Tag Archives: blogging

Finito

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Yesterday I was at a doctor’s office waiting to get my annual mammogram. If you’ve ever had a mammogram, you know that it isn’t any fun. As I waited to be called, I was trying to distract myself with cheesy magazines and social media before starting to send text messages, DanO – how’s your day going? Kim – Wanna head to the beach later this week? Anna – When do you get home from school today?

Before I hit send on the last one, it hit me. Anna wasn’t getting home from school, because she didn’t have school. She’s done. Finito. I’d known it was coming for 18 years, celebrated with her at countless parties over the last two weeks, and sat through a two hour ceremony filled with caps and gowns, playing Pomp and Circumstance BUT it didn’t really sink in until I was sitting in a sterile waiting room with a bunch of strangers, all of us wearing nothing but red and pink striped robes.

Welcome to my world. I was actually relieved when my name was called to go have my boobs smashed flat as pancakes.

Enough of me, my boobs, and my crazy emotions – here are some photos of Anna on her big day!

 

Love, Jess

My mammogram — unlike me — was normal.

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eleven years of sharing

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This month marks eleven years of our family’s ALD story. I’m proud of the way that I’ve been able to share our story honestly and clearly for so long, but sometimes I do wonder how long I can keep it up. Sharing can be exhausting and sharing with a smile on your face can really wipe you out. Lately, I’ve been weighing the pros and cons of (over)sharing. This is what I’ve come up with.

I spoke at Seton Hall University last week. It’s the second time my friend Alison has invited me to speak to her class about “exceptional children” (children who differ from the norm, either above or below). I guess I am a bit of an expert. After all, I have two exceptional children – one on each side of the norm.

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my exceptional children

I was defiantly nervous going into it – everything seems to have me nervous lately. When I arrived at Seton Hall, I needed to sit in the parking lot for a few minutes to regain my composure (there was a whole lot of breathing and imagining being “behind the waterfall” and trying to remember what the acronym RAIN stands for and defusing essential oils into my face). It took several minutes, but I finally made myself get out of the car and once I got up in front of the students the nerves faded quickly. The kids were all ears as they listened to Jack and Anna’s stories, and thanks to the slideshow I created, most eyes were on the photos of my beautiful kiddies and not on my shaking hands.

Then, the following day, I was interviewed by a speech therapy student about Jack and his experiences in school and with therapies. A one-on-one discussion is very different from standing up in front of an audience with a speech prepared. I managed to get through the long list of questions, but there were a few long pauses as I was forced to swallow hard and hold back the tears. I’m okay with the stuff that I’ve shared often – like I have the script so memorized that the words are just words. It’s those questions that come out of left-field that can make me need to catch my breath as I find the right words without losing it.

I’ve considered that all this sharing might be adding to my feeling a little “less fierce” lately, and perhaps walking away from my (over)sharing might be a good idea. After some soul searching, I’ve decided I’m not going to. Although it’s often now accompanied with a little stress, overall I think sharing makes me stronger. I’m taking some control and (I hope) I’m doing something important. It’s helpful for other “special” families to hear what our family has gone through and that we’ve survived – even happy. And it’s important for people to understand what our lives look like. Many of the students I spoke with last week have their sites set on working with special children as teachers or occupational therapists or speech therapists. I’m in awe of this new generation, particularly those who are determined to better the world. They are strong and smart, but they can’t learn everything from books. They need to meet people who are living with disabilities. They need to meet people who work with people with disabilities. And, it can’t hurt to meet a mom of a magical son with disabilities.

I hope they walked away thinking — That could have been me. That could have been my family.

My goal isn’t to scare people, but people need to understand that you never really know how your story is going to play out. You can prepare and be careful. You can eat all your vegetables and exercise five days a week. You can make straight As and go to church every Sunday, but that doesn’t guarantee that life wont throw you a curveball (or many). It’s what you do when those curveballs hit that defines who you are.

Jack is just one example of an “exceptional” child who has taken his curveballs and knocked them on their ass. His story is a good lesson. Jack’s a good lesson with a killer smile. I am honored to be his voice and I will keep it up. It’s Important.

Love, Jess

PS The one-on-one interview was made more comfortable thanks to my warm hosts and enjoying a delicious meal at La Pergola in Millburn, NJ. If you haven’t been – go and tell them JackO sent you;)

 

 

 

 

 

a little taste of my old life

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I got a little taste of my old life last weekend.

Two former clients reached out to me about taking some photos. I’ve had the pleasure of doing a few projects over the last ten years, but my days of steady photo work are long gone. Another victim of Adrenoleukodystropy. Occasionally, I get calls from old clients and I usually explain that I’m focused on other things, but these customers wouldn’t take no for an answer, so I dusted off my camera and I crossed my fingers.

Two shoots in one day. It felt strange to be behind the lens again, but as I looked through the work this morning, I smiled. I still got it. I’m not planning on going back to weekends full of families and babies, but it sure felt good to dip my toe into my old life.

I try not to spend much time focusing on what ALD stole from us, but there are some days that remind me of things that we’ve lost. Saturday was one of those days. I’ve been thinking a lot about it and I’ve realized that although I miss my camera, even without working as a photographer, I’m still using that side of me.

I have substituted photography with writing. I approach each in the same way. I have an idea and I troubleshoot until I find a way to achieve my goal – whether it’s catching the sparkle of a giggling baby or sharing a story. And, both photography and writing are about connecting with people. I was a decent photographer, but I think my biggest strength was how I approached my clients. I’m good at reading people and I’m a good listener. I usually managed to make my clients comfortable. When taking portraits you need to have the client feel comfortable with you – otherwise you end up with that lame, awkward smile that we all had in our ninth-grade school photos.

I’m also aware of the comfort of people who read my blog/book. I’m a decent writer, but certainly not trained. I think what people respond to is the voice in my writing. It’s approachable. Whether I am taking about watching JackO win his race at the Special Olympics or how it feels to fight with Social Security or what it’s like to shower your eighteen-year-old son after he has soiled himself, your sofa and the floor (have I written that yet? It’s a common occurrence around here) – I think (hope) I am able to bring people into our lives for a brief moment.

As much as I loved picking up my old life, I think I have settled comfortably into my new one. I’ll take my computer over my camera for now. I need to write to help myself process our experiences and I love sharing with people who are going through similar challenges. I’m putting my camera back in it’s case. Not that I will always say no when old clients reach out. I might dip back into my old life every now and then. Maybe two or three shoots a year  . . . maybe four or five.

Love, Jess

PS While I was writing this, I got an email that a piece I wrote about medical marijuana is getting published on The Mighty. I get my share of notes that start with, “Thank you for sharing your piece. Unfortunately . . . . “. It feels great to get a note that starts with, “Thank you for sharing your story “Our Family Secret” with us! We’d like to feature it on The Mighty and make you an official Mighty contributor.”

 

 

Do as I say – not as your brother does

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The response to It Shouldn’t be a Secret has been a little overwhelming. I went from not being sure if I was ready to share the news that Jack was using medical marijuana, to having over 4000 people read the post and fielding tons for phone calls, emails and texts filled with stories and questions.

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Overall, there has been very little judgement. In fact, it seems that everyone has a friend or family member who has used cannabis for medical reasons. Some of the most conservative people I know seemed almost relieved to share their stories that they had hidden away as if they had done something criminal. Wait – in much of our country marijuana IS criminal – THAT’S part of the problem.

The one hint of criticism came in a question asked repeatedly. How did we explain to Anna that her brother was going to experiment with pot?

First – Jack is not “experimenting with pot” – he’s trialing the medical benefits of cannabis (that sounds way more official).

We did approach the conversation carefully, but we were honest with Anna from the start. Anna is only sixteen, and by all means we do not condone the use of any substances by young people, but — BREAKING NEWS — teenagers have seen more than you think. Anna knows people who use pot for other reasons than trying to alleviate the spasms in their feet. She was not shocked by the word “marijuana” and she understands that what’s good for her brother is NOT good for her (or her curfew).

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Also, people need to remember that Anna is not your average kid. She was six-years-old when her family scattered and she was told that her brother might not survive. She has witnessed the reality of life changing overnight and the fact that there is often not a right and a wrong answer when searching for solutions. Instead there is often a “maybe if we . . . “ and “let’s see if this works”. Anna is interested in studying biomedical engineering. It took me a while to truly understand what that means other than many, many years of education post high school. My limited understanding now appreciates that Anna wants to help create treatments to save lives. ALD, cancer, ALS – watch out. When Anna sets her sites on something, she’s all in.

Now that medical marijuana has been a success in our house Anna seems to be wondering less about the smell in our kitchen and more about what in cannabis is helping Jack. The scientist in her is fascinated. Lucky for us, because I’m more interested in the fact that it’s working then why — it’s probably good to have one person in the house who understands the science behind it.

As far as the stigma on marijuana – we’re getting over that. The more research we do, the more solid we are in our belief that marijuana is a remarkable drug with a host of benefits. Just last week, top scientists at the National Academies of Sciences, Engineering and Medicine weighed in on marijuana and it’s health effects. After considering more that 10,000 studies, they concluded that marijuana is helpful for pain relief, muscle spasms related to MS (a disease similar to ALD), and for treating nausea and vomiting associated with chemotherapy. I think it’s time we all take a look at our medicine cabinets and realize they’re filled with far more harmful things than cannabis. Hopefully we will continue to see positive change in policies regarding marijuana (although after today, who knows?).

So, that’s how we handled the Anna situation. We were honest. I’m not sure how Dan and I would have parented teenagers under different circumstances, but we have ended up be the kind of parents who answer questions honestly and openly. Anna might not know every detail of our histories or every decision we make now, but she knows her share, and Anna has turned into quite an incredible person – I guess we’re not doing such a bad job.

Love, Jess

Anna’s not completely without complaint. When I am baking for Jack, she always reminds me that I NEVER bake for her. Sorry.

A Room Full of Duct Tape

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I’m not sure of the best word to describe Thursday’s reading at WORDS – but unreal and overwhelming keep coming to mind. The reading took place in the basement of our local bookstore (that makes it sound depressing – it’s … Continue reading →

B Nice

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The Eagle has landed. Smiles and Duct Tape has been released. It’s out of my hands and out there for all to see – and read – and judge – AHHHHHHHHH!

I have lived my life trying to keep expectations low. If you strive for an A and end up with a B, you’re disappointed. If you strive for a C and end up with a B, you’re thrilled. I‘ve been a solid B most of my life and proud of that accomplishment. I pat myself on the back almost every day. Even days when I’m making dinner still unshowered in my yoga pants, if my family made it through the day and is being fed, it’s been a successful day!

Smiles and Duct Tape is the first time that people have rather high expectations for me. I do think that my writing has improved over the last ten years, and I’m proud of my 500 word essays on this blog, but the book is 49,000 words – in a row, it’s about the worst 1000 days our family has ever been through, AND I’ve never written a book. I hope people are looking for a solid C performance and give me a big high-five when they discover it’s a B, maybe B+.

If you read Smiles and Duct Tape and enjoy it, I encourage you to write a review on Amazon and/or Goodreads. If you read it and think I should stick to 500 words at a time, please keep that information to yourself.

The book is currently available at Deeds Publishing, at our beautiful local bookstore WORDS, Amazon (paperback and eBook) and my basement. Please contact me for quantity purchases (i.e. book clubs/super fun holiday gifts for the whole family) and I will give you a deal.

Love, Jess

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another week walking on eggshells

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Good news, bad news.

I will start with the bad so that I can end on a high note (that’s my thing, in case you haven’t noticed).

I had a mild freak-out last week and asked my poor publisher to make some changes to the manuscript. It may have been my way of delaying the production of SMILES AND DUCT TAPE – it’s been hard for me to let go of this project. Anyway, it worked. We’re about a week behind with the release of the book.

The good news is that the book is now with the printer and it should be in your hands by the end of next week. It’s not too late to pre-order – CLICK HERE!

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Now I can spend another week walking on eggshells.

I’m guessing all first-time authors are nervous as they brace themselves for the public’s reaction to their writing. Add that I’m a girl who couldn’t really read until fifth grade AND I was not born a writer — just ask my high school English teachers. I feel almost ridiculous adding the title of author to my resume. And, it’s not just my words that I’m worried about releasing for judgment – it’s my family. I’m hoping that people find our story inspiring, but who knows . . .

It’s too late now. The book will be out there soon and, whatever happens, our family will survive. THAT is one thing that I can always count on.

Love, Jess
I promise that I AM NOT looking at the book again – no more delays.

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the book, social security and magic

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It’s been high excitement over here for a couple of days. The book is approaching the finish line and there have been head shots, cover art and websites. And, there’s been social media – Facebook has been like a birthday, only better.

In the middle of all of this, I got a phone call. “It’s the Social Security Administration. May I please speak to John Torrey?”

Deep breath, “I’m sorry, John doesn’t speak. This is his mother, Jesse.”

“Mrs. Torrey, John is over 18. I need to speak with him.”

Count to ten, “Sure. I can put him on the phone. You might get a smile out of him, but I can assure you that he will not speak to you.”

I could hear the shuffle of papers in the background, “Okay, sorry. John got approved for benefits. Can you come in tomorrow morning to finish the paperwork?”

My mind raced thinking of all the things I had planned, but I found myself saying, “How early should we arrive to make this as painless as possible?”

That’s our reality. We have priorities that can’t be put on the back burner.

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So, this morning Jack and I left early enough to be there before the Social Security Administration office opened. Determined to get in and out quickly enough so that Jack didn’t miss too much school and I didn’t miss my very important hair appointment. Unfortunately, we were far from the first in line, so we sat. And sat. Jack and I were busy taking selfies and making each other laugh, when I noticed the couple behind us admiring him. Jack has a way of making friends wherever we go. The man offered Jack some gum, which Jack grabbed without a thought and popped into his mouth (yes – Jack takes candy from strangers and I let him). We started talking to the couple and before too long they shared that their son had Down Syndrome and that they felt so blessed that he is not just doing well, but is happy, “Just like your son.”

We talked and talked – enjoying our visit so much, that I was almost disappointed when we got called to meet with our representitive. We exchanged goodbyes and off we went. As Jack and I sat waiting for the paperwork to be done, our new friends stopped by to say goodbye. The man reach into his pocket and handed Jack his pack of gum, “This is for you Jack. Enjoy!”

Jack gave him a high five and I thanked our new friends and wished them well. Then, as he walked away, the man turned around and said, “Oh, and Jack – take your mom out to lunch.”

I looked down at the gum in Jack’s hands and there was a twenty dollar bill stuck in the pack.

Our lives are complicated, but sometimes I feel like magic follows us around.

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We made it home in time for Jack to go to school for a couple of hours and for my hair to get back to being sassy. Now I have the task of reading the book one last time before it gets printed. As I travel back to the early days of Jack’s diagnosis, I am trying to remind myself of all the magic in our lives and just how lucky we are.

Check out my  “author page” – this is really happening!

Love, Jess

PS  We made a donation to CaringBride today. We love to “pay things forward” and without CaringBridge there would be no book.

Being “liked”

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Yesterday I went on Facebook and asked people to “like” Smiles and Duct Tape. I need to explain. I wasn’t asking people to “like” me (not really). I was trying to get more information about who reads this blog. WordPress give me facts about country/age/gender, but I’ve been curious about specifics. I’ve wondered how many were friends, family, Maplewood folks, ALD families, or random people who like counting their blessing that their lives are easier than ours.

As soon as I hit send on my status update, I thought, my family is really going to get a kick out of this one. I have a reputation for needing a lot of positive reinforcement, and this seemed to prove the point. I’m not sure where my insecurities stem from, but since I was a little girl I’ve always needed more than my share of pats on the back. Although I am holding to my “need for information” excuse, there might be a little part of me that wanted to know if my words are worthy.

The most significant reason I write is because it helps me to process this life. Finding the right words is like working on a puzzle. I sit down with something on my mind and write without much thinking – like throwing all the misshapen pieces on a table. Then I start to organize the mess. As I work, I see the picture start to form as the story comes together. I know when the piece is finished, because the picture is clear and I feel lighter. If I can explain what we are going through, it means I’ve solved that puzzle.

But it’s not just for me, I also write hoping that this blog helps other people. Whether they’re families like ours who are looking for their peers or “typical” families trying to better understand what it’s like to live in our shoes. I think people respond to the blog because it’s real stories about a real family. And, there’s nothing complicated about the way I write. I fell into writing without much training and hopefully that makes my style approachable (although my lack of schooling may explain part of my insecurity). A friend once said that she could hear my voice when she reads my blog. That was the best compliment I’ve ever received.

So I write for survival and to help others, but I’d be lying if I said that I didn’t care about numbers and compliments. I do look at the stats every day and smile when I see a new reader or another country pop up on my stats page. I do like when someone reaches out to tell me that they enjoyed my latest piece – like I’ve been able to create some good out of this nightmare we’ve been through. It doesn’t make it worth it, but it helps and I guess I am still that little girl who needs validation.

Smiles and Duct Tape received 130 “likes” yesterday. Thank you! Now, if you can hit “follow” on the bottom right corner of this page, I can really feel like this whole blogging thing matters AND I promise to stop begging for love for a while.

Love, Jess