Sometimes the chapters we never expected to write become the ones that mean the most.
If you had told me a year ago that I would be writing books, creating resources for families, building an author website, and sharing pieces of my life with people I’ve never met, I probably would have laughed.
Actually, I know I would have laughed.
Not because I didn’t have stories to tell. Anyone who knows me knows I have plenty of those.
But because becoming an author wasn’t exactly part of some carefully thought-out life plan.
Then again, very little about my life has gone according to plan.
And maybe that’s part of what makes this journey so special.
One Story Became Something Bigger
When I started writing Written Along the Way, I had one goal.
Tell my story.
Not a perfect version of it. Not a version where every difficult experience magically worked out or every person made the right decision.
Just my story.
The good, the bad, the heartbreaking, the funny, and all the moments in between.
I wanted to share what life had looked like growing up with juvenile dermatomyositis, navigating relationships, experiencing loss, finding independence, and learning to keep moving forward when life took unexpected turns.
I didn’t know exactly where the writing would lead.
I certainly didn’t expect to write ten chapters on the first day.
Apparently, once I started talking, there was no stopping me.
But something changed as those chapters came together.
I realized there were other stories I wanted to tell.
Stories for children growing up with JDM.
Stories for teenagers who might be struggling with the same questions I once had.
Stories that could help parents, grandparents, siblings, teachers, and friends better understand what living with a rare disease can look like.
And then came stories that weren’t directly about my diagnosis at all.
Stories about friendship, perseverance, inclusion, and finding your own way.
Some were inspired by experiences from my childhood. Others came from memories, people, or even a certain four-legged companion who seems convinced that supervising me is a full-time career.
One book became another.
And then another.
Suddenly, the writing journey I never planned had become something much bigger than I imagined.
Learning That Plans Can Change
If there’s one thing living with a rare disease taught me early in life, it’s that plans can change.
Sometimes quickly.
Sometimes without warning.
And sometimes in ways that leave you wondering what on earth you’re supposed to do next.
As a child, my days didn’t always look like those of my friends.
There were medical appointments, treatments, hospital stays, and times when my body simply couldn’t do what I wanted it to do.
As an adult, I’ve experienced plenty of other unexpected changes.
Surgeries.
Relationships that didn’t turn out the way I hoped.
Losses I never imagined having to face.
Moves, new beginnings, and moments when I had to figure out how to rebuild pieces of my life.
There have been times when I’ve looked at where I was and wondered how I ended up there.
And there have been times when something I thought was the end of a chapter turned out to be the beginning of another.
I won’t pretend I’ve handled every change gracefully.
I’ve had my stubborn moments.
Okay, probably more than a few.
But I’ve learned that a changed plan doesn’t automatically mean a failed plan.
Sometimes it simply means life is taking a direction you didn’t expect.
And sometimes that direction leads somewhere meaningful.
The People Along the Way
One thing I know for certain is that I haven’t gotten here alone.
There have been people throughout my life who helped make difficult seasons a little easier.
Teachers who recognized that I needed accommodations but still deserved opportunities.
Friends who included me without making me feel like a burden.
Family members who helped me navigate the things I couldn’t manage on my own.
People who encouraged me, challenged me, supported me, and sometimes believed in me before I fully believed in myself.
Some of those people are still part of my everyday life.
Others were part of a particular season.
And some probably have no idea how much of an impact they made.
That’s something I’ve been thinking about more as I write.
We often remember the big moments in life.
The diagnoses.
The surgeries.
The graduations.
The weddings.
The losses.
The accomplishments.
But sometimes the people who quietly stood beside us during those moments made just as much of a difference.
A teacher who found another way for me to participate.
Someone who showed up when life got difficult.
A friend who treated me like everyone else when that was exactly what I needed.
Those moments matter.
And the older I get, the more I appreciate them.
Maybe that’s why I keep finding more stories to tell.
Because my life isn’t made up of just the things that happened to me.
It’s also made up of the people who helped me through them.
Finding Purpose in Unexpected Places
I never would have chosen to grow up with juvenile dermatomyositis.
I wouldn’t have chosen the treatments, the physical limitations, or the moments when I felt different from my peers.
And there are other experiences in my life I certainly wouldn’t choose to repeat.
But I can look back now and recognize that those experiences shaped the way I see the world.
They taught me to appreciate small victories.
They taught me that independence doesn’t always look the same for everyone.
They taught me that asking for help isn’t the same as giving up.
And they taught me that sometimes the smallest acts of kindness can leave the biggest impressions.
Now, through writing, I’m finding ways to use some of those experiences to help other people.
I can’t change what happened in the past.
I can’t go back and make every difficult day easier.
But I can share what I learned.
I can create a book that helps a child feel understood.
I can write something that gives a parent a different perspective.
I can tell a story that reminds someone they aren’t the only person who has struggled with something.
And I can use experiences that once felt like obstacles to create something meaningful today.
That doesn’t make the difficult parts of life disappear.
It doesn’t mean everything suddenly makes sense.
But it does remind me that something good can still grow out of a chapter I never wanted to write.
This Journey Is in God’s Hands
I’ve said from the very beginning that this writing journey is in God’s hands, not mine.
And I truly believe that.
I don’t know exactly where all of this is going.
I don’t know how many books I’ll eventually write.
I don’t know how many families they’ll reach, what opportunities may come along, or which stories I’ll feel called to share next.
And for someone who likes to have at least a little idea of what’s happening, that’s not always easy.
But I’ve learned that I don’t have to have every answer right now.
There have been plenty of times in my life when things didn’t make sense in the moment.
Times when I questioned why something happened.
Times when I prayed for a different outcome.
Times when I had to keep moving forward without knowing what the next step would look like.
And looking back, I can see how some of those experiences led me to people, places, and opportunities I never expected.
Not every difficult experience has a neat explanation.
Not every prayer is answered the way we hope.
And faith doesn’t mean life suddenly becomes easy.
But for me, faith means believing that even when I can’t see the whole picture, God hasn’t lost sight of it.
Jeremiah 29:11 has long held a special place in my heart.
It’s a reminder that my understanding of the future is limited, but my faith doesn’t have to be.
And right now, that’s how I’m approaching this journey.
One story.
One book.
One opportunity.
One step at a time.
The Little Girl I Used to Be
Sometimes I think about the little girl I was.
The one in the pink wheelchair.
The one who loved horses and swimming.
The one who wanted to be like her friends and didn’t always understand why things had to be different for her.
I wonder what she would think if she could see my life today.
Would she be surprised that I’m writing books?
Probably.
Would she believe that some of the experiences she struggled with would eventually become stories meant to help other people?
I’m not sure.
Would she be excited about having a German Shepherd who goes practically everywhere with her?
Absolutely.
Although she’d probably want to know why he gets to go to work when she still had to go to school.
I wish I could tell her that life won’t always be easy.
That some dreams will change.
That some people will come and go.
That she’ll experience things she never imagined, both wonderful and heartbreaking.
But I’d also tell her that she’ll find ways to keep going.
That she’ll discover new interests and opportunities.
That she’ll meet people who change her life.
That she’ll learn she can be independent while still accepting help when she needs it.
And that one day, she’ll have stories worth sharing.
Not because her life was perfect.
But because it was hers.
I Don’t Know What Comes Next
Right now, there are more book ideas in my head than I probably know what to do with.
Some are already being written.
Others are waiting their turn.
And a few are still nothing more than ideas that popped into my head at completely inconvenient times.
Apparently, inspiration doesn’t believe in normal business hours.
But I’m excited to see where this journey goes.
I’m excited about the children who may eventually read these stories.
The families who may find resources they didn’t know existed.
The friendships and opportunities that may grow out of sharing my experiences.
And the stories I haven’t even thought of yet.
I don’t have a perfectly organized roadmap for all of it.
And I’m learning to be okay with that.
Because this journey was never something I carefully planned from beginning to end.
It started with a story I felt I needed to tell.
And somehow, that story opened the door to so much more.
One Chapter at a Time
If there’s anything I’ve learned over the years, it’s that life rarely follows the outline we write for ourselves.
Sometimes the chapters are longer than we expected.
Sometimes they end before we’re ready.
Sometimes we find ourselves starting over when we thought we were finally settled.
And sometimes the most unexpected chapters turn out to be the ones that change us the most.
I don’t know what the next year will bring.
I don’t know where these books will lead.
And I don’t know whose life might be touched by something I’ve written.
But I do know that I’m grateful for the opportunity to share these stories.
I’m grateful for the people who have encouraged me along the way.
And I’m grateful that even after everything life has thrown my direction, there are still new chapters waiting to be written.
So I’m going to keep writing.
I’m going to keep creating.
I’m going to keep sharing the stories that I feel called to tell.
And I’m going to keep trusting that God knows where this journey is leading, even when I don’t.
Because sometimes the most meaningful chapters of our lives are the ones we never planned to write.
And if there’s one thing my life has taught me, it’s that the story isn’t finished just because the plan changed.
I’m still writing mine. ❤️
Tiffani Joi Hortman
Author of Written Along the Way and stories inspired by life, faith, resilience, and the people we meet along the way.
www.tiffanijoihortman.com
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