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Caring for Zayden on a daily basis has been one of the most rewarding, yet challenging, experiences of my life. While I have court-ordered physical custody of Zayden, his care is a collaborative effort. He currently lives with me in Florida, and I handle roughly 90% of his daily needs. I am fortunate to have a dedicated daytime nurse who not only provides excellent care during her shifts but also checks in on her days off. Zayden's great-grandmother (GG) and his adopted grandpa, Bill, lend their support whenever possible. Zayden’s mother visits when her schedule allows, and his parents make it a point to video call with him almost every day. Additionally, I ensure his parents are involved in his care by sharing all medical updates and joining conference calls for doctor appointments when they’re available. While the arrangement may not be perfect for everyone, the priority is Zayden’s well-being. At this point in time, living with me in Florida is what’s best for him. When Zayden was transferred from WV University to Johns Hopkins All Children's Hospital, he weighed just 12 lbs 7.3 oz and was 23.62 inches long. Today, he’s thriving at 25 lbs 0.4 oz, 26.5 inches, and has five teeth with a sixth on the way.
As a grandmother in my mid-50s, raising a grandchild was never part of the plan. Like many grandparents, I envisioned spoiling my grandkids and then handing them back to their parents. Late-night feedings, teething, and endless appointments were not in my blueprint. But life rarely adheres to our plans.
On June 10, 2024, my "grandmother plan" took a significant turn. Things changed even further when both Zayden and his mother, Blaize, were officially diagnosed with Myotonic Dystrophy Type 1. It became clear that West Virginia lacked the resources necessary to support Zayden’s specialized medical needs. After extensive research, countless conversations, and deep soul-searching, I proposed a plan to Blaize and her husband that would best serve Zayden’s unique needs while also addressing their family's circumstances.
As a family, we weighed the pros and cons of where Zayden could receive the best care. Unfortunately, the recommendations from officials in West Virginia left us deeply concerned. Limited specialists, inadequate nursing care, and long travel distances for essential appointments were significant hurdles in Martinsburg, WV. Here’s how the options compared:
If Zayden stayed in West Virginia:
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Pro: He would be in the care of his parents.
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Con: Multiple referrals to out-of-state hospitals (Ohio, Pennsylvania, North Carolina) for specialists, with remaining doctors three hours away.
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Con: Parents and Zayden would share a small bedroom with two dogs in a crowded household.
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Con: Reliable transportation for frequent medical appointments was unavailable.
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Con: Extensive travel time in a car seat would be disruptive and exhausting for Zayden.
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Con: Parents lacked the medical knowledge needed to fully understand and advocate for Zayden’s condition.
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Con: Doctors and social workers were hesitant to release Zayden into home care under these conditions.
If Zayden moved to Florida:
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Pro: He would live in a loving, supportive family environment.
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Pro: Johns Hopkins All Children's Hospital, ranked 3rd nationally for Myotonic Dystrophy care, is nearby.
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Pro: Zayden would have a spacious living area designed around his needs and comfort.
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Pro: All necessary specialists and future doctors are within two hours of my home, significantly reducing travel time.
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Pro: My medical training and NICU experience provide a strong foundation for understanding and advocating for Zayden’s care.
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Pro: Doctors and social workers fully supported the move to Florida, granting joint custody to Zayden’s parents and me.
While there were challenges, such as the distance between Zayden and his parents and increased expenses for his care, the benefits of relocating to Florida far outweighed the drawbacks. On December 11, 2024, the court granted me physical custody, with concurrent custody for his parents, ensuring we all have equal rights in Zayden’s life.
Zayden’s progress has been remarkable. Doctors and therapists are continually amazed by his development. He now takes two 30-minute breaks off the ventilator daily, holds his head up when sitting, purposefully moves his arms and legs, and plays with toys for extended periods. He’s even started vocalizing and turning his head to express emotions. Every small milestone, from learning to smile to grasping toys, fills my heart with hope for his future.
Zayden has already proven many professionals wrong with his resilience and determination. He’s a little warrior, and with the right support system, I have no doubt he will continue to defy expectations. My role as his grandmother and advocate is one I take on with pride, and I will always prioritize his well-being and success. To those who question my commitment or try to interfere, I ask: What have you done for Zayden? Where were you when he needed you most?
Past grudges and negativity have no place in Zayden’s life. This journey is about giving him the best possible future, and I will remain steadfast in my role as his advocate and supporter. Together, we will let Zayden show the world what he’s capable of, without allowing limitations to define him—or us.
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