The Gritty Optimist — Katie's Story
The Gritty Optimist — Katie's Story
By Nonjabulo Mlangeni
For our latest blog, we spoke to Katie and Jordan, parents of three whose middle child has XXY. As a stay-at-home mom, Katie gives a raw take on how parenthood has stretched her. Describing it as the hardest thing she's ever done, she shares what she's learned and how she finds the strength to rise to the occasion.
In 2020, Katie was pregnant with her second child and looking to celebrate the usual milestones. Eager to host a baby shower and prepare the nursery, she and her husband Jordan wanted to learn the gender early. Like most parents, they didn't expect the noninvasive prenatal testing (NIPT) to find any anomalies.
"We'd never even heard of XXY. Maybe naively, we hadn't really considered that anything would be wrong. We actually hadn't even done genetic testing with our first child, who's a year and a half older than Tate."
When the results showed that Tate was likely to have Klinefelter Syndrome, the couple initially hoped it was a false positive. But since their doctor had very little information, it would be weeks before they could get their questions answered.
While waiting to see a geneticist, they found the Living With XXY blog and other supportive resources. For Katie, this was when things took a positive turn. Seeing men with XXY in good health and living well was enough to quell her anxiety. For Jordan, it would take more.
Coping Differently
"He and I are polar opposites, which I think is pretty normal in marriages. I'm an eternal optimist who immediately looks for the silver lining. My husband is more analytical, so he can get discouraged and take longer to reach a place of hope."
Once the news comes, couples with different personality types may find they have different needs and coping strategies. Respecting the fact that your spouse's mind works differently can help you give them grace to process the news in their own way, at their own pace.
In Katie's case, she values learning from people with related experiences, while Jordan prioritizes hard data.
"He needs to get information and then he needs time to process it. While I could look at Ryan and get that gut feeling of 'he's fine, we'll be fine too.' Sometimes I make that kind of leap naively, to my own detriment. But Jordan doesn't. He won't feel anything about it until he finds the research to back things up."
A Fresh Perspective
In doing these interviews, I've spoken to numerous people whose lives have been touched by Klinefelter's. One man with XXY mentioned being surprised by the devastation that some moms experience when they get the diagnosis. He feels that they act like it's the end of the world. But Katie makes a point that cuts to the heart of this issue.
Parents of children who don't have XXY are able to take the challenges of parenthood in smaller doses. They get to deal with them one at a time—over the course of time—which makes it easier to cope. Parents whose children are diagnosed with XXY in utero or in childhood get hit with everything at once.
In a very short period, they're flooded with information about every adversity their child may face in their life. Of course they start out feeling like they're drowning.
"It was more discouraging to learn everything at once. But knowing ahead of time is an advantage we can use to prepare Tate. I don't know where my other two children might hit a stumbling block in their lives. In their case, those could pop up all of a sudden."
To Tell or Not to Tell
Jordan says:
"Once we wrapped our heads around what this will look like and knew our child would be healthy, we were okay. From there, we made some choices about who we would share this information with."
The couple ultimately chose not to share the diagnosis with friends or extended family. This is why they opted not to share images of their faces in this article.
"We felt a need to protect Tate's privacy because some of the information is sexual in nature."
Katie adds:
"We didn't want it to be a topic of conversation for the rest of his life. Or to have extended family Googling it and knowing personal stuff about him and his body. So, I know this isn't what most people do, but we still haven't shared. And it honestly doesn't impact our lives at all."
Meeting Milestones
Today, Tate is in preschool and doing well, though he did overcome an early speech delay.
"At 18 months, he was only saying one word. And I think they're supposed to have about 20 by that point. He was way off, so we had him in speech therapy from 18 months until he tested out at 3."
She also notes some emotional struggles, though she thinks they were caused by the speech delay. That's because Tate mostly gets upset when he's not understood.
"He wasn't understood for so long, and it made him angry that he wasn't. So, he still deals with some emotional dysregulation, I think, because of that."
Early Testosterone Therapy
Now almost five, Tate is fortunate to be part of a long-term study on chromosome abnormalities. The couple takes him for in-person visits every other year, so experts can observe and test him over a period of days. Researchers plan to follow the participants into adulthood.
Before this opportunity came, the couple reached out to a researcher leading a study on testosterone therapy for infants. That opened the door for Tate to get access to that treatment.
"Our research led us to a study on baby puberty. I emailed the doctor involved and she said it was too late for Tate to join. But they were able to prescribe testosterone, and we could take that to the pediatrician."
Accordingly, Tate received one low-dose testosterone injection each month from 3 to 6 months. Through the same research contact, the family learned about the long-term study that Tate is part of today.
"We get to ask the researchers all sorts of questions, and they tell us what they're learning. One thing we've learned is that XXY is the most common [chromosomal abnormality] and the least severe. That puts things in perspective. It's like, 'yes, we're dealing with this, but we could be dealing with worse.'"
Doing Hard Things
Today, Katie's a mother of three, balancing the responsibilities of stay-at-home parenthood. Like many women who left careers to manage households, she was floored by the depth of the learning curve.
"I always felt very confident and successful in life. I took pride in playing college sports, then I was an educator for over a decade ... I felt good at my job, and knew what I was doing. Then, all of a sudden, I'm home with kids [and I don't feel any of that]."
She went from feeling accomplished and self-assured to constantly questioning her capacity. This is the pivot that many parents make, and not all of them are willing to say they're overwhelmed.
But Katie will. And her word carries weight, because she has every resource that's thought to make things easy. A good home, a supportive spouse, a great group of mom friends. And it still wasn't enough to make her the mother she wants to be.
"I have plenty of opportunities to meet up for play dates, do a moms' night out, or have coffee with friends. I get to do those things frequently, but I'd still come back from that and immediately snap. I'd get irritated and wonder why ... I just got time away. Why am I not doing a better job when I get back? Didn't I just get what I needed?"
Ultimately, she realized that while these things were nice, they had a superficial impact. They did nothing to make her better at managing day-to-day life. She needed to be fed on a soul level, and a self-care day wouldn't cut it.
"Fun is good, but it's not refreshing me to do the hard job of motherhood. I realized I can't really do this on my own. I'm not 'naturally' good at this; I don't have all this overflow [to give]."
Before parenthood, Katie never considered herself impatient or short-tempered. And certainly not weak. Not the teacher who ran her class like a Swiss clock. Not the college sports star. She'd never known what it was like to feel helpless. To want to be something, or get somewhere, and not know how.
"Motherhood humbled me in a real way. I'm able to see my need a lot more, because the bottom line is I can't do this alone. That's why my overarching goal now is to put the Lord first and let everything else flow."
This is where Katie draws the strength to do hard things.
"It's a choice I have to make, every single day. On a good day, I'm up early, reading my Bible and praying ... If I don't, it doesn't [go how I want it to]."
True Grit
My talk with Katie makes me think about what it truly means to be optimistic. We often equate it to this constant confidence that life will work out fine. But that may be a childlike perspective. For people who've lived long enough to be disappointed—and even to disappoint themselves—optimism looks a little grittier.
It does away with the pretense of perfection. It calls hard things by name. But it also keeps an eye on the horizon, trusting that it's worth it to try again. In this way, Katie is certainly an optimist. Indeed, an optimist is just a realist who's determined to carry on.