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
Category Archives: special needs 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
Do you want me to push you?
Next Thursday, January 30th, at 7 pm ALD Connect is hosting the monthly Mental Health Call where my friend/ALD hero, Emma, and I will lead a healthy discussion about the importance of communication within a caregiving relationship. Hoping to see many of our ALD Community next week, but I wanted to take the opportunity to share with all our Smiles and Duct Tape readers why we’ve chosen this topic.
Whether you’re an ALD family or not, there are many people who are part of a caregiving relationship — a caregiver or care receiver. Whether you’re caring/receiving care for/from your child or spouse or parent or sibling or friend — I want you to consider adding an important question to your communication, “Do you want me to push (help) you?”.
At the last ALD Connect Annual Meeting and Patient Learning Academy I had the pleasure of spending time with Laurie and Emma Hayes – two ALD folks I absolutely adore. They’re a mother/daughter duo who have always impressed me. Laurie, the mom, and is a symptomatic woman with ALD. Emma is her adult daughter.
Throughout the weekend I would hear Emma say the words, “Mom, do you want me to push you?” Repeatedly. Laurie would sometimes take the opportunity to be pushed around in her wheelchair and other times she would deny the help. She was in charge.
There was something powerful about witnessing this simple moment between a mother/daughter — care receiver/caregiver.
The question “Do you want me to push you?” symbolized more than just a literal action. It was recognition by Emma (the caregiver) of Laurie’s (the care receiver’s) autonomy, and it showed a commitment to working together. By asking and answering this question with honesty and openness, they were beautifully navigating their journey together with grace and understanding.
We all talked about this often overlooked part of a positive caregiving relationship. Receiving care can be a difficult thing for people to accept. It often involves coming to terms with one’s limitations. And providing care can also be challenging. Not only can it be exhausting, even messy, but without open communication a caregiver may do too little or too much. Without a conversation a caregiver may not appreciate the help their loved one needs. It’s easy to fall into the trap of doing too much, believing it’s the best way to help. Laurie shared the importance of caregivers to recognize that, although someone may require help with one thing doesn’t mean they need – or want – help with another. Overstepping boundaries can unintentionally undermine the care receiver’s confidence and independence. The key is to strike a balance—stepping in when help is needed while allowing the care receiver to maintain as much control as possible. Communication is the key.
The most successful caregiving relationships are built on mutual respect, trust, and open communication. Caregivers must remember that their role is to support, not to control. Care receivers, on the other hand, should embrace the partnership, acknowledging their caregiver’s efforts while maintaining their own sense of agency. Laurie is always quick to share how grateful she is for the help Emma provides. Another beautiful thing to witness.
As I’ve been preparing for this call I’ve been recognizing that, although Jack can’t speak and is far more dependent than Laurie, there is more I can do to allow Jack to have some control. Slowing down and allowing Jack to feed himself, walk independently, and choose between The Office and Impractical Jokers are how I’m asking him if he wants to be pushed. He seems to enjoy this small shift and is doing his part by thanking me with one of his beautiful smiles.
Hope to see many of you on Thursday (sorry, ALD required).
Love, Jess
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
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
ALD Family Weekend!
I realize I haven’t written in a while. Work is one excuse and we had JackO fighting a monster cold/flu thing for a couple of weeks. Luckily, he’s good as new. I promise to fill everyone in on everything JACK … Continue reading
Proud and Sad — Mostly PROUD
I got one of those Facebook memories yesterday morning. I almost scrolled by it — there was no picture to capture my attention — but then I glanced at the words.
11 years ago, I was worried (even sad) about Anna. It wasn’t fair that her life had been touched — sometimes torched — by what ALD had done to her brother. BUT I was so proud of her and how she approached her life.
Although her life was different than most of her peers, she had a pile of extraordinary friends who surrounded her with love and fun and were all amazing to Jack. She was already an exceptional student and athlete. And, even at 12, Anna had an independent streak that presented itself often. If she had a goal, she would make it happen — when she wanted to make some extra money, she found herself babysitting work and even organized (with dear Caroline) a lacrosse camp for some younger kids in town. She was a kid who would paint her own room. I believe middle school were the “Tiffany Blue” years.
But Dan and I DID worry about Anna back them. We would discuss if she was feeling too much pressure to achieve. Was she feeling that she needed to do enough to make up for what Jack couldn’t do? We wondered if her motivation and good attitude would continue.
They did.
I am NOT a believer in “everything happens for a reason” or “Life only gives you what you can handle”. I’ve witnessed too much tragedy to believe that nature is fair or that there is some sort of master plan that makes sense.
What I do believe in is the internal power we all have. The power to make choices. The power to lean into uncomfortable feeling and find hope during dark times. AND – if you’re Anna – you have the power to look a disease that has harmed someone you love and instead of cursing it, work to be a person that helps put an end to it.
Anna is not sure what she will specialize in, and we are NOT pressuring her to work in the ALD space – although we do discuss it . . . often. No matter what she decides to focus on, she will be amazing. We are so proud of our girl. Sometimes we worry (even still get sad), but we are always proud.
Love, Proud. Momo
smiles and duct tape 