The Weight of a Parent’s Heart: Fears of Leaving a Child with a Disability

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As a parent of a child with a disability, the thought of what will happen to my son after I’m gone weighs heavily on my heart. It’s a constant reminder that my journey through motherhood looks different from that of my friends. My responsibilities toward my son, Noah, differ greatly from those I have for my other child, Ethan, and it’s more challenging than I ever anticipated.

Three Reasons for Our Fears

Here are three reasons why parents like me feel an intense fear of leaving this world:

1. No one understands Noah like I do. When Noah is playing in the living room, I can hear his distinct sounds—soft snuffles that tell me if he’s happy or anxious. I know how to interpret these little cues better than anyone else. For instance, I can tell when he’s about to cry just by the slight droop of his bottom lip. I wish I could create a “Noah manual” for whoever might care for him after I’m gone, but the truth is, there’s no way to fully convey that deep understanding. While there may be others who love him, no one will ever know him the way I do. When I leave this world, that unique bond will be gone with me.
2. He may always need me. The tender vulnerability of a child is something that evokes a natural instinct to protect. However, as children grow, they often develop independence and turn to friends or partners for support. I can see this happening with Ethan, but I worry that Noah may always rely on his family for guidance and love. It’s tough to accept, but I’ve learned that facing reality often serves me better than holding onto optimism. The thought of Noah needing me indefinitely is daunting, and the fear of what will happen to him when I’m no longer around is something I grapple with daily.
3. What if he forgets me? This fear is born from my own anxieties rather than any concrete evidence. During Noah’s autism assessment, it was noted that he recognized only a few adults, including me and my partner, Jack. My other son, Ethan, still talks about my grandmother, who adored them both, but Noah seems less aware. He doesn’t show signs of remembering her, and that thought fills me with sadness. What if, after I’m gone, I become just a distant memory—a fleeting presence in Noah’s life? This uncertainty weighs heavily on me as I navigate the complexities of nonverbal autism.

While I’m not wishing for immortality, I am terrified of leaving Noah in a world that often misunderstands those who are different. I hear stories about vulnerable individuals facing terrible situations, and while I tell myself that wouldn’t happen to my family, I know that fear is always lurking. For now, I focus on the beauty of my relationship with Noah and work with his school to help him grow. I also use social media to introduce him to the world, aiming to create a more understanding environment. If I can leave him with a community that accepts him, perhaps my departure won’t feel as heavy.

Until then, I’ll keep searching for solutions and embracing every moment with my boy.

In Summary

Parenting a child with a disability comes with unique challenges and fears, particularly around the future. The bond between mother and child is irreplaceable, and the worries about what happens after death can be overwhelming. However, by fostering understanding and community, there is hope for a brighter future for both parent and child.