19 Jan Finding Mom’s Time

When you meet Tuesdi Dyer, you’ll come away with an impression of an upbeat and fun woman, a creative and energetic mother of two boys and a whip-smart nonprofit leader. Her energy seems limitless. Honestly, conversations with her can sometimes leave you a bit breathless, but it’s an experience you can’t wait to repeat.

Tuesdi is quick-witted and a keen judge of human action and character. I’ve often seen her use that talent to regain control of meetings and seminars and to drill down to the heart of the matter with an individual–all while exuding the kind of positivity and calm I can only envy. Whether the situation calls for her megawatt smile and musical laugh or something more subdued, Tuesdi makes you feel seen and heard.

I wonder at this all the more because I know Tuesdi’s role as the executive director of a rare-disease foundation is demanding—and can be heartbreaking. CFC International supports research into Cardiofaciocutaneous (CFC) Syndrome and provides direct support to the families of children diagnosed with this cluster of conditions. CFC syndrome is a rare genetic condition that typically affects the heart (cardio), facial features (facio) and skin (cutaneous). Children with CFC syndrome may have certain features that suggest the diagnosis, such as relatively large head size, down-slanting eyes, sparse eyebrows, curly hair, areas of thickened or scaly skin and short stature.  Most will also have a heart defect. While there is a wide spectrum of severity in CFC syndrome, most individuals will have some degree of learning difficulty and developmental delay.

Now factor in the knowledge that one of her two precious sons has this rare syndrome. She is, in my book, a Wonder Woman.

We’ve kept in touch via Facebook and texts since Tuesdi left Tampa Bay for Arizona a little more than a year ago, but I wanted to really catch up on life during a global pandemic recently. And so we scheduled a Zoom call.

I found Tuesdi just as energetic and upbeat as ever, and I wanted to ask how she does it, how she stays so positive in the face of everything. It’s a conversation I won’t soon forget, and I’d like to pass along a few things she shared with me.   

Tuesdi sees every day, every situation from at least two points of view: as a special needs mom and a professional. How often do you think the needs or to dos she spots for those perspectives line up? Rarely!

And here’s the truth of it: “I want people to know that, even though I try to make it look easy, it is very hard,” she shared in reference to parenting and working from home during a global pandemic. “Don’t underestimate that. People look at me and other special needs moms or working women and think, ‘Wow; Tuesdi’s got it together, when I see Jane more visibly struggling.’ That doesn’t mean, on the inside, I’m not equally in crisis. I’m doing the best I can, so is Jane. And especially special needs parents—all of us, all the time, we’re just doing the best we can with the circumstances.”

So let’s give each other a little grace, she says. Maybe today is a great day for Tuesdi and a bad day for Jane. Just wait, the tables will turn. And while you’re at it, give yourself a break, too.

COVID-19 has given many of us a crystal clear picture of how we’re really living life, she told me. “The pandemic has given me an opportunity to do a lot of self-examination. Before, I’d have laughed at the notion of self-care. As special needs moms, we rarely give ourselves permission to dwell on self-care or what we need. And it’s not that I suddenly have extra time for single-tasking or taking steps to get some me time, but I see the absolute need for it. I’ve learned to think in terms of today’s focus: today I’m going to focus on….”

She’s also learned that there are a few non-negotiables that must be seen to before she can focus on herself. “I realized it’s not about forgetting all of my obligations; I need to see the kids are safe and settled, then I can begin to focus on myself.”

She’s also learned to recognize what really does qualify as positive, caring action for herself, as well. “Kudos to you if self-care is training for a marathon. That’s not it for me. And I hate pedicures. So, I had to stop letting others decide what qualifies as self-care, or I’d have kept getting pedicure gift certificates. “I had to learn to communicate to my family what works.”

And what works for this Wonder Woman? “Moments to myself, reading design blogs and magazines, looking for inspiration for the decorating projects and creative things I like to do. Now my husband and boys know that a trip to Michael’s to wander the aisles or flipping through home magazines, that’s ‘Mom’s time.’”

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