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.

 

proof of progress

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Jack wanders. Unless he’s eating with the family around the kitchen island or he’s stationed on the couch in the den in front of Impractical Jokers, he likes to walk around the house. We call it “doing his loop”. He walks from the kitchen, through the dinning room, to the living room and then back to the kitchen. Occasionally, he’ll stop and acknowledge one of us with a little pat on the head, but mostly he just walks slowly from room to room. If someone rings the doorbell and makes the dogs go nuts, Jack will react by hopping up on one leg and speeding up his pace. And, if he notices the commercials on the TV have ended, he might take a break from walking and find his way back onto the couch.

Sometimes when Jack is wandering, he goes off route and heads upstairs and it takes us a minute to find him (our boy can walk up stairs unassisted, but is not able to walk down stairs without a hand). Last week I was busy doing something very important – like a puzzle or watching Dateline – when I realized that Jack wasn’t in the den where I had left him. I did the loop and didn’t see him, so I raced upstairs. I found him in our master bathroom checking himself out in the mirror. He had a big smile on his face and a Visa bill in his hand.

“JackO, what do you have there? I need to pay that dude. Go put it back where you found it.”

Jack smiled and walked right past me. I followed him and watched as he made his way into the office and laid the bill down right in the center of my desk.

Why am I sharing this? Because it’s amazing!!! It’s been ten years since Jack has followed a two part command. It’s proof of progress.

There’s more.

The other night I had some ladies over. We were all in the kitchen enjoying cocktails and catching up. I gave Jack his nighttime medication and then walked him to the bathroom to sit him on the toilet. I closed the bathroom door and returned to my friends. I was planning on giving him a couple of minutes, but may have gotten a little distracted. I was knee deep in a fascinating conversation about teenage angst, when I looked over to the doorway and there was my son. He had gotten himself up off the toilet, opened the bathroom door and found us. His pants were around his ankles, but he had pulled up his diaper. Such a gentleman – knowing there were ladies in the house.

Again – this may not sound like a big deal. It is. Huge.

Need another example?

I picked up Jack from school the other day and we were doing our usual routine of listening to music and chatting (one sided) about our day. Jack seemed bored with me and started looking for something to do. First he turned on the interior light, then he opened his window.

“Jack, your driving me nuts. Turn off that light.”

He looked at me, smiled, reached over and turned off the light.

“Wow! Jack, now close the window.”

Window closed.

The whole way home I was in shock. Did he really just listen to me? Did he just follow a command — and then another?

We pulled into the driveway, I got out of the car and I went around to open Jack’s door. I reached down, gave him a kiss on the cheek and told him how proud I was of him, “Jack, now can you unbuckle your seatbelt?”

He didn’t miss a beat. He reached over and clicked the button. Proof of progress.

That’s right folks. Progress doesn’t always follow a straight line for our boy, but lately he has been shooting ahead steadily – Jack is amazing.

But we already know that.

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Love, Proud Mama

 

 

the new normal

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Smiles and Duct Tape went to Wisconsin last weekend. I’ve been speaking a bunch with the ALD and the special needs worlds, but this was the first time I was sharing our story at a book festival with regular folks. This is what I learned — Regular folks are special, just like us.

I tried not to, but I couldn’t help myself from reading through the bios of all the authors attending the Southeast Wisconsin Festival of Books. MFAs, PhDs, awards, long lists of writing accomplishments. As I boarded the flight to Milwaukee, I couldn’t help but be nervous. How could I compete with all these real authors? And, why on earth would anyone want to go to The New Normal panel when they could go hear about The Poet as Historian or From Page to Stage or Teaching, Writing and Thinking about Queer History?

As soon as I landed, I was put at ease by the warm smile on the face of the man picking me up. He also had a sign with my name on it (I love that whole sign thing). As we got into the car, I asked about his connection to the Book Festival. He shared that he was not just a big fan of the event, but a dedicated volunteer and a former English teacher. My nerves ramped up again as I imagined him editing my work. Why was I here? Maybe Candy invited me on a whim, never thinking I would actually get on a plane and travel the 870 miles. I kept telling myself to breathe. Candy’s an old friend (from elementary school), but she was under no obligation to extend the invite and send me that plane ticket. She must have read the book and thought it would be a good fit for the festival, right? Breathe.

We arrived at the hotel and as soon as I checked in, another author quickly put out his hand and introduced himself. He couldn’t have been nicer and I quickly got over his PhD and other credentials. He was warm, sincere and interested in chatting. Then, I met up with an author who was part of The New Normal panel, and within a few minutes she felt like family. I thought – if everyone here is this friendly, I’m going to be okay.

They were, and I was.

The New Normal drew a larger crowd than I expected and I managed to keep up with the two other panelists. We each had very different stories, but all sorts of connections. I’ve never given a talk with other people and didn’t know what to expect, but it felt natural and I don’t think I even did my usual shaking. I also got to enjoy attending talks by an assortment of talented writers and to reconnect with my old friend Candy (and a pile of her creative/talented friends). All weekend was spent sharing and listening – lots of talking. This was a group that likes words written AND spoken.

As I think about the experience and all the people I met, I’m amazed by the fact that nearly every person I talked with understood “special”. Since I was there to share our family’s journey, people felt comfortable sharing details about their own lives. Many had gone through incredible challenges themselves or helped family through the horrors of illness or depression. They all had been witness to a new normal. Perhaps that’s true about everyone. I think we need a new word for “special”. Human?

Being around such a creative assortment of humans for two days was incredible. Everyone had a story and everyone was eager to hear mine. I walked away energized and eager to start my next writing project (I’ll fill you in on that soon).

I’ve been getting out of my comfort zone quite a bit of that lately. It’s been exhausting, but I’m honored to share Jack’s story with a broad audience. I’m learning a lot about the world and myself along the way.

It’s also good to come home.

Love, Jess

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My reading list:

 

Carolyn Walker’s Every Least Sparrow

Mary Jo Balistreri’s Best Brothers, Joy in the Morning, Along the Way, and Gathering the Harvest

Das Jenssen’s Phenomenal Gender: What Transgender Experience Discoloses

Jeaneete Hurt’s Drink Like a Woman

Nickolas Butler’s The Hearts of Men

AND if this show comes to a city near you —- GO! The Pink Hulk 

 

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