lucky mom

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Every weekday morning, Anna races downstairs making sure she gets a chance to give her Boogie* a hug before his bus arrives. It makes my heart melt. No matter what’s going on in our family, our country, or the planet, I try to pause and enjoy the love that these kids have for each other. Siblings/best friends – the strongest bond I’ve ever witnessed. I’m a lucky mom.

That is all.

Love, Jess

* Jack AKA Boogie, Boogie Brown, Boogs, Boogs McGee, JackO, WackO, The Weasel

 

My Sister (daughter/bestie)

 

I didn’t have a sister, so I made one. It took a bit of help from Dan and loads of support from our friends and extended family, and I think we’ve done a pretty amazing job with the project. She’s just one inch shorter than I am, has the same blonde hair (although hers is a little more natural than mine), and we defiantly share the same sense of humor. She is a great sister to have. She is smart beyond her years and is the kindest person you will ever meet. She is a much younger, smarter, kinder version of me. Anna is my mini-me daughter/sister/bestie.

Thanks to my daughter/sister/bestie being thirty years younger than I am, I get to have a window into the life of a teenager in 2017. Trust me – it’s amazing!

This June has been particularly packed with fun and signs that our little girl is not so little anymore. I know I am not alone in being caught off guard by how painfully long parenting goes on AND just how quickly it’s over. How can our girl who was just in pre-school be on her way to starting her last year of high school and filling her life with so many adult things?

Last weekend Anna stayed home alone for a night. She had to stay local while the rest of us went to visit family. We were going to have her stay with friends, but after a lot of back and forth, we caved. She has never done anything to lose our trust and she did not disappointment us last weekend. There were no parties. If you are thinking, “How would Jesse know?” . . . I set up a camera in the center hall — really — I might trust her but I am not a fool AND I’m also a little nuts.

Then, this week Anna went to her second Prom for the season. Our beautiful girl looked stunning in her red dress and wore higher heels than her mama can manage. She shared plenty of fun stories of teenage silliness with her (much) older sister (that’s me). She also came home at 4:03 am (I still have the camera in the center hall). I sure wish I could have half the energy of my daughter/sister/bestie!

The last hurrah for Anna’s Magical June will be her birthday. Anna turns 17 on the 28th. In NJ, 17 means she gets her driver’s license. That chunky little peanut who used to snuggle safely in a car seat just a minute ago is going to be driving a car. It’s a little hard to imagine, but at least now I have a daughter/sister/bestie who can help me with errands and is also a designated driver!

All these significant events are to be celebrated, and I feel so lucky that Anna and I have a relationship that is so close, but as each of these events happens there’s a little stab to my heart. Prom, staying alone, senior year, driving – these are all milestones that Jack will never reach.

It’s hard, but so far I’m holding it together. Thank goodness I’ve mastered the ability to compartmentalize. It’s the only way I can survive. When I look at my daughter/sister/bestie, I try to clear my head of what ALD stole from Jack, and focus on how amazed and thrilled I am for her. So much of Anna’s life has been about Jack. It’s her turn to be the center of attention.

Besides venting a tiny bit here, I am going to do my best to continue to ignore that little stab to my heart. It might not be the healthiest decision, but I really want to avoid missing these celebrations by wasting time with the “If onlys”. Life is way too short and my sister/daughter/bestie needs me!

Love, Jess

 

 

GOOD > BAD

Enough with the hard stuff – let’s celebrate!

A crazy few weeks around here and most of it has been WONDERFUL.

Last week, Jack and I had the honor of speaking at an event for CPNJ (the parent organization of Horizon High School). 150 employees were celebrating 5, 10, 15, and 20 years of service to CPNJ. We were asked to speak representing CPNJ families and sharing a bit about how their team has helped us. My nerves still cause me to jitter a bit when I speak publicly, but overall I think I’m doing a better job. And, looking out at a room full of so many people who have helped our boy, I felt extremely grateful. I did the majority of the speaking, but when Jack joined me on the stage, he really did steal the show. His smile is electric.

 

Then yesterday, we shared our story in a whole different way. Through Jack’s school, we were approached by a Taiwanese television station that is making a documentary about children with special needs and adaptive equipment. A large crew of people and cameras arrived bright an early to catch our morning routine (I took care of some early morning messiness before they arrived – THAT would have been a little TOO real). The crew followed JackO around throughout his entire day, and by the time they arrived back from school, they all seemed like old friends. It’s amazing the connections our silent boy is able to make. The documentary is following children with disabilities from four different countries, discussing different approaches cultures have towards the special needs community. It’s scheduled to air in Taiwan in the Fall. They promised to send us a copy. I can’t wait to see our boy on the screen (and to see if my need of highlights is distracting;-).

 

It’s not just our boy who has been getting some attention. Anna received a wonderful invitation last week. On Monday, Boxes of Fun is being recognized as a recipient of the Friends of Child Life Award at New York Presbyterian Morgan Stanley Children’s Hospital. We’ve been making Boxes of Fun for the children on the Bone Marrow Transplant floor at the hospital for eight years. Last year, Anna asked to take over and started a club at her school with her dear friend, Jane, to help raise money and fill the boxes. No surprise, they dove right in and have not only raised enough money to extend the program to Hackensack Hospital, but they have raised awareness for both Boxes of Fun and paying it forward. Kids these days . . .

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Our lives are complicated. Big things like fighting with Social Security and little things like Jack developing a habit of soiling his bed overnight. Some days I feel like we are dealing with more than our share of sh*t, but when I step away and look at the big picture, I am reminded that the good still outweighs the bad by a long shot.

I am beyond proud of both of our children. Each with such different lives. Each extraordinary.

 

Love, Jess

 

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What I realized while in Paris

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Sitting at a dinner table in the heart of Paris I watched my mother and daughter debate everything from single-sex college dorms to the definition of rape. Suddenly it occurred to me that I was watching two extraordinary women. Two of my closest friends.

I’ve always been close to my mother – first as a daughter and then as a friend. I remember when our relationship turned from mother/daughter to friend/friend. I was older than Anna. I needed to be older than Anna. I needed guidance well into my twenties (okay – I still need guidance, but my mother is much better at slipping her advice into polite conversation – usually).

It’s strange when your mother becomes your friend because she becomes human. She’s no longer the person behind a curtain who you fear but can’t really see. This new person makes mistakes and bad decisions (not you, Mymom – I’m just trying to describe most mothers). She goes from telling you what to do, to what she did and how she learned. This women asks you for advice and helps you without needing to take over. I loved when our relationship switched, but I was an adult when my mother’s curtain fell. My curtain seemed to fall off without me even noticing.

Anna learned early in life that I am human. I blame ALD for the weakened grip on my motherhood curtain. ALD has a way of stripping down resilience. Too much energy is taken with worry and late nights. It been quite a while since I was careful with my answers to even the most “adult” questions and I’m certainly not great at hiding four-letter words or less-than-perfect mother behavior. Fortunately, Anna has always loved me unconditionally and she seems to know which of her mother’s characteristics to emulate and which to stay away from . . . She has grown into a remarkable young woman. Anna’s not just a good student, but she’s smart – not always the same thing. And, she’s funny and kind. I’ve known all this for a while, but in Paris while sitting at the dinner table covered with a thin white tablecloth, I gained an appreciation that she has also become incredibly self-assured and well-spoken. Watching her with my mother, debating rather inappropriate topics for a sixteen-year-old and her grandmother, I thought WOW I want to be just like Anna when I grow up.

Anna and I have talked about going to Paris since she was a little girl – a girl’s trip to celebrate her sweet-sixteen. We invited all the women in the family to join us, but life is complicated for everyone and Mymom was the only taker. As disappointed as we were not to have the whole crew, it was lovely to have just the three of us on this adventure. Museums, long walks through the city, elegant meals, even a Segway tour (don’t ask Mymom about it – she’s still recovering). It was all perfection, but my favorite part was watching these two people that I adore debating each night at dinner. I came from one and created the other. Nothing is more amazing than that.

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This week has been busy with Smiles and Duct Tape getting out there. I’ve been distracted with marketing strategies and thank yous and begging for reviews on Amazon (not that I am doing that here), but I keep thinking about our magical weekend in Paris. I have two such strong, impressive (opinionated) women in my life. Lucky me.

Love, Jess

PS Anna still has a curfew. She might be mature and amazing, but she’s still only sixteen.

I’m gonna say it. It’s not appropriate or good parenting by any stretch. I can’t believe I am going to put this in writing, but her it goes — my daughter is my best friend.

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How to raise a great kid – HANDS OFF!

I had a super stressful dream last night. Not my typical, “I forgot to wear pants to the grocery store” dream. This was new and I woke up sweating.

I dreamt that I was having trouble with my college essays and not sure if I would get my applications done on time. I could read into it, but I think it’s pretty clear what my subconscious was trying to tell me — it’s time to relax and go back to HANDS OFF parenting Anna.

The truth is I’m usually a pretty hands off parent with Anna. Not to say that I don’t grill her after every party and open her report cards, but both Dan and I generally allow Anna to make most of her choices without too much guidance. Safety is (of course) important, but other than a curfew, she has very few rules (and even that is pretty negotiable).

It started when Jack got sick. Anna was only six years old and her family scattered. She went from having a father who was available every day to toss a ball with her after dinner and a mother who was always finding random excuses to show up at her school, to not knowing who would be home to tuck her in bed each night. She knew her family loved her, but she also knew that if she needed something, sometimes it was just easier to make it happen herself. Siblings of special needs kids have a perspective that their “typical” peers don’t.

Although I appreciate how fun it would be to helicopter around and watch everything Anna does while adding my two-cents, I just don’t have the time or the energy. If Jack needs me, it means he needs assistance with eating or needs his diaper changed. I can’t NOT do it. If Anna has a question about her homework, Google is faster than waiting outside of the bathroom door.

As IF I could help with her homework.

Don’t think that Anna’s not getting any attention from me. We talk and text throughout the day about everything from clothes to friends to our relationships with God. We have breakfast and dinner together (“breakfast” is her eating an Eggo waffle and me drinking coffee, but dinner is an actual meal that I have prepared). We are so close that we are starting to look like each other. When people see us together they call her “Mini-Me” and it’s not just that we look alike, our mannerisms and senses of humor are the same – it’s almost creepy.

We’re close – what I mean by HANDS OFF parenting is that I don’t micromanage her. I don’t watch over her constantly to make sure she is doing things just so. She needed to get her driving permit a couple of weeks ago and all I said was, “Great. Just ask around and tell me who to hire. I will make the first phone call, then it’s all you.”

When she was planning her course-load for junior year, instead of digging through all the choices, Dan and I just sat back and watched her come up with her perfect schedule. My only input was “I think I would prefer AP Art to AP Calculus, but if that’s your thing – have at it!”

We trust Anna because she has proven that she can be trusted. She is a great student and has a wonderful circle of friends. She makes good choices (mostly – she IS a teenager). She is kind to her brother and when I watch her interact with other people I am proud of who she is.

We’ve been so relaxed with Anna that I was surprised that Dan and I climbed on board the “college train” with such intensity. Looking through college books, long talks around the dinner table, planning trips to see schools. Perhaps it’s a distraction from NOT working on the project with Jack or maybe it’s just super fun because Anna has an impressive transcript —  And, maybe part of it is that Dan and I really, really, really want to go back to college ourselves;). But, I need to be careful. I’ve found myself checking Powerschool daily and questioning grades, looking at that giant book of colleges even when Anna isn’t home, thinking about essay topics and waiting anxiously for the next round of ACT scores. I’m getting dizzy with all the information and Anna is not appreciating the frantic input.

“Mom, you know I have this covered, right?”

Yes, I know you do baby girl. You have turned into a remarkable young woman and I know you will do amazing things. Mom will go back to HANDS OFF parenting. Just let me know when you need me.

And, when can we plan that trip to Virginia and North Carolina . . . and Boston – we need to go to Boston!dsc00726

Love, Jess

 

A Birthday for Bananz!

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There are no parenting books that recommend being friends with your teenager. We are always told that our responsibility as parents is to parent.

My problem is that I do so much parenting with Jack. I need to be ON all the time. Missing the medication or hydration could be disastrous, and when he needs a diaper change, he needs a diaper change. I can’t slack – not even for a minute (this is not completely true. I do slack, thanks to a wonderful team of people, but I need to arrange so that I can slack).

When it comes to parenting Anna, she tends to direct. She tells me when to call the SAT/ACT tutor and when I need to drive her to school. She announces when it’s time for a new curfew (THAT we did need to negotiate), but also knows when she needs to call it a night so that she has time to work on her summer assignments. And, although we spend many dinner conversations discussing Anna’s schoolwork, we are rarely asked to help or edit. It’s not just because she has surpassed our expertise in many subjects, it’s because she has always had to be independent.

This is not to say that we do not spend quality time together. Anna and I spend hours watching and discussing groundbreaking television (i.e. The Challenge on MTV) and pouring through high school gossip. Anna and Dan also have a close relationship. He isn’t as fond of the rumor talk as I am, but he and Anna can discuss history or lacrosse stats all day long. And, watching Anna snuggle with her brother is one of the most magical things on the planet.

Anna has turned out to be a remarkable human and I love being her mother/friend. I just look at her, and I am in awe. Brilliant, beautiful, patient, compassionate, kind and happy. Everything I ever hoped my daughter would be.

Dan and I get all sorts of credit for raising this unbelievable child, when the truth is that Anna really deserves most of the credit.

Happy Birthday Bananz!! Sweet 16!!!

Love, Mom

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The mischievous grin

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I sometimes forget that Jack can’t speak. He’s very much part of the conversation here on Clinton Avenue with his bright eyes and broad smile. Days can go by without so much as a thought about his lack of words. Then, something happens that has me desperate to climb into that brain of his and get some information.

Usually, the need for intel is surrounded with worry, especially when there’s a something brewing in his health. Fevers, pain, lethargy – not knowing the source of the problem can be both frustrating and potentially dangerous. And, sometimes it’s that I know something has happened, but I can’t figure out how. Like the mysterious bite marks that Jack came home with a few years ago. I kept showing him pictures of potential culprits, as though they were mugshots and not pictures of his classmates. All I got from him was either a blank stare or a giggle (there was finally a confession and his bus assignment was switched).

Now, thanks to Jack’s whiteboard and pointing power, we are able to get many questions answered without too much trouble. He can answer “yes” or “no” and even “ears” or “throat” when he’s not feeling well. It’s making life much easier, but still the answers that require broader explanations are hard to obtain.

The last couple of days I have been curious about what’s going on in Jack’s mind. He’s had the most mischievous grin planted on his face from the time he wakes up in the morning until he goes to bed. Last night I checked on him in the middle of the night, and there it was. The grin. Even while Jack was sound asleep, it was shinning up at me.

Every time I mention the grin to Jack, it grows even bigger. I’ve asked him about school and girls and funny jokes. I’ve racked my brain and nearly worn out the whiteboard with all my questions, but Jack’s refusing to share any news. He’s such a teenager.

I was thinking about how unfair it is that he’s not able to share what’s sparked this glittery mood, when it occurred to me that Anna doesn’t always share her life with me either. I swear some days Anna seems to avoid even glancing at me, as though she’s worried she might accidentally let something slip. She’s a great girl, and I trust any secrets are of the pure/legal/good-kid variety, but still I’d love to get some nitty gritty details out of her. Getting information out of teenagers can be a challenge, and now both my kids seem to have secrets.

I’m sure my friends with teenagers can relate. Us moms aren’t always advisors, counselors, friends. We’re sometimes just the cooks, chauffeurs, and wallets as our kids tackle (or enjoy) their lives without asking us for any input. It’s natures way, I just thought that my complicated boy would not follow this path. I though he would always be willing to share whatever he could, but this week I think he’s enjoying having a little secret. He seems to love all my eager questions and watching me suffer from ignorance.

Not fair — I share all my secrets with him. Oh well, at least I get to spend time with the grin.

 

Love, Jess

The Dancing Flamingo

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Those who have witnessed The Dancing Flamingo are always captivated. It’s not just unusual, it’s rather remarkable— considering the performer. For a child that can’t walk unassisted down a staircase (for fear of falling), I can’t explain how he manages a dance that requires so much flexibility, balance and coordination.

He starts by stretching tall. Getting so high on his toes that he looks like a ballerina. One leg suddenly bends (the knee goes higher than seems possible) and then he bounces. The dance is always paired with an electric smile and eyes that open wide and shine. The more excited he is, the higher the knee and the longer the dance. One Direction playing can set him into the routine within the first few beats of a song, and a visit from an old friend always gets him going – proving his memory is never at a loss. Anyone who has spent time with Jack since he choreographed his dance knows exactly what we’re talking about when we say, “The Dancing Flamingo”. There is no other suitable name.

On Tuesday evening, Anna arrived. As her and the Mackays (thanks for the visit and bringing her to us) pulled up the driveway, Jack was ushered from the cottage. He seemed excited, but when Anna got out of the car that leg bent higher than I’ve ever scene. And then he bounced and bounced as his sister ran up to hug him. Jack has been bouncing ever since.

Two weeks without our Banana was hard for all of us. One week at home going through the motions of real life and then a week here on beautiful Block Island. I thought that all the distractions of island living would soften the feeling that we were missing our family’s core, but it didn’t. Jack was definitely running a slower than usual and every time I mentioned Anna’s name he answered with question in his eyes.

When Anna arrived, she was full of so much love and so many stories. Outward Bound proved to be everything their web-site promised. I know that it’s time to start letting go of our girl, but our family is just too quiet without our heart. Now that she is back, I feel the blood flowing in our veins and we are ready to start our family vacation. I have a feeling we will be seeing a lot of our flamingo friend this summer.

Love, Jess

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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