jack knows how to party;-)

DSC00407It’s been a long week. Saying good-bye to Bananz and then trying to get ready for a month away on Block Island — okay, I realize that this doesn’t sound like a particularly awful week. It’s just been a little cluttered and frantic. I’ve been feeling overwhelmed.

When I remembered that I needed to plan a birthday celebration for Jack before we headed out of town, I was less than eager to add to my stack of to dos. Luckily, Horizon High School (HHS) is a place that appreciates a good party as much as our son does. “Planning” a party at HHS simply requires a few texts with Monica (Jack’s aide/ AKA his school mom) and a phone call with his teacher, Mr. David. Add some pizza and a cake from Maria AND YOU HAVE A PARTY!

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With One Direction playing, Jack danced his way around the classroom passing out hugs as party favors. You’ve never seen a teenage boy as happy at Jack. Every time I walk into his school I feel so lucky that our family is part of their community.

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Jack’s school mom, Monica. We love her.

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Maria and her beautiful daughter. Maria doesn’t just make delicious cakes, she’s the reason I’m sane.

For an hour, I got to forget about all the things I need to get done before the ferry takes us to our August home. Now it’s time to go back to the shopping, packing, re-packing, bill paying, cleaning up, etc.

Love, Jess

and she’s off!

We were on our way to the airport. It was only 4:15 am. I had a cup of coffee in my right hand, the steering wheel in my left and my eyes fixed on the road – trying hard not to look at Anna. I’d promised her that I won’t cry until she was safely through security.

“How about socks? Do you have the right kind of socks?”

“Yup”

“A hat Anna. You’ll need a hat!”

“Mom, I packed everything on the list. Don’t worry.”

Most parents would have checked their daughter’s suitcase before sending her off for two weeks in the woods. Many moms would have even done the packing for their child. I’d never seen the packing list sent from Outward Bound or glanced at what Anna had in that red nylon duffle bag. I’ve been rather spoiled as a mother. Anna doesn’t require much hand holding. There’s never been a need to go through her homework or her suitcases.

Anna was born strong and independent, but I’d be a fool not to acknowledge that our family’s circumstances have strengthened Anna’s self-reliance. Independence has been a necessity for Anna. She was only six-years-old when Jack got diagnosed and her family scattered. Although we held to our promise that either Dan or I would always be home at night for her while Jack was in the hospital, we were so focused on what was happening in room 505 at Columbia Presbyterian, that Anna didn’t get much of our attention. Thanks to friends and family, she was surrounded by love and support that spring and summer, but she learned that she needed to take care of plenty on her own.

Now that we’ve taped our family back together, we’re so accustomed to her independence that Dan and I assume that Anna will manage the school/packing stuff without much help. And, she does.

Her room is nestled on the third floor of our house. When I climb those steep stairs to check on her, I’m always amazed at her nest. Like all teenagers, she has trouble finding the laundry basket and her bed never seems to be made, but her closet is organized and she has a large whiteboard calendar hanging above her desk where she lists everything she needs to accomplish for the next month. Her grades are a reflection of her hard work and organizational skills. Bioengineering is her goal, and I imagine that’s where she is headed. She’s the smartest person I know.

Although Anna doesn’t require much in the way of homework or packing help, she gets more than her share of love and attention at home. Even her silent brother gives her constant feedback (with those magical brown eyes and wide smile) about her school endeavors and successes on the lacrosse field. And, we all have opinions and advice when it comes to her social life — 11:00 pm is late enough and shirts should not be smaller than bathing suits.

Outward Bound sent us a note yesterday afternoon informing us that all of the campers had arrived safely. I smiled, when I noticed there was no mention of any missing necessities in our daughter’s luggage. As much as I miss our Banana, I’m certain that she woke up this morning with a smile on her face, ready to face the challenges of the next two weeks. Thank goodness she remembered the hat.

Anna sent me this before she hit the trail and her phone went into quarantine.

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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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blogher15

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.

a crowded, wonderful holiday

I spent the entire drive to the Block Island ferry lying on top of the luggage in the back of the car. I’m not sure why everyone else gets a proper seat. Even Keegan gets a prized spot at Jack’s feet. At least they were taking me with them this time. Last week the whole family left me at home with Maria. She’s sweet, but I miss my family when they’re gone. It’s hard to tell them, so I decided to show them. That guy who keeps showing up at our front door, filling our mailbox and leaving without even a hello — I bit him.

I’m guessing that I will own the title of Worst Dog for a while longer. That’s one of the humans’ favorite games over the Fourth of July on Block Island. There are 18 of them and 5 of us dogs. Seems unfair that they highlight our bad behavior when they are creating most of the chaos. Parades with candy being thrown, loud explosions coming from the sky, days at the beach leading to lines at the outdoor shower and so many dishes in the sink. And, there is the excessive bad language, especially during dinner time. It’s as if there is something wrong with me eating out of Dylan’s hands. WHY serve meat if you don’t want the dogs to have some? Besides so many of the kids are at just the right height for me.

After three days, it was time to say good-bye. My mom tried (again) to put me in the wrong car as she was packing, but I’m on to her and settled into my usual spot on top of the dirty laundry. We made it home safe and sound. I’ve been told that we are heading back up to the island in another few weeks, but it’s not quite the same as our Fourth of July madness. There are never more than four dogs at a time in August!

Thanks PopPop and Sue for hosting another fun-filled holiday!! It’s always a little nuts, but we all enjoyed every second!!

Love, Finn

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a pain in the neck.

Jack is killing me one hug at a time.

Jack’s hugs are legendary. They’re intense and over-powering. He doesn’t just hug with his arms. He uses his whole body – his whole soul (if you believe in that kind of thing). Generally, these hugs are encouraged and stolen as often as possible. Something I look forward to as I get him out of bed each morning and as he steps off the school bus in the afternoon. But, this week I am avoiding them like the plague.

I woke up last Friday with a little crick in my neck, and by Saturday afternoon I found myself on the living room couch, crying to my mother on the phone because I was having trouble getting myself up. Dan rescued me and took me to the doctor. With a shot in the ass (not sure of what – I didn’t ask too many questions), and a pile of pills, I was sent home and told to “take it easy for a few days.”.

If you know me, you know that those are welcome words. Binge watching bad TV without guilt, generally would sound like a mini-vacation, but I wondered if the doctor really understood my ability “to take it easy” and the hidden dangers that lurk in our house.

Luckily, it was Saturday and Dan and Anna are unbelievable caregivers. They took charge of the dogs and the cooking, and set me up on the couch with a heating pad on my neck and my feet up. I was on a cocktail of valium, steroids and muscle relaxers and was finally able to forget about the pain and focus on the horrors (and blossoming love) unfolding in the Foxworth grandparent’s attic.

Jack was my partner. He loves nothing more than hanging with his mama on the couch and never complains about my choice of viewing (one of the benefits of having a non-verbal child). But sitting quietly on the couch watching Lifetime’s attempt at the Flowers in the Attic trilogy was far from relaxing. Jack would throw his leg on my lap, making me move and sending a spasm to my neck. Then he’d grab my arm causing the same reaction.

It happened again and again and I started getting frustrated, which made Jack sad. I could see him trying to figure out what he was doing wrong and how he could fix it. Suddenly, his beautiful brown eyes locked on mine and he knew what he needed do to make his mama feel better. He went in for a hug. Unbearable pain!

It’s been days, I’m off my medicine and feeling much better, but every time I see that look in Jack’s eyes, I get a little nervous. It’s going to be a few weeks before I can trust those arms around my neck again.

Love, Jess

Here’s just one example of the intensity of a Jack hug. Be warned.

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We love CP.

IMG_2586It’s been a while since I’ve felt that people were watching us. The kind of watching that people do when they are trying to be subtle.

My only explanation is that Jack was looking particular “normal” yesterday (am I allowed to use that word?). He was wearing over-washed jeans and a sweater with a tee-shirt poking out of the top. He had on hiking boots instead of his usual school footwear (which include brightly colored leg braces) and he was in desperate need of a shave. He looked like an average teenage boy.

We walked into the doctor’s office without drawing any attention. Before checking in, I walked Jack over to a chair, took off his coat and guided his rear onto the seat. This action requires me to literally bend him. The only person who noticed the routine was a young boy playing a video game across from us. As he watched me settle Jack down onto the chair, he made a face and grabbed his mother’s arm, “What’s wrong with that kid?”

“Shhhhhh.” she answered too loudly, “Stop staring.”

Suddenly, everyone in the waiting room was trying not to stare at us. They quickly looked down at their magazines or phones as they kept one eye in our direction. I could almost hear their minds racing as they tried to figure out what was with wrong with this seemingly normal teenager. Just as I was getting ready to give a little explanation to the group, we were told the doctor was ready to see us.

As the nurse ushered us into the examination room she proceeded to have an entire conversation with Jack without noticing that he didn’t once answer any of her questions. I guess she was used to over-zealous mothers doing the talking for their sulky teens. It wasn’t until she told Jack to take off his shoes and hop on the scale that she seemed to acknowledge that Jack was “complicated”. As I knelt down to pry off his boots she said, “I have a cousin with Cerebral Palsy.”

Jack often get’s mistaken for being Autistic, but this was new. Without thinking I blurted out, “Jack doesn’t have CP. He’s has Adrenoluekodystropy . . . and Addison’s and Epilepsy, but not CP.”

I suddenly worried that I might have insulted her (and/or her cousin), so I continued, “Not that there is anything wrong with Cerebral Palsy. Jack has a lot of friends with CP. In fact, my sister-in-law has CP . . . We actually love CP.”

The awkward silence that followed was painful and I tried desperately to liven up the room by telling Jack ridiculous jokes. This only made things worse and as the doctor walked into the room the nurse left quickly and I could have sworn I heard her gossiping about our conversation with the other nurses in the hallway.

We saw the doctor and left the examination room eager to leave this errand behind us. We walked down the hallway toward the waiting room trying not to make eye contact with any of the nurses (all of whom were doing their best not to stare). As we checked out, we were met with another unsuspecting person who glanced up at us. Jack was standing with his arm tightly around my neck – a stance that I am very used to, but might seem rather peculiar to a stranger. She just smiled and said, “You are so lucky that he still loves on you. My boy won’t give me the time of day.”

I took a deep breath, preparing to go into my explanation about Jack’s challenges and inability to respect common boundaries, but then I thought better of it. “Yes. I am lucky.”

Love, Jess

a job, a dad, and a beard

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Big day here at 26 Clinton Avenue, and I’m not referring to the snow day. Today, after seven months at home, Dan went to work.

Working in finance it’s almost expected that you will be let go, downsized or simply fired at some point in your career. Its often not a reflection of your work ethic or knowledge base, it’s just that companies change their strategies or decide that someone is easily replaced with a cheaper version. Dan and I have both known it was a possibility, but have always been lucky to enjoy the security of consistent paychecks, fun bonuses and good medical insurance.

When Dan first got let go, it did take me a little while to put it in perspective. Our family has certainly had worse days (heard worse news), but the news of Dan losing his job shook my foundation. Dan’s job has always been a stable structure in our percarious house of cards. We’re not so well off that we aren’t aware of money, but it’s something we don’t need to worry about often. We have enough. Enough to pay bills, enjoy vacations and pay for help that allows me to breathe. Money makes our lives easier. I know this, because I know many families with complicated lives that don’t have any. It makes difficult circumstances, more difficult.

Although those first few days after hearing the news I did feel the unease of not knowing what to expect and feared the possibility of losing our security, I wasn’t as panicked as I would have imagined. My confidence in Dan, our families resilience and our savings allowed me to keep my perspective. Dan put me further at ease when he explained the generous package that his company had offered. Not a “golden parachute”, but solid silver. And, a package that included a “garden leave”.

Although Dan managed to secure his next job quickly, this “garden leave” required him to stay out of his industry for a period of time. “Garden leave” protects companies from having their ex employees hitting the market quickly. It meant Dan got to enjoy all the perks of working (salary, benefits, etc) without working. And, he got to spend the last seven months going through our family weekday routine – a routine that he has never had the opportunity to truly witness. I thought it would be tough adding Dan to our days, but it’s been wonderful. He’s been great company, had meaningful time with the kids, and has enjoyed hiking, reading and growing his beard.

After seven months, it was strange to see him put on a suite this morning, and kiss my forehead with his freshly shaved face. Strange having breakfast without him. The house seems oddly empty without his music playing and offers to do the grocery shopping (and shoveling). It’s going to be an adjustment, but we’re ready and grateful that we had this break. I’m so glad I didn’t waste too much time worrying.
Love, Jess

Just a crappy day.

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I thought I was imagining something when I first heard the water, but then I felt it. A little drip that quickly turned into a gush. Within minutes it sounded like a river was flowing down from our washing machine (on the second floor). Water pouring out of the mudroom ceiling and quickly covering the tile floor. At first Dan and I just stared at the water yelling four letter words – as if they would somehow seal the the pipe. “We need to turn off the $%^&ing water!” finally got me to move.

I ran to the basement and my socks told me that the water had already found its way downstairs. I remembered a contractor once showing me where the water shut off valve was, but with the sound of water it was hard to concentrate and there are a whole lot of valves in that front utility closet. It took me a few minutes, but finally I held my breath and turned the blue valve. Instantly, I heard the sound start to taper off.

I always though there should be a rule that if one part of your life is complicated that everything else should fall into place. Unfortunately, life doesn’t work that way. Life can give you more than you can handle. Bad things happen to good people. And, I really can’t imagine there is some “great plan” that includes diseases like ALD and pipes bursting.

That’s my truth. Life is hard and not always fair. I’m jealous of my friends and family who believe otherwise, and have I’ve tried to adopt their faith, but I tend to go back to the “life (nature) is often cruel“ approach to life. But don’t think that my reality means that I walk around the world assuming or expecting the worst. My approach actually allows me not to take things personally or spend much time asking WHY. It’s just life. Sometimes we get dealt a bad hand, sometimes a winner. I try to do the right thing because it seems to stack the odds better for people around me. And, I surround myself with people who do the same. I also try to really appreciate the good times and not take things too seriously.

After our water crisis, Dan and I took a few minutes to feel sorry for ourselves (we may have even revisited some four letter words), but the conversation quickly turned to “how lucky we were that we were home” and “how much worse it could have been” and “thank goodness for good insurance”. We spent a few hours pulling up carpeting, drying off walls and setting up dehumidifiers. The plumbers finally came, were able to isolated the broken pipe and restored the water to the rest of the house. They apologized as they explained that it would be a few days before they could do the repair work (century old homes and 10 degree temperatures are great for the plumbing business). They also said that we should call our insurance company, “I’m really sorry, but this might get complicated.” Dan and I just looked at each other and smiled.

When you have lived through truly horrible days you recognize a simple, run of the mill, crappy day for what it is. Friday was just a crappy day.

Love, Jess