As another week winds down, I’ve been reflecting on how advancements in technology have often led to the loss of essential, basic skills. These losses, though subtle, can sometimes harm both others and ourselves in ways we may not fully realize.
This week has been another busy one with Zayden’s doctor appointments and various therapies. Despite the tight schedule, I managed to order his medical supplies, set up future appointments, complete my caregiver certification training, and still get grocery shopping and laundry done. Zayden’s physical and occupational therapists are thrilled with his progress—he’s now rolling over, sitting up with minimal head support, and his neck and shoulder muscles are steadily strengthening. His leg braces are improving his ankle and foot positioning, helping his toes flatten rather than curling under like a ballerina en pointe. He’s been grabbing his toys more frequently and has even formed attachments to a few favorites that he refuses to let go of, even in his sleep. We’re also making strides in encouraging his legs to rest in a more natural position under his hips, and he’s tolerating it much better than before.
Zayden is becoming more vocal, even with his trach. It’s adorable—when he wants attention or is playing, he quacks like a duck. When he’s upset or doesn’t want to cooperate, he sounds like a growling bear cub, and when he cries, it’s like a braying donkey complete with crocodile tears. These sounds show us just how much Zayden wants to communicate, so we’ve taken steps to support his efforts. We’ve ordered him a felt picture/sticker board, a beginner sign language video program from Ms. Rebecca, and beginner sign language boards with crinkle books to help him explore new ways to express himself.
We also had to order him new clothes, as he’s outgrown almost all of his current outfits. This time, we opted for sizes 12–18 months and 2T, hoping they’ll last longer. Let me just say, shopping on Temu.com can be a bit dangerous for the budget—everything is so affordable and adorable, it’s easy to go overboard! In addition to clothes, we ordered Zayden a beach wagon, sunscreen, and UV-protective clothing. As the weather warms up and appointments become less frequent, we’re hoping to enjoy more outdoor activities like trips to the beach.
At his recent GI appointment, Zayden weighed in at 21 pounds and measured 29.25 inches long. The doctor switched him from the GJ feeding tube system to a G feeding tube system, and he’s adjusting wonderfully—no vomiting or signs of GERD. This new system is a relief, as it’s less restrictive. We can even disconnect the G tube between feedings, giving him more freedom to move and one less thing for his curious little hands to pull on.
After discussions with his Early Steps team, we’ve decided to transition his occupational, physical, speech, and feeding therapies to a home-based system. This change will likely benefit Zayden more, as it eliminates the exhaustion caused by long car rides before therapy sessions. It’s also a welcome change for me—it will save about 530 miles of driving per week (roughly $300 a month on gas) and give me an additional 7–9 hours each week to focus on other tasks for Zayden and around the house. I might even have time to start a small vegetable container garden to help us save on groceries.
Completing my caregiver certification has also been a huge step forward. Becoming a paid caregiver will help ease the financial burden of covering Zayden’s medical needs, household bills, and transportation costs for his appointments. Like many families, we’ve faced financial challenges, but caring for a loved one with special needs adds another layer of complexity. The lack of home health care nurses, limited access to special needs daycare, and inflexible work schedules can make it nearly impossible for caregivers to take on jobs outside the home. This often leads to reduced household income, utility shutoffs, and even the risk of eviction or foreclosure. The stress of juggling these challenges can feel overwhelming, especially when there’s no way to “rob Peter to pay Paul” because Peter is already broke.
To be honest, I wouldn’t have made it this far without the emotional and financial support of a few family members and close friends. Their kindness—whether lending an ear for me to vent without judgment, or sending essential items like diapers, clothing, gas cards, and funding for my certification classes—has been invaluable. I want to express my deepest gratitude to those who have helped lighten our load. Your open hearts and actions, often without being asked, mean more than words can ever express. When people say it takes a village, they aren’t kidding—it truly takes a community to support one another in times of need.
If you take one thing away from this post, let it be this: take a moment to look around. Notice the family down the street struggling to make ends meet, the homeless person on the corner, or the neighbor who seems overwhelmed. Consider how you might step in—how would you want someone to help if you, your partner, your child, or your parent faced an unexpected challenge? Could you be the person who lends an ear, quietly helps meet a need, or offers a small gesture that makes a big difference? Even the smallest acts of kindness—a toy, a meal, or a listening ear—can help someone see the light at the end of the tunnel. And in doing so, you might even find a sense of fulfillment in knowing your actions made a difference.
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