Day # 6740 . . . Life for all of us Torreys has been pretty great lately — full of adventure, connection, and a few unexpected surprises. Last weekend, Mymom and I had the pleasure of attending the ALD Connect Annual … Continue reading
beyond lucky
Tag Archives: family
Summer 2025 — Birthdays, Travel, Words and AI
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
Celebrating Jack and His Ripples
Years #18 — Day #6575
Eighteen years ago, we watched as stem cells went into Jack’s body. The room was full. Our Torrey 4, Mymom, Nonno, several doctors, countless nurses, and a huge amount of hope. Hope that the cells would take over and stop the disease that was destroying Jack’s brain. Hope that we would bring Jack home. Hope that our lives would return to normal.
Seventy-nine days later, two of those hopes had come true. The transplant had worked and Jack was home. But that last hope—the one where life would return to “normal”—never quite happened.
Eighteen years later, we’ve learned that “normal” wasn’t something to return to. Instead, we’ve built something new—something extraordinary. Our lives have shifted in ways we never imagined. Our perspectives, our dreams, even our careers—changed. And in those changes, something beautiful has grown.
This is the ripple effect: how one moment—one life—one experience—can reach far beyond what we can see.
If Jack’s journey has touched your life, we’d love for you to share your story. How has his story touched your life? How did these ripples go beyond you?
I’m starting to compile a list of stories of the ripples Jack created. I want to have them all in one place to treasure them, celebrate them—this is Jack’s legacy. Please share them here or send them to jctorrey@mac.com.
Happy Birthday JackO!!!!
And thank you in advance or helping us put the ripples together.
Love, Jess
A special thank you to the parents of “The Little Lady from Detroit” who donated the cord blood that saved Jack’s life — THAT was the stone that started the ripples!!!!!!!
Trust, Trips, Texts and Dance Lessons
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
MAX 5/15/2021-2/6/2025
We adopted Max just three years ago. He had been fostered by a lovely Maplewood family. We went to their house to meet him and there was something about Max’s big ears and crooked smile that made us fall in … Continue reading
Meaning, Purpose, Connection
When I first meet with a client, I always share that creating a healthy life – not a life of rainbows and sunshine, but a life where we struggle less – is creating a life where we have meaning, purpose and connection.
Viktor Frankl, a Holocaust survivor and renowned psychiatrist, said, “Life is never made unbearable by circumstances, but only by lack of meaning and purpose.” I add connection to the list because without connection we’re simply floating solo on this journey.
Meaning is the why behind what we do. It’s the lens through which we view our existence. It represents our priorities and values. Purpose is the how we honor our meaning – it’s the what we do. Purpose gives life structure and motivation, keeping us moving in a positive direction towards our meaning — even during difficult times. Connection is the DUCT TAPE that holds us together. It’s the relationships we build, the communities we nurture, and the experiences that bring us closer to others. Connection allows us to collaborate, support, and celebrate alongside others, reinforcing our sense of belonging. And, our connections often help us to find our meaning and work towards our purpose.
These are some questions to get started:
- What experiences in your life have you found fulfilling?
- Which activities or causes make you feel like you are contributing to something bigger than yourself?
- What are your strengths and passions that can help others or contribute positively to the world?
- When do you reach out to friends and loved ones, not just when you need something, but simply to connect?
- What are the communities or groups that share your interests and values?
I just returned from this year’s ALD Connect Annual Meeting and Patient Learning Academy. All weekend I thought about meaning and purpose and connection. I thought about how meaning, purpose and connection have allowed me to survive – even thrive – following the diagnosis.
When you’re facing a complicated diagnosis like ALD, many find themselves caught up with concerns about their health and their future. It’s easy to get lost in a pile of what ifs and the cycle of daily routines, often leaving little time to reflect on what truly matters. We chase test results and tick off checklists, but without understanding what drives us, we risk feeling unfulfilled. Meaning, purpose and connection allow us new insights about what is truly important, gives us direction and motivation and provides us emotional support. It helps us take some power back and pay it forward.
17 ½ years ago ALD shattered our family. It took years to adjust to our new circumstances and appreciate the need for taking control of what we could. We couldn’t change our genes, but we could find meaning. We could move forward towards our purpose, and we could add to our connections.
I’ve said many times that ALD is a crappy/shitty/terrible disease, but the people are amazing. I want to thank the ALD community for allowing our family to find meaning and purpose and connection. I want to thank the ALD community for helping us struggle less.
Love, Jess
9497 days
Day +6277 (Transplant)
Day +9497 (Life)
9497 days ago we welcomed JackO into the world. I hadn’t been sure of many decisions in my life, but becoming a mom was a choice I made clearly, without hesitation. Being Jack’s mother (and Anna’s mom too, but today is about Jack) has been the greatest honor of my life. He’s taught me perspective and strength and determination and love.
And, I’m not alone. Our boy without words, is a gifted teacher.
Friends and family have asked what Jack would like for his birthday. Jack is hard to shop for — he’s a person who values things that aren’t things. He values music and dancing and sunsets and walks and family and friends and laughter and smiles.
So here’s a gift you can give to our boy — Please take a moment today to make someone in your life smile. This world needs more smiles. Do it in honor of Jack!
HaPpY 26th bIrThDaY JackO!!!!
Love, Momo
Accidents Happen
I was sitting in my office with a client on Monday when my phone vibrated. I ignored the first notification, but seconds later it vibrated again. And again. And again. I tried to be subtle as I glanced down and saw that my father had called twice, then my sister-in-law, then my brother.
I’ve never had to interrupt a client mid-session and paused as my brain scrambled to figure out what I should do. I was trying to listen to what my client was sharing, but my thoughts were busy trying to figure out what would cause my family to be reaching out in such a flurry.
AND where was Mymom?
I looked at the clock and realized that the session was nearing the 50-minute mark. I’m not sure if my clients realize that our sessions are only 50 minutes because I tend to allow them to linger until the buzzer rings indicating my next client has arrived. But, Monday at 12:49 I closed my folder and stood up, “I’m afraid that our time is up for today. We will need to finish this up next week”.
I texted my next client to say I may be late for our session and started reaching out to family. My dad didn’t answer. My mom didn’t answer. Then I saw a message from my dad on The Cappello Family chat.
Car accident in cab. Mymom is hurt.
Heading to the hospital. Will keep you posted.
The family calls started as we all tried to piece together what happened.
The short story is that Mymom was in a taxi heading to have lunch with a friend and the taxi plowed into the car in front of them, flying Mymom into the glass partition. She had cuts on her face, broken teeth and neck pain. Monday afternoon was a long one as we all waited for more information. I did finally speak with Mymom around 3 and was relieved when she seemed more focused on reminding me to wear a seatbelt than her injuries.
After seven hours in the ER, Mymom was able to get home. She has many stitches, broken teeth, and a small fracture in a vertebrae – not easy, but we’re all so grateful that it wasn’t worse.
I was speaking with a friend last weekend about the idea that hard experiences SHOULD somehow protect you from other hard experiences happening. That would be fair, right? But life isn’t fair. Nature isn’t fair. Accidents happen.
Always trying to learn from experiences, I’m trying to focus on the good that came out of this accident. Most importantly Mymom is okay, but I’m also reminded of what’s really important. There’s so much we can’t control, but we do have control over treasuring relationships that are important to us. We can control when we might need to wrap up a session a little early. AND we can control always remembering to put on our seatbelt.
So glad you are okay Mymom — we love you!
Love, Jess
How many years?
This morning I sat down at the computer to write. Not a progress note or a treatment plan or a worksheet to help folks introduce mindfulness into their lives. I sat down to write a post on this blog to … Continue reading
All Good
He’s fine.
Good as new.
All smiles.
These are the answers I’ve been giving all week as people have reached out. Social media spread the word that our boy landed in the hospital over the weekend and people were worried.
We were so confused that Dan and I didn’t really have much time to worry.
Over the last 6 weeks Jack’s had many sick days. Some cold symptoms, a few vomit days and random spiking fevers. We managed to keep everything under control thanks to stress dosing his steroids and over-the-counter medication. We did take him to the doctor’s office a couple of times and also visited the local urgent care, but nobody seemed particularly worried. They ruled out the usual suspects – COVID, Flu, Strep and finally prescribed a round of antibiotics which we gave him and it seemed to resolve whatever was going on.
Then Jack spiked another fever last Thursday. We called his doctor who asked us to come in for some bloodwork. The results led to a call no parent wants. We were told to go to the ER. Now. Something was wrong. We were told his white blood count was 32 — dangerously high.
Dan and I didn’t pause. I guess it’s some sort of muscle memory that takes over when you’ve been a hospital parent. We went to the ER, described his symptoms, and started educating everyone about ALD. They started running tests – bloodwork, urinalysis, x-ray, CAT scan. As the hours ticked by, the doctors ruled out a ton of things, but by the afternoon they all agreed that we needed to be admitted, “Just to be safe”.
By this point Jack was feeling great. His fever was gone, and he was really enjoying his time with doctors and nurses and a marathon of Friends. He didn’t seem the least bit upset by the news that we were being admitted. Dan and I were less than excited.
Sleeping in a chair is not something I’ve missed. Neither are the bells and whistles constantly signaling on a hospital floor. But, getting news over and over that test results were normal kept us together.
They sent us home on Saturday afternoon with no answers. The hope is that whatever it was self-resolved. We do have an appointment with an infectious disease doctor in a couple of weeks, just to be safe.
So Folks – Jack is fine. Good as new. All smiles.
And, please cross your fingers that I haven’t somehow jinxed us by writing this☺️🤞🫣🤞
Love, Jess
smiles and duct tape 