Complexities of Relationships

This blog is a personal space where I share our family’s journey navigating the challenges of Congenital Myotonic Dystrophy Type 1. My search for answers finally began to make sense with the birth of my grandson, Zayden.

Some of the most heart-wrenching moments of our lives came when doctors advised us to take Zayden off life support and focus on comfort care, insisting his condition would only deteriorate. In those early days, I had an unsettling sense of déjà vu—Zayden’s symptoms mirrored what I had witnessed in my daughter Blaize as a baby and toddler. It felt like history repeating itself. That’s when I questioned the explanation that Zayden’s challenges were simply "brain damage from a difficult delivery." 

For years, our family was let down by the very systems we trusted to help. My concerns about Blaize’s developmental delays, health issues, emotional struggles, and even her worsening dental problems were dismissed. Instead of being heard, I was labeled with accusations like Munchausen Syndrome by Proxy and even faced CPS investigations during Blaize’s early years. Later, as Blaize transitioned to adulthood, these systems once again failed us. Despite multiple diagnoses—Bipolar Disorder, Oppositional Defiant Disorder, and Intellectual Disability—we were left without actionable treatment plans, meaningful guidance, or affordable solutions.

Deep down, I knew there had to be more to the story.

Frustrated and heartbroken by the medical system’s refusal to truly listen—something I’d faced before—I was determined not to let vague guesses define my grandson’s care or my daughter’s future. This time, I pushed for genetic testing, desperate for clarity. In July 2024, we finally got the answers we needed. Zayden’s diagnosis revealed Congenital Myotonic Dystrophy, and in turn, Blaize was diagnosed with Myotonic Dystrophy, likely juvenile or adult onset. The pieces of the puzzle finally started to come together. 

Over the years, I worked tirelessly to build a support system for Blaize and myself—a group that became our family. This network stuck by us through thick and thin. While some may have thought I was overprotective or excusing Blaize’s behavior, they still showed up when we needed emotional, financial, or physical support. Even when they didn’t fully agree with my decisions or Blaize’s actions, they stood by our side, and for that, I will always be deeply grateful.

When Zayden passed away on December 10, 2025, it shattered our family and strained the support system we had built. Old tensions resurfaced, creating rifts with people we cared about. Many opened up to me about their frustrations, and while hard to hear, I understood their feelings. I’ve had similar thoughts about some of Blaize’s choices and the impact they’ve had on those around her.

As I navigate the grief of losing Zayden, I’m also working to honor and understand the emotions of those around me. Balancing this weight is exhausting beyond words. As Blaize’s mom, my instincts tell me to protect her—from herself, from others’ judgments, and even from my own anger and fear. Anger at her choices, her struggles to process emotions in healthy ways, and her self-sabotaging behaviors. I want to shield her, even though carrying this role for so long has drained me. I fear our family will continue to face these challenges for years to come. And there are moments when I feel like I just can’t keep up this soul-crushing balancing act of caring for an adult with special needs.

And then there’s the guilt. Because deep down, there’s a part of me that wants to shake Blaize and say, "Enough already! It’s time to take responsibility for your actions. It’s time to see how your choices affect those around you." These are thoughts I’ve buried for years, but I can’t ignore them anymore. Intellectually, I know her behavior stems from the effects of Myotonic Dystrophy. But I also wonder—how much of this stems from the protective bubble I created around her? Have my efforts to shield her actually done more harm than good? It’s yet another balancing act I feel I’ve failed. 

Myotonic Dystrophy is a condition few people understand, even within the medical community. Its symptoms don’t always align predictably with genetic markers. The same DMPK repeat count on chromosome 19 affects individuals differently. A higher count doesn’t necessarily mean more severe effects, and a lower count doesn’t guarantee milder symptoms. 

Many families don’t even realize they carry the gene until a child is diagnosed. This condition is inherited, passed down from parent to child—it’s not the result of random mutation or chance. Initially, I thought I might have passed on the gene, but genetic testing of my mother, me, and other relatives ruled that out. We now know Blaize inherited the gene from her father, who inherited it from one of his parents. This piece of the puzzle has not been confirmed because her father refuses to be tested.  Like many families, we’re still piecing together the full picture.

Unfortunately, some family members avoid genetic testing out of fear it might place blame on them for a child or grandchild’s diagnosis. What they don’t realize is that testing can provide critical information—key to advancing treatments, understanding the condition, and potentially protecting families from wrongful accusations of harm. By stepping up, these individuals could play a vital role in furthering knowledge and care for Myotonic Dystrophy. They could truly become heroes in the journey to greater understanding.  

I understand that Blaize and her father didn’t know they were carriers of this condition before Zayden’s birth. But now that they do know, it’s time to face that reality. It’s time to take responsibility and ensure this disease isn’t passed on to future generations through the choices they make moving forward.