Still Here. Still Thriving.

Still Choosing to Thrive: Growing Older With Neurofibromatosis

I have lived with neurofibromatosis for my entire life, but living with NF has not always looked or felt the same. When I was younger, my symptoms were easier to hide. I could move through the world without everyone knowing what was happening beneath the surface. I pushed the signs of NF into the background...And I got away with this, until my OFFICIAL DIAGNOSIS in 2007.

But aging has changed that...I can no longer push aside the symptoms.

As I grow older, NF seems to demand more of my attention. New symptoms appear, familiar ones become harder to ignore, and my body no longer recovers as easily as it once did. Pain, exhaustion, physical changes, and the uncertainty of what may come next have become a larger part of my life. Menopause and the natural aging process have added another layer, making it difficult at times to know where one struggle ends and another begins...One exacerbates the other. 

There are days when I look in the mirror and barely recognize the body looking back at me. I see the evidence of time, but I also see the evidence of NF. Every new symptom can carry a wave of fear.  The progression of NF seems cruel and unfair.

What am I learning from this?  What's the point of it all?  Why won't God just cure me?

Those questions can be exhausting.

At my core, I am still determined to THRIVE. That word means something deeply personal to me. Thriving does not mean pretending that everything is fine. It does not mean smiling through pain or denying the fear and frustration that sometimes settle into my heart. Thriving means continuing to live, love, laugh, and hope—even when NF makes those things harder.

Some days, thriving looks like strength and confidence. It looks like showing up for the people I love, enjoying time with my family, and refusing to let a diagnosis define the boundaries of my life.

Other days, thriving simply means getting out of bed.

It  also means allowing myself to rest without feeling guilty. It means admitting that I am tired. It means crying when I need to cry and reminding myself that one difficult day does not erase a lifetime of courage.

As I grow older, I also find myself understanding my mom in ways I never expected. She carried her own anger, fear, and frustration surrounding neurofibromatosis. When I was younger, I could not fully understand why she seemed so bitter or why she blamed God for the pain NF brought into our family. Her anger affected all of us, and for a long time, it was difficult for me to look beyond it.

Now, on my hardest days, I understand her a little more.

I understand what it feels like to be angry at a condition that takes without asking. I understand the helplessness of watching the people you love struggle. I understand the guilt that can come from knowing a genetic condition has been passed from one generation to the next. I understand how fear can turn into frustration and how frustration, when carried for too long, can become anger.

But understanding my mother does not mean I have to become consumed by the same anger.

I refuse to give NF that much power.

I will acknowledge the hard days. I will be honest about the pain, the fear, and the ways my body is changing. I will not shame myself for feeling discouraged. But I will also keep looking for beauty. I will keep holding my family close. I will keep celebrating ordinary moments, because I have learned that those moments are often the most amazing.

Neurofibromatosis is part of my story, but it is not the whole story.

I am a woman living with NF. I am also a wife, a mother, a soon to be grandmother, a teacher, and a friend. I am someone who has carried fear and still chosen hope. I have watched my body change and still found reasons to be grateful for the life it allows me to live.

Aging with neurofibromatosis is not easy. Some days, I feel strong enough to face anything. Other days, I completely understand my mother’s frustration and anger.

But even then, somewhere beneath the exhaustion and fear, my strong spirit remains.

I may crumble. I may grieve. I may need to stop and rest.

But I refuse to give in.

I am still here.

I am still growing.

And even on the hardest days, I am still THRIVING!.

Neurofibromatosis, Pregnancy, and Choosing Hope in the Unknown

 Pregnancy is often described as a season of joy, anticipation, and beautiful dreams. But when you live with Neurofibromatosis—or love someone who does—pregnancy can also carry a fear that is difficult to put into words.

Alongside the excitement comes an aching question: What if my baby inherits this condition?

Neurofibromatosis is unpredictable. It can affect each person differently, even within the same family. One person may experience relatively mild symptoms, while another faces tumors, chronic pain, surgeries, learning challenges, or complications that change the course of everyday life. That uncertainty can make the decision to have a child feel incredibly heavy.

The fear is not simply about passing on a gene. It is about wondering whether your child will someday struggle. It is imagining appointments, scans, difficult decisions, and moments when you may feel helpless. It is the possibility of watching someone you love experience challenges you understand all too well.

Then comes the guilt—the kind that can begin before a baby is even born.  I remember, after my own 'official' diagnosis, the weight of the guilt was overwhelming.

You may question whether it is selfish to want a child. You may wonder whether you are making the right decision. If your child does inherit Neurofibromatosis, you may blame yourself, even though genetics are not a moral choice and love is never something that needs to be justified.

These feelings are real. They deserve to be acknowledged, not brushed aside with easy answers or forced positivity.

But there is another truth that deserves space, too: no parent is ever promised certainty.

Every pregnancy begins with unknowns. Every child enters the world with a story that has not yet been written. Parents can make careful decisions, ask questions, seek medical guidance, and prepare as much as possible—but no one can predict every challenge or protect a child from every hardship.

That does not make the fear disappear. It simply reminds us that uncertainty is woven into every human life.

A diagnosis may become part of a child’s story, but it does not have to become the whole story. A person with Neurofibromatosis is still capable of joy, love, laughter, purpose, accomplishment, and deep connection. They may grow up to become an artist, a teacher, a parent, a friend, an advocate, or something they have not even imagined yet.

They are not only their scans, tumors, symptoms, or medical appointments. They are a whole person with dreams, strengths, quirks, talents, and a life that holds endless possibilities.

Living with Neurofibromatosis can also create a kind of strength that is difficult to explain. For me, growing up with a mother who blamed god, blamed herself, and blamed everyone around her, for the consequences of her choices...I also had a choice to make.  Follow her road to the never-ending road to no-where, or make the choice to live beyond the fear- and stop being a victim. 

Living with NF has taught me resilience, compassion, patience, and the courage to keep moving forward without knowing exactly what lies ahead. Those lessons are not easy, and I know- no one would choose the pain that life sometimes brings them. 

Still, beauty can grow beside difficulty.

I like to think that courage is not the absence of fear...But, maybe, courage is allowing ourselves to hope while fear is still present.

For anyone facing pregnancy while carrying a genetic condition, it is okay to feel excited and terrified at the same time. It is okay to grieve the certainty you wish you had. It is okay to speak with genetic counselors, ask difficult questions, lean on people who understand, and take the time you need to make decisions that feel right for you and your family.

There may never be an answer that removes every doubt. Sometimes, we simply make the most loving decision we can with the information we have.

Life has never promised us predictability. What it offers instead are moments—first heartbeats, tiny fingers wrapped around ours, laughter filling a room, and love that arrives larger than we ever expected.

Neurofibromatosis may bring uncertainty, but uncertainty does not mean hopelessness.

None of us knows exactly what the future will hold. We only know that life, even when complicated, can still be meaningful and beautiful. We know that people can face difficult things and still THRIVE.

We know that fear and hope can live in the same heart.

And sometimes, choosing hope in the middle of the unknown is the bravest beginning of all.

THRIVE ON

My grandson-

Jacen Michael