When I share about my son, Luke, I often hear friends and strangers express their uncertainty about what to say. It’s a challenging topic for me to discuss; my heart races each time the question arises. I pause, wondering if there’s a better way to articulate my thoughts.
Taking a deep breath, I notice you’re waiting for my response. My palms start to sweat as I navigate the delicate balance of honesty and sensitivity. I know the feeling of receiving unexpected news.
I recall a conversation with a mother outside a pediatric ward. We were chatting about the weather and parking hassles at the hospital when I innocently asked her about her children. Her voice trembled as she mentioned she had three kids, two at home and one who had tragically passed away. I was caught off guard. What could I say to ease her pain? I offered the same response most would: “I’m so sorry.”
A heavy silence fell between us as I watched the busy hospital staff move about. My mind raced—had I upset her? I repeated, “I’m so sorry,” and then asked, “What was your child’s name?”
We ended up discussing her beloved daughter, Mia, and I could see the joy return to her face as she talked about Mia’s sense of humor and love for animals. I felt a mixture of shock and admiration for her strength in sharing such precious memories.
That encounter left a lasting impression on me. Little did I know, I would soon need to summon that same strength when I faced my own challenges.
Not long after that hospital visit, my son, Luke, was diagnosed with Hunter syndrome, a rare terminal condition that would progressively impact his abilities to walk, talk, eat, and communicate. If he reached adulthood, he would require care similar to that of an infant.
So, how do I explain this when asked about my children? Like any parent, I want to share the joy my boys bring me. I have three wonderful sons: Luke, who’s almost 14; Max, who is 11; and my lively toddler, Sam, who is 2 ½ (the half is crucial to him!).
When someone comments on how lucky I am to have a houseful of kids and how helpful my older boys must be, I often just smile and nod. However, if we’re both watching our toddlers play, I feel the urge to clarify.
Taking a deep breath, I say, “Actually, my eldest son has disabilities, and my middle child has ADHD, so they aren’t really babysitters.” I make eye contact, searching for understanding.
“Oh, really? What kind of disability does your son have?”
“He has Hunter syndrome,” I reply, bracing for their reaction. They usually haven’t heard of it, which leads to questions about its nature. I explain that it is a terminal condition with no cure, and that I witness my son’s decline rather than his growth. I compare it to Down syndrome, noting that while both are syndromes, one is visible while the other isn’t.
An awkward silence often follows. “I’m so, so sorry,” they say, a response I’ve come to expect. It’s a natural human reaction, a blend of empathy and relief that their own child is healthy. I don’t harbor resentment; I feel sorry too—for what my son endures and the reality of our situation.
I often respond with “Me too.”
Here’s a tip: while I appreciate your sympathy, I encourage you not to leave it at that. Please ask me about Luke. Inquire about his interests, personality, and what he enjoys doing. Always prioritize the person over their illness.
I don’t mind the “I’m sorry” because I feel that way too. What does bother me is the pity that often accompanies it—a head tilt that conveys sorrow rather than empathy. I don’t seek pity; I write to raise awareness about Hunter syndrome and to celebrate the remarkable moments in Luke’s life.
Luke is nearly 14. He still laughs, walks short distances, talks a bit, shares hugs and kisses, understands basic language, and enjoys food. He tells me, “I lobe you,” and despite the uncertainty of tomorrow, we cherish our time together.
So, please don’t feel too “sorry” for us. We consider ourselves fortunate to have Luke in our lives, offering us a unique perspective on joy and resilience. While it’s not always easy, I strive to create happy memories for Luke and his brothers. I express my struggles privately, as most parents do, because I’m just like you—yet my journey is different.
I document Luke’s life because he is a treasure, and who better to chronicle it than his mother? If you’re interested in learning more about home insemination as part of your parenting journey, visit this informative article on intracervical insemination. For those exploring options, Make a Mom is a well-respected source on the topic, and American Pregnancy provides excellent resources for pregnancy and home insemination.
In summary, when you encounter someone sharing their story about a child with a disability, remember to engage meaningfully. Offer your empathy, but don’t stop at “I’m sorry.” Ask about their child, celebrate their joys, and recognize them as individuals first.