As a parent raising a child with a disability, the thought of my mortality weighs heavily on me. It creeps into my mind unexpectedly, often reminding me that my experience of motherhood is profoundly different from that of my peers. My responsibilities to my children, especially to my son Ethan, are far more complex than I ever anticipated.
Here are three reasons why parents like me often feel that we simply cannot leave this world:
1. No One Understands Ethan Like I Do.
When Ethan moves around the house, I can hear his subtle sounds. A soft snuffle when he’s happy or a change in his breathing when he’s anxious—these cues speak volumes to me. I can interpret his emotions without him having to say a word. For instance, when I notice the slight quiver of his lip, I immediately know he’s on the verge of tears, and I can comfort him before it escalates.
I understand when he is awake at night, possibly dreaming of his next adventure or thinking about snacks. This intuitive connection is irreplaceable; I cannot provide a ‘manual’ for someone else to navigate Ethan’s world. While there will undoubtedly be people who care for him, none will possess the deep understanding I have. When I pass on, that unique bond will vanish with me.
2. His Need for Me May Never End.
The sweet vulnerability of a baby is a temporary phase. As children grow, they typically begin to rely more on friends and peers. This transition is both heartwarming and bittersweet. I know that someday, my typical son, Max, will seek guidance from others, but Ethan’s journey might be different. The reality is that he may always depend on his family for love, support, and understanding.
This possibility weighs heavily on my heart. The truth is, I need Ethan just as much as he needs me. The thought of leaving him behind in a world that can be unkind and unwelcoming terrifies me more than anything else.
3. He Might Forget Me.
This fear is rooted in the unknown. During Ethan’s assessments, he recognized only a few familiar faces, including mine, his father’s, and his grandmother’s. My mother was a significant presence in his life, and even now, Max often reminisces about her. Yet, Ethan seems detached from those memories. He looks at photos without recognition or emotional response. The thought that he might forget me one day is heart-wrenching.
I might be underestimating what Ethan is capable of remembering, but living with nonverbal autism means I often find myself guessing. If I were to pass away, would I leave behind just a fleeting memory? It’s a daunting thought.
While I dread the idea of dying, I also realize that living forever isn’t my desire either. I don’t want to witness the world change in ways I can’t comprehend, or outlive everyone I love. My greatest fear is leaving Ethan in a society that often judges and misunderstands those who are different. The stories of vulnerable individuals being mistreated linger in my mind, making me anxious about what could happen to him after I’m gone.
For now, I choose to focus on the present. I cherish the beauty of my bond with Ethan, collaborating with his school to help him thrive. I aim to introduce him to new people, creating a more understanding world around him. By sharing our journey on social media, I hope to normalize his differences and educate others to see him for who he truly is—a wonderful boy deserving of love.
If I can build a solid support network for Ethan before my time comes, perhaps, just maybe, leaving him won’t be so impossible. Until then, I’ll continue to seek ways to extend my presence in our lives, exploring resources like this one for helpful information on family and disability. I’m also keen to check out other topics on home insemination, like this great post, to stay informed.
In summary, the journey of parenting a child with a disability is filled with unique challenges and fears, particularly regarding mortality and the well-being of our children. For those of us in this position, our love and understanding create a bond that is irreplaceable, yet the fear of leaving our children behind can be overwhelming. The focus must remain on the present, nurturing our relationships with our children and preparing them for the future as best as we can.