The weight of concern for my child’s future after I’m gone is a burden that often surfaces unexpectedly. It serves as a constant reminder that my experience as a mother is vastly different from that of my peers. Even the dynamics between my children are not what I had envisioned or hoped for.
Here are three reasons why parents like me feel an intense obligation to remain present:
1. No One Knows Him Like I Do.
When my son Lucas moves around the house, I can recognize his unique sounds and movements. For instance, his gentle snuffle as he plays in the living room indicates whether he is happy or anxious. I can sense when a meltdown is imminent or when he is simply tired.
The smallest cues, like the slight droop of his bottom lip, signal that he might start crying, allowing me to intervene before it happens. I can tell if he is sleeping soundly or if he is awake, lost in his thoughts. These insights come from a deep connection that I can’t easily convey to anyone else. There’s no way to create a “Lucas manual” for future caregivers. While there will be people who love him and look out for him, none will know him as intimately as I do. When I pass, I take that invaluable understanding with me—a bond that I cherish but also wish I could share.
2. His Needs May Never Change.
The sweetness of a baby’s vulnerability reassures you of your protective role. As children grow, that vulnerability typically evolves into independence, allowing them to seek guidance from friends and mentors. I know that one day my typical son, Liam, will rely on others for advice. But Lucas’s journey may be different.
I often wonder if he will ever form lasting friendships or romantic connections. While it may seem harsh, it is a realistic consideration that has shaped my perspective. Unlike Liam, who will eventually navigate life on his own, Lucas may always rely on his family for support. The reality is that I need Lucas just as much, if not more, than he needs me. My greatest fear is what will happen to him after I’m gone, which is why I feel compelled to stay.
3. He Might Forget Me.
This fear stems from uncertainty rather than certainty. After Lucas’s assessment for autism, it was noted that he recognized three adults: me, his father, and my late mother, who played a significant role in his life. Despite her frequent presence, Lucas seems unaware of her absence, as he doesn’t show recognition when I mention her name.
This thought fills me with sadness. The woman who cherished him might not exist in his memories, and I fear the same fate could befall me. Could I become just a distant figure in his mind? While I might be underestimating his abilities, the unpredictability of nonverbal autism makes it difficult for me to gauge what he remembers. When I’m no longer here, will I still hold significance for him?
Despite my fears about mortality, I’m not sure I would want to live forever—watching loved ones pass and witnessing the world change in disheartening ways. It’s a fear that often feels overwhelming. I worry for Lucas in a world that can be unkind to those who are different. Stories of mistreatment toward individuals like him haunt me, and I try to push those thoughts away, reminding myself that such things happen to others, not to families like mine.
For now, I choose to live in the moment. I focus on the beauty of my boy and the joy we share. I collaborate with his school to enhance his skills and introduce him to new friends, educating others about his uniqueness. By using platforms like social media, I am determined to show the world the incredible person Lucas is, hoping to foster understanding and acceptance. If I can build a community that supports him, perhaps the thought of leaving him won’t be as daunting.
In the meantime, I find myself searching for ways to extend my time with him, looking for the proverbial fountain of youth.
In summary, raising a child with a disability presents unique challenges and fears, particularly concerning their future and well-being after a parent’s passing. The bond shared between parent and child is irreplaceable, and the worry about being forgotten weighs heavily. However, focusing on the present and fostering a supportive community can help alleviate some of these fears.