It’s a common reaction. Friends and even strangers often express their uncertainty about how to respond when I share my experiences with my son, Noah.
Each time I’m asked about him, my heart races. I pause, considering: Is there a more thoughtful way to convey my feelings? I take a deep breath, sensing your anticipation for an answer, and my palms begin to sweat. I grapple with the challenge of delivering news that often catches people off guard, especially when they inquire about my other children.
I recall a moment shared with a mother outside a children’s hospital. We exchanged pleasantries about the weather and the hassle of parking, and then I innocently asked, “How many kids do you have?” Her voice trembled as she revealed that she had three children, two at home and one who had tragically passed away.
Caught off guard, I struggled to find the right words. I knew that there was nothing I could say to ease her pain; the death of a child is a parent’s worst nightmare. Out of instinct, I said what most would say: “I’m so, so sorry.”
Silence enveloped us as we watched the hustle of medical staff around us. What should I say next? “I’m sorry,” I repeated, locking eyes with her. “What was your child’s name?”
We began to talk about her daughter, Emily, who had a vibrant spirit and a love for animals. Her face lit up as she recounted Emily’s humor and her bond with her siblings. I was taken aback, feeling a mix of shock and empathy. How could she smile while discussing the loss of her child?
Our conversation continued for a while, and she asked about my children. At that point, I was at the hospital simply because Noah needed a routine checkup. I felt a pang of guilt sharing that my kids were healthy. She, in turn, mentioned that her youngest was undergoing an appendectomy.
“Thank you,” she said, touching my arm as she prepared to return to her son. “Thank you for sharing about Emily.” I swallowed hard, feeling a lump in my throat. “And thank you for asking about her, rather than the illness,” she added before walking back into the hospital, never to be seen again.
That encounter has lingered in my mind for years, a testament to her strength. Little did I know, I would soon need that very strength myself.
Shortly after that day, Noah was diagnosed with a rare terminal condition known as Hunter syndrome. This progressive illness would eventually rob him of his ability to walk, talk, and communicate. If he reached adulthood, he would require the same care as an infant.
How do I articulate that when asked about my kids? Like every parent, I want to share the joy that my three boys bring me. Yet, I find myself wrestling with the challenge of delivering such heavy news in casual conversations. I often feel the anxiety of potentially stunning whoever has inquired about my children.
I have three boys: Noah, who is nearly 14; Max, who is 11; and an energetic toddler named Leo, who is 2 ½—an age he’s very proud of. When I mention my boys, people often express surprise, remarking on how bustling our home must be and how helpful my older sons are as babysitters.
In those moments, I typically smile and nod, but if the conversation allows, I feel compelled to clarify. “Not quite,” I respond. “Noah has disabilities, and Max has ADHD, so they aren’t exactly babysitting material.” I make sure to maintain eye contact, searching for understanding or a genuine interest in my reality.
“Oh, I see. What kind of disability does Noah have?” they often ask. “He has Hunter syndrome,” I reply, bracing myself for their reaction, knowing they’ve likely never heard of it.
The response is almost always the same: “I’ve never heard of that. Is it similar to Down syndrome?” I explain that it’s a terminal condition with no current cure and that I have to watch Noah regress rather than progress. I clarify that while both conditions are syndromes, Hunter syndrome is distinct and cannot be visibly identified like some others.
An awkward silence often follows, one I have grown accustomed to. “I’m so sorry,” they inevitably say. This response doesn’t surprise me; it’s a natural human reaction, a blend of empathy and pity. I don’t harbor any resentment towards their words—I’m sorry too, after all.
I respond with a simple, “Me too.”
Here’s the thing: once you express your sorrow, please don’t withdraw into silence. Ask me about Noah. Inquire about his name, his interests, his personality. Always prioritize the person over the diagnosis. I understand your curiosity about a syndrome you may not know, but please, focus on Noah first, then the illness.
While the “I’m sorry” sentiment doesn’t bother me, it’s the pity that often accompanies it that I struggle with. The head tilt, that look of sympathy, makes me uncomfortable. I never share Noah’s story for pity; I want to raise awareness about Hunter syndrome and highlight the beauty of his life.
Noah is nearly 14. He still finds joy in laughing, walking short distances, speaking a few words, and, most importantly, sharing love with all of us. In a world filled with uncertainties, I believe we are doing well.
So, please, don’t feel overly sorry for us. We are fortunate to have Noah in our lives, offering us a unique perspective on what truly matters. Yes, it’s a difficult journey, but I strive to create joyful memories for Noah and his brothers. I often feel overwhelmed by heartbreak, but I try to shield my boys from that pain.
I want Noah’s story documented because he is a treasure, and who better to share it than me, his mom?
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In summary, while “I’m sorry” is a common response, it’s crucial to engage more deeply. Ask about the person first, and let curiosity lead the conversation. Noah’s life is one filled with love, laughter, and resilience.
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