The past month has been a rollercoaster—overwhelming, frustrating, and full of challenges. It feels like every ounce of energy has gone into putting out fires instead of celebrating the incredible strides Zayden has made. So, I wanted to take a moment to share an update and highlight his amazing progress before diving into the tougher realities of life as a special needs family.
Zayden has been on fire lately! At 14 months old (adjusted age: 12 months), he’s reached milestones we were once told might never happen—how’s that for proving them wrong? His recent developmental checkup showed he’s on track for a 12-month-old in areas like fine motor skills, problem-solving, and emotional/social growth. How amazing is that? While his motor skills are closer to the 5- to 6-month range and gross motor skills around 6- to 7 months, we’re working with his therapists to keep moving forward. Every bit of progress fills us with hope and motivation to keep going.
And here’s the sweetest thing—Zayden has started saying "uh-oh," and he loves making his nurses laugh! He’s also copying us, like patting his bed when we pat ours, and he’s mastered the cutest two quick pats on his leg. He’s learning to transfer objects between his hands, and he’s finally playing with his toy piano using his fingers instead of just banging on it. His head control improves every day, and his smile? It could brighten an entire stadium. Recently, he started grabbing his legs and pulling his feet to his face—a milestone typically hit around 5 or 6 months. These small victories fill my heart with so much joy it feels ready to burst.
Zayden’s determination is nothing short of inspiring. Whether he’s stretching to grab a toy just out of reach or figuring out his G-tube button, his relentless “I’ve got this” attitude is awe-inspiring. Watching him tackle obstacles with such focus and resilience fuels us every day. Sure, there are constant frustrations—insurance headaches, subpar medical supplies, and equipment that doesn’t quite work for him. But Zayden’s progress and unshakable spirit make all the struggles worth it. His coos, curiosity, and boundless energy remind us daily of the joy he brings into our lives.
These past months, I’ve been knee-deep in efforts to get Zayden the equipment he needs, like tools for bath time, support gear for tummy time, and items to help us work toward crawling. We’re even fighting for a crib/bed that’s functional for both him and his caregiving team. It’s exhausting. Families shouldn’t have to shoulder the burden of endless research, coordination, and battles with suppliers and insurance companies. The constant denials—as if they know better than us what Zayden needs—are infuriating. These delays don’t just hurt families; they waste valuable resources (hello, taxpayer dollars!).
Add to that the balancing act of coordinating care while earning an income to cover mortgage, utilities, groceries, transportation (let’s not forget auto insurance and maintenance), and preparing for hurricane season, and it becomes a seemingly insurmountable challenge. When do we find time for errands, laundry, home repairs, or even self-care? The honest answer is, most families with special needs members will tell you that those things are luxuries we rarely have the time to even consider, let alone accomplish.
Curious to hear the rest of the story? Stick around for part two of this post.
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