Category Archives: Uncategorized

Proud and Sad — Mostly PROUD

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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

2024 — It’s complicated

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2023 was a year.

I can’t call it bad or good. There was loss — deep loss that I still can’t truly wrap my brain around (and just last week, we lost another beautiful human who was taken too soon). We’ve also had some other tough challenges, but I always try to focus on the positive and there were some glorious positives.

Anna started medical school at her top choice. The added benefit of having her return to the tri-state is a bonus that we all cherish. Jack enjoyed his new routine where he gets added time with his other mothers and their families. Dan is still in the crypto world and has been on an incredible health journey that has us all motivated to follow suite. My work has taken off and I’m grateful for being trusted to do the work that I’m doing. We also travelled – between the 4 of us NJ Torreys we had adventures in Block Island, Colorado, Tennessee, Massachusetts, Puerto Rico, California, Seattle, Canada, Texas, Maine, and Florida.

As we rang in the new year, we cheered, but we also recognized that welcoming a new year is complicated. 

There’s plenty to worry about for 2024 – Our home always has concerns about health, and we have some friends and family struggling with their own list of concerns. Then there is the upcoming election, unrest around the world, and our planet showing signs of an unhealthy lifestyle.           

BUT there’s also a lot of potential beauty upcoming for 2024. My work will continue to grow, and I’m excited about adding more training (EMDR is on the calendar). Dan will continue to be our role model for health and wellness. Anna will learn even more about things that I will never be able to understand . . . or spell . . . or pronounce. JackO will charm more folks and laugh at more jokes. We have trips planned to Mexico, Austria and Croatia. AND our country could make some wonderful choices, tensions around the world could ease, wars may end. 

I choose to be hopeful.

As we welcome this new year, I hope that you are all ready for some new adventures, exciting challenges, quality time with people you love AND hoping you also choose to be hopeful.

HaPpY NeW yEaR!!!!

Love, Jess

a little ALD

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MAPLEWOODSTOCK 2022!!! Thank you Jill for the photo — and for being you!!!!

This morning I asked Dan a question – “Did you find walking around this weekend challenging?”

“What do you mean?”

That was not the answer I’d hoped for. We spend this weekend enjoying one of our community’s favorite annual-except-when-there-is-a-global-pandemic events – MAPLEWOODSTOCK. It’s been three years since we’ve been able to attend this weekend full of live music and food and vendors. It was a picture-perfect weekend weather-wize and wonderful to see so many old friends and neighbors, but the whole time I was there I felt like I needed to be aware — aware of where the closest porta potties were and how I was going to manage getting around.

To me, crowds = confusion, and crowds with blankets and coolers and lawn chairs is a full-blown obstacle course. Add a bladder that is always in need of attention, I was up and down from my lawn chair countless times and then needed to wandered through the maze of frolicking folks trying to watch my feet, not bump into anyone or trip over anything.

People were sweet. Assuming I was just another middle-aged lady who had enjoyed one to many High Noons, they helped to guide me while saying things like, “Don’t forget to drink a little water”. But I wasn’t drunk. I wasn’t high. I was just dealing with a little ALD.

When Jack was first diagnosed with ALD, it was determined that he got the gene from me. I was told that unless I was planning to have more children, I wouldn’t need to worry much about my health — ALD is an x-linked disease — I was “just a carrier”. As the years moved forward and I learned more about ALD (and the medical community caught up to reality), it became clear that it is more complicated for women than “just being a carrier”. Women with ALD often do develop symptoms. VERY different than the symptoms associated with the childhood, cerebral phenotype that Jack faced, but symptoms that can affect your life in a variety of ways. Bladder/bowel issues are common for most women with ALD past a certain age and mobility issues are also common. Balance and neuropathy are the culprits.

When asked about my symptoms, I usually answer, “Mild. A few embarrassing bladder stories under my belt and more falls then a typical 52-year-old women, but nothing too significant”.  That is true. My symptoms while at times embarrassing, do not impact my quality of life (much). I try to not focus on the negative or on the what ifs (if Dan is reading this, he’s laughing right now – he may argue about this point). I’ve learned to adapt to my symptoms — I wear flat shoes, keep an eye on my feet when they are moving and always know where the closest bathroom is.

Mostly I don’t worry about my ALD, but this weekend I felt like ALD was ruining my fun.

Jack and I left MAPLEWOODSTOCK early, sharing with our friends that it was better if we left before it got dark, “It’s hard for Jack to maneuver through crowds in the dark”. THAT wasn’t a lie, but there was more to our early departure. I was worried. I was worried that I might get trapped in the maze of coolers and lawn chairs if I couldn’t see exactly where my feet were landing. I was worried that trying to guide Jack out of the chaos in the dark could be more than I could handle. I was worried that I might not get to the porty potty station on time if my bladder gave me one of my “you have exactly three minutes until I will release” moments. 

None of this is the end of the world. I’m not complaining as much as I’m sharing my frustration. AND I’m wondering if anyone else can relate.

Love, Jess

It was time

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We did something last night that needed to be done. We’ve discussed it as a family for months but were waiting until we were all on the same page. After enjoying a great holiday, we figured we could handle anything. Everything else we had tried hadn’t been working and it was starting to look really bad. It was time. Besides, we needed Anna to be here. She’s not just our family cheerleader, but she’s our family barber.

We shaved Jack’s head last night. His hair has been thinning for a couple of years and there was no magic shampoo or haircut that could hide it anymore. Anna kept reminding us that “bald is beautiful” and showing us photos of handsome men with a “clean look”. Our hesitation had nothing to do with not liking a bald look, it was that we have seen Jack bald before and those are days that we don’t want to remember.

But Jack is NOT sick. I like to blame ALD for most things, but there are other genes lurking in my family tree that might be at work. It was time.

When I walked into Jack’s room this morning, I did need to make sure that I had plastered a believable smile on my face. It’s going to take me a minute to get used to his new look. Change is tough — but he looks very handsome – just different.

Who knows – this shave might be a reset for his hair follicles, and Jack could return to needing shampoo, but for now he is bald and beautiful!! AND, he is in need of some new winter hats!!!

Love, Jess

THIS was a holiday!!!!

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Last year we went to my parents’ house in Tuxedo Park for Thanksgiving. It was just the six of us humans and three dogs – Keegan was still with us. We had a great day, but it didn’t quite feel like a holiday. This year we filled our house. Torreys, Perrys, Cappellos, Palets – 21 people and 5 dogs!!! 

There was food in the oven, on the stove, on the grill — even in the toaster. We had mattresses everywhere and used a beer pong table as an extra table. We needed our extra fridge for food, so our patio was filled with beer, wine and soda. I kept encouraging people to go take a nice walk in the reservation while I got things ready, but then more people would wander into the kitchen. Dan played music a little too loud and we played dice until later than we should have.

THIS was a holiday!! I hope everyone else experienced some chaos yesterday and is enjoying some delicious leftovers today!!!!

Happy Thanksgiving!!!!

Love, Jess

HaPpY 14th Transplant Birthday!

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14 Years . . . Day + 5113 . . .

It’s Jack’s 14th Transplant BiRtHdAy!!!! 14 years since he received the magic cells from the Little Lady from Detroit that would stop the progression of ALD and allow us to not just continue enjoying life with Jack, but appreciate his wisdom and strength. He’s the greatest teacher I’ve ever had and I know he’s the same impact on everyone lucky enough to cross his path.

Here are some sweet words from his family about our boy. PLEASE add a comment about what Jack means to you.

He’s got moves like Jagger. – Dan

He’s a loud, silent human. I love my Booger – Anna

In an age where we’re all on our devices, Jack is living in the moment and loving it. – Aunt April

Yesterday is history, tomorrow is a mystery, and the present is the gift Jack gives us. – Love Aunt Darcy (with help for Eleanor Roosevelt)

We all so remember this day 14 years ago when Jack stayed so calm and so brave as the the Little Last from Detroit came into him and started to do her magic. He smiled back at all the people standing and applauding in his room. What wonderful advantage we all have been able to take from that gift. Jack has been our leader and hero every moment of the way. —  Nonno and Mymom

A quiet guy with a big personality. – Uncle Phil

We both always feel so good around Jack and feel his presence and happy demeanor. He is a gift that makes us all better people. — Love, PopPop and Nanna Sue

A man of few words who says a lot especially with his laughs and smiles. – Aunt Kate

Jack is just a light soul and a whole lot of laughter and smiles. He is also a great dance partner. – Other Mother Orla

Jack is engaged. People think not speaking would isolate him, but it sure doesn’t. – Mymom

Absolutely famntastic! The best friend anyone could ask for. Empathetic, funny, charming. – Other Father Peter

As my grandson and my inspiration as a valiant and brave guy always ready to replace difficulties and tragedy with a laugh. – Nonno

Jack is the best human being ever, my inspiration in life! – Other Mother Lilly

Jack is pure love! The most beautiful soul I have ever met. He means kindness, friendship, strength and sensitivity with a resilient heart. Jack is an example of how to live life with grace and joy no matter the adversities. – Other Mother Monica

Jack is an amazing young man who loves a good laugh more than anyone I know! – Uncle Matt

Once upon a time there was “a Iittle girl from Detroit” who would forever change a little boy by the name of Jack Torrey’s life!  Her gift to Jack has inspired so many and has given Jack the opportunity to be the awesome dude he is – a smile like no other and an awesome sense of humor to boot! – Love Aunt Kim

Jack’s journey shows that happiness and love can win. Jack still has the same attachment he always did. — Uncle Pablo

Our family can’t describe in words what Jacko means to us. He has completed our family. We love him so much. — Other Mother Maria and Family

Time is always a odd when it comes to remembering defining milestones. We will never forget that day in room 505, but it feels like both yesterday and a million years ago. We remember every detail of the anxiety and energy and hope and smell (stem cells smell terrible — who knew?) in the room when the life-saving cells went into Jacks’s body. It’s the day that we saved our son’s life with the help of countless doctors and nurses AND a family that donated precious cells, never knowing that they were going to give the gift of Jack to so many.

Thank you to the mother of the Little Lady from Detroit! Your gift didn’t just save Jack’s life, it changed the lives of many!!

Love, Jess

RIP Keegan

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Keegan on Block Island last weekend

We said goodbye to Keegan yesterday. I owe him some beautiful words, but I can’t find them and it’s hard to write through my tears. All I can say is that we will miss him with every inch of our hearts.

Rest In Peace beautiful soul. I know you are running around right now and enjoying endless bacon and belly rubs. Don’t let Finn steal your fun.

Love, Jess

Day +5000 (a post from Dan/Dad)

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Day 5000


Lately I’ve been distracted.  Distracted by the lousy weather outside the window.  The cold.  The grey sky.  The snow piling up… Distracted by the inane MTG politico drama playing out on TV every day and night…  Distracted by work stuff ( I just started a new job this week).  Work can sometimes be a positive and useful distraction – especially when living through the first 12 months of a pandemic (Yes, we are now in our 12th month…).  But at the end of the day, it is still a DISTRACTION.   


Sometimes the only part of the day when things come into focus, when my mind clears, when I shed all the distractions is when I get a giant hug from Jack.  It’s the best part of my day – every day. 

 
Even if you haven’t spent a lot of time with Jack, you know that he is non-verbal.  But you probably can’t fully understand how he communicates most directly and most effectively.  It’s when he gives you a hug.  He is extremely strong.  He will literally squeeze the breath right out of your chest.  It’s the best feeling in the world.  It’s when I regain all perspective — as I squeeze back! 


Today is Day 5000 in the Torrey house.  It’s been 5000 days since Jack received his stem-cell transplant in May 2007.  Since the doctors at Columbia Presbyterian Hospital saved my son’s life.  5000 days of a wonderful life.  5000 days of smiles and belly laughs and hugs and dancing to 70’s tunes.  5000 days of watching him and his baby sister grow up to be adults.  5000 days of “our normal life” with Jack.  


Think about what has happened in your life over the last 5000 days.  It’s hard to grasp all the changes, the good and the bad, the ups and downs,  the mundane and the thrilling, Hell, some days I can barely remember life before COVID.  But Jack and his hugs help me remember what is really important in life.  Not the distractions.  That’s nothing but a lot of noise.


Thank you Jack for being in my life. 


Love,
Dad 

4999 Days

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Day +4999 . . . 

4999 days since Jack received the stem cells that saved his life. 4999 days ago we never could have imaged what our lives would look like now. And if we had, I’m not sure that we would have thought that we could embrace lives that look like this. 

A few days ago incredible members of our ALD community lost their son. It wasn’t ALD that ended the life of this beautiful young man, but an accident. We’ve known many people who have lost loved ones this year. Not ALD, but COVID, cancer, heart attacks. Life is complicated and fragile and we need to appreciate every day. Our family is grateful for the last 4999 days and will treasure each day ahead of us.

I’ve been writing tiny love stories for the last couple of months. The New York Times keeps passing 😏, but I’ll share what I wrote last week. 

I open the door that separates our rooms and look at him lying there. The most beautiful face I’ve ever seen. As if in a trance, I crawl into bed next to him, trying to be careful. His bed is littered with complication. I slowly take his hand and place it between my own. I hold my face against his and I linger over his sour breath. There is always so much I want to tell him and sometimes wonder when we’ll run out of time. Tonight I will just be quiet and enjoy the moment with my beautiful boy. 

4999 days.

Love, Jess

PS Stay tuned — Dan is working on a post for tomorrow.

Banana is 20!

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Today is Anna’s 20th birthday. Like so many people, she isn’t celebrating it the way she had planned. Anna loves her birthday almost as much as I do, and she has been talking about her birthday plans since last June. Piles of her Hopkins crew would fill our house and then her childhood friends would join in and fill the yard and pool. Driving the neighbors crazy was really the only thing we worried about until COVID arrived. 

We modified the plan and then modified it again. Now we are hoping that the weather holds so that a few of her friends can come for some from a distance/Purell-filled fun in the pool. If that doesn’t work ,out at least she can celebrate with her three biggest fans – me, Dan and Jack.

The last four months have been filled with cancelled plans and profoundly adapting everything else. It wasn’t just her birthday, Anna’s entire summer has been altered. She was going to be waitressing here in town and then working in NYC with a doctor who works with children with neurological disorders (specifically Leukodystrophies). The waitressing job disappeared and then Anna got word that the hospital where she was doing her internship was only allowing “essential staff” on premises. Luckily the doctor was willing to adapt his plans and Anna is spending hours a day in her room working on a project that I don’t really understand, but she finds fascinating.

Anna has also found a job with the Department of Developmental Disabilities working with a handsome young man with special needs — Jack. She has hikes planned and has already been working on swimming lessons for our boy. Jack has had a lot of caregivers over the years, but I can say, without a doubt, that he has found his new favorite. And, for Anna, it is incredible to actually be getting paid for something she has always done without complaint. She adores spending time with her brother. She is a truly special — special sibling.

Anna is such a special young woman and I’ve always been proud of her heart and brain and determination, but COVID has shown me another quality she has that I appreciate. Anna is able to adapt. Our family tends to be “glass half full” people, but Anna seems to look at every glass as over-flowing.

Love you Banana and hope that you enjoy your quiet(ish) birthday!!! It may not be the birthday party of the year, but we promise that when the dust settles, we will P-A-R-T-Y!!

Love, Mom

PS As I have been writing this, I’ve been seeing friends sneak through the backyard gate. I need to go out there and start screaming, “Six Feet!!” and “Purell!!!”.