The world feels unstable when your newborn is diagnosed with a rare illness. My heart sank further when a NICU doctor handed out two stapled pages to his team, summarizing my daughter’s condition. They had never encountered a case like Clara’s, nor had they heard of Pallister-Killian mosaic syndrome, a rare disorder marked by weak muscle tone, cognitive challenges, distinct facial features, and various health complications.
In those early days, I felt disoriented; the professionals we depended on lacked the knowledge we desperately needed. Questions overwhelmed us more than answers. I would soon discover that living as the mother of a child with a rare illness means navigating a landscape filled with uncertainty.
According to the National Institutes of Health, around 25-30 million Americans are affected by rare diseases. While Clara’s specific diagnosis affects only a few, many families are grappling with some form of rare condition. We consider ourselves fortunate to have a diagnosis, as many endure the frustrating search for answers.
Clara spent nearly a quarter of her first year in the hospital. There were moments during this challenging journey when I feared we would be broken by it all. I voiced these terrifying thoughts out loud, and at times, all I could manage to pray was a hurried, “Help. Us.” Our future feels uncharted, lacking any guide or roadmap. How does one persevere in a constant state of uncertainty?
While scrolling through social media during one of Clara’s lengthy hospital stays, I stumbled upon a profound quote from Eleanor Roosevelt: “You have to accept whatever comes and the only important thing is that you meet it with courage and the best you have to give.”
Acceptance has been a gradual process for me, unfolding piece by piece rather than all at once. Each small step makes a significant impact. Choosing acceptance is an act of bravery. It allows me to embrace our reality and the uncertainties that accompany it. Every journey has its uncertainties; ours just makes them more visible.
The combination of choice and acceptance is powerful. When infused with faith, it becomes transformative. I accept our reality while remaining resolute that, regardless of what lies ahead, life can be beautiful. Acceptance means not just agreeing but also believing in the goodness of our circumstances, even amidst challenges and heartbreak. Even during those times when I feel lost and utterly exhausted, I choose to believe. This choice helps me navigate this rocky path with courage and grace.
My best may often involve fighting significant battles for Clara, but it mostly consists of simpler, yet equally meaningful actions. It’s about being present, breathing, and showering her with love. It’s singing her a lullaby with our cheeks pressed together, conveying, “You are perfect. You are cherished.” Despite the hurdles, or perhaps because of them, our life is truly beautiful.
My courageous commitment lies in remaining anchored in acceptance, trusting in goodness no matter the circumstances. This acceptance provides me with a solid foundation, enabling me to stay resilient amidst life’s storms.
It’s the only thing that truly matters.
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Summary:
Living with a child who has a rare disease brings continuous uncertainty. Acceptance and faith are key components in navigating this challenging journey. By focusing on love, presence, and resilience, we can embrace the beauty of life, even amidst its difficulties.