Tag Archives: listen to your mother

When one thing leads to another, and another, and another, and another . . .

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You know those memories that pop up on Facebook? For me they’re usually photos of the kids at younger ages or my friends and I acting foolish. I sometimes pause for a second to remember the memory. I often cringe at the thought of me deciding to post something so silly or wonder how on earth I didn’t appreciate my face before it was full of lines. 

Yesterday I paused for a while for a different reason.

8 years ago, I’d posted a video from Listen to Your Mother from 2015. I’d tried out for the production after some persuading from a friend (thanks Brooke). She’d encouraged me to do more to share my words – to share our family’s story. Eight years ago, I’d started to be more confident in my writing, but the idea of standing up and speaking in front of a couple hundred people made my stomach clench. But, I auditioned for the production trying to push myself, feeling comfortable with the fact I would never actually make the cast.

I made the cast and was forced to work through my fear of public speaking. The rest of the cast was extraordinary. Each of their stories were beautiful and many of those folks remain friends today. Listen to Your Mother ended up being a huge part of my life. Not just the five minutes I spoke on that stage, but what those five minutes led to.

Shortly after the production, thanks to the encouragement of another friend (thanks Alice), I started working on Smiles and Duct Tape. Once that was published, I started to connect more with the ALD community (thanks Kathleen). My work within that community focused me more on working with people. One COVID day while hanging out with a friend discussing what I should do with my next chapter, I found myself starting an application to NYU for a MA in Counseling (thanks Monica).

My Linkedin page has my title as mom/writer/speaker/advocate/therapist. All connected. One led to another, led to another, led to another, led to another.

This is not the life I imagined. My heart wishes that Jack did not need to suffer years of discomfort and need to rely on an army of people to care for him. I wish Anna didn’t get introduced to the power of medicine the way she did. I wish Dan didn’t need to carve out time in his work schedule to bathe Jack in the morning. I wish I didn’t need to know the word ADRENOLEUKODYSTROPHY to be provided with a long list of job titles on Linkedin. I wish I didn’t need to dream to hear my son speak. 

But I’ve learned to accept the cards we’ve been dealt.

I talk about acceptance a lot with my clients. I acknowledge that life is often not fair or easy. I allow people to kick and scream and yell at GOD, but then I help them work on focusing on what in their lives is working. I have them find the positive — even if it’s just a tiny morsel tangled up in a mess of darkness. I have yet to find someone who can’t find at least a sliver of light within their lives and many are able to appreciate a pile of positives.

It’s taken time – and not a straight path —  but our family has been able to appreciate our pile of positives. We’re blessed with the fact that Jack survived and is comfortable in the life he’s living. We’re grateful to have the financial recourses to pay for necessities and care and even wonderful vacations. We’re lucky to have found ourselves at Columbia Presbyterian with doctors and nurses who were brave enough to try a treatment that was out of their comfort zone. We’re blessed to live in a state that supports people with disabilities and we’ve had our choice of wonderful schools and adult programs. We’re fortunate to have a circle of other mothers who care for Jack with dignity and love. We’re thankful to have a wonderful extended family who is always there for us. AND we have friends who don’t just help us create foolish Facebook photos, but help guide and encourage us when needed.

Yesterday, as I watched the video of The Talking Dream on Facebook, I had that strange feeling that I’d shared that story a lifetime ago AND that I’d shared it just yesterday. So much has happened in eight years. The kids are both now adults, Dan is now a crypto guy with a beard, and I have a whole lot more on my resume BUT I still have that dream and still wake up hopeful.

Love, Jess

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

 

 

 

listen to your mother

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Generally, I do my best to avoid failure. I rarely set myself up for disappointment. But, thanks to the encouragement and support of a good friend (actually a huge pile of friends and family, but one friend who actually sent me the link and twisted my arm a little), I went out of my comfort zone and auditioned for LISTEN TO YOUR MOTHER – a live production (hosted in 39 cities across the country) celebrating motherhood. An incredible event where a cast of local writers share their stories “ . . . on the beauty, the beast, and the barely-rested of motherhood, in celebration of Mother’s Day.”

I went to the audition to prove to myself that I could do it. If sharing our family’s story is the goal, I need to start taking some risks. Knowing the caliber of the cast last year, I doubted that I’d be considered, but needed to give it a shot.

I left the audition sweating and wishing that I could have a do over – an opportunity to read the piece again, minus the tears and the shaky voice. Writing alone in my den and hitting “send”, is very different then sharing the words out loud. But, I did it. I stood up and shared a piece of my writing about my family, my boy and a reoccurring dream.

Returning home, I was proud of my attempt and already considering what I could submit next year. When I got the call that I’d been selected for the cast I was shocked. Literally, I found myself running around the house like I’d just scored a prom date. It’s been over a week and I’m still overwhelmed by the news. No disappointment this time!!

Buy your tickets now. Seriously, it’s almost sold out;-) YIKES!!!!
http://listentoyourmothershow.com/northjersey/

Love, Jess