Tag Archives: special needs

and she’s off!

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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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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

a crowded, wonderful holiday

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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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we are the 10-20%

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June 3, 1995

St. Bartholomew NYC, NY

As we were preparing to leave the hospital years ago, our social worker pulled us aside to warn us about all the obstacles parents face bringing home a child with health concerns. “And your issues are a bit broader. Be careful. The divorce rate for couples who have children with special needs gets as high as 80-90%.”

I didn’t hit her, but I wanted to. I’m not sure why she thought it would be helpful to share those statistics with us – what she thought we would do with the knowledge. All it really did (other than make me want to hit her), was make those numbers ring in my ears. At that point, we were convinced Jack’s “specialness” was temporary, but the numbers still rung. As we returned to our lives, and it became clear that maybe we were indeed a “special needs” family, I couldn’t help but revisit the grim statistics. I wondered what made special needs families so vulnerable. Why families wouldn’t gain strength through their challenges and why anyone would EVER add to already complicated lives?

Dan and I got married agreeing that marriage is forever. Few things were on our unspoken list of deal breakers. My parents have stayed married, merging two cultures and two distinct family dynamics, along with a mound of issues while raising three children. Dan’s parents also stayed together through a maze of life and parenthood, until his mother passed away. Every couple has their issues, but both sets of parents were great role-models. Teaching us that if you can get through the tough days, partnership has wonderful benefits. As a couple, Dan and I have had a few friends and family members end their marriages, and none have them have done it easily. It’s a struggle to witness and nothing either Dan nor I would want to duplicate.

So why is the divorce rate for couples who have children with special needs as high as 80-90%? My only conclusion is that, like many tests in life, having a child with special needs highlights any cracks you may have in your marriage’s foundation. Dan and I seem to have an extra sturdy foundation. I think the strength comes from liking each other. It’s that simple.

When Dan sends me his nightly text telling me that he is on the train heading home, I smile. I’m excited to see him. When I tell Dan about my day, he listens. Like all married couples, we have our moments (occasionally months) of frustration/anger/your #$$%ing kidding me, but generally we enjoy each other’s company. And, we both adore our children. We also share the same values and goals and are one of the few people in each other’s lives who really understand what it’s like to live in our home. Our challenges have made us stronger.

Wednesday we celebrated our 20th Anniversary – 20 YEARS!! I feel very confident that we will continue being part of the 10-20% who choose marriage. I don’t think I could manage this life without him. Thank you Dan for being my husband. I love you more every day.

Love, Jess

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June 3, 2015

St. Bartholomew NYC, NY

(the doors were locked – we had to laugh)

happy birthday jackO!

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Day + 2922 (417 weeks/8 years/half of Jack’s life) . . .

Most of us have one birthday, but Jack likes to be different. He has two.

His first birthday marks the day he came into the world. Eight years later, Jack was born again (not in the Christian sense of the word – THAT he hasn’t done yet).

Eight years ago, we sat in room 505 at Columbia Presbyterian while doctors added a small bag of cells to Jack’s huge tower full of medication. It took less then 30 minutes for those cells to enter his veins. We watched and waited, while listening to music (Dan has a playlist for every occasion). It was remarkably uneventful, but it was the beginning of Jack’s life post-ALD.

Like so many life-altering moments, I remember every second of that day. I can’t tell you what I made for dinner last night, but I can tell you what I was wearing eight years ago and I still gag when I recall the smell of stem cells (who knew?). I also have that confusing feeling that it was just yesterday that we sat in that room, but I can’t really remember much before that day — as if our family started on May 30, 2007.

Eight years ago, if someone had sat me down and tried to describe what our lives would look like now, I would have strangled them. I was so sure that we would somehow return to lives that mirrored our lives before ALD took hold. It didn’t matter what I read or who I spoke to, all I could imagine was a family that looked like a family should. Now I know that families come in all sorts of different shapes and sizes, and that happiness is attainable under the most complicated of circumstances.

So, I’m glad I didn’t know. I would have been heartbroken and would have wasted time worrying that we couldn’t manage. Instead, we grew into our new lives and little by little have found a way to make it work. We are strong and happy and thriving. We celebrate Jack’s 8th Transplant Birthday today with plenty of smiles and grateful for all the duct tape that holds us together.

HAPPY BIRTHDAY JACKOOO!

Love, Jess

a happy, positive, crazy lady, with plenty to cry about.

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As I got into the car, I found myself weeping. I was glad there were no witnesses that might decide that it was finally time to check me into an institution. Why was I reacting with tears? I had a armful of flowers and lipstick smudges all over my face, marking the love of my friends and family. I’d done it. I’d managed to share my story with an audience without completely crumbling. There was a little crying, a few long pauses and some questionable ad libs, but I’d done it. Yet, there I was, sobbing and then cackling all the way back to my house. The five minute drive from the theater, with it’s manic mix of tears and laughter, might be an accurate description of who I am. I’m a happy, positive, crazy lady, who has plenty to cry about.

I’m not masking dark pain with my smile when you meet me. I’m genuinely a cheerful person, and when I say things like, “I’m lucky” I mean it. I won’t trade my life with any of you. I’ve been married to my best friend for almost 20 years and we’ve made two extraordinary children. Yes, I wish their lives were not touched by ALD, but I am grateful that they are each doing so well. We are surrounded by friends and family who hold us up when we need it and are always ready to celebrate the good times (the after-party ended at 2:00 am on Sunday morning). This crew is also an incredible assortment of interesting, loving, talented people who I’m honored to know – the cast of LTYM is a welcome addition to the pile. Our town, our house, our stuff — that’s gravy.

The challenges our family has faced have been horrific, but we’ve survived and managed to create a life that works. We are thriving and healthy(ish) and we don’t waste too much time focusing on the negative. I admit to acknowledging it occasionally (like releasing a poison – worried that if I don’t, it might kill me), but quickly try to go back to enjoying life. I hope the piece I shared on Saturday showed both sides of our family. It was about a reoccurring dream I have where Jack starts speaking. Not having heard Jack’s voice for seven years is the sad part of the story. But, if you can wipe away that detail, the story is about a family who has dreams that might never come true, but gets up every morning and enjoys magical smiles and laughter. THAT is the story I was trying to share.

I think the tears in the car were my letting go of the WHY I had a story to share and the laughter was that I shared the FUCKING STORY!! I also think the wild emotion was a result of adrenaline, exhaustion and that I am a little crazy.

Anyway — It’s over. Listen To Your Mother was one of the coolest experiences of my life. Not just getting the opportunity to share a part of myself, but being in a cast full of talented, amazing people and being part of something so much bigger than our individual stories. It was celebrating Motherhood. Motherhood is full of dreams, disappointments, tears and tons and tons of laughter. Thank you to everyone who came (and for everyone there in spirit) and for all the support and encouragement. Now, I promise to stop talking about it;-)

Love, Jess

One last thing — SOPAC has a Green Room and dressing rooms with lights around the mirrors. So cool.

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a pain in the neck.

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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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