Tag Archives: writing

Rare Disease Day

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HaPpY rArE dIsEaSe DaY!

Rare Disease Day is a day that reminds the world that rare doesn’t mean small. It doesn’t mean insignificant. It doesn’t mean invisible.

It means there are families like ours — loving fiercely, advocating loudly, and learning to build beautiful lives in the middle of something we never would have chosen.

Jack’s life is beautiful. It’s big and full of love and fun and smiles.

Not because ALD is easy.
Not because the road has been smooth.
But because he is surrounded by smiles and his duct tape.

If you’ve followed this blog for any amount of time, you know what that means. Smiles are the joy, the hockey nights, the ordinary Tuesdays that feel like victories. Duct tape is the holding-together — the people in Jack’s life that are always here to help, to laugh, to figure out how to have fun with JackO. Duct tape is also the logistics, the medical appointments, the day programs, the caregivers that have become Jack’s Other Mothers (they are huge part of the smiles too), the medications, the research, the hard conversations, the resilience that shows up when it has to.

Jack’s life is held together by all these things, but I want to give a special shout out to the medical professionals who dedicate their careers to rare diseases, researchers who refuse to stop until treatments become possible.

The treatments Jack has received did not appear out of thin air. They are the result of decades of science, advocacy, fundraising, and families who said, “Not good enough. Keep going.”

We are profoundly grateful.

To celebrate Rare Disease Day, our family created a fundraising page for ALD Connect.

Thank you to every friend and family member who has already donated to ALD Connect through our page. JackO sends each of you a warm smile, a killer hug and a lick if you’re really lucky. Thank you to members of the ALD community who understand this life from the inside out. And, a special thank you to the under 30 crowd who made donations. I know times are complicated and wallets may be thin. My niece, Sara, gets a shout out for being the youngest giver and I also want to recognize and thank several of Anna’s friends — some who have known and loved JackO for many years, and some who haven’t yet had the pleasure of meeting him.

Many of these kids (always kids to me) will soon begin their lives as physicians. The fact that they have ALD on their radar — that this rare disease is no longer invisible to them — matters more than they probably realize. One day, they will sit in exam rooms and carry that awareness forward. That’s how change happens.

That’s how rare becomes recognized.

If you feel moved, I invite you to make a donation to ALD Connect through our fundraising page. Your support funds research, education, and connection for families navigating this disease. It helps ensure that more children with ALD, more adults with ALD and more families dealing with ALD every single day (NOT just Rare Disease Day) have access to treatments, information, and community.

Rare Disease Day is not just about what we are fighting — It is about what we are building!

Love, Jess

ALD No Limits

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Mymom and I were recently interviewed by friends and fellow ALD folks, Ken and Christie, for ALD No Limits, and I can confirm: speaking about ALD feels great, but it’s a little distracting when the whole time you’re wondering, “Is it strange that my mother and I have the same haircut?”

But in all seriousness, what Ken and Christie are doing by sharing these stories is incredible.

ALD is complicated. It is medical and emotional and genetic and generational and can be different for every person/family. For our family it is motherhood and frustration and pain and fear and celebration and advocacy all wrapped into one long story. And getting to sit beside Mymom — we are two women connected by more than just DNA — and talk about what this journey felt powerful.

It felt honest.

It felt a little vulnerable.

It felt like we were connecting with community.

I know most of you many know our story, but if you’ve ever wondered what living with ALD looks like across generations… if you’ve ever wanted to understand the human side of this diagnosis… if you’ve ever needed proof that you can carry something heavy and still laugh — I hope you’ll watch.

ALD No Limits

You will see:

  • A mother and daughter trying not to talk over each other.
  • A mother and daughter who share a haircut and ALD and a love for JackO.
  • A few earnest moments.
  • A lot of heart.
  • At least one facial expression I didn’t rehearse.

Most importantly, you’ll see why sharing your story is important. 

Community is not optional in rare disease. It is survival. It is education. It is connection. It is the life vest when the waters feel rough. Thank you Ken and Christie for creating this incredible platform and for inviting Mymom and I to participate!

If the video moves you — even a little — please consider supporting ALD Connect. Your donation funds necessary research, helps families find answers, find each other, and find steadier ground.

DONATE HERE

Watch. Share. Donate.
And maybe forgive my camera face. 😉

Love,
Jess

Life Vest

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Last month, I received a note from a dear friend (and a founding member of ALD Connect), that made me pause, breathe, and let out one of those slow, grateful exhales that seem to come from a place deeper than … Continue reading →

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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