Reaching milestones I never imagined possible after my PH diagnosis

When I was diagnosed with pulmonary hypertension (PH) more than 20 years ago, so much of the conversation was about what might be taken away from me: my health, my independence, my plans for the future, and most likely, even my time. What no one could tell me then was how many beautiful, ordinary, and extraordinary moments I would still get to experience.

Back then, my daughter, Kayla — who goes by “KK” — was still growing up. I didn’t know if I would see her learn to drive. In the beginning, shortly after my diagnosis, it was challenging to allow myself to think too far ahead to high school graduation, college, marriage, or the woman she might someday become.

When you’re living with a progressive rare disease like PH, looking too far into the future can sometimes feel frightening or overwhelming. You learn to celebrate today’s victories while quietly hoping there will be many more tomorrows.

Somehow, those tomorrows kept coming.

I watched KK learn to drive. I watched her graduate from high school and college. I watched her navigate a broken heart and life’s many road bumps. And through every season, I watched my little girl grow into an intelligent, funny, compassionate, strong, and resilient woman.

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From left, Travis, Ryker, and Kayla “KK” Holley take a family photo in August 2026. (Courtesy of Jen Cueva)

Now, as her birthday approaches on Aug. 25, I’m witnessing a milestone I once couldn’t even let myself dream about: My baby girl is now a mom!

Last month, she and her wonderful husband, Travis, welcomed my grandson, Ryker — or, as I lovingly call him, “Mimi’s little dude.”

Becoming a “mimi” has stirred emotions in me that are difficult to put into words. There is overwhelming joy, but underneath it is something even deeper: gratitude.

I’m here.

I’m here to hold him. I’m here to watch my daughter hold her son. I’m here to watch this new little family find its rhythm and to see Kayla step into motherhood.

After being told more times than I can count that my time here could be nearing its end, being present for this chapter feels almost sacred.

I didn’t get here alone

For more than two decades, a village has carried me through PH. My husband, Manny, has stood beside me through the frightening days and the celebrations. My parents, siblings, extended family, friends, and “PHriends” have stepped in, prayed, encouraged, helped, and lifted me when I needed it.

Then there are the people whose work has given me more tomorrows: my incredible PH team, my other specialists and their teams, researchers, and those working to develop new treatments and other therapies. Every advancement matters because behind the research are people like me hoping for one more birthday, graduation, wedding, family dinner, or perhaps the chance to meet a grandchild.

That’s what I want someone newly diagnosed with PH to know. Your diagnosis will change your life. There will be difficult days, unexpected detours, fear, frustration, and grief for pieces of life that may look different from what you had planned. But your diagnosis cannot tell you every beautiful thing still waiting ahead.

I am living proof that some of your greatest milestones may be ones you haven’t imagined yet.

To my KK, as you celebrate your birthday this month, there’s something I want you to know. For all these years, you’ve told me how strong you think I am. But baby girl, I’ve been watching you.

Ryker (Mimi’s little dude) at 4 weeks old. (Courtesy of Jen Cueva)

You were the child growing up alongside PH. You learned early that plans sometimes change, that Mom couldn’t always do what other moms did, and that life doesn’t always follow the path we expect. Yet you never stopped reaching for the stars and chasing your dreams.

Now I watch you with Ryker, and my heart sees you differently. I see my daughter, but I also see a mother learning the enormous, beautiful weight of loving another human more than herself.

There will be days when motherhood feels messy. You’ll question yourself. You’ll cry. You’ll wonder whether you’re doing enough.

You are. And when you forget that, I’ll be here to remind you.

One of the greatest gifts PH has taught me is not to wait to say what matters. So, on your birthday, I want you to know this: Watching you become the woman and mother you are today is one of the greatest privileges of my life.

Happy birthday, my beautiful baby girl! Here’s to you, to Travis, to our precious Ryker, and to all the memories we haven’t made yet.

After more than 20 years managing PH, I know better than to take a single one for granted. And KK, I have a feeling some of our very best ones are still ahead.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.