Over the years, I’ve worked diligently to develop a "toolkit" to navigate life's challenges and relationships. While my tolerance often feels boundless, repeated encounters with ignorance and a disconnect from reality can quickly deplete it. Similarly, my patience tends to run low for the same reasons. Recently, a series of absurd events has drained my patience, tolerance, and rationality to new levels. Reflecting on my last blog post, I recognize it was filled with anger, frustration, and negativity, reflecting a deep disillusionment with humanity. This bothers me, as it wasn’t the message I intended to share.
This blog was created to raise awareness about CDM—to share both the triumphs and the struggles faced by those living with CDM and their families. My goal was to build a space where we could exchange resources, tips, and encouragement to help make life better for individuals with CDM. However, this journey is not without heartbreak. The challenges we face often feel insurmountable, testing our hope, patience, and empathy. It forces us to harness an unyielding determination, adopting a "take no prisoners" mindset to secure the resources we need to keep moving forward.
Through this journey, I’ve come to realize how easy it can be to overlook the acts of kindness extended to us amidst the chaos. Too often, these moments of generosity are overshadowed by the fires I’m constantly trying to extinguish. I hate the thought that these acts of kindness might seem unappreciated simply because I’m too preoccupied with the next challenge.
I want to take a moment to acknowledge and express my deep gratitude for those acts of kindness. I see them. I notice the books that quietly appear, the new outfits and toys left for Zayden, and the offers to lend vehicles or run errands for groceries and medications. I notice the laundry that’s washed, dried, folded, and put away while I’m occupied with other pressing needs. These gestures may seem small, but they mean the world to our family.
After a long journey, I’m happy to say we now have an almost complete nursing team for Zayden—an incredible group of four individuals who are nothing short of amazing. Our first long-term team member drives 45 minutes each way, even on good days. Another member drives an hour and 40 minutes, twice a day, to provide consistent care. A third member juggles her full-time job while working two to four days a week in our local area, demonstrating unmatched compassion and dedication. Our newest team member, a male nurse, also drives 45 minutes twice a day, providing a welcome respite for Zayden and Grampa amidst the predominance of estrogen from Grammie, GG, and the rest of Zayden’s care and therapy team.
Our team is diverse, both in age and in personality—ranging from calm and collected to energetic and high-strung. Despite these differences, they come together seamlessly, each bringing unique skills and strengths to support Zayden and our family. Their commitment goes far beyond their job descriptions, offering not only care but also comfort, humor, guidance, and unwavering support. They are invaluable, and I wish I could compensate them in a way that truly reflects their worth.
I will continue to advocate for Zayden’s care team and for all home health care workers. They deserve fair pay and better benefits, which are currently hindered by the inadequate reimbursement rates from insurance companies. These companies need to recognize that investing in higher reimbursement for home health care agencies ultimately saves money by keeping individuals with special needs in their homes rather than pursuing more expensive care alternatives. Families like ours depend on these services, and it’s time for the system to reflect their true value.
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