The Art of Letting Go: Loretta's Story

The Art of Letting Go: Loretta's Story

By Nonjabulo Mlangeni

In our latest blog, we profile Loretta Woods, whose 19-year-old son has XXY. Gunther was diagnosed in utero and born over two months premature. He's faced a range of challenges, particularly in the areas of emotional maturity and regulation. Loretta discusses her parenting journey and the tough choices she's had to make.

In the mid-2000s, Loretta Woods was in her late 30s and expecting a child. Since she was considered an older mother, her doctor encouraged her to get an amniocentesis. Being in great health, she didn't feel that there was cause for concern.

"It was just a run-of-the-mill check to me. We live on a ranch in Colorado, so I'm healthy, work out, and eat well. I assumed it would be fine and wasn't worried about downs or anything like that ... to this day, I remember exactly where I was when the doctor called."

The Klinefelter's news was alarming, and she and her husband had some "very intense" conversations in the days that followed. The kinds of talks that feel heady, weighty with responsibility, because whatever you decide will change your life.

"But, at the end of the day, we knew we already loved him. So, no matter what this was, we were gonna figure it out."

Ultimately, baby Gunther was born at just 27 weeks, and had to spend his first three months in the hospital. The anguish of those early days put everything on the backburner, including the XXY diagnosis.

The couple couldn't even do the kind of deep dive research that parents do today. After all, this was 2005, and an internet connection wasn't something that went with you.

"You still had to scroll through each letter when you were texting," says Loretta. "And you couldn't really get the internet on your phone at the time. Even the hospital had an actual computer room where you could go check your emails."

Of course, there were no online support groups either. Still, the couple was fortunate to live near the eXtraordinarY Kids Clinic in Aurora, which ultimately monitored Gunther throughout his childhood.

Unwanted Isolation

One major regret on Loretta's part is that she never managed to build the community she desired for Gunther. And it wasn't for lack of trying. HIPAA laws kept medical professionals from taking any steps to connect parents of children with XXY.

"I even told our pediatrician, 'I'm willing to sign something to give you permission to tell other moms about us. You can tell them we have it.' Just because I thought Gunther would benefit from knowing another kid in our community with XXY."

Ultimately, she'd hoped Gunther could meet or speak to someone he could relate to, so he wouldn't feel like such an outlier.

"Sometimes I feel like he thinks he's weird or something, because of this. So it's been a lot of talking to him, telling him it's not that big of a deal and everyone's dealing with something—whether you see it or not. It could be physical, mental, internal ... but everyone's got something."

Meeting Milestones

Gunther experienced a range of developmental delays, but it wasn't clear if they were Klinefelter's-related or a consequence of being born so early. The latter caused multiple complications in his early days at the hospital. But, after he came home, the couple also saw delays in walking, crawling, and growth (both weight and height).

"As he was growing, we'd wonder 'are these XXY issues or are they preemie issues?' We didn't know if they were kind of blending into each other."

In terms of learning, they didn't notice any challenges until a little later.

"We saw those from the 4th or 5th grade, but specifically when it came to math. That was always his Achilles heel, like it might as well be Russian to him."

Today, Gunther is almost 20, and numbers continue to be a challenge, making it harder to do everyday things like managing his bank account balance.

In terms of strengths, Loretta notes that he showed high empathy from an early age. Like many other boys with XXY, he also showed signs of innate creative talent. He'd write intriguing stories with interesting characters that left her, an adult reader, wanting more.

On the social front, he had a large friend group in his youth, plus a long-term girlfriend. But his circle began to grow smaller in junior high, and Loretta believes the learning challenges may have played a part.

"That might have been when the learning differences were showing up [more]. He'd say that he got teased and that his friends or classmates thought he was stupid."

Growing Pains

In a separate interview, I remember speaking to a man who grew up gravitating to younger playmates. Throughout his school years, his closest friends were always two or three grades below him. Later, a doctor explained that, in his case, the XXY kept his emotional maturity from developing at the same pace as his peers.

Similarly, many of the challenges that Loretta's seen fall under that umbrella of emotional maturity and emotional regulation. Although Gunther is 19, she's found that his mentality is more comparable to that of a 15-year-old.

At the same time, he has a natural desire to be in the same life stage as his peers and share their experiences. Thus, much of the tension between this mother and son stems from the lack of alignment between what he wants and what he's ready for.

Right now, what he wants is the independence of a college kid. However, he's still in high school, as he had to repeat the 12th grade. Still, in the past year, he's moved in with a friend, moved back home when that didn't pan out, then moved out again.

"We've told him that he's not ready for that," says Loretta. "He doesn't have any money saved, doesn't have any [professional] skills, and has been fired from every job he's had. So, it's like, 'no references, no job, no car, no money—but I'm gonna do it anyway.'"

So far, their advice doesn't seem to make much difference.

"We try to tell him, 'you'll get there eventually, but right now you're about two years behind your friends that are moving out and starting careers and all that.' But I think he's just not seeing the consequences of his decisions."

One of those decisions is the refusal to consistently take testosterone, which has negatively impacted his growth.

"He's significantly shorter and thinner than his friends because he's not taking it regularly," says Loretta. "We had our endocrinologist talk to him and stress that it's not even about the muscle, it's for the brain and bones and all kinds of things ... and the clock's ticking."

Gunther's issue is that he doesn't feel any different when he takes it, while her position is that it's not a magic drug, and change will come with consistency. It's one of those arguments where the right answer should be obvious to everyone involved.

But emotional immaturity manifests in a number of ways. One is the limited ability or desire to consider long-term consequences. Indeed, that's something teenagers are known for. So, if Gunther's worldview is truly on par with a 15-year-old's, it's not surprising that he may struggle with responsible decision-making.

Recently, that lack of long-term thinking resulted in a DUI charge, which the family is helping him deal with. In the midst of this turmoil, relationships have grown increasingly strained. It's a hard switch for Loretta, since she and Gunther were always close, and she's struggling to process the distance.

In a perfect world, he'd return to the nest and nurse his wounds. Take things slowly, and trust that everything he wants will come in due season. She's not against him branching out, but wants him financially and emotionally ready, since she knows how hard we can fall when we do it alone.

Her husband feels that they've done all they can, and it's time for Gunther to make his own way. Thankfully, they each understand the other's perspective, and the issue hasn't broken their marriage.

"We both want the best for him, but I think I'm still in mama bear mode," says Loretta. "My maternal instincts kick in and I want to coddle him still. But my husband says 'no, you gotta let go; it's time for him to fly."

A Hard Kind of Love

This is a story that's hard to finish. There are lots of unanswered questions and many loose ends, since that's how it's played out in real life.

My conversation with Loretta is not like my talks with other parents, or even adult men with XXY, who are often looking back from a comfortable place. Many of them have the insights and anecdotes that come with studying a storm that's mostly blown over. They're telling their story from a place of rest.

But Loretta's in the eye of the hurricane, still figuring it out and still bracing for more. As the conversation winds down, her wheels are still turning. She speaks again of how much she wishes she could have found community for them both. How she'd have happily driven an hour for a playdate with another mom whose son had XXY.

It's the sound of a mother who's still trying to understand. Replaying things in her mind, as if to resolve something. Wondering what she could have done differently, while also feeling that there's no right answer.

So I put that in her story, because even that tells us a deeper truth. How motherhood is the hardest kind of love, since it always makes you feel like you could have done more. But many of you are doing better than you think you are, and some of you can take a moment to rest, knowing that you've done enough.