I wanted to see the burning bush. I wanted a glimpse at the brightness of the back of God Almighty. I begged for miracles. I wanted to choose life no matter what. He began to answer by giving me a week experiencing what was possible in Tucson, immediately following my shunt revision. The trip made me hungry for something I before thought would never happen. As I returned to freezing cold Ohio, the pressure headaches, the constant sickness and antibiotics, the racing thoughts, the crazy obsessive compulsive disorder I lost hope again. This all led to pursuing what had been a controversial and out of the box diagnosis. My team of specialists exhausted all conservative treatment over the prior nine months. The twelve days I spent in Maryland in April for plasmapheresis were some of the hardest I’ve ever lived. God brought me through. I came home for IVIG and days later came down with meningitis and was hospitalized again. After this treacherous ascent, I saw Him. I was literally pain free. I had a calm mind. My words were kind. The peace I sought for so long came. It was pure gift. I was transformed.
Ann Voskamp writes, “There’s always the descent down from the mount. The meeting of the crowd crush, the complaining, the cursing. Obvious and immediate transformations exhilarate faith, but the faithful can forget transformations, faces that once changed appearances, and we betray all that we know.”
I don’t want to forget, but I also want it back. Oh how I want it back.
My symptoms are returning. Each one has been escalating the past few weeks. It seemed God had arranged every detail for me to have an outpatient jugular cathether placed and receive pheresis locally. The doctor who rotated on call read my case and rejected me as a patient. Since this development last Tuesday, my local doctor and dear Maryland doctor have been trying to find a brave nephrologist here to understand the science of adult PANDAS and encephalitis caused by infections crossing the brain barrier. "Take the Risk" (Thank to Dr. Ben Carson) has been a long time mantra in our journey beginning when Danica’s first brain surgery failed. We know the cowardice of waiting can cause harm and the battle for treatment can be the conduit for healing and modern day miracles.
I sit here devastated I am losing ground, failing in faith and forgetting His faithfulness and mercies in this remarkable story He’s writing through us. Will you pray for me? I need encouragement to believe. When I see my husband curled up in sadness and fear he’s losing his wife again it hurts in the deepest place. When I see my children begin to witness me biting my cheeks in pain, the furrow in my brow constant again while I limp through the house trying to keep the beautiful family life God gave us this summer in some way going as I’m falling and failing.
Will you please pray God will work in the heart of the Dr. I met Tuesday a willingness to take the risk with me and offer me outpatient treatment here. Please ask God's provision once more as we will have to pay more out of pocket to keep me from being admitted and away from my family. And if God wants me to return to Maryland for ten days, ask my Heavenly Father to give us the submissive heart for me to go again. We know a thousand things are happening in this one thing for our good and His glory.
Our Hope remains.