Two-Armed Sister Clutch

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You’ve heard from me for ten years. Now, it’s Anna’s turn. When it came time for her to write her college essay I was excited to help, but like all things academic, she insisted on doing it on her own.

Two-Armed Sister Clutch

        I have to hold his torso carefully so that he can’t bite me. For years, as my brother has gotten stronger, my technique has evolved from a simple shoulder hold into the now perfect “Two-Armed Sister Clutch.” My dad takes care of his head to keep it propped up—after all, the neck is the most important part. After ten minutes of very cautiously carving away at his beard, the world’s brightest smile emerges from his newly exposed face. I’ve just shaved my nineteen-year-old brother for the third time this week; my favorite chore with my favorite person.
        A sharp automatic razor and Jack—that’s my brother—make for a very interesting endeavor. But despite the chaos of the project, it always gets me thinking clearly. I think about the disease that forced its way into Jack’s brain ten years ago and made him this dependent on me, and about the fact it has been TEN years. I think about who he was before his disease—my typical big brother, goofy and in love with life. I think about who he is now—my silent and disabled big brother, goofy and in love with life. And finally, I think about who I am, and who his disease has made ME.
        Shaving my brother is a difficult task. I start off by trimming the top layer of the every-so-gnarly hairs. The first layer of Jack’s story is one very long word (the first word with more than six letters that I ever learned): Adrenoleukodystrophy (ALD). That is the neurodegenerative disease that turned my family from one straight out of a J. Crew catalog to the very quirky, “special” family that we are today. I was six, Jack eight, when he was diagnosed with ALD and his brain function slowly unraveled. Suddenly, my brother’s voice wasn’t around to fill up my house with jokes and curiosity. Suddenly, I had to be the athlete of the family…and the social butterfly… and the nerd. And now, a decade later, I am a hop skip and a jump away from being a professional groomer, too.
        After I trim Jack’s beard, its time to crank the razor up and dig down through all the brush, rounding the jawline and inching in to each crevice. Shedding that hair makes Jack look so presentable,… so professional… so normal. I get flashes of Jack Torrey as an adult (Doctor? Lawyer? Artist?), walking the streets of a big city, wife and kids by his side, living a normal life. I see myself meeting him for a bagel and talking about our careers, our friends, or our families. Sometimes I just picture us talking. It has been ten years since Jack last spoke.
        Luckily, my feeling sorry for myself is quickly interrupted by the most amazing laugh to ever exist. The disease that stole Jack’s words and independence did not manage to steal his laughter. I look at him and see what that sweat-inducing work out really uncovered: a giant, radiating smile. I let go of him and he wanders around the kitchen, slowly making his way back to me, tongue out and eyebrows raised, to give the best hug any sister has ever gotten from their big brother. That is Jack’s way of saying thank you.
        I’ll never have a typical sibling to show me the ropes of life and gossip with when I’m older, but Ill always have Jack. I’ll have his smile to tell me to always work as hard as I can. I’ll always have his laugh to encourage me to give back to other people and other families. I’ll always have his hugs after a lacrosse game or job interview gone wrong. And, I’ll always have an escape when I want to think about these things all over again—after all, that boy could always use a shave.

Anna Cappello Torrey
Johns Hopkins University Class of 2022 (we just got the news!!)

 

Love, Proud Mom

 

 

 

THIS is ALD #3 – Dalton

The response to THIS is ALD has been remarkable (If you missed post, check it out). I’ve spent much of the last week corresponding with people in the ALD community — hearing stories and sharing our own. It’s been emotional, but it does have me thinking that I’m onto something good.

I was working on a post about Goucher College and The Grateful Dead (including some marriage advice), but that’s going to have to wait. I have another ALD story about an amazing boy named Dalton.

THIS is ALD #3 — Dalton

I met Dalton’s mom, Jennifer Lindsey, in person this fall at an ALD symposium. I’d followed their ALD story since the beginning, and I was glad that I got to turn her from a stranger-friend to a friend. She is smart and loving and dedicated to the ALD community. As soon as I reached out to the ALD world asking for volunteers for THIS is ALD, she sent me a note. She agrees that the more people share, the brighter the ALD landscape will be.

Thank you Jennifer for your words.

        Dalton was a very laid back, easy going kid.  On a normal day, he wanted to wear jeans and a t-shirt.  In fact, if I ever had a polo or button-up shirt set out for him he automatically assumed it was picture day.  He kept his hair short, but did have a Mohawk a couple times, which he thought was awesome.  Dalton was a hot mess, but he was my mess.  One moment he could be the sweetest, most loving kid you ever met and then turn right around and be the most devilish, ornery kid ever. 
        I always thought Dalton was destined to be a comedian.  He could always make you laugh, even if you didn’t want to.  Sometimes it was genuinely funny and other times it was just so downright stupid it was funny.  Even when he wasn’t trying to be funny at all, it just came naturally to him.  At times he didn’t know when to stop.  He just liked making people laugh so much that if it worked he would keep it up, which at times was just fine and other times could be so frustrating.  Like most kids, he didn’t have a filter, so there was no telling what was going to come out of his mouth.  Dalton was a very sweet, loving boy who was robbed of everything possible by this monster we call Adrenoleukodystrophy. 
        Dalton was diagnosed on July 13, 2016 with Adrenoleukodystrophy, a genetic metabolic disorder that attacks the myelin sheath of the neurons in the brain. It literally robs these boys of their vision, hearing, motor skills, mobility, speech, ability to swallow, and eventually leads to death. A bone marrow transplant can stop the progression of the disease if successful, but does not reverse the damage already done.
        He was a perfectly normal 10 year old boy before. We had no clue. The only reason we had an MRI was because he was having hearing issues in May, 2016. I was thinking it might either be a brain tumor or a processing disorder so we did the MRI to be on the safe side. Second worst day of our lives. At that point they sent us to Riley in Indy, who more or less gave us a death sentence. We were then several days later pointed in the direction of the University of Minnesota Masonic Children’s Hospital, where we spent almost 5 months.
     Dalton had his stem cell transplant on August 29, 2016 which went beautifully, but he contracted the Epstein Barr virus in October, had to undergo more chemotherapy, and then was diagnosed with acute grade 4 gut graft vs host disease around mid-November. They tried several treatments, which were unsuccessful, and he was sent home on his birthday, December 1. We were under home hospice care until December 13 when he passed. I believe with all of my heart that newborn screening and gene therapy would have saved Dalton’s life. 

 

Watching Jennifer’s Facebook feed over the last few weeks has been difficult. She has been reliving/reflecting/sharing (not sure of the right word, but it’s been both heartbreaking and beautiful). “See your memories” is a feature on Facebook that should be about fun memories of silly times over the years, but when you’ve lost someone, it can be upsetting. Jennifer’s Facebook page has been sharing the last few weeks of her son’s life as well as who he was before ALD crept into their lives. Dalton’s radiant smile before ALD is beautiful, and that is the boy that I chose to picture here. I love how Jennifer describes him, “One moment he could be the sweetest, most loving kid you ever met and then turn right around and be the most devilish, ornery kid ever.” Sounds like an awesome boy!

Unfortunately, Dalton’s story is not uncommon for ALD. Stem cell transplants have profound risks and if the disease has escalated passed a certain point, many boys lose skills quickly during the process. And, like in Dalton’s case, a transplant can leave a person vulnerable to infection, rejection of the new cells and Graft vs Host Disease (where the new cells – the graft, attack the body – the host).

As Jennifer says, Dalton’s story might have been different if they had had the luxury of newborn screening for ALD and had had access to gene therapy. Newborn screening allows families to prepare and monitor their child’s health so that treatment is provided in a timely fashion. Gene therapy does have risks, but Graft vs Host disease and rejection is avoided. It’s a game changer for ALD.

For more about Dalton and his journey, check out: In the Blink of an Eye: Dalton’s ALD Journey

Thank you Jennifer for sharing Dalton’s ALD journey.

Love, Jess

Please contact me at jctorrey@mac.com if you are interested in sharing your ALD story for THIS is ALD.

THIS is ALD #2 — Sean

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The odds of winning the Powerball lottery are one in 175 million. The odds of being born with the Adrenoleukodystrophy gene are one in 17 thousand.

And yet, everyone has heard of the Powerball, while most people give me a funny look when I share Jack’s diagnosis.

My go-to response is, “It’s that disease from the movie Lorenzio’s Oil.”

When that doesn’t work, I say something like, “It’s a genetic disease that effects the adrenal gland and destroys the myelin in the brain. It’s worse when it starts advancing as a child. That’s what happened to Jack. Yes – he was totally fine until he was eight-years-old and then . . . well, he kinda fell apart. He did have a stem cell transplant and it stopped the disease from progressing, but he lost a lot during that time. He can’t speak anymore and needs help with just about everything – eating, bathing, getting dressed, even walking down the street. He can eat. He does need to be fed and he has a tube in his belly for hydration. Oh, and he also needs a whole lot of medicine to keep him going. Steroids for his Addison’s Disease – did I mention that his adrenal glad doesn’t work? THAT is pretty common with people with ALD. Not everyone, but most. Jack also needs medicine for his seizures. That’s another thing a lot of the boys deal with. I’m not sure about the men with AMN. AMN is what older men with the ALD mutation get — if they get anything. Some men seem fine. And, most women are fine, at least until they’re older. Then they seem to have trouble walking and with their bladder and bowels. Yea, I know that’s scary. I sure don’t want to deal with any of that. Good news is that my mom’s doing well and she has the mutation. Oh, but that doesn’t really mean anything. Not with ALD. ALD doesn’t seem to have a memory when it comes down a family line. Anyway, Jack has Adrenoleukodystrophy.”

 
As my description demonstrates, ALD doesn’t always look the same. As readers of Smiles and Duct Tape, you know Jack and you know Jack’s ALD, but, there are many phenotypes – Childhood Cerebral, Adolescent Cerebral, Adrenomyeloneuropathy (AMN), Adult Cerebral, Addison Disease only, Carrier’s Syndrome and the lucky few who are completely asymptomatic. There are also several treatments (no cures): dietary therapies, transplant, gene therapy, treatment for adrenal insufficiency. I could show you charts and explain all the science surrounding the disease, but instead I’m going to introduce you to ALD through it’s people. It will be a chance to get to know ALD — our not-so-rare disease.

 
A couple of times a month I’m going to share a story about someone (or a whole family) with our disease. Don’t worry – you’re still stuck with me posting stories about JackO and our not-so-special family. THIS is ALD will be a little extra treat.

 
THIS is ALD #2
Sean Suppan
(Jack was #1)

 
One of my ALD stranger-friends (now friend) is Ellen Suppan. She and I met years ago when her son, Sean, was starting the transplant process. I remember getting off the phone with her almost breathless. Even though our family was two years ahead of them in the process, it was hard for me to imagine what they were going through. Their ALD journey seemed so much more complicated.

 
She shared their story with University of Minnesota Pediatric Blood and Marrow Transplantation Center in 2009. These are her words as Sean was going through transplant:

 
“In 2003, after a lot of doctor visits, we were told that my other son David
had ALD. He was 7. I had no family history, but it has to start somewhere.
Back then, there was nothing we could do for him. Within 3 months, he was
in a bedridden state, and then went to a vegetative state, and he was like that
for 4 years. David passed away in October 2006. We miss him but were
relieved he was no longer hurting.

 
Shortly after David’s diagnosis, I found out that we were expecting and later
learned I was carrying a boy. And yes, he carried the gene, but had a 50/50
chance of not developing symptoms. With Sean, we were very proactive. We
have known since he was born that he has ALD. When Sean was only 3, he
came down with a high fever and we did an MRI, and everything was clear.
We did another MRI 4 months later and there was a spot there. We were
shocked. David was 5 when this happened.

 
My main concern was to get Sean where he needed to be. There are good
hospitals. They have done a couple of transplants, but not as many as the
University of Minnesota. The most transplants for ALD have been done here,
pioneered here and they are still working on it.

 
The downside of going through the transplant is that the chemo may bring
on more advancement. It’s a no-win situation. If I don’t do anything, I have
seen the course it takes. But, we at least know that he will not get to the stage
that my other son had to endure for four years. We are thinking positive.

 
I am thankful and grateful that Dr. Orchard came up with this treatment. It is bittersweet for me. Back in 2003, they did not do transplants for symptomatic
kids like David. The progression with David was very cruel for a parent to
watch. We are doing for Sean what we could not do for David.

 
Don’t expect anything to be normal. It’s a new normal. It’s a new way of
doing things. Be ready. I always keep my gas tank half full, because I don’t
know when I’ll need to go to the hospital. Live in the moment. All the other
things will fit into place.”

 
What isn’t mentioned in this piece is that while the Suppan family was losing their son, David, in the fall of 2006, their daughter Ashling was diagnosed with AML Leukemia (she has just celebrated 11 years in remission). They were still mourning David as they went through treatment with Ashling and were diligently monitoring Sean. Then, as Ashling was enjoying life after her treatment, it was time for Sean’s transplant. Ellen shared with me that she missed her daughter’s high school graduation because she was in Minnesota with Sean recovering from his transplant. ALD often steals a lot from a family.

 
Eight years after our first correspondence, I finally had the pleasure of meeting Ellen, her husband David and Sean in person. I tried not to, but I couldn’t help but watch Sean closely and compare him to Jack. Sean has the same engaging bright smile and is eager to be part of the conversation. He is able to speak and to the untrained eye appears very typical. I did see a few hints of ALD, but needed to ask Ellen for specifics.

 
Ellen shared that following transplant they were most concerned about Sean’s vision, but gradually it seemed to improve. He does have difficulty processing new surroundings and has issues with his depth perception. Other challenges include short term memory problems and some behaviors like making odd noises, chewing on shirt collars (THAT is so Jack) and shrugging his head almost violently. He is able to feed himself, but needs help with other activities of daily living. Sean is currently in the seventh grade and moves between a special needs classroom and a few mainstream classes.

Overall Sean is doing great. The Suppan family is grateful that Sean was able to be monitored closely and received his transplant early. Ellen shared a note she received from his teacher. I think it says it all.

 

Hi Mrs. Suppan,
I wanted to share with you that Sean is doing terrific. I am so proud of him. Today he came up in front of the class and shared with him things he is thankful for. What an accomplishment for him – we appreciate him everyday and are thankful to know him. Happy Thanksgiving to you and your family.

 

“ . . . we appriciate him every day and are thankful to know him.” THAT is how I feel about Ellen. I hate ALD and the chaos it’s created in our families, but I am honored and grateful to have Ellen as a friend AND to have met Sean. Stay strong little man and I look forward to meeting you again soon – next time with JackO!!

 

Love, Jess

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THIS is ALD

hApPy bIrThDaY smiles and duct tape!

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HaPpY BiRtHdAy Smiles and Duct Tape!!

When the book was released last year, I had my fingers and toes crossed that it would find its way into the world, but in my wildest dreams, I never imagined that it would find its way into so many of the right hands.

Smiles and Duct Tape is not winning awards or getting nominated for prizes, but this is better – it’s helping people. ALD parents, special needs families, and people looking to better understand special needs and/or our little, not-as-rare-as-you-might-think disease, Adrenoleukodystrophy.

A highlight of this first year was our family being invited to meet the folks at bluebird bio earlier this week. Last month, the New England Journal of Medicine released a study that indicates that gene therapy is a promising option for boys with ALD. bluebird bio is behind that research.

Thanks to Smiles and Duct Tape, and my need to share every detail of our lives, bluebird bio found us and asked us to come up to Cambridge and talk to their team.

I liked bluebird bio from the start because they have the same relationship with capital letters as I do (my oh-so-cool not capitalizing my post titles), but when I did a little research, I really fell in love: “we are committed to our vision of transforming lives and making hope a reality for patients . . . ” AND one of the diseases that they’re determined to beat is ALD.

They are not just leading studies on new treatments, they are working to truly understand what the current treatments look like – that’s where we came in. We are the face of what ALD looks like with the current standard of care—a stem cell transplant— and without the luxury of an early diagnose. They wanted to hear more about our story and had dozens of questions for all of us (Anna answered questions with such confidence and grace AND Jack won a lot of hearts with his smile). They asked all about the transplant and details about what life looks like post-transplant. The goal of bluebird bio is to provide a treatment with fewer risks and a better after-treatment quality of life.

With all the crap going on these days, it’s hard not to lose a little faith in our world, but spending the day at bluebird bio felt like stepping into the future – a better future. Brilliant minds who are determined to make a difference. AND they invited us into their nest with open arms. We spoke, we ate, and we got an incredible tour of their facilities. These folks are warm and friendly and wicked smaaaht.

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With increased pressure to add newborn screening for ALD across the US and this promising research on gene therapy, the future looks bright for the next generation of ALD boys. If us Torreys can help even a tiny bit, sign us up!

Tomorrow I am off to the Southeast Wisconsin Festival of Books. Yet another exciting opportunity to share our story. I’ll share stories and pictures next week.

Love, Jess

https://www.thedailybeast.com/can-two-brothers-struck-with-lorenzos-oil-disease-be-saved?source=TDB&via=FB_Page

 

 

 

cringing and shaking, but okay

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When I was a junior in college, I took an Old Testament class. It was a small class and most of it consisted of open discussions around a large round table. One week in, I approached the professor and told him I was sorry, but I needed to drop the class; “I just can’t do it. My heart races just thinking about speaking in front of everyone.”

Had you known me at that age, you might find my anxiety surprising. I wasn’t someone who hid in a corner or didn’t like attention. It was the combination of academics and public speaking that made me panic. School hadn’t been easy for me thanks to some learning issues, so when I was at school, I did my best to stay safely in the back of the room. I saved my loud, social self for after class time.

To make a long story short — the professor would not let me drop the class. He bargained with me, promising that he would not make me speak until the last class of the semester. I sat silently for months in a class of maybe a dozen people – until the last day. Of course that made things rather awkward. Everyone had thought there was something wrong with me and couldn’t believe it when I actually opened my mouth that day. I did manage to get my words out, but not without a whole lot of “Ahhhhhhh”s and “Uhmmmmmm”s.

After that class, I promised myself that I would never again speak in public. Then, I decided I wanted to be an art teacher. My first few attempts to model lessons in graduate school were painful, but I got over it and managed to become comfortable . . . in front of a classroom of children.

As an adult I have done a little more public speaking. I spoke at a fundraiser for The PG Chambers School, and to some small school groups with our service dog, Keegan. I even spoke at Listen to Your Mother. Each time I walked away cringing and shaking, wondering when it would get easier.

Since Smiles and Duct Tape was published, I’ve had the opportunity to speak more — at bookstores and schools. And, it’s really ramped up this month. I spoke to a psychology class at Seton Hall University about “exceptional children” and was honored to speak at a CPNJ fundraiser sharing our story and our love for CPNJ Horizon High School. Next week I’m speaking about ALD up in Boston and then heading to Wisconsin for the Southeast Wisconsin Festival of Books. I can’t say I feel completely comfortable as I start a presentation, but I do think I am getting the hang of it.

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It’s so strange how life can send you in a direction that you never expected. The girl who got Cs in English, wrote a book. The girl who couldn’t stand up in front of a small group of classmates, now speaks in front of large audiences of ADULTS. It’s not without plenty of nerves and a whole lot of shaking (honestly – it’s unreal how my whole body shakes), but I am doing it. If it helps other families going through similar situations or helps students trying to understand what “special” looks like or helps people understand ALD or if it encourages people to support wonderful organizations like CPNJ – I’ll do it.

It’s my way of taking back some control. It’s my way of proving that our family has reached the other side of hell. It’s my way of not letting ALD win.

 

Love, Jess

 

 

 

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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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.

 

 

 

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;)