I often find myself in conversations where friends and acquaintances express their uncertainty about what to say when I mention my son, Noah. Each time someone asks, my heart races a bit faster as I prepare to share a part of my life that is both precious and painful. I pause, contemplating whether there’s a more gentle way to convey my truth.
Taking a deep breath, I see the anticipation in your eyes. My palms might start to sweat. I want to share about Noah and my other children, but I worry about the impact of my words. The unexpected nature of what I might say can be jarring.
I recall a moment from my past when I talked with a mother outside a pediatric ward. We were discussing mundane things like the weather and the frustrating parking situation at the hospital when I innocently asked her how many kids she had. Her voice trembled as she revealed she had three children, two of whom were at home, and one who had tragically passed away. I was taken aback. What could I possibly say to ease her pain? I chose the common response: “I’m so, so sorry.”
As we stood in silence, I felt a wave of empathy for her. I watched as medical staff hurried in and out, my mind racing with the fear that I had upset her. I repeated my apology and then asked, “What was your child’s name?” As we began to talk about her beloved daughter, Mia, her demeanor shifted. She lit up while sharing Mia’s love for animals and her vibrant personality. I tried to mask my shock and sympathy, grappling with how she could smile while recounting such a heartbreaking story.
We talked for a while, and I felt a pang of guilt when she asked about my children. At that time, I was only at the hospital because my oldest son needed a minor procedure. I felt bad sharing that my other two boys were healthy. She smiled and told me her youngest was undergoing surgery for his appendix.
After our conversation, she thanked me for asking about Mia, not her illness. I left feeling a mixture of sadness and admiration for her strength, a strength I would come to need.
Not long after that encounter, my son Noah was diagnosed with a rare terminal illness known as Williams syndrome. This progressive condition would eventually leave him unable to walk, talk, or communicate effectively. If he reaches adulthood, he will require care comparable to that of an infant.
So how do I convey that when people ask about my kids? Like every parent, I want to talk about my joys—my three amazing boys. I don’t wish to burden others with the nuances of my reality when they ask a simple question. Yet, I feel compelled to clarify the misconceptions about my family.
I have three boys: Noah, nearly 14; Liam, who is 11; and a rambunctious toddler named Max, who is 2 and a half (the half is crucial to him). When I share this, I often get the standard response: “Wow, a full house! The older two must be great helpers, especially the 14-year-old!”
While I don’t want to mislead anyone, I often just smile and nod. But if the parent is sitting next to me, watching our toddlers interact, I feel it’s necessary to clarify.
I take a breath and explain, “Not exactly. My nearly 14-year-old has disabilities, and my 11-year-old has ADHD, so they aren’t really babysitters.” I make sure to make eye contact, hoping for understanding.
“Oh, what disability does Noah have?” they might ask. “He has Williams syndrome.” I know they likely haven’t heard of it, but I prepare to share a little more about it. My heart races; it’s not easy to talk about.
“Oh, I’m not familiar. Is it similar to Down syndrome?” they might inquire. I explain that it is indeed a terminal condition with no cure, detailing how I witness Noah’s decline rather than his growth. I clarify that while both are syndromes, they manifest differently, which can be seen in contrast to conditions like ADHD.
An awkward silence usually follows, and I’ve grown accustomed to it. “I’m so, so sorry,” they often say. I understand this response; it’s natural to feel empathy for a situation so dire. I don’t harbor any resentment towards these sentiments, as I share in that sorrow.
But here’s the thing: I want more than just sympathy. I want you to engage with Noah’s story. Ask about his interests, his personality, and what he enjoys doing. Always remember to put the person before the condition. I truly appreciate it when someone expresses their sorrow, but don’t let that be the end of our conversation.
Please, ask me about Noah. Ask me his name and what he loves. It’s important to focus on him as a person, not solely as a “child with a disability.”
While the “I’m sorry” doesn’t bother me—because I feel it too—what’s unsettling is the accompanying pity often expressed through a head tilt. I don’t seek pity, nor do I write about our lives for that reason.
I’m aware that empathy can sometimes resemble pity, and I now understand the weight of delivering unexpected news. I share my story to raise awareness about Williams syndrome and to celebrate all the remarkable moments with Noah.
Noah is a joyful child. He laughs, walks short distances, speaks a few words, and shares affection with those around him. We cherish our time together and strive to create happy memories.
So please, don’t feel too sorry for us. We’re fortunate to have Noah in our lives. He’s opened our eyes to a world that has profoundly shifted our perspectives. Yes, there are challenges, but we focus on love, laughter, and making the most of each day.
I hope to record Noah’s journey because he is a treasure, and who better to document it than his mother?
Summary
In this heartfelt narrative, Alex Thompson shares the challenges and joys of parenting a child with Williams syndrome, urging others to engage meaningfully when learning about her son. She emphasizes the importance of seeing the person first, fostering empathy without pity, and celebrating the vibrant life that her son leads despite his illness.