stranger-friends

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We all have “friends” on social media who we don’t really know — let’s call them stranger-friends. They find their way to your feed through mutual friends or colleagues or common interests or whatever. I have over 1000 friends on Facebook and there’s nothing quite like a birthday to remind you of who’s on your page – friends from elementary school, high school, college, graduate school, mommyhood, the neighborhood, ALD, CCI, CPNJ, and on and on and on – including all those stranger-friends.

Sunday was my 48th birthday and I’ve spent much of the last couple of days reading through posts. Hundreds of posts and I’ve read each one. It’s amazing to pause from the chaos of the holiDAZE and think of all the people in your life (and on your computer). Birthday wishes are always fun and this year I feel blessed that I’ve managed to meet some of my stranger-friends in person.

Over the years, there has been a growing percentage of people in the ALD community on my Facebook feed. Many are people that I feel very close to because of shared experiences, but most of them have been stranger-friends — I’ve never met them in person — until this year. Thanks to Smiles and Duct Tape, I’ve had the opportunity to meet a lot of ALD folks – people living with it and/or fighting against it. This past weekend I had another chance to meet some of these people.

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My mother, Anna and I attended this year’s ALD Connect Annual Meeting. As soon as we arrived, I saw people I’ve only seen on my computer screen. And, these aren’t just regular people to me. Imagine meeting one of your heroes. Now, imagine meeting a room full of your heroes. THAT’S what it felt like.

People responsible for newborn screening for ALD, for raising funds for research, doctors dedicated to fighting our disease, biotech companies discovering new treatments, and piles of people living with ALD/AMN. And, there were the ALD moms – some have lost their boys, some are caring for them now, even one who has hope for her beautiful son thanks to newborn screening. All these names I’ve known, all these faces I recognized, all their stories that have helped me move forward — it was a little overwhelming, but deeply powerful.

For the first time since we were thrown into the world of Adrenoleukodystrophy, I feel like our family is connected to something bigger. I walked away from the meeting wanting to march on Washington and change legislation, start a foundation to raise money for ALD, go back and get my medical degree . . . I may do a few of those things over time, but I think for now my job is to share. Share what it’s like to live with ALD. Share what it’s like maintaining my family — trying not to be defined by the disease. Share what it’s like to be a normal, special family. So, I will continue to write and to all of my ALD friends and stranger-friends — just let me know when you need me to do some marching or raise some money. I’m guessing no one really thinks it’s a good idea for me to go to medical school;)

Thanksgiving is always a time of reflection. As I consider all the things I am grateful for, I’m adding being part of the ALD community. I hate ALD — I hate what it’s done to Jack, I hate what it’s done to so many families, BUT I do love the people I’ve met through our wicked disease. We can’t fight this monster alone and I am honored that our family is fighting with this group of strong/dedicated/brilliant people.

Happy Thanksgiving!!

Love, Jess

Please join me in taking a moment today to send a prayer/good vibes/happy thoughts to a woman who adored our kids. Jack and Anna called her MopMop, but most people knew her as Sharon O’Neill. Rest in peace.

 

back and forth and back and forth

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I survived my 30th high school reunion.

I’d been a little nervous about going, but the anxiety spilled away as soon as the festivities began. It started Friday afternoon with some of my oldest/bestest friends coming over for dinner. Getting to really catch up with this group of ladies was magic – as if the last 30 years never happened. I’m blessed with wonderful friends from every stage of my life, but I grew up with this crew. They feel more like family than friends. There’s something amazing about being with people who really knew you as a kid — knew your parents and siblings well, knew what your childhood home looked like, when you learned to ride your bike, when you got your first bra, when you had your first heartbreak, what you got on your SATS (don’t ask). We sat around the dinner table and talked and talked and talked.

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Lots of stories, laughs and glasses of wine later, we decided it was a genius idea to head from my house to our hometown to meet up with some of our old classmates. It’s been a while since I left my house at 11:00 pm to go out, but we were up for the adventure (and Uber go us there safely). Crazy to walk into a room full of high school friends and memories. Everyone dove right in sharing stories and people looked great. A few more gray hairs, but overall the Summit High School Class of 1987 is doing amazing — especially considering we’re all creeping towards the big 5 0.

The next day was more of the same. I went back and forth and back and forth between my family and reliving high school. I got a lot of quiet time with my close friends and crazy time with our graduating class. It was incredible getting to see so many people— hear so many stories.

I did get a little overwhelmed with a few conversations about our family. People who have followed Jack’s journey, but haven’t seen me in a while, seemed to be under the impression that I’m stronger than I am. Although I loved the support, it made me uncomfortable, so I did my best to break the spell. Two days and nights of acting like a teenager, and I think I proved that I really haven’t changed much from the Jesse Cappello from back in the day (for better or worse). I also did a whole lot of saying, “Jack is doing great! His life is complicated, but I promise he’s super happy! I’m doing great too! The whole family is great – super great!”

It was two VERY long days/nights – that’s all I could come up with.

It was an exhausting/incredible/crazy/fun weekend, and saying goodbye to my old friends on Sunday was tough — I really didn’t want the festivities to end. I brought Jack with me for my last round of back and forth. His smile always makes things a little easier. I also loved that my old friends got to spend some time with Jack this weekend and with Dan and Anna too (although Anna was kinda busy – we were pretending to be teenagers, but she’s an actual teenager). Being able to share my life with old friends was priceless, and I loved hearing about their lives – everyone has a story. We all walked away promising we would do it again soon. No need to wait for the 40th.

I spent the weekend going back and forth from pretending to be 18 to the reality of what 47 looks like for me. I grew up in Summit, NJ — only five miles from Maplewood, but it felt like a distance as I went back and forth all weekend. The towns are quite different and my life is too. Luckily, Dan eased the pain for me (my hero) and took the brunt of the weekend responsibilities, but there are always reminders that our lives are a little quirky. Warning friends not to sit on the “pee couch”, being a little late for the party because of a poop (not my own), having friends notice that, while I seem quite savvy at drinking, my son requires a tube in his belly to get hydrated.

BUT DON’T WORRY — Life is great. Jack is doing great! His life is complicated, but I promise he’s super happy! I’m doing great too! The whole family is great – super great!!

 

Love, Jess

 

Summit High School Class of 1987 – It was unreal seeing so many of you! I’m thinking we should make a “31st High School Reunion” a thing. And, we need to get the rest of the class there!!

 

music and memories

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Dan and I have never allowed our kids to choose the music. Not in the house and definitely not in the car. We don’t have the patience for what “kids these days” listen to and we love our own music too much. When Dan and I first started dating, there were arguments over James Taylor vs Jimi Hendrix (I love him, but not for lounging out) and Simon and Garfunkel vs Rush (Dan will NEVER win that argument), but we settled into a groove quickly and found that there is plenty of music we both love. Jack and Anna have grown up with the Dead and Son Volt and Steely Dan and REM and Elvis Costello and Joe Jackson and Tom Petty and Bob Dylan and and and and. Even now that the kids are older (and Jack is Jack), if you peek in our windows after dinner some nights, you might find us all dancing in the kitchen.

Music is part of our duct tape.

They say that smell is the sense that is most closely linked to memory, but there is something primal that happens when you hear a song that you love. Tangled Up in Blue and Forever Young make me stop what I’m doing and sing out loud (sorry) and I’ve found myself sitting in grocery store parking lots more than once with tears running down my face because of a song on the radio – Beautiful Boy gets me every time. Then there are the songs that remind you of a time in your life – American Pie while I played with my dolls in the basement on Mountain Avenue next to my mother on her sawing machine, Free Bird at my first middle school dance, Me and Bobby McGee blaring from the jukebox at Long John’s Bar during my college years, Hey Ya as life saving stem cells went into my son’s veins in 2007.

As a teenager, my friends and I would make each other mixed tapes with our favorite music. We would send them to each other when we were in college – better than brownies. And, a mixed tape from a guy was way better than flowers or jewelry. It said so much about who they were and what they thought of you. I still have a pile of tapes in my box of memories. I’ll never part with them.

Dan’s love of music is fierce. His album collection is his most prized possession. A few years ago I made four large wall hangings – each with 15 of his favorite album covers. My plan was to hang them in his office, but they quickly found their way downstairs. We like to be surrounded by music.

Jack and Anna are a little older now and have their opinions. Jack found One Direction on his own, and if you play him just a second of one of their songs, he will shoot out of his seat and jump up and down. And, Anna’s room is always loud with music and some of it is lame, but I’m happy to report that much of it is familiar.

Anna got her driver’s license last month and we gave her Dan’s old car. She’s made it her own with new bumpers stickers and snacks in the glovebox. She also changed the radio stations. I can’t say that I approve of all of them, but I noticed last week that Tom Petty Radio was saved on channel one. All I could think was that we’d had done a pretty good job raising her.

This week has been horrific. My heart goes out to all the families/friends of those who lived through the horror and those who died in Las Vegas Sunday night (when is this going to end folks?). Mexico, Puerto Rico, Las Vegas — Watching the news has become so difficult the last few days, that I find myself avoiding television and leaning on music for entertainment. And, music isn’t safe either.

We’ve lost a lot of legends the last year. Just to name a few: Prince, George Michael, Glenn Frey, David Bowie, Gregg Allman, and now – Tom Petty. Anna was the first person I called when I heard the news that he had died. I heard Petty coming from her room last night as I went to bed and I played a lot of his music yesterday. Many of his songs hold some wonderful memories.

That high school reunion I talked about a couple of weeks ago is this weekend. I forgot to lose the five pounds and don’t really have the perfect outfit, but I am looking forward to it. I think seeing some old friends, laughing about old times and listening to good music sounds pretty darn awesome.

Love, Jess

“It’s sort of hope amongst the ruins, I think. To me we’re all in the great wide open. I think life is pretty wild; I really want to like the world, but at the same time I have to write about what I see.” (Tom Petty 1991)

 

 

30 years later

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My 30th High School reunion is coming up and I’ve been a little nervous about going. As I watch the stream of old photos get posted on the SHS Reunion Facebook page, I can’t help but be apprehensive. I keep looking at the photos thinking about who I was thirty years ago, who I am now, and where I thought I would be.

I’m guessing/hoping that I’m not alone.

It’s not that I’m ashamed of who I was during my high school years, it’s just that I am not particularly proud. I never felt like I had a real “roll”. I did have a group of amazing girlfriends (many still close friends), but I never felt like a star student or a dedicated athlete or a talented artist — and that was one of the few things I was kinda good at. I was a solid C+ across the board.

Maybe no one really felt completely confident in high school. Maybe everyone cringes when they think of themselves as a teenager. But, when I look at the old pictures being posted on Facebook, there are a few faces that not only always looked happy with who they were, but they seemed to own the room. I look at the pictures of me and, maybe to the untrained eye you can’t see the insecurity in my 16 year-old smile, but it screams out to me now.

And, it’s not just who I was in high school that has me uncomfortable about this reunion, it’s who I am now. At our 20th reunion Jack was just out of the hospital following his stem cell transplant. That reunion was a blur (and not just because of the wine). I didn’t know what to say when people asked what I was doing with my life.

“Married, two kids, live in Maplewood, still work on my photography. Oh, and my son has a disease called Adrenoleukodystrophy. He just got out of the hospital where we’ve been living for two and a half months. I know how to change a g-tube and hook up an IV.”

Trust me – I got a lot of awkward hugs that night.

Today, I’m more comfortable in my new life and know how to share answers to “What are you up to these days?” in a way that makes people comfortable. Or, as comfortable as you can make them (sometimes it backfires – stories about a 19 year-old’s potty habits aren’t always a hit). Even with my new found confidence, I’m nervous about walking into a room full of people with memories of teenage Jesse Cappello and questions about middle-age Jesse Torrey.

 

I know some of my old friends are feeling the same way. Facing a room full of your childhood can be intimidating. It’s not just that you worry about how people will react to who you were in high school and who you are now, but it can get you thinking about who you thought you would be thirty years later – what your story would be. Things as shallow as what you would look like and what you would drive and things far deeper like what you would have accomplished and what you would have done to better yourself/others/the world.

Reunions have us all looking in the mirror, but maybe that’s a good thing. Everyone has a story. Perhaps it’s good for all of us to go back sometimes and evaluate who we were and who we’ve become, even if it means we need to swallow hard along the way.

So, I’m going to the reunion. I hope I come back with no regrets. Grateful for spending time with old friends and having relived some old memories. Maybe even have made some new ones.

Love, Jess

I have a hair appointment scheduled for next week. I may not have the best answers to “What’s going on with you these days?”, but at least I can cover the gray.

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Friends

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Imagine having a friend who has never heard your voice. A person who you admire and look up to AND feel so comfortable with that you can laugh until you pee. A person who knows you so well that they can order lunch for you, and always choose the right movie to match your mood.

Imagine having a friend who doesn’t shout when you change their radio station without asking. A friend whose hand you can grab when you need some support and whose face you can lick in public.

Jack has a friend like that. His name is Peter. Peter and Jack have known each other since PG Chambers School days and they continue to have dates every couple of weeks to go to the movies or grab a cupcake at The Able Baker. And, when they’re not doing anything big, they sit, listen to music and enjoy each others company. All without Jack ever saying a word.

Peter is getting married today to his beautiful fiancé, Orla. Jack has been there from the beginning of their relationship and has watched as it has blossomed. I suspect Jack has heard more of their love story than Peter has shared with most people – Jack’s a good listener and he’s fantastic at keeping secrets.

Peter – Today is going to be a beautiful day. Thank you for including us and thank you for being such an incredible friend to our boy!!

Orla – Welcome to the family. Today you don’t just marry Peter, you gain an extra brother-in-law!!

Cheers, Jess

Ten Years and Counting . . . Special Thanks to the Little Lady from Detroit

I’ve been trying to find the right words, but I’m at a loss. There are no words to really describe how we feel today. I’ll keep this post short and sweet.

Ten years ago we put our son’s life in the hands of doctors and donors and maybe even a higher power (I know, I know – I have a terrible relationship with God, but I’m working on it). Ten years ago we didn’t know of any boys who were ten years post transplant for ALD. We didn’t know if there was a chance that Jack would reach this milestone.

Jack has reached this day – HIS TENTH TRANSPLANT BIRTHDAY – and I fully expect he will exceed every dream we’ve ever had for him. He’s just that kind of kid. He’s a silent boy who speaks.

We had a party this weekend to celebrate our boy. We filled our yard with greasy food and many of Jacko’s favorite people. Jack spent the day hugging, and dancing and enjoying every second.

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Please take a moment today and think about our boy. Think about how amazing life can be.

Happy Birthday JackO!!!

Love, Jess

In honor of Jack’s TRANSPLANT BIRTHDAY we asked people to make donations to Boxes of Fun and Horizon High School. Over $2800 was raised for his school and have a HUGE pile of toys for the Boxes of Fun. Our duct tape is amazing!

 

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FYI – “The Little Lady from Detroit” was Jack’s donor;)

A Room Full of Duct Tape

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

When “Thank you” isn’t enough – THANK YOU!!!!!

I hope everyone had a great Thanksgiving. Four days on Block Island in a house full of family, has us all feeling super grateful (and maybe a little exhausted). All things considered, we are one lucky family!

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The support our family has received over the last ten years has been amazing and with the release of Smiles and Duct Tape, it’s all been magnified. I’ve been receiving notes for the last two weeks from friends and family and strangers who have stumbled on the book. I’m so touched by the kind words and thrilled that the book is finding an audience.

The words “thank you” aren’t really enough, but THANK YOU!!!

If you are local, please join our family at WORDS for a reading/signing/Q&A this Thursday, December 1 at 7:30. I can’t promise that I won’t be super nervous (and I will definitely end up in tears at some point), but at least I can THANK YOU in person.

Love, Jess

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What I realized while in Paris

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Sitting at a dinner table in the heart of Paris I watched my mother and daughter debate everything from single-sex college dorms to the definition of rape. Suddenly it occurred to me that I was watching two extraordinary women. Two of my closest friends.

I’ve always been close to my mother – first as a daughter and then as a friend. I remember when our relationship turned from mother/daughter to friend/friend. I was older than Anna. I needed to be older than Anna. I needed guidance well into my twenties (okay – I still need guidance, but my mother is much better at slipping her advice into polite conversation – usually).

It’s strange when your mother becomes your friend because she becomes human. She’s no longer the person behind a curtain who you fear but can’t really see. This new person makes mistakes and bad decisions (not you, Mymom – I’m just trying to describe most mothers). She goes from telling you what to do, to what she did and how she learned. This women asks you for advice and helps you without needing to take over. I loved when our relationship switched, but I was an adult when my mother’s curtain fell. My curtain seemed to fall off without me even noticing.

Anna learned early in life that I am human. I blame ALD for the weakened grip on my motherhood curtain. ALD has a way of stripping down resilience. Too much energy is taken with worry and late nights. It been quite a while since I was careful with my answers to even the most “adult” questions and I’m certainly not great at hiding four-letter words or less-than-perfect mother behavior. Fortunately, Anna has always loved me unconditionally and she seems to know which of her mother’s characteristics to emulate and which to stay away from . . . She has grown into a remarkable young woman. Anna’s not just a good student, but she’s smart – not always the same thing. And, she’s funny and kind. I’ve known all this for a while, but in Paris while sitting at the dinner table covered with a thin white tablecloth, I gained an appreciation that she has also become incredibly self-assured and well-spoken. Watching her with my mother, debating rather inappropriate topics for a sixteen-year-old and her grandmother, I thought WOW I want to be just like Anna when I grow up.

Anna and I have talked about going to Paris since she was a little girl – a girl’s trip to celebrate her sweet-sixteen. We invited all the women in the family to join us, but life is complicated for everyone and Mymom was the only taker. As disappointed as we were not to have the whole crew, it was lovely to have just the three of us on this adventure. Museums, long walks through the city, elegant meals, even a Segway tour (don’t ask Mymom about it – she’s still recovering). It was all perfection, but my favorite part was watching these two people that I adore debating each night at dinner. I came from one and created the other. Nothing is more amazing than that.

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This week has been busy with Smiles and Duct Tape getting out there. I’ve been distracted with marketing strategies and thank yous and begging for reviews on Amazon (not that I am doing that here), but I keep thinking about our magical weekend in Paris. I have two such strong, impressive (opinionated) women in my life. Lucky me.

Love, Jess

PS Anna still has a curfew. She might be mature and amazing, but she’s still only sixteen.

I’m gonna say it. It’s not appropriate or good parenting by any stretch. I can’t believe I am going to put this in writing, but her it goes — my daughter is my best friend.

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Thank yous and big news.

Jack would like to thank everyone for all of his birthday wishes. He had an amazing day and, in typical Torrey style, he’s planning on celebrating all month!!

 

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We’ve had other exciting news here on Clinton Avenue and I’m finally ready to share it. Drum roll please . . .

Smiles and Duct Tape THE BOOK is going to be released this fall. I’ve been working on the project for over five years and I can’t believe that the finish-line is approaching. I received my edits from the publisher last week and we’re busy sorting out the details about the cover art. Holy smokes – this is really happening! I’m honored and excited and a whole lot of scared.

What happens when your world falls apart? Do you simply lay down and take the blows, or do you try to figure out a new way of living? When our son, Jack, was first diagnosed with a rare disease, I wasn’t sure that our family would survive. And, once we realized that life would never return to “normal”, I questioned if it was realistic to strive for ever really being happy again. It took us a while, but thanks to the help of our friends, family, doctors, teachers, neighbors, and a lot of smiles, we managed to mend our family. It’s like we’re held together with duct tape – not pretty, but super strong.

We don’t have the release date yet, but I’m hoping that everyone will have a great go-to gift idea for the holidays. Who doesn’t want a memoir about a ALD family for the holidays?

Love, Jess