Surpassing Expectations: Renee's Story

Surpassing Expectations: Renee's Story

By Nonjabulo Mlangeni

In the latest blog on our website, Renee Lindstedt drops countless gems on parenting a child with XXY. Read on to learn about her journey to the diagnosis, how she found her inner strength, and how this process transformed her.

A New Normal

In late 2015, Renee Lindstedt was nearing the 10-week mark of her pregnancy and looking forward to doing gestational bloodwork. To her, it was an opportunity to learn the baby's sex and start planning the gender reveal. The genetic tests were hardly at the top of her mind, and she certainly didn't expect to find anything unusual.

When you don't have firsthand experience with something—when it's never even happened to someone you know—it's hard to consider it a genuine risk. You don't really think it will happen to you. Then the phone rings, and it changes your reality.

"My OBGYN called and said, 'the results came back, and you're having a boy ... because he has Klinefelter's Syndrome and it only happens with boys.'"

As is often the case, her doctor could only tell her so much. Many don't have much professional experience with XXY. Despite being a nurse, nothing in Renee's own background had prepared her for this. She understood they'd found a genetic anomaly, but the rest of it seemed so unclear.

It's one thing to get bad news, but bad news that you don't understand is another thing entirely.

"When you get a call from a doctor and not an assistant, you already worry that something's wrong. And then the doctor didn't really elaborate [on the Klinefelter's], so I was left to my own imagination. I was like, 'I don't know what that means...'"

The doctor encouraged Renee to confirm the results with an amniocentesis, but that could only happen later in the pregnancy. She could also see a genetic or neonatal specialist. They would have more answers, but even that came with a wait.

To many parents, the period between getting the news and seeing a specialist seems to stretch into eternity. It would take superhuman strength not to do their own digging while they wait. As Renee searched for answers online, she became fearful and discouraged.

"Everything was like 'he's going to have a horrible life. He won't be too smart. He'll have all these abnormalities,'" she says. "There wasn't anything positive that I could find, so I was scared for the wellbeing of my baby. You know that not everything you're reading is 100% true, but you still see what you see, and you're filled with dread."

Renee and her husband were on edge, and it affected the way she processed things during her pregnancy. If something unusual happened, her mind would connect it to Klinefelter's and question if it was related.

"The entire pregnancy, you're wondering what to do. And if something's wrong, you think, 'is it because of this?'"

The Great Unknown

Renee and her husband went to a neonatal group and spoke to a genetic counsellor. She gave them a better understanding of XXY overall. Although this helped Renee wrap her mind around the issue, she still wanted some practical understanding. What did this mean for her family? What would their day-to-day look like? It still felt like they were facing a great unknown.

"I said, 'what do people do in this situation? I don't know what to do.' And she said 'it's 50/50' [it could go either way]. So, we were obviously stressed."

But they were also ready to make a choice. Of course they wanted more information. Sure, they wanted a clearer path. But it was time to rise up and engage with what they had, instead of dwelling on what they didn't.

The turning point came suddenly, because their circumstances hadn't changed, but they'd changed their perspective.

"By the time we left the appointment, we thought, 'you know what? We can handle whatever comes at us. We're not going to abort or do anything like that.' And I'm glad we didn't, because he's the greatest kid."

Today, Renee encourages parents who've just received the news to build a community that includes people with firsthand knowledge.

"Finding that support was the most helpful thing," she says. "You do get reassurance from providers and physicians, but they're [also] like 'I had one XXY case in med school.' So, talking to people who've gone through it and whose children are thriving gave me so much more."

In her experience, it's important not to rely on one source. Be it the XXY community, the medical community, or individual research—they're all channels of information to help you on this journey. As you grow your understanding, you'll see that just because it's not ideal doesn't mean it's the end of the world.

Meeting Milestones

"The benefit of knowing early was that I was more proactive," says Renee. "I stayed on top of things when he was a toddler: checking how many words he knew at this or that age and writing them down ... just being more [vigilant] because I wanted to make sure."

When Sawyer was around two years old, she saw that his speech wasn't developing as it should. "I couldn't understand 80% of the words he was saying. He'd get frustrated because he was trying to communicate, and I'd say, 'can you say that again?'"

Ultimately, Sawyer needed about two months of speech therapy to get on track. Initially, they did occupational therapy for the same amount of time, then picked it back up when they learned he had sensory integration disorder. With time, they learned how to make him more comfortable.

"When we go to the movies or to see fireworks, we bring headphones. We tell him 'there's going to be loud noises. We're here if you need anything. If you need to leave, we can.' We give him the heads up on what might happen and he's totally fine."

Surpassing the Expectations

Although her nursing experience has helped her handle some things well, Renee goes through the same emotions as any other concerned parent. No matter who you are or what you know, loving someone with Klinefelter's means navigating uncharted waters.

There's always that uncertainty about what lies ahead. And for parents in particular, the journey is a lifelong lesson on patience and surrender. Watching, waiting and taking each new thing as it comes.

Today, Sawyer is almost 9, and Renee continues to brace herself for each new season.

"There's still the unknown. I don't know what he's going to go through when he reaches puberty ... That's the hurdle we'll be dealing with in the next few years. So, every milestone is just a new challenge or an unknown."

When I ask how she supports herself through this process, she says therapy is extremely helpful. But so is reminding herself how far her family has already come.

"Reminding myself how much we've been through in his almost 9 years of life, and how he's surpassed my expectations ... because I didn't know what to expect. [But] he's such an outgoing child. Very friendly, smart and athletic. He's opened me up to activities I wasn't involved in before he was born."

Raising Sawyer, Raising Me

In listening to Renee, I see that as much as Sawyer has exceeded her expectations, he's also helped her exceed her own. Most of us don't really know what we can handle until we get there. We don't know what we have inside of us, until life draws it out.

Renee was once someone "who felt more comfortable being in control." Now, she's less fearful and more self-assured. Because she knows that she can do hard things, and that she's built for any battle.

In a way, raising Sawyer has raised her. Raised her understanding of who she is and what she can do.

"He just gave me more," she says. "More openness, more open-mindedness. Knowing that yes, life can change and things can shift, but we can find our own way—and we'll get there."