Tag Archives: special needs family

a banana goes into the wild

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Anna leaves next week and I’m in a panic.

It’s not the first time that Anna has gone away to camp, but it’s the first time that we’ll likely not hear from her for two weeks. As parents we need to be willing to let go, but it’s hard for me. Our house is so quiet when Anna’s gone. People assume that Jack is the center of our family, but it’s really Anna who holds everything together. It’s her school projects and social life that are the main topics of dinner conversation. And, it’s her curfew that’s the main source of weekend arguments. When she’s gone, the laundry is cut in half and so is the energy at 26 Clinton Ave.

Dan and I agree that summer is time for adventure and Outward Bound caught Anna’s attention as soon as she opened their website. She leaves Tuesday to go backpacking and whitewater canoeing in the Blue Ridge Mountains of North Carolina for 14 days.

The idea of living outside for two weeks makes me shudder. Add to that the absence of toilets and showers, and I feel sick to my stomach. So why are we sending our precious Anna? Because she’s a Torrey. It’s in her blood.

Anna’s great, great grandfather, Raymond Hezekiah Torrey, was the founder of the NY/NJ Trail Conference and one of the original pioneers of The Appalachian Trail. He also wrote a weekly column for The New York Evening Post called Outings and The Long Brown Path. Anna’s grandfather, Raymond Joseph Torrey (PopPop), followed in his grandfather’s footsteps and completed The Appalachian Trail last year. As we celebrated this milestone (near the memorial for Raymond H. Torrey engraved on Long Mountain in Harriman State Park), I could see in Dan’s eyes that he longed to continue the family tradition. As soon as retirement starts, I’m sure the woods will call Dan. In the meantime, Anna will fill his shoes – not on the Long Brown Path, but in the beautiful Southern Appalachians.

Anna has seen a lot for a 15 year-old-girl and she understands more than most people twice her age. I hope this experience will add to her already broad assortment of accomplishments. We are all so proud of her. I know I’ll need to fake a smile when I drop her off at the airport next week. I will squeeze her a little too hard as I start counting the hours until we see her again. Then I will drive home and try to fill my days with projects. Thank goodness Block Island will keep us company for much of the time.

We will all miss you Banana, but are excited for you and can’t wait to hear the stories. And, if we get a few postcards, we might consider changing your curfew to 11:30.

Love, Mom

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the weather inside is frightful

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I hadn’t realized how hot the house had gotten until Dan got home and questioned why it was 89 degrees in our bedroom. I thought I was sweating because of all the adrenaline following the Blogher15 Conference. I checked the thermostat and sure enough, something was wrong.

A series of fiddles and phone calls and it was confirmed that the central air was indeed broken, “Sorry lady. Just turn it off and we’ll see you in the morning.”

I knew this news was not going to go over well, and struggled to keep a smile on my face.“Won’t it be fun to camp out in the basement? It’s nice and cool down there.”

I would love to share that my entire family was excited and happy with the situation. I can’t – we are a NORMAL family. There was a lot of storming around the house and dinner was completely silent (following the rule that if you can’t say anything nice, don’t say anything at all). We did manage to get the basement set up without killing each other and then discussed bed assignments. The original plan was that Dan and I would share the pull-out couch, Jack would take the blow-up bed and Anna would sleep on the floor. She’s heading to Outward Bound next week and it seemed like good practice.

An hour into our camping trip, I realized both of the children were still awake and I told Anna to take my spot. I would share a bed with Jack to try to calm him. Jack doesn’t have the ability to easily shut down for the night. He gets distracted and fidgety. Brain damage is strange. I spent the next several hours trying desperately to get Jack to go to sleep. Just when I would think he was out, he would sit up and attack me with his elbow, leg or his entire body. At one point, he fell asleep with his body folded completely over me. I was so tired that I just let it be and closed my eyes. When I woke up a couple of hours later, I realized that he had peed on me.

I know that more than one of you are saying to themselves, “Last time I hung out with Jess, I did notice that she pees an extraordinary amount . . . maybe . . . ”

It’s true. I am a pee-er (spelling?). I’ve been told my issues are a little gift from the ALD gene. Woman (generally) don’t develop major symptoms, but they do tend to receive an assortment of little reminders that the gene is lurking. I don’t have much to complain about. Some numbness in my feet and a bladder than doesn’t work perfectly. My Fitbit tells me I wake up 4-5 times a night and walk approximately 170 steps. During the day can be even worse. My family is accustomed to many unexpected stops while on the road.  Dan knows to ask, “Should I wait for the next rest stop or just pull over?“  – I always have a roll of toilet paper handy and my husband it a good man.

I do admit to my “issue”, but last night was all Jack. I still love the boy, but I don’t like being peed on.

Love, Jess

blogher15

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I have all these words swimming around my brain today – audience, organic, engagement, analytics, platform. I’m trying to quickly sort out everything I learned at the Blogher15 Conference before my brain returns to focusing on my usual words – laundry, diapers, groceries, medications, and reality television.

When my friend, Brooke Lefferts http://www.carpoolcandy.com, encouraged me to sign up for the conference, I was intimidated. Then I remembered that she had motivated me to audition for Listen to Your Mother and that seemed to go well, so I dove in.

Friday morning I boarded an early morning train with Brooke, our new friend, Christine Carlisle http://www.chewnibblenosh.com, and what seemed like thousands of commuters. We found our way to the NYC Hilton, signed in and were given our badges. I felt like an impostor, like at any moment I would be asked for proof of being a “real blogger”. Luckily, there was no security or verifying of site stats.

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I believe strongly that people laughing WITH me is far better than people laughing AT me, so I played the role of naive newbie as I stumbled around the conference. I did get more than one laugh referring THE Twitter and asking how one would find their “analytics”. Truthfully, I didn’t need to put on much of an act — I was out of my league. But what option did I have? There is no Blogher for Dummies. So, I laughed my way through the speeches and sessions and managed to get a ton out of the experience. I left the conference with a pile of knowledge, a huge amount of motivation and some new friends.

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Introductions are constant at any conference and this one was no exception. Cards were thrown around like confetti at every opportunity. I quickly learned that “parenting” is a very crowded space, so in an attempt to differentiate myself form the “twenty ways to pack a healthy lunch” category, I started to describe myself as a “special needs blogger”. That was greeted with sad faces, so I changed my approach. “I write about my family. How to have a normal family with a special child.” Positive, upbeat and honest.

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The conference was full of incredible speakers and activities, but the most meaningful moment for me came at a session I attended called Storytelling about Special Needs Parenting and Disability. The first speaker was not a blogger, but a parent. She’d lost a child and has another with special needs. She referred to herself as “a silent reader”. Wandering her way through the internet searching for people who could relate to what she is going through. I was that person eight years ago. Desperate to find my peers – people who understood me, people who could help my family navigate through this new and rocky territory. My goal for Smiles and Duct Tape (both the blog and the book) is to help people learn that even when life takes crazy turns, that it doesn’t need to derail your family. You CAN HAVE A NORMAL FAMILY WITH A SPECIAL CHILD.
So, it’s time I broaden my reach (sounds fancy, right?). Please help me spread the word.
Thank you Brooke!

Love, Jess

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After two long days we enjoyed a great dinner. Meet two other great ladies and incredible writers — Amy Byrnes http://www.amynameisamy.com and Emily Nichols Grossi http://www.em-i-lis.com.

the talking dream

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I remember the first time I heard my voice on my father’s mini-tape recorder. I was about four, singing Itsy Bitsy Spider. It sounded so strange. He’d taped me just minutes before, but I still questioned if it was really me. Although we live in these modern times full of videos, I’ve managed to avoid them. Not even our wedding made it to VHS or DVD or HD or whatever they’re calling it today. So, imagine how I felt when I sat down and watched myself sharing my story,  The Talking Dream, at Listen to Your Mother.

A few comments:

1.) Bangs don’t translate well with overhead lights.
2.) My hands move in a way that makes me uncomfortable.
3.) I play with my wedding band obsessively.
4.) I’m not a pretty crier.
5.) All this, and I’m still proud.

Check out the rest of the cast — I shared the stage with a talented crew!
Love, Jess