Preface: Few people are more invested or effected by our sicknesses than our mothers. The best of them journey with us, advocate for us, and comfort us. Our mothers have their own stories to tell, and I was immensely grateful when my mom agreed to share hers. Although we lived the same events, we view them through entirely different lenses, and neither of us walked away from this battle unscathed. We both now carry different but permanent scars of sorts, mine obvious and physical, but hers perhaps deeper still as only a mother can understand. I couldn’t be more humbled to share her voice and honor her story in the hopes that it will resonate, validate, and ultimately bring hope and comfort to so many other moms just like her, in the same way that she’s always brought hope and comfort to me.
— Anna Kowlessar, Founder of People Hope
From the moment a child is born, they are inexplicably knit to their mother’s heart. This doesn’t change, no matter how grown they become. Their joys are her joys. Their triumphs are her rejoicing. Their struggles are her reason to be on her knees. And their pain is her anguish. Because when a child hurts, a mother bleeds. I was about to experience this on a whole new level.
I had all but finished raising our youngest daughter, Anna. She was attending college a thousand miles from home, enjoying her new-found independence while I was constructing my now empty-nest reality. My husband Bill and I were proud of the woman our girl had become and were anxious to see the course her life would take.
It was a mid-June afternoon. Bill and I were canoeing on Lake Superior when my cell phone rang. It was Anna. I quickly put my paddle down to answer the call and was immediately immersed in an all-too-familiar conversation about the strange and growing number of health problems she was experiencing. The onslaught of mysterious symptoms had started suddenly just a few months before. I thought she had developed food allergies. But, despite the dramatic changes to her diet, things were not improving. In fact, they were getting much worse. She and I talked and cried together for over an hour, as Bill prayed on the other end of the canoe. I had grown perplexed and frustrated by her persistent symptoms and felt completely helpless trying to problem-solve from such a distance. I needed to be with my girl and give her hands-on care. She agreed to the recommendation to return home, at least temporarily. Four days later she was in my arms. Sick and exhausted, but at least she was home. I was certain now I could get her the help she needed.
I remember sitting in a Barnes & Noble coffee shop with her, now with several doctor appointments already scheduled. I grabbed her hands, looked her squarely in the face and said with fierce conviction that we would get to the bottom of this thing. I watched her eyes swell with tears as my sense of hope began to fill her tired places. I was seeing a now 21-year-old woman on the threshold of her adult life. I was sure a few calculated medical tests would provide a diagnosis and treatment plan to get her well again quickly. There had to be a simple solution. I was wrong.
Our first few visits to specialists proved to be our baptism into the sterile corridors and stuffy waiting rooms of the medical environment Anna and I would soon know like the back of our hands. The tests began to come back “normal,” one after another. So we looked deeper. Another hospital gown. Another paper-lined table and cold stethoscope. Another account of the baffling symptoms. Still no explanations. I felt a growing warrior mentality rising within me and solidifying my determination to to find a diagnosis.
I watched my daughter become an unwitting professional patient of sorts, stoically sitting in one exam room after another. Never complaining, grateful for the opportunity to search for answers. But test results would teach her not to pin her hopes on a solid diagnosis. Often, she and I left appointments in complete silence, knowing that words would only give the disappointment more fire. Together we choked back despair and I tried to swallow her pain. With every doctor visit I watched the hope drain from her spirit. It shattered my heart and galvanized my resolve to make her well.
I tried everything I could think of. Doctors, specialists, chiropractors, physical therapists, wholistic and functional medicine. Blood tests, allergy tests, muscle tests, hormone tests. Scans, ultra sounds, CT’s, MRI’s…you name it. I threw everything I had into this battle, desperate to give my girl a healthy future - wishing I could take on her illness myself.
The first time I rushed my daughter to the ER I saw her in excruciating pain I had never witnessed before. Her body writhed in agony while her face bore the weight of utter distress. I rubbed her back, her arms, her legs and offered words of calm reassurance. It was all I had to give. I instinctively assumed the role of her advocate and firmly pleaded with the medics to relieve her pain. Inwardly I screamed in desperation of my own. It wasn’t until we finally returned home that I removed my armor and let the experience flood my senses. It was powerful and overwhelming. I suddenly realized I was emotionally hemorrhaging from places I never knew existed. The image of my daughter in unspeakable pain, now forever etched in my memory, is still nearly too much to bear.
Moms are supposed to guard their children from harm and shield them from pain and patch their wounds and love them so deeply that they cannot help but be strong and whole and ready to thrive. I had poured decades of my life nurturing her every step, celebrating each achievement, nudging her to new heights. This was the time she was supposed to be finding her wings. And I was not able to help her, nor able to make her painful reality less invisible to the medical world. I was powerless and in desperate need of strength and wisdom beyond myself. Day by day, and sometimes moment by moment, my empty hands reached out to God for the encouragement I needed…
“Do not fear, I am with you. Do not be afraid; I am your God. I will help you, I will strengthen you. I will uphold you with my victorious right hand.” - Isaiah 41:10
During the months that followed, I resolved to take on any role that might prove helpful. I was only too happy to be the cheerleader, the midnight nurse, the appointment keeper, the listener, the researcher, the prayer warrior. When countless doctor visits, tests, and procedures gave us no diagnosis or treatment plan, I developed broader shoulders to bear the looks of sympathy and those of disbelief. Above all else I became the torch bearer of hope, beating off the darkness of discouragement and the encroaching boundaries of chronic illness.
At the time, I rarely allowed myself to think about how I was feeling. It was my daughter, after all, that was suffering. She was my sole focus. Even now it is difficult to shine a spotlight on my own experience. But, in all honesty, I know I suffered right along side my girl. It was a suffering of the heart and it was real.
Few people understood what we were going through. How could they, really, unless they had gone through it themselves? But the lack of understanding was isolating at times. Sure, well-meaning people offered medical tips and suggestions, many of which we had thought of or tried months earlier. Most challenging, however, were fellow Christians that sneered with judgement when my daughter was not miraculously healed following prayer. That cut me to the quick.
Of course I had prayed. Every day since the ordeal began. I prayed for healing. I prayed for insight and wisdom. I prayed for revelation. I prayed for a miracle. And I knew all the while I was praying to the God that had the power to provide all of it. Without so much as a full breath, my God could make my girl healthy once again. Yet, in His Sovereignty, He chose not to. At least not yet. This was hardest on Anna. I watched the knees of her faith buckle at times as she wrestled with this reality and asked the question, “Why? At the same time, God reinforced my faith with an understanding that as much as I loved my daughter, He loved her even more and she was always and forever on His mind. I would need to walk in total trust and faith…enough to carry me and enough to uplift Anna as well.
And so she and I walked. One foot in front of the other. We walked through days with ups and downs and began to settle into what would become Anna’s new normal. Not the life I had dreamed of for my little girl, but the one that God was carefully laying before her. The one He was equipping her for. The one that I would continue to trust was in His faithful hands.
Years have passed since Anna’s illness began. She has since stepped into a life on her own with a faith that is more tenacious than I ever dreamed possible. She has developed methods of dealing with most of her symptoms and she continues to learn ways to cope as new health issues arise. She has poured out her life, her experiences at the feet of Jesus and He is using her in remarkable ways to touch the lives of others in need. That alone is enough to fill my heart with joy and immense gratitude.
I am no longer Anna’s primary health advocate. I passed that baton to her loving husband, Randy, when they married last year. It was hard to let go though, having gripped it so tightly for so long. But I am comforted to know there is someone with my girl when she has a need - someone I trust completely to hold her hand and reassure her when symptoms flare.
My main task now is to pray. And prayer, I’ve learned, is no small thing. Every time I pray, God listens with intensity. Although He hasn’t healed my daughter yet, He’s far from finished writing her story. So my prayers continue and my hope is held high.
I feel so privileged to have been at my daughter’s side through some of the darkest days of her life. It deepened my relationship with her and greatly enriched my faith. God has been my lifeline of hope through every trial and disappointment. He has given me peace every time my circumstances gave me turmoil. I don’t fear for the future. God has patiently taught me to trust Him with the days ahead, even those that will undoubtedly be hard.
I have also learned that motherhood is a life-long journey of the heart. Though painful at times, it can be one of the greatest gifts on earth. For those who mother a child with chronic illness the venture is not easy. But with God, a mother is never alone. And with His faithfulness and promises to stand on, there will always and forever be hope.
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