This morning at five – rising pain. So far, this long night and dark morning, she is holding on at home… Thirteen visits to the emergency room in three weeks. Working all day while she fights back pain at an 8 with our new care giver, Maria, at her side… then when she can no longer… pain escalating to a 9 from the weariness of the day and all resources utilized… we are left to head to the hospital… and relief is not forthcoming~

Helping her to the car in the dark of night, trying to drive fast but careful- missing bumps, sharp starts and stops, that radiate pain through her body… parking in the drive way in front of the emergency department, flashers on, I run in and get a wheel chair, run back and carefully help Dannie out of the car, wheel her in and hope to be greeted by a warm face and caring, leave her there, park, run back, registration, questions, describing the indescribable, asking what doctor is there in hopes of receiving compassionate care, asking about the wait, sitting in the waiting room, rocking, breathing, massaging sometimes, sometimes touch isn’t good, listening to music, wiping her brow… and finally a bed… wheel her in, undress, get on the table and wait again…dim the lights, praying for compassion and help… praying for quick response… by now the pain has been at 9 – 9.5 for hours… Answering financial questions, nursing questions waiting for the doctor….  and not knowing if the response will be one of impatience or assistance, whether I will be able to breath and know that help is forthcoming or if I will have to carefully negotiate to get my daughter help. Doctor flips on the glaring light and decides. Dannie waits again… and relief is, at best partial— if back down to an 8 we go home for her to continue to white knuckle it and pray that it will not rise again. So grateful to Annegret and Janae for their answer to my calls, for their loving presence, for taking time from their busy lives. Most recently the hospital is ready for her to leave when her body is not yet relieved– discharge papers left on the bed, pain coming home with us.

Home, settle her into bed.. no settling. Nap a bit… get up, arrange medications, wait for Maria and I am off to work, carrying her in my heart all day long. Checking in with Ari who is facing challenges of another kind, longing to be along side him as well, cramming in phone calls at lunch to keep moving forward, obtaining care, pursuing new avenues…and the other stuff of life.

Thirteen times in three weeks.

I am praying for Dannie to have a peaceful day- she hasn’t had a pain free day since 2001. She doesn’t remember what a body at peace feels like or what it is like to plan a day and be able to realize it….To get out doors and to leave the house for other than a medical appointment or hospital visit has been  so rare.

Only faith and love have sustained her. Her world has been so small and it takes courage for someone to venture in to it, to be present, to love and not retreat….she craves a big extended family, dinners, people all around. She is, by nature, a social warm person, thriving on connection. Yet this disease takes the ability to initiate and sustain relationships  away, and leaves her subject to who will reach out and be here despite her inability to actively reciprocate as she would like. So many longings in her heart that she cannot fulfill. She has put her heart on the line over and again – To feel she is a part of something – that she belongs, that she is significant and not forgotten. To be brave enough to let others in, not knowing if anyone will stay, to believe that she is worthy. Sometimes she feels she is living in a pretend world, believing in things not seen, as the evidence is not there… Longing to  relate with human beings other than me, Ari and care providers, to know she matters—to have relationships with history, over time.

Her isolation makes each interaction tremendously significant.  Abandonment is a more searing pain than the physical  pain- to feel insignificant, dismissed, left behind, not important enough, replaced and  forgotten. To be recognized as a human being, with real feelings, real needs, for the things and experiences we all take for granted- that she is worthy, lovely, lovable. This she needs to live… For others speak hope, encouragement and care to her when she needs her hope enlivened or cannot hold it for herself- to offset the inhumanity of her isolation, her pain, her loss, and the trauma of medical treatment, compassion-fatigued and even mean spirited or cold providers. She is whimpering in her sleep next to me right now as I lay beside her, praying and visualizing health.

She has not had a pain-free day since she was ten-

Yet I believe today can be that day. Envisioning her on horseback, free. FREE. ”

Please Remember her Spirit and Join Me in Seeing Dannie Healed.