improbable friendship is born.
When we find a fragile opening to forgiveness.
When something lost is found.
Something broken healed.
Something caged released.When one creature carries and nurtures another in the caverns of its own body.
When the crocus smiles from snowy earth,
And strangers share a meal.When brothers and sisters pave new ways.
When suffering sweeps over and still we see light and truth and love and hope.
When the artist creates.
When the creator loves.
When the lover saves.
And the Savior lives!May we be moved to see the marvels of things in motion here.
The miraculous, gorgeous possibilities which rise from the ashes of ”reality”
Providing what is needed for life.
“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.” Ephesian 3:20
What ordinary miracles are you celebrating this week? What gorgeous possibility are you hoping and praying for?
