Tag Archives: writing

Returning to Chile After 19 Years

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By the time Jack was eight years old he had been to Chile three times. It’s where I was born, where we have family and where my folks have a beautiful property. Chile was a huge part of my childhood, and it was going to be a huge part of my children’s lives.

Then ALD changed so many of our plans.

For nineteen years, Chile lived in the category of someday.
Not because we didn’t want to go—but because of the what ifs.

What if Jack had trouble on the flight (11 hours overnight)?
What if he couldn’t tolerate the change in routine?
What if he had an accident mid-flight?
What if something went wrong and we were far from home, far from familiarity, far from safety?

If you live with ALD, you know these what ifs well. They multiply quietly over time, stacking themselves into reasons not to go, not to risk, not to try. And so, for nineteen years, we didn’t return to Chile—the place we once loved, the place tied to memories from before diagnosis, before life split into “before” and “after.”

But this year, we went anyway.

It started as what felt like a dare. Anna announced that she and her boyfriend, Asher, had spoken to my folks about going to Chile. She was only six years old the last time we were there and has always felt cheated from Chilean memories. She announced that my parents were not only encouraging the trip, but wanted to join them. Anna reminded us that this may be the only window of time she has for such a trip as graduation approaches and residency looms. She said that going as a family would mean the world to her. 

Then my folks started their campaign. 

Conversations that ended with maybes were followed with links to airline tickets and hotel information. My parents are beyond generous and know how to make things happen.

So, Christmas Eve we put the what ifs in a box and went to Chile.

It wasn’t a small undertaking. It was ten days away, involved four flights, unfamiliar beds, new foods, long days, and the emotional weight of returning to a place we hadn’t seen since Jack was diagnosed.

And many of the what ifs came true.

  • Jack did not sleep one single wink on any of our four flights. Not one. 
  • As we boarded our flight to Puerto Montt, Jack pooped. We were told that we couldn’t return to the terminal bathroom so we sat for 90 minutes with poop and unhappy glares from our fellow passengers.
  • At the end of a beautiful six-course, wine-paired meal at a vineyard, Jack suddenly vomited all over the table. It was embarrassing, yes—but more than that, it was scary. That split second where your heart drops, your mind races, and you wonder if this is the beginning of something bigger.
  • There were also an assortment of large uber tips following pee stains and the need to find bathrooms in the most unlikely places – yes toileting for both Jack and I is always an adventure.

But here’s the part that matters most — We survived.

Not just survived—we adapted, adjusted, laughed when we could, cried when we needed to, and kept going. We leaned on each other. We problem-solved. We reminded ourselves that discomfort is not the same as danger, and fear does not get to make all the decisions.

And in between the hard moments, there was so much good. There was beauty. There was connection. There were delicious empanadas and more pisco sours than I should have enjoyed. There was joy in being together, in watching Jack, Anna and Asher experience something new, watching my parents share stories and experiences, and in reclaiming a place that once felt stolen from us for nearly two decades.

ALD has taken enough. It has taken certainty, ease, and spontaneity. But it does not get to take our lives.

This trip to Chile wasn’t about perfection. It wasn’t smooth, or restful. It was real. It was messy. It was brave. AND it was Instagram worthy – enjoy the photos!

It was also proof that we will not let the what ifs win.

Because here’s what we learned, nineteen years later:
We can be scared—and still go.
Things can go wrong—and still be okay.
We can live with ALD—and still thrive.

Thank you Anna for the push and thank you Nonno and Mymom for the glorious trip!

Love, Jess

Summer 2025 — Birthdays, Travel, Words and AI

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I sat down yesterday to write a post about our summer. I was stuck. I kept getting started but the words just didn’t seem to flow. On a whim I asked ChatGPT if they knew the blog Smiles and Duct … Continue reading →

Trust, Trips, Texts and Dance Lessons

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Jack goes to a day program three days a week. Each evening following these days, I face the backpack. The backpack is a mystery box. It often contains soiled clothing (glamorous), an art project, and a note from his classroom … Continue reading →

a little taste of my old life

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I got a little taste of my old life last weekend.

Two former clients reached out to me about taking some photos. I’ve had the pleasure of doing a few projects over the last ten years, but my days of steady photo work are long gone. Another victim of Adrenoleukodystropy. Occasionally, I get calls from old clients and I usually explain that I’m focused on other things, but these customers wouldn’t take no for an answer, so I dusted off my camera and I crossed my fingers.

Two shoots in one day. It felt strange to be behind the lens again, but as I looked through the work this morning, I smiled. I still got it. I’m not planning on going back to weekends full of families and babies, but it sure felt good to dip my toe into my old life.

I try not to spend much time focusing on what ALD stole from us, but there are some days that remind me of things that we’ve lost. Saturday was one of those days. I’ve been thinking a lot about it and I’ve realized that although I miss my camera, even without working as a photographer, I’m still using that side of me.

I have substituted photography with writing. I approach each in the same way. I have an idea and I troubleshoot until I find a way to achieve my goal – whether it’s catching the sparkle of a giggling baby or sharing a story. And, both photography and writing are about connecting with people. I was a decent photographer, but I think my biggest strength was how I approached my clients. I’m good at reading people and I’m a good listener. I usually managed to make my clients comfortable. When taking portraits you need to have the client feel comfortable with you – otherwise you end up with that lame, awkward smile that we all had in our ninth-grade school photos.

I’m also aware of the comfort of people who read my blog/book. I’m a decent writer, but certainly not trained. I think what people respond to is the voice in my writing. It’s approachable. Whether I am taking about watching JackO win his race at the Special Olympics or how it feels to fight with Social Security or what it’s like to shower your eighteen-year-old son after he has soiled himself, your sofa and the floor (have I written that yet? It’s a common occurrence around here) – I think (hope) I am able to bring people into our lives for a brief moment.

As much as I loved picking up my old life, I think I have settled comfortably into my new one. I’ll take my computer over my camera for now. I need to write to help myself process our experiences and I love sharing with people who are going through similar challenges. I’m putting my camera back in it’s case. Not that I will always say no when old clients reach out. I might dip back into my old life every now and then. Maybe two or three shoots a year  . . . maybe four or five.

Love, Jess

PS While I was writing this, I got an email that a piece I wrote about medical marijuana is getting published on The Mighty. I get my share of notes that start with, “Thank you for sharing your piece. Unfortunately . . . . “. It feels great to get a note that starts with, “Thank you for sharing your story “Our Family Secret” with us! We’d like to feature it on The Mighty and make you an official Mighty contributor.”

 

 

Trying to be Duct Tape

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Look what Anna stumbled upon while on our School District’s website:

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In case you missed it – check this out!

 

Jack and I have also had the pleasure of speaking to several classes at South Orange Middle School and are scheduled to speak at an event for CPNJ, a Clinton School fundraiser and a few book clubs. Never did I imagine speaking being part of our journey, but here we are.

I was talking with a friend last week who has a child going through a difficult time with his own challenges, and she said, “I can’t wait to be on the other side of this. I can’t wait to be in a place where I can help other families.” All I could say was, “You’ll get there. It’s awesome!”

We could have reached this place and just lived our new normal, but our family was eager to thank everyone who helped us along the way (our duct tape). I’ve never been great with “thank you notes”, so instead we chose to thank our duct tape by paying it forward – by trying to BE DUCT TAPE.

Whether we are delivering Boxes of Fun (Anna and her Columbia High School friends have taken over, but Jack and I still deliver) or talking on the phone to a newly diagnosed ALD family or speaking to a group of young people about kindness – it’s confirming that we are on the other side AND it’s our way of thanking all of you.

I don’t believe that nature/life has a perfect plan for all of us – I’ve witnessed too much to make sense of that as a reality. What I do believe is that we all have the power to make the most of the lives we are living. I might not always make the best choices, but I will always do my best to help others. If our family can be a little bit of duct tape for someone else, we have done our job.

 

Love, Jess

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A Room Full of Duct Tape

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I’m not sure of the best word to describe Thursday’s reading at WORDS – but unreal and overwhelming keep coming to mind. The reading took place in the basement of our local bookstore (that makes it sound depressing – it’s … Continue reading →

B Nice

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The Eagle has landed. Smiles and Duct Tape has been released. It’s out of my hands and out there for all to see – and read – and judge – AHHHHHHHHH!

I have lived my life trying to keep expectations low. If you strive for an A and end up with a B, you’re disappointed. If you strive for a C and end up with a B, you’re thrilled. I‘ve been a solid B most of my life and proud of that accomplishment. I pat myself on the back almost every day. Even days when I’m making dinner still unshowered in my yoga pants, if my family made it through the day and is being fed, it’s been a successful day!

Smiles and Duct Tape is the first time that people have rather high expectations for me. I do think that my writing has improved over the last ten years, and I’m proud of my 500 word essays on this blog, but the book is 49,000 words – in a row, it’s about the worst 1000 days our family has ever been through, AND I’ve never written a book. I hope people are looking for a solid C performance and give me a big high-five when they discover it’s a B, maybe B+.

If you read Smiles and Duct Tape and enjoy it, I encourage you to write a review on Amazon and/or Goodreads. If you read it and think I should stick to 500 words at a time, please keep that information to yourself.

The book is currently available at Deeds Publishing, at our beautiful local bookstore WORDS, Amazon (paperback and eBook) and my basement. Please contact me for quantity purchases (i.e. book clubs/super fun holiday gifts for the whole family) and I will give you a deal.

Love, Jess

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another week walking on eggshells

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Good news, bad news.

I will start with the bad so that I can end on a high note (that’s my thing, in case you haven’t noticed).

I had a mild freak-out last week and asked my poor publisher to make some changes to the manuscript. It may have been my way of delaying the production of SMILES AND DUCT TAPE – it’s been hard for me to let go of this project. Anyway, it worked. We’re about a week behind with the release of the book.

The good news is that the book is now with the printer and it should be in your hands by the end of next week. It’s not too late to pre-order – CLICK HERE!

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Now I can spend another week walking on eggshells.

I’m guessing all first-time authors are nervous as they brace themselves for the public’s reaction to their writing. Add that I’m a girl who couldn’t really read until fifth grade AND I was not born a writer — just ask my high school English teachers. I feel almost ridiculous adding the title of author to my resume. And, it’s not just my words that I’m worried about releasing for judgment – it’s my family. I’m hoping that people find our story inspiring, but who knows . . .

It’s too late now. The book will be out there soon and, whatever happens, our family will survive. THAT is one thing that I can always count on.

Love, Jess
I promise that I AM NOT looking at the book again – no more delays.

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10 days.

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Ten days until the release of Smiles and Duct Tape and I’m suddenly in a full-blown panic.

Here’s the thing – As excited as I am to get the book out there, I’m nervous about letting it go. I keep wondering if I’ve forgotten anything or anyone. I’m used to writing 500-word blog posts that I can edit if needed – a book feels so permanent. I’m also worried about the content. I’ve shared our family through the blog for almost ten years, and have been honest, but not quite THIS honest. The book is pretty raw. It follows the first 1000 days of our journey with ALD, and I don’t hold back on the reality of what we went through. I hope that readers appreciate the candor.

If you know our family (or read this blog), you know the ending. You know that Jack survived transplant and so did our family. You know that Dan and I are still married and that Anna has turned into a remarkable young woman. You know that the Torreys are pretty much back to being the family we once were – just with a few complicated issues.

So why did I write this book?

1.) I told people I was writing a book and have a history of not finishing projects. There was no way I was going to “pull a Jess” with this.

2.) I wanted to thank everyone who has helped our family and I’ve never been good with thank you notes.

3.) For typical/normal/non-challenged (insert appropriate PC word here) families to see that differently-abled/complicated/special (insert appropriate PC word here) families are just families.

4.) I want Smiles and Duct Tape to finds it’s way to families going through crisis. Not necessarily ALD (or even illness),  just lives that have turned upside-down. I want to share how our family managed to survive.

So, the book is written and in ten days is will be out there. I’m nervous, excited, and kinda feel like I’m going to throw up.

To PRE-ORDER your very own copy of Smiles and Duct Tape – CLICK HERE!

Love, Jess

PS I’m happy to speak at schools or book clubs or to anyone that might want to hear about how our family survived and accepted a new normal. Please email me to something up.

the book, social security and magic

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It’s been high excitement over here for a couple of days. The book is approaching the finish line and there have been head shots, cover art and websites. And, there’s been social media – Facebook has been like a birthday, only better.

In the middle of all of this, I got a phone call. “It’s the Social Security Administration. May I please speak to John Torrey?”

Deep breath, “I’m sorry, John doesn’t speak. This is his mother, Jesse.”

“Mrs. Torrey, John is over 18. I need to speak with him.”

Count to ten, “Sure. I can put him on the phone. You might get a smile out of him, but I can assure you that he will not speak to you.”

I could hear the shuffle of papers in the background, “Okay, sorry. John got approved for benefits. Can you come in tomorrow morning to finish the paperwork?”

My mind raced thinking of all the things I had planned, but I found myself saying, “How early should we arrive to make this as painless as possible?”

That’s our reality. We have priorities that can’t be put on the back burner.

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So, this morning Jack and I left early enough to be there before the Social Security Administration office opened. Determined to get in and out quickly enough so that Jack didn’t miss too much school and I didn’t miss my very important hair appointment. Unfortunately, we were far from the first in line, so we sat. And sat. Jack and I were busy taking selfies and making each other laugh, when I noticed the couple behind us admiring him. Jack has a way of making friends wherever we go. The man offered Jack some gum, which Jack grabbed without a thought and popped into his mouth (yes – Jack takes candy from strangers and I let him). We started talking to the couple and before too long they shared that their son had Down Syndrome and that they felt so blessed that he is not just doing well, but is happy, “Just like your son.”

We talked and talked – enjoying our visit so much, that I was almost disappointed when we got called to meet with our representitive. We exchanged goodbyes and off we went. As Jack and I sat waiting for the paperwork to be done, our new friends stopped by to say goodbye. The man reach into his pocket and handed Jack his pack of gum, “This is for you Jack. Enjoy!”

Jack gave him a high five and I thanked our new friends and wished them well. Then, as he walked away, the man turned around and said, “Oh, and Jack – take your mom out to lunch.”

I looked down at the gum in Jack’s hands and there was a twenty dollar bill stuck in the pack.

Our lives are complicated, but sometimes I feel like magic follows us around.

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We made it home in time for Jack to go to school for a couple of hours and for my hair to get back to being sassy. Now I have the task of reading the book one last time before it gets printed. As I travel back to the early days of Jack’s diagnosis, I am trying to remind myself of all the magic in our lives and just how lucky we are.

Check out my  “author page” – this is really happening!

Love, Jess

PS  We made a donation to CaringBride today. We love to “pay things forward” and without CaringBridge there would be no book.