It’s not uncommon for friends and strangers alike to admit they struggle to find the right words when I talk about my son, Noah.
Each time I’m asked about him, my heart races a bit. I pause to think: Is there a better way to express this? I take a deep breath, and I can feel your eyes on me, waiting for my response. My palms grow clammy as I try to figure out how to convey the news without leaving you in shock, especially when you’ve asked about my other kids.
I remember a conversation I had with a mother outside a pediatric ward. We started off chatting about the weather and hospital parking woes, and then I asked her, “How many kids do you have?” Her voice trembled as she revealed she had three—two at home and one who had passed away.
That response caught me off guard. What could I say? I realized that I couldn’t possibly ease her pain. Losing a child is a parent’s worst nightmare, and I felt a rush of empathy for her. I did what most people would do in that situation: “I’m so, so sorry.”
She nodded, and a heavy silence fell between us as we observed the hustle of nurses and doctors. My mind raced: What should I say now? Have I upset her?
“I’m sorry,” I repeated, looking into her eyes. “What was your child’s name?” My head tilted slightly in genuine curiosity.
We then spent about half an hour discussing her daughter, Mia. She lit up speaking about Mia’s quirky sense of humor and her love for animals. I tried to mask my disbelief and sympathy as this grieving mother animatedly shared her memories. I was astonished at how she found a way to smile and converse about a daughter lost to illness.
When she left, she thanked me for asking about Mia rather than the illness that took her. I felt a lump in my throat, but I pushed it down. That conversation stayed with me for years, and I didn’t realize then that I would soon need similar strength.
Not long after that hospital visit, my own son, Noah, was diagnosed with a rare terminal condition known as Hunter syndrome—a progressive disorder that would eventually rob him of his ability to walk, talk, and eat. If he reached adulthood, he would require the same care as an infant.
How do I share that when asked about my children? Like every parent, I want to celebrate my sons—my three amazing boys. I dread shocking others with my reality when they’re just asking a simple question. I still get a bit anxious, fearing I’ll leave someone speechless.
I have three boys: Noah, who is almost 14; Max, who is 11; and a rambunctious toddler, Leo, who is 2 ½ (and he insists on that half!). When I share this, I often get the usual remark, “Wow, you’ve got a full house! I bet the older two are great helpers.”
As all parents do, I wish to be honest, but if it’s a passing comment, I usually just smile and nod. However, if the person is sitting next to me watching our toddlers play, I feel the need to clarify.
I take a deep breath and say, “Not really. My 14-year-old has disabilities, and my 11-year-old has ADHD, so they’re not exactly babysitters.” At this point, I make eye contact, searching for understanding, acceptance, or even curiosity.
“Oh, what disability does Noah have?”
“He has Hunter syndrome.” I know they probably haven’t heard of it, so I wait for questions. It’s never easy to share. My heart races as I contemplate how to phrase my response.
“Oh, I haven’t heard of that. Is it similar to Down syndrome?”
I explain that it’s a terminal condition with no cure. I share that I have to witness my son regress rather than progress. I mention that while both Down syndrome and Hunter syndrome are indeed syndromes, they differ significantly, especially because ADHD can’t be visually observed.
An awkward silence often lingers after my explanation, one that I’ve grown accustomed to.
“Wow, I’m so sorry.” I’m not surprised by this response; it’s common and understandable. It’s human nature to feel sorry for another parent facing such a hardship. I don’t take offense, as I feel the same way: I’m sorry for Noah’s illness, for the unfairness of it all, and that my family is bearing this burden.
“I’m sorry too,” I reply.
Here’s a gentle nudge: You’ve expressed your sorrow, and I appreciate it. Please don’t remain silent.
Ask me about Noah. Ask me his name. Inquire about his interests. Always prioritize the person over the illness or disability. Discuss Noah first, then the syndrome second. I know your curiosity about something unfamiliar is natural, but always center the conversation around my son, not his condition.
Regarding the “I’m sorry” sentiment, it doesn’t bother me because I share that feeling. What does affect me is the “head tilt” that often accompanies it, a gesture that communicates pity. I don’t want pity. I write not to invoke sympathy but to raise awareness about Hunter syndrome and other rare conditions.
Noah is nearly 14. He still laughs, walks short distances, speaks a few words, gives hugs, kisses, and understands basic language. In a world where tomorrow isn’t guaranteed, our family is doing quite well. Noah is one of the happiest boys you could meet.
So, please don’t feel too sorry for us. We’re fortunate to have Noah in our lives, teaching us invaluable lessons and opening our eyes to a different world. Yes, it can be heart-wrenching, but Noah thrives on love, joy, and living life to its fullest.
While it’s not the easiest journey, I strive to create happy memories for Noah and his brothers. I cry and feel heartbroken, emotions I never knew existed, but I shield my boys from that. Like many parents, I hide my worries while still being just like you, though our experiences may differ.
Recording Noah’s life is essential to me because he’s a treasure, and who better to document it than his mom?
Conclusion
In this heartfelt narrative, I aim to foster understanding and empathy while shedding light on the realities of raising a child with a rare condition.
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Summary: The author shares their experience as a parent to a child with Hunter syndrome, emphasizing the importance of focusing on the person rather than their disability. They advocate for deeper conversations and connection, urging people to ask more meaningful questions rather than just expressing pity.