The thought of what lies ahead for my son after I’m gone weighs heavily on my heart. It often surfaces unexpectedly, reminding me that my experience of motherhood is profoundly different from many others. My responsibilities towards my son, Max, diverge significantly from those I have for my other child, Alex, in ways I never truly anticipated.
Here are three key reasons why parents like me feel an overwhelming urge to stay alive:
1. My Unique Understanding of Max
When Max moves around the house, whether he’s bouncing in the living room or climbing the stairs, he makes a soft sound that I’ve come to recognize well. The tone of that sound tells me everything—if he is happy or anxious, if he’s on the brink of a meltdown or merely tired.
I notice the slight droop of his lip, a barely perceptible sign that others might miss, indicating he’s about to cry. I instinctively pull him close to soothe him before the tears fall. When he’s lying in bed, I can tell whether he’s fast asleep or awake, likely plotting his next adventure. This deep understanding of his needs isn’t something I can easily teach anyone else. There’s no way to create a “Max manual” for future caregivers. They may love him, but they won’t know him like I do. I fear that when I am gone, that unique bond and understanding will vanish with me.
2. His Ongoing Dependence on Me
The helplessness of an infant is a beautiful reminder of a parent’s role as protector. However, as children grow into adulthood, that reliance often shifts. They seek advice from friends and partners rather than from their parents. While I recognize that one day Alex will navigate life independently, I worry that Max may always need that constant support.
It’s a harsh reality, but I’ve found that facing tough truths serves me better than clinging to blind optimism. My son may never form deep friendships or romantic connections. I know he needs his family—the ones who understand him, love him, and protect him. But in many ways, I find that I need him even more. The thought of leaving him behind in a world that often doesn’t understand his differences terrifies me.
3. The Fear of Being Forgotten
This fear stems from a place of anxiety rather than reality. When Max was evaluated for autism, he recognized only three adults: me, his father, and my mother. My mother was a constant presence in his life, yet now that she has passed, I see how little he seems to remember her. Oliver, my other son, mourns her loss deeply, while Max appears unaffected.
The idea that I could also become a mere memory is profoundly unsettling. I worry that I might fade from his thoughts, becoming just a figure from his past. The challenges of nonverbal autism mean I often find myself guessing what he remembers. Will I still matter to him when I’m gone? It’s a question without a clear answer.
While I don’t wish for immortality, I grapple with the fear of leaving my child in a world that can be unkind to those who are different. I’ve heard stories of individuals like Max being exploited or mistreated, and I push those thoughts aside, reminding myself that such things don’t happen to families like mine—yet I know everyone probably thinks that until it’s too late.
For now, I choose to live in the present. I cherish the beauty of my relationship with Max and collaborate with his school to develop his skills. I aim to educate others about understanding children like him, advocating for compassion and acceptance. By using social media, I introduce Max to the world to promote awareness and foster a supportive community around him. If I can leave him with people who truly “get” him, perhaps it will ease the burden of my absence when the time comes. Until then, I continue searching for ways to prolong my time with him, even jokingly considering the elixir of life.
In summary, the journey of parenting a child with a disability is filled with unique challenges and fears. The deep connection I have with my son, combined with the anxiety of what his future holds without me, drives my determination to stay present and active in his life.
For more insights on parenting and home insemination, check out this excellent resource on IVF. And if you’re exploring options for at-home insemination, consider visiting this authority on the topic.