The foundation shakes slightly when your newborn is diagnosed with a rare condition. It feels as if it could engulf you when you realize that a NICU doctor has to hand out two stapled pages to their team summarizing your child’s illness. They had never encountered a child with Mia’s diagnosis, nor had they even heard of Pallister-Killian mosaic syndrome (a rare disorder characterized by low muscle tone, cognitive challenges, distinct facial features, and various health complications).
At first, I felt lost in this unfamiliar territory; those we depend on for guidance and expertise had none to offer. Questions flooded my mind, far outnumbering the answers. I would come to learn that this is a common experience for parents navigating the world of rare diseases.
The National Institutes of Health estimates that 25-30 million Americans are affected by rare disorders. While the number of individuals with Mia’s specific diagnosis is minimal, the reality is that countless others are struggling with some form of rare disease. We consider ourselves fortunate to have a diagnosis because many families face the frustration of uncertainty regarding their loved ones’ conditions, compounding an already difficult journey.
Mia spent nearly a quarter of her first year in the hospital. There have been moments during this rare journey when I feared it would break us. I have uttered those terrifying words aloud. In the most challenging times, the only prayer I can manage through gritted teeth is a fragmented, Help. Us. We have no manual to follow, no roadmap to navigate. How does one endure a constant state of uncertainty?
During one of Mia’s lengthy hospital stays, I stumbled upon a profound quote from Eleanor Roosevelt while aimlessly scrolling through social media: “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, I’ve discovered, unfolds gradually rather than all at once. The smallest steps are significant in the grand scheme. But make no mistake—I choose acceptance. This decision is my display of courage. It allows me to embrace our reality and the uncertainty that accompanies it. Uncertainty exists in every journey; ours simply makes it more evident.
When combined, choice and acceptance create a formidable alliance. But when these are infused with faith, that’s when genuine progress occurs. I accept our situation while remaining steadfast in the belief that, regardless of what lies ahead, this life is inherently good. The term “accept” does not only mean to agree; it also signifies believing in the goodness of something—even when faced with immense hardship. Even in heartbreak. Even in those instances when I feel utterly lost and broken, when fatigue weighs on me heavily. Even in those dark times, I hold onto belief. Choosing acceptance is how I maintain my grip on this tricky ascent. Through this choice, I can confront each moment with courage and my best effort.
Sometimes, my best means fighting formidable battles for Mia. More often, my best is found in the simple joys of life. It’s in standing tall, breathing deeply, and offering love. It’s a sweet lullaby sung with our cheeks pressed together. It’s the warmest, most gentle care that communicates, “You are perfect. You are cherished.” Despite its challenges—perhaps because of them—this life is truly beautiful.
My courageous commitment is to remain firmly rooted in acceptance and the belief in goodness, regardless of circumstances. It’s my stable ground, allowing me to remain adaptive during turbulent times—resilient.
That’s the most important thing. That’s my greatest contribution.
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In summary, navigating life with a child diagnosed with a rare disease is an ongoing battle filled with uncertainty. However, through the act of acceptance and belief in goodness, we can find strength and resilience in our journey.
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