Our daughter was seven when I had taken the kids to a place called Messes and Masterpieces for some fun crafting and noticed a tremor in her hands. And our life got messy. It was over a year of MRI’s, EEG’s, EKG’s, neuropsychology evaluations, hearing and eye exams, spinal taps, copious amounts of blood work, therapists, neurologists and geneticists. And through all of it, and a return of the anxiety I had thought cured with my conversion, God led me to constantly seek His Word and ultimately, into a deeper relationship with Him and His church. With new symptoms like coordination problems, memory loss, cognitive decline and sleep problems, I diligently prayed for healing and answers while sleeping on a trundle bed in her room watching for seizures. Until, down to 100 lbs, hair falling out, bruised body and heart, and hanging onto Him by a thread, He answered.
August 19th is an anniversary I don’t celebrate but will forever be etched into my inner calendar. Diagnosis day. The phone rang and severed the tenuous thread I’d been holding onto and my heart came crashing down to shatter into a thousand pieces. Stomach turning, air lodged in my lungs, time stood still as a sympathetic, clinical voice explained our daughter had tested positive for a genetic condition called Spinocerebellar Ataxia Type 8. Degenerative. No cure. No treatment. Loss of mobility. Speech difficulties. I stared at those words that seemed etched into the broken shards at my feet, and past them, to a future, watching my once perfectly healthy child deteriorate. A living nightmare.
Pain permeated every recess of my heart, mind and body. I was so full of grief that several panic attacks a day kept me battling with my body to make room for air. So full of loss, that I struggled to force down handfuls of Goldfish or peanut M&M’s and begged my stomach to make room for them. My mind so full of worry that the same thoughts turned themselves around tirelessly and refused to stop for sleep…for weeks on end. My heart so full of pain it raced with a resting heartrate of 155bpm. I held so tightly to the broken pieces of my heart that my soul bled constantly, squeezing hot tears out of unsuspecting eyes. I was physically, emotionally and spiritually shattered.
My husband wasn’t even free to grieve his daughter’s diagnosis because his more pressing concern was losing his wife to this disorder first. He had been with me through anxiety and depression before. Understandably, he feared this darkness would overcome.
Because the enemy dances in the darkness and whispers lies into pain. Loud enough to penetrate the pain, I could hear them.
He’s punishing you. For your sins.
Worse. He’s punishing HER for your sins.
I knew the truth and tried to argue. No! I have been redeemed, He set me free!
You don’t look set free. You look broken. And your daughter looks sick.
This is what He calls love? It sure doesn’t look like love!
All of these well aimed, well timed fiery arrows would hit me at my weakest, most vulnerable, darkest moments. Often when the house was dark and quiet and everyone I could normally lean on had long gone to bed. Alone with my shattered heart and fiery arrows I would try to pray but had no words. Would try to read and focus on Truth but couldn’t see the pages. And it was there that God met me. Weighted down to the floor of my closet, surrounded by sopping Kleenex, at the end of myself is where I would find Him.
Just the two of us. I truly believe those wordless, painful, desperate cries for help are the prayers our loving Father can’t resist. Surrounded by a tangible cocoon of His love no words would take place, but a speaking to my soul would remind me that He IS a loving Father. And not only was He my loving Father, but He was my kids’ loving Father as well.
Over the next several weeks He would show up in dozens of small ways to remind me that He is also the LIVING God. Present and active in every aspect of my life. Closer than my next breath. Jesus was not resurrected to only reign at the right hand of the Father in heaven and wait for me there, but He lives NOW and is here for me today. Every weak, vulnerable and dark moment I have full access to Him and His strength. Thank God! Because my own strength doesn’t get me very far. And my own strength robs me of the joy of His presence.
Slowly, over the next several months, He brought me to a place of healing and surrender through His constant love, attention and revelation of His hand on every part of the journey. And so, when we received a second diagnosis for our daughter called Cerebrotendinous Xanthomatosis, a leukodystrophy with a treatment, I was able to praise Him for His mercy. And when we found out that it affected our oldest son as well, I was still able to praise Him. We don’t know if/when the ataxia will be active in Joelle. We suspect she is more affected by CTX because of the presence of this other condition. We don’t know how CTX will affect Jordan and Joelle’s future, we don’t know if we’ll be caring for adult children, we don’t know if our finances will every recover from the diagnostic journey, we don’t know if He will ever restore the “things” we had. But I do know our Hope does not lie in a cure. It does not rely on a treatment and it is not dependent on our health, financial stability or current circumstances. Because He has taught me that my Hope isn’t in the things of this world. And it isn’t just in eternity either. Because I am a short sighted, stiff necked woman and the Hope of eternity is often a comfort but not enough to get me through those darkest of hours. My Hope is in the Living God that never leaves me nor forsakes me. My Hope is in a Sovereign God that sees the beginning and the end and knows better than I do. My Hope is in the God that purposes all things for the good of those who love Him and for His glory. My Hope is in an omnipotent God who has all power and authority and is strong enough to make up for my weakness. My Hope is in the love of Christ. The love that not only saved me from my sins and my weakest self, but a love that allows me to love others out of the abundance He gives me every moment of every day.