the new normal

Posted on November 8, 2017 by smilesandducttape

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.

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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!

Posted on November 2, 2017 by smilesandducttape

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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.

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

Trying to be Duct Tape

Posted on March 23, 2017 by smilesandducttape

Look what Anna stumbled upon while on our School District’s website:

In case you missed it – check this out!

Jack and I have also had the pleasure of speaking to several classes at South Orange Middle School and are scheduled to speak at an event for CPNJ, a Clinton School fundraiser and a few book clubs. Never did I imagine speaking being part of our journey, but here we are.

I was talking with a friend last week who has a child going through a difficult time with his own challenges, and she said, “I can’t wait to be on the other side of this. I can’t wait to be in a place where I can help other families.” All I could say was, “You’ll get there. It’s awesome!”

We could have reached this place and just lived our new normal, but our family was eager to thank everyone who helped us along the way (our duct tape). I’ve never been great with “thank you notes”, so instead we chose to thank our duct tape by paying it forward – by trying to BE DUCT TAPE.

Whether we are delivering Boxes of Fun (Anna and her Columbia High School friends have taken over, but Jack and I still deliver) or talking on the phone to a newly diagnosed ALD family or speaking to a group of young people about kindness – it’s confirming that we are on the other side AND it’s our way of thanking all of you.

I don’t believe that nature/life has a perfect plan for all of us – I’ve witnessed too much to make sense of that as a reality. What I do believe is that we all have the power to make the most of the lives we are living. I might not always make the best choices, but I will always do my best to help others. If our family can be a little bit of duct tape for someone else, we have done our job.

Love, Jess

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Love That Max

Posted on October 27, 2015 by smilesandducttape

Love That Max is a blog I’ve followed for years, and I am not alone. The blog is currently the #1 disability blog by traffic ranking and a Babble Top 100 Mom Blog. It has been featured on CNN.com, Today.com, Yahoo, The New York Times’ blog The Motherlode, AOL, MSN.com, MTV.com and The Daily Mail, as well as in Redbook, Real Simple, Parents, Good Housekeeping, Woman’s Day, Family Circle and All You magazines.

Ellen Seidman is an incredible writer and an inspirational mother to her three children. I’m honored and excited that she shared my piece, When my son communicates, will he share our secrets?.

Please take a peek and cross your fingers that Jack doesn’t have any secrets about you;-)

Love, Jess

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