newborn screening (can’t think of a clever title)

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This image was taken two years before we heard the word Adrenoleukodystophy.

Last week I had the pleasure of attending an ALD meeting. It was one of the most incredible days of my life. I’ve never been in a room full of people who understand our disease before. They all had stories. Many were parents who had lost their boys. Some, like me, have a son who has suffered and is living a complicated life (some lived through both). And, there were two young men who had been treated early – both in their twenties now and both doing well – exceptionally well. They sat across from me and I couldn’t stop watching them and smiling – they’re the future of our disease.

I hate ALD. I hate what it’s done to Jack. I hate what it’s done to our family. I hate that I open my Facebook feed some days and read about another boy suffering from this disease or losing his battle after fighting for years (or months). It’s brutal.

The only possibility of getting good outcome with ALD is an early diagnosis. Until recently, the only way to know that you carried the ALD mutation without displaying symptoms, was if you were “lucky” enough to have a family member diagnosed with the dreaded disease. In the case of the two young men I met last week, each had an older brother with ALD. Each of these young men had watched as their older brothers tackled the disease without any treatment. Both of their brothers died – their greatest legacy was saving their sibling.

I can’t really imagine what these families went through — caring for and then mourning one son as they moved forward with treating another. And these were early days. They were pioneers in the treatment that is now standard for ALD boys – stem cell transplant (and if you’ve been keeping up with the news about gene therapy, THAT might be changing). Because of their brothers, they were each diagnosed early and monitored yearly. As soon as there was one hint of the disease becoming active, they were treated. Transplants were a new way of treating the disease and their parents moved forward, taking advantage of the only hope possible.

Ten years ago we received Jack’s diagnosis. We had never heard the word Adrenoleukodystrophy before that day. We didn’t have the luxury of knowing and watching and preparing. We wasted time with misdiagnosis after misdiagnosis. We watched Jack lose abilities quickly, without knowing what was happening. Finally, just before Jack’s ninth birthday we were given the news and he had his transplant the following month. The transplant worked and it stopped the disease, but Jack’s life is forever tainted by ALD.

I’ve found it difficult being part of our community where Jack – with such a complicated life – is a “good outcome”. Most of the people I’ve come to know with ALD have suffered more, lost more, many have died.

Meeting Mitch and Jon – they said I could use their names – was incredible. Of corse there was a little voice inside me wishing that our family had had some warning. If we had known that the mutation was lurking in Jack’s DNA, we would have watched him through blood work and MRIs and he would have had a transplant a year or two earlier. It’s more than likely that he would be living a very typical life today had we known. He’d probably be in college now. Maybe he would have joined me last week and he would have hung out with Mitch and Jon sharing stories and laughs (FYI – all ALD boys seem to share an awesome sense of humor).

Why am I sharing this? Because there’s no reason for a late diagnosis. It’s possible today to test newborns by including ALD in the newborn screening that is already in place checking for other serious conditions. Several states have passed newborn screening for ALD and many are on their way. I encourage all of you to do your part to make this happen.

I’ve known that newborn screening for ALD had potential for saving lives and avoiding suffering, but meeting Mitch and Jon confirmed the success of early diagnosis and gave me hope that the future is bright for our ugly, wicked, crappy disease.

Love, Jess

 

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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)

 

 

lucky mom

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Every weekday morning, Anna races downstairs making sure she gets a chance to give her Boogie* a hug before his bus arrives. It makes my heart melt. No matter what’s going on in our family, our country, or the planet, I try to pause and enjoy the love that these kids have for each other. Siblings/best friends – the strongest bond I’ve ever witnessed. I’m a lucky mom.

That is all.

Love, Jess

* Jack AKA Boogie, Boogie Brown, Boogs, Boogs McGee, JackO, WackO, The Weasel

 

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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Progress? This might be the key(board)

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Jack’s progress doesn’t always follow a straight path. Brain injuries are complicated, and sometimes things move forward and then backward. Sometimes even sideways. It’s only after months of consistency with something new, that we feel comfortable that it’s here to stay. Perhaps that’s why I waited to share this story. But just this week I was given more proof that Jack has found a new skill. Typing.

I will start at the beginning.

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Jack has been using an app called Proloquo2Go for 6 years. It’s a communication program that uses words and symbols that when touched, speak for him. Every speech therapist Jack’s had since he has gotten the app has been excited by the possibilities and worked with it hoping to make communication easier for our boy. Each therapist has played with the format on Proloquo2Go —making words/symbols bigger on each page, making words/symbols smaller again, limiting the amount of information, increasing the amount of information, etc.

There’s always hope, and there have been times over the years that we have seen some improvement, particularly at school (like all kids, Jack does more at school than at home). Although there have been some successes, I’ve never been 100% convinced that his “successes” haven’t been a little guided. When Jack uses his iPad he needs someone to support his elbow — it helps with accuracy. I’ve always worried that his guides might be guiding more than they realize. Like when you use a Ouija board and subconsciously you direct the movement (unless the spirits are really sending subtle notes like GET OUT to every teenager who has ever played with a Ouija board).

This summer, Jack’s speech therapist added a keyboard page to the Proloquo2Go mix. I thought she was reaching a little. If Jack can’t consistently articulate a sentence when given entire words, then how could he manage to type in a whole word? But, instead of arguing, I said what I usually do to his eager, optimistic team, “THAT sounds awesome!”

All summer both Jack’s aide, Monica, and his therapists swore that they were seeing improvement, but I didn’t pay much attention. Until . . .

Last month, Monica took Jack on an adventure to pick something out for his birthday. As they wandered through the mall to find the perfect gift, they walked into a store that had a large selection of socks. Socks are the new cool thing for teenage boys, and Jack seemed excited to take a look. He searched through the rack of socks before grabbing a pair that had a pattern with something that Monica didn’t recognize. She said, “Jack, do you know what that is?”

Jack smiled and nodded his head so Monica took out his iPad and asked him to spell out the word. This is what he wrote:

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Marijuana has helped Jack so much for the last year and now it’s helping prove to the rest of us that Jack’s progress is real!

I loved this story, but I tried not to get too excited. At home, Jack focuses very little on the keyboard page on Proloquo2Go and more on the I’M HUGRY and I LOVE YOU buttons (that’s a good one). I’ve been waiting for more proof that the keyboard might really be the key to something. I finally got some proof this week. Jack’s speech therapist sent me a note sharing with me that she was telling Jack a joke and handed him his iPad for a response. Jack typed “LOL”. Maybe not as impressive as “mariguana”, but I will take it!

Love, Jess

* Monica is not just Jack’s aide. She’s his school mom and my dear friend. And Caitlin is Jack’s therapist who cracks jokes and makes magic happen.

* Okay folks – laugh all you want. I know that it’s funny that MY son has taken up  a hobby that involves spelling. I’ve confused pallets with platelets and angels with angles and wander with wonder. I’ve never claimed to be a good speller and apparently Jack hasn’t perfected it either – but we both get our point across.

 

 

 

Thrown Back into Reality

As if leaving Block Island isn’t hard enough, we had a doozy of a ferry ride home on Sunday. Within a few minutes of leaving the dock, the boat was pitching frantically over the angry ocean and water was pouring in the open windows. Then, the vomiting started. At one point Keegan’s leash slipped out of Anna’s hand and he slid across the width of the ferry. Fifteen minutes into the hell, a young man next to us took his head out of a garbage can to announced, “We have 45 more minutes of this.”

We had known that it was likely to be a rough ride. Our friends had left the island an hour earlier and reported back that their journey to the mainland had been a nightmare. Dan sat with Anna and the dogs and I chose a seat where I could brace myself while holding onto Jack and we could sit facing the horizon. I was worried about Jack getting sea sick, but once we started moving I worried less about a little vomit and more about a seizure. He was sitting between my legs and I could feel the sweat pouring down his neck and his body melting. Jack’s body isn’t built for stress. He has Addison’s Disease (another gift from ALD) and his body doesn’t produce cortisol to help deal with added stress to his system. A seizure can be a result of his body being overwhelmed, and a boat that’s slapping in the water at strange angles is not an ideal place to manage a seizure.

My mind was racing with planning how to get Jack to a safe spot to lay him down and how on earth one of us could manage to grab his emergency medication that was in the back of our over-packed car two floors down. I was in a panic, but as always, my family calmed me. Anna kept looking over and whispering “I love you.” and “Boogie’s going to be fine.” And, Dan knowing that I can get hysterical fairly easily, kept saying things like, “This isn’t so bad.” – he admitted later that the ride was the worst he’d ever experienced and that Jack’s face (that I couldn’t see) had been a bright color of green. Jack also managed to keep me calm. I spent the hour whispering into his ear that everything was going to be okay. His trust in me and little squeezes back let me know that it was going to be okay.

We were literally thrown back into reality. I haven’t been that scared in a long time, but we survived. No injuries. No seizures. No vomit.

It took a couple of hours before we could recover and returned to our usual chatty car-talks reliving our Block Island adventures, but we are determined not to let that last hour ruin an amazing two week vacation.

Two weeks on Block Island where life is slow, days are long and sunsets are pure magic. Beach time, kayaking, tennis, biking, hiking, puzzles, cards, weaving, paddle boarding, large meals, large cocktails, even a reading of Smiles and Duct Tape at Island Bound Bookstore (thanks to all who attended). We had time with family and friends and, besides the extra few pounds around my belly, we are bringing back a load of good memories. Thank you Block Island for recharging us. And, thank you PopPop and Sue for hosting.

Jack and Anna are back at school, Dan is in Chicago, and I am working on my list of fall “to dos” (lots going on with Smiles and Duct Tape and a new project underway – I will fill you in later).

Welcome back to reality folks.

Love, Jess

 

If it weren’t for ALD . . .

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I ask myself a lot of questions that start with, “If it weren’t for ALD . . .”

If it weren’t for ALD . . . would I still be a photographer?

If it weren’t for ALD . . . would I have ever written anything besides shopping lists?

If it weren’t for ALD . . . what would Dan and my relationship look like?

If it weren’t for ALD . . . would we travel more?

If it weren’t for ALD . . . would Jack love music so much?

If it weren’t for ALD . . . would Anna be thinking about studying art over medicine?

If it weren’t for ALD . . . would Jack’s laughter be as loud?

If it weren’t for ALD . . . what would this year feel like?

I knew that this was coming, and did my best to brace for it, but I am still having a hard time. I open up Facebook and I’m faced with dozens of pictures of dorm rooms and college gear. Smiling family portraits of the last hug before mom and dad get in their car to leave their kids that are starting their next chapter.

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I thought I was okay, but the other day while getting Jack’s haircut, we were approached by one of his old friends. Jack was delighted and didn’t miss a beat – he went right in for a hug and a lick. Jack was fine, but seeing her beautiful smile and hearing about her plans had me crying before I knew what was happening.

So many tears.

I’ve been asking myself — If it weren’t for ALD . . . would I be crying this much as I said goodbye to these kids?

I’m a girl that cries at commercials and the cheesiest of Hallmark cards, so I’m guessing this milestone would have arrived with plenty of tears if Jack were among his college bound peers, but I know that it’s made more intense because ALD did happened – because Jack won’t ever reach this milestone, because it’s another thing he’s missing, because he’s being left behind.

If it weren’t for ALD . . . where would Jack be headed? Would we be driving or flying? Would he be off to study history or art or a language? Would we be excited to empty our nest a bit or dreading the goodbye? How can I NOT wonder “If it weren’t for ALD . . . ?” And, how can I NOT be sad?

So, my tears are flowing these days, as I expected they would be, but I’m realizing that there is another, unexpected layer to my sorrow.

I’m suddenly aware that a big life chapter is coming to a close — not just for the kids heading off, but for everyone they’re leaving behind. So much of my life for the last 19 years has been, not just as a mother to my own children, but watching all these other little humans go from babies to toddlers to school-age children to young women and men. I can’t believe that these kids are starting to move on, leaving everyone in their wake to figure out what they’re supposed to do with our new “freedom”. My nest will always remain full, but the focus of my circle of friends is changing. Friends are talking about selling their houses and starting new projects and careers.

How did we get here? What does that mean for our family? Just when I reached a place where I felt comfortable with my roll in the world, it’s changing. If it weren’t for ALD . . . would I be so uncomfortable with this change?

Crap.

Love, Jess

Today brings the hardest blow yet. Katie V and Katie M each head out for college (RJ is just a week away). These are not just family friends, they are family. Kids that have been been with us — held us up — before, during and after. We are going to miss you guys. Good luck, have fun, and feel free to call Aunt Jess with anything that your mom and dad might not want to hear;)

 

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

HaPpY 19th!

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I’m happy to report that we did not take any bit of HaPpY out of Happy Birthday (if you don’t know what I am talking about, click here)! JackO enjoyed every minute of his 19th Birthday and looks forward to celebrating all month long. Thank you for all your birthday notes – keep them coming!!

 

 

Love, Jess

PS HaPpY Birthday PopPop!!! We will celebrate soon Block Island style;)