Worries about the future of my son, Alex, weigh heavily on my heart and often surface unexpectedly. This anxiety serves as a constant reminder that my experience of motherhood diverges significantly from that of my friends. Even among my children, my responsibilities vary in ways I never anticipated or desired.
Here are three reasons why mothers like me feel an overwhelming need to stay alive:
-
Understanding My Child’s Unique Needs
When Alex moves around the house or engages in his typical flapping while I prepare dinner, he emits a subtle sound that only I can recognize. This sound reveals his emotional state—whether he is happy, anxious, or on the verge of a meltdown. I can identify the slightest change in his expression or body language that might suggest he is about to cry. I know when he is asleep or simply lying in bed, lost in his thoughts. This intimate knowledge cannot be documented in a manual; there’s no way to convey the nuances of our bond. While others may love and care for him, none will understand him quite like I do. When I pass, this deep connection will go with me, and as much as I cherish it, I wish I could somehow impart that understanding to those who will care for him after I’m gone. -
His Need for Me May Be Lifelong
The innocence of a child is heartwarming, affirming your role as a protector. As children grow into adulthood, they often seek guidance from friends and partners. However, I find myself questioning whether Alex will ever reach that point. Unlike my other son, Max, who will undoubtedly seek advice from peers, Alex may always rely on family. The prospect of him needing me eternally is both heartbreaking and realistic. I fear for him in a world that often misunderstands those who are different and vulnerable. The thought of leaving him behind, without the love and protection he deserves, is a terrifying reality I cannot face. -
The Fear of Being Forgotten
This fear comes from a place of vulnerability rather than certainty. During Alex’s assessment for autism, it was noted that he recognized only a few adults, including me and his father. My mother, who adored him, passed away three years ago, and while my son Max still grieves for her, Alex seems unaware. He looks at her photographs without recognition; her memory appears lost to him. This realization fills me with sorrow, as I fear I might share the same fate. Could I, too, become just a fleeting memory to my son? The nature of nonverbal autism complicates my ability to gauge his thoughts and memories. When I’m gone, will I still matter to him? I cannot say.
Yet, while I dread the thought of my own death, I also grapple with the idea of living indefinitely—outlasting my partner and children or witnessing the world transform in ways I cannot comprehend. My fears may sound like science fiction, but they are deeply rooted in the uncertainty of life. I’m terrified of leaving Alex in a world that can often be cruel to those who stand out.
For now, I focus on the beauty of our relationship and the present moment. I collaborate with his school to nurture his skills and introduce him to new people who may not understand him at first. I utilize social media to raise awareness about the challenges he faces, aiming to encourage others to see individuals like Alex through a lens of empathy rather than judgment. If I can create a network of support for him, perhaps the future won’t feel quite as daunting. Until then, I find solace in seeking out ways to prolong my life and safeguard his future.