Many people, both friends and strangers, often express uncertainty about how to respond when I share my experiences with my son, Noah.
Each time I’m asked, my anxiety heightens. I pause, reflecting on whether there’s a more gentle way to convey my reality. A deep breath steadies me as I recognize the anticipation in your eyes. My palms sweat, and I grapple with the challenge of delivering unexpected news, especially when the conversation began with light-hearted topics concerning my other children.
I recall an encounter with a mother outside a pediatric ward; our chat flowed easily from the weather to the hospital’s parking troubles until I innocently asked, “How many children do you have at home?” Her voice trembled as she replied that she had three—two at home and one who had tragically passed away. I was taken aback. What could I say that would ease her pain? I merely uttered what most would: “I am so very sorry.”
As silence enveloped us, I felt a wave of empathy wash over me. I couldn’t shake the feeling of discomfort. “What was your child’s name?” I ventured, hoping to shift the focus. We then shared stories about her vibrant daughter, Emily, filled with humor and love for animals. I was struck by how this grieving mother lit up while reminiscing about her child, who had succumbed to illness.
Our conversation lasted about half an hour. She inquired about my kids, and at that time, I was only at the hospital for a minor procedure for my eldest son. I felt an odd sense of guilt sharing that my boys were otherwise healthy. She smiled and mentioned her youngest was undergoing an appendectomy.
“Thank you,” she said, touching my arm as she prepared to return to her son. “Thank you for asking about Emily and not her illness.” That day and that brief exchange have lingered in my memory, a testament to her resilience. Little did I know, I would soon need to embody that same strength.
Shortly after that hospital visit, my son Noah was diagnosed with a rare terminal condition known as Hunter syndrome—an ailment that would progressively rob him of his ability to walk, talk, and ultimately, live independently. If he reaches adulthood, he will require care akin to that of an infant.
How do I articulate such a heavy burden when asked about my children? Like any parent, my heart swells with pride as I think of my three boys. I want to celebrate them without burdening others with my grief. When people comment, “Wow, you’ve got your hands full! Your older ones must be great helpers!” I often respond with a polite smile. However, if we are sharing a moment, I feel compelled to clarify.
“No, not really. My nearly 14-year-old has disabilities, and my 11-year-old has ADHD, so they aren’t exactly babysitters.” I look for understanding in their eyes, a connection.
“What disability does he have?” they might ask.
“He has Hunter syndrome.” I brace myself for the common response, fully aware that many are unfamiliar with it.
“Oh, I haven’t heard of that before. Is it similar to Down syndrome?”
With that, I find myself explaining that Hunter syndrome is a terminal condition without a cure. As I describe Noah’s gradual decline, I note the difference between syndromes like Down syndrome—visible and often understood—and the less apparent nuances of Hunter syndrome.
An awkward silence often follows. “I’m so sorry,” is the familiar refrain. I understand their reaction; it’s a natural response filled with empathy and, perhaps, relief that it isn’t their child facing similar struggles. I don’t hold any resentment toward such sentiments; I share in that sorrow.
“Me too,” I reply.
Here’s the thing: you’ve expressed your sorrow. That’s acknowledged. But please don’t let it end there. Engage with me—ask about Noah. Inquire about his interests, his personality. Always remember to prioritize the person over the disability or illness.
In my situation, while the “I’m sorry” doesn’t irritate me, the accompanying head tilt—an expression of pity—does. I don’t seek pity; I wish to share our journey, our joys, and our challenges. Empathy can sometimes resemble pity, and I’ve become all too aware of that dynamic. Each time I receive that look, I’m reminded of my encounter with the mother at the hospital.
I write not for sympathy but to shed light on Hunter syndrome and celebrate the remarkable moments Noah continues to create. Noah is nearly 14, still able to laugh, walk short distances, and communicate in his own way. He loves to cuddle and express affection, proving that amidst the uncertainty of tomorrow, we cherish today.
Noah is a source of joy and inspiration, making us incredibly fortunate to have him in our lives. He doesn’t need our sadness; he needs love, laughter, and the chance to live fully.
While our life is undoubtedly challenging, I strive to create happy memories for Noah and his brothers. I experience heartache, but I shield them from my pain. Don’t most parents do the same? I’m just like you—yet different.
I aim to document Noah’s life because he is a treasure, and who better to do that than his mother?
This article was originally published on April 4, 2016.
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Summary:
The author, Alex Morgan, shares her experience of discussing her son Noah’s rare condition, Hunter syndrome. She reflects on her encounters with others, highlighting the importance of empathy over pity. Alex emphasizes the need for genuine conversation about her son, prioritizing his individuality over his illness. She seeks to document Noah’s life to celebrate his joy and resilience, and encourages others to engage in meaningful dialogue rather than retreating into silence.
Keyphrase: Understanding Hunter Syndrome
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