Playing the Long Game: Noelle's Story

Playing the Long Game: Noelle's Story

By Nonjabulo Mlangeni

Many parents we speak to are raising sons with very few challenges or developmental delays. But that isn't everyone's story. In our latest blog, Noelle Davidson gives an honest take on what life can look like when your child does experience many of the symptoms of Klinefelter Syndrome. A must-read for people looking to parent well, even when the road isn't easy.

One Last Chance

Noelle Davidson waited a long time to be a mom. At age 44, her pregnancy was considered high-risk, so doctors encouraged her to do an amniocentesis. She vividly remembers when the results came in, even down to the weekday.

It was just another Friday when her phone rang; she answered, expecting just another call. "They said, 'I don't want to alarm you, but we found out your son has Klinefelter Syndrome.'"

In many cases, parents don't initially receive this news with fear. That part comes later, often because of the way the news is delivered to them. In Noelle's case, the doctor was positive and tried to reassure her. It was only later in the process, when other voices chimed in, that panic entered the picture.

"The doctor said, 'it's not so bad,'" she remembers. He then gave her some information on what it was, though "it wasn't much." Immediately after, she and her husband went into discovery mode: doing their own research and searching their personal networks for anyone with helpful credentials.

"My husband had a friend from high school, a geneticist who does a lot of fertility work," she recalls. "So, we called him, and in his Russian accent he said, 'Oh no, this is very bad.'"

That one conversation unlocked new levels of fear. The geneticist clearly felt that abortion was their best option. Indeed, he told them as much. Still, the call ended with no clear resolution, and the couple spent the weekend spiraling.

Noelle had previously suffered a miscarriage, and the thought of losing another baby wrecked her in advance. "We were [already] an older couple and both on our second marriages; we knew this was our last chance to have a kid. I wanted this child badly ... we both did."

Like anyone who can't bear to lose one more thing, Noelle kept searching, hoping that somebody somewhere could tell her something that made sense. She found an organization called AXYS, though it went by another name back then. To her relief, "they said they had people we could talk to."

A Helpful Stranger

They got various contacts and, of everyone they called, just one responded. A mom with a heart for a family in crisis. Though she couldn't have known it at the time, her small act of kindness would completely change their story.

"She met up with us, along with her son, who was four at the time," Noelle says. "And the boy was amazing; that's when we knew we could do this."

To be clear, the couple never expected things to be easy. They knew that geriatric pregnancies are at greater risk for complications. But the diagnosis made them worry that their child might not grow up to live independently. They also didn't feel capable of providing decades-long care.

"We're not gonna be there forever," she says. "So, he had to be able to take care of himself at some point ... Learning that it wasn't just possible he could, but that he actually would—that's what made the decision for us."

The meeting brought a wave of relief. Many parents to kids with XXY feel more prepared and hopeful once they tap into community. It's one thing to be told that it's not the end of the world, and another to see living proof of it.

In Noelle's case, her Good Samaritan answered every question, walked the couple through different resources they might need, and stayed in touch with them for years after.

Notably, their geneticist friend circled back, singing a different tune. He'd spoken to other people and learned the diagnosis was actually "not so bad." Though awful, that experience taught them something that many parents on this journey have learned: don't rely on a single source.

Sometimes, the person you initially speak to knows just as little as you do. Other health professionals, community voices and individual research can help paint a clearer picture of what this journey may be.

Hurry Up and Wait

Noelle had learned about the potential benefits of early testosterone therapy and wanted to try it soon after Jacob was born. But, year after year, doctors turned her down, citing insufficient research.

"We went to multiple doctors, and they said 'no, it's too early ... the research isn't there.' I wanted to keep fighting for it, but my husband thought maybe we shouldn't mess with things. Then, a few years later, they said 'oh yeah, the research supports it.' And that was frustrating."

Today, Jacob is twelve and they're dealing with similar pushback from doctors who think it's too early for him to start puberty. Yet he's been assessed by a researcher who specializes in sex chromosome defects, and she encouraged them to start testosterone a year ago.

Being a solution-oriented person, Noelle likes to get ahead of the curve. But in the many years of advocating for her son, she's often felt stuck in a kind of limbo: waiting for the green light while worrying it won't come in time.

"We missed it last time because the research wasn't there," she says. "And now you're telling me this again..."

Meeting Milestones

Today, Noelle believes she's seeing the impact of missed opportunities. "One of the things that happens in the womb is that our sons don't get as much testosterone," she explains. "So, it delays the development of their prefrontal cortex, which deals with executive function."

In middle school now, Jacob experiences a range of executive function issues, from impulse control to decision making and working memory. In the early days, there were also delays in speech, physical growth and both gross and fine motor skills.

Noticing that he would often meet milestones at the very end of the typical time window, Noelle focused on early intervention. She worked hard to get him ahead. Swim lessons at 10 months, to build his strength. Occupational therapy and speech therapy, which got him talking by two and a half. By the time the school district took over at age three, they said he wasn't far behind.

Being an only child, Jacob spends much time around adults, so he has an advanced vocabulary. On the social front, he's friendly and gets along with other kids. Though he's extremely confident, he does have trouble processing social cues and sometimes confuses playful teasing for bullying.

"If something upsets him at school, he needs to come home," Noelle says. "He can't just regulate [those negative emotions]."

Emotional regulation is the major challenge they're seeing in these preteen years. So, in this season, parenting well requires serious patience and self-control.

Of course, there are trying times that stretch their emotional bandwidth. But they try to help each other show up in productive ways, instead of being led by their feelings. Therapy taught them how to meet their son where he is.

"I can't say we're 100% successful, but we try to redirect. We let him have a few minutes to calm down by watching a little TV or listening to music ... and then we start talking to him. Because if we try when he's emotional, it just ends in a screaming match."

No Regrets

Many parents we've interviewed are navigating relatively minor challenges. Compared to those stories, this one may seem daunting. But it's important to highlight different experiences that different people can relate to.

It's also key to remember that one truth doesn't cancel another. Parenting isn't easy on the best of days, but that doesn't mean you don't love your children. Both things are valid and worthy of being talked about.

Through it all, it's abundantly clear that Jacob is the child Noelle ached for, and she loves him from a pure place. I ask what he likes to do, and she reckons he's headed for comedic stardom. He's bright, sarcastic and wickedly funny.

"Like Big Bang Theory?" I ask, and her eyes light up like I've read her mind. Apparently, Sheldon Cooper is his hero. In five or ten years, I bet that title goes to a familiar couple that's a lot closer to home.