It had been over a year. Over a year since I’d noticed the tremor in our seven year old daughter’s hands. Over a year of testing, waiting, worrying, doctors, appointments and watching her develop more symptoms. Over a year of praying for answers while He faithfully placed me in a position to receive them.
I was in my kitchen, twenty pounds lighter, bruised heart and body, too much hair lost in the bristles of my hair brush, clutching my cell phone in one hand and my budding faith in the other when the lights went out. It was a genetic disorder, degenerative, untreatable and incurable. My stomach turned over and I struggled for breath as my mind struggled to process the words pouring through the phone. I knew from countless hours of research what the sympathetic, clinical, voice was trying to explain. This was not life threatening. There were 29 other types of this repeat disorder and this was not the worst. It was considered “slowly progressing”. We wanted answers, and we now had them. But I knew our now eight year old daughter had approximately 15 years of mobility. That we would slowly watch her lose coordination, and the ability to walk. That the prognosis includes vision problems, swallowing and speech loss, tremors and cognitive problems. I couldn’t move. My feet rooted to that kitchen floor I somehow ended that call and stood, dazed, and listened through roaring ears to my three children playing downstairs. I honestly don’t know how long I stood there before the front door opened and Hubby walked in. The door closing somehow opened the flood gates of my eyes and as sobs and words came pouring out he held me until my tears wet his shirt and air started to fill my lungs again. I could hear the rain pelting the front door and recognized the sounds of a squabble downstairs and knew our privacy was at an end. As our tear filled, red rimmed eyes met, we both knew I had to go. So he stayed, and I ran. I knew it wasn’t fair but I also knew that the kids couldn’t see me like that. That I would take one look at them and fall apart.
So I left, into the rain, still in the dark. Wondering to where I was running. A year ago I would have had nowhere to go. But over the last year God had been faithfully positioning me for this moment. Slowly breaking down the last of the walls on my heart, stretching me and forging new relationships with wonderful, Christ following, beautiful women and a newfound church family that at the drop of a text, dropped the project they were working on and held me, cried with me, and prayed with me. I caught a breath. Long enough to return to my family and my kitchen.
Over the next few weeks I was like a novice swimmer caught in a raging sea. Pulled under by life’s tides I struggled to breathe. The darkness was so all consuming, the water so cold that my mind and body were numb to anything but pain. I searched frantically for a ray of light to break through to find my way up, to the surface. My prayers were more of an SOS than anything. Because I could barely form words, never mind sentences. But over the next few weeks He mercifully answered my cries for help. Slowly, He met me where I was, unable to sleep, eat, or put hands and words together in prayer, with the light I needed to get through. Lungs bursting, I’d catch a glimpse of His light penetrating the darkness and surface long enough to draw breath to sustain me through the next wave of grief.
He met me that first day with the arms of the husband He gave me. He met me in a room across town as two beautiful women breathed Truth and Love into starving lungs.
He met me a week later, in my bathroom, as Hubby, typically short of words and the first to panic at the sight of my tears told me, “She’s going to be okay. He gave her to us for a reason, and I know He made you the perfect mother for her”. Other people had said similar words, but hearing it from him, whose faith was in such a different place than my own, and knowing the pain he feels seeing me cry and unable to “fix” it? Another breath of Truth and Love!
And the next week, after our third appointment with different specialists I was driving home, overwhelmed with conflicting information when truthfully I still struggled to even pour a bowl of cereal without getting distracted, never mind processing statistics and genetic terminology that would make your head spin. But, through exhausted, tear filled eyes, I looked up! And there, breaking through the clouds was a ray of light that broke through the fatigued, scattered thoughts in my mind. With absolute clarity I KNEW that not one of those doctors knew our daughter’s future. He who made her, was still holding her,and her future, in His hands. And He loves her!! I claimed that ray of light as my own and it followed me all the way home.
He met me in my therapist’s cocoon of an office where she had gently encouraged my faith over the past eight years. As my body wracked with soul wrenching sobs in the safety I’d found in that room, she prayed for me, with me. Putting the words together that my tired mind couldn’t connect. And reminded me that He knew my heart and He loved our daughter more than I could comprehend. More Truth, more Love, more Light.
He met me in His church, with His church. As the pastor spoke of resting in He who does not slumber and I sobbed through songs of praise and worship wearing wrinkled clothes that had been sitting in the dryer for two weeks, hair that hadn’t been washed in two days and makeup washed away almost before I walked into the safety of the worship center, I KNEW that He was talking to me, was with me. Even during the darkest hours of the night when, afraid to leave her, I laid awake, heart pounding, mind racing, stomach turning. It was time to rest. In Him.
So He met me in my two year old’s room at nap time. Curled into the fetal position, wrapped around my bundle of energy, watching splayed lashes over sweetly rounded cheeks, chubby hands clutching his favorite blankie, silent tears wetting his soft hair, I miraculously matched my rapid breathing to his quiet rhythmic breaths, and sent out a silent thank you prayer…and slept.
Countless times He met me in those first few weeks, in the dark, where I was. With Truth, and Love, and Light. Until I was no longer struggling for every breath, but treading water. There were still moments, sometimes days, where the waves would come, or evil would twist my thoughts, even scripture, like living seaweed wrapped around my legs and pull me back under, but He, ever loving, ever merciful, ever faithful, had prepared me for it and blessed me with so many people, pouring out Christ’s love through texts, Facebook messages, food, hugs and prayers, breathing His word into my life’s lungs, that I KNEW there was hope. There was still light, even if I couldn’t always see it.
The light shines in the darkness, and the darkness has not overcome it.