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

 

 

Welcome Home.

I walked into my house Tuesday night and was greeted by Anna with a warm hug and dogs licking my face. Then I ran upstairs to see if Jack was still awake. The smile on his face lit up his room. Going away is great, but coming home is even better. Usually.

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Three days in Mexico with good friends and the warm sun, and I was relaxed and happy. It wasn’t until the morning that reality set in. Big time.

Dan is in Asia on business, so I arrived home to being a single parent this week. No worries – I was just in sunny Mexico – how can I complain? I was a little tired from vacationing, but nine hours of sleep and I woke up in the morning recharged and ready to get stuff done. I had my list of to-dos, breakfast for the kids organized and I walked upstairs to start our morning routine. I opened the door to Jack’s room and the first wave of reality hit me. Poop.

It wasn’t Jack. It was poor Keegan that had covered the floor with liquid gifts. Unfortunately, I didn’t have enough hands or minutes to add dog-clean-up-duty to my morning, so I quickly grabbed my boy, shut the door and continued with our routine  – shower, teeth, yell at Anna to get downstairs, clothes, medicine, breakfast, hydration, leg braces.

I kept Keegan close to us as we went through the morning motions and he seemed happy and comfortable. My Mexican attitude kept me calm. I managed to get the kids out the door and by 9:00 am I had cleaned up the poop, mopped the floor, and had started the laundry. I was ready to start fresh. No problema.

I made a healthy breakfast and sat down. It wasn’t until I had the first bite of my toast that I realized there was something wrong with me. Did I hurt my mouth? It didn’t feel right. Then I put my hand to my jaw and felt that it was swollen. I ran to the bathroom mirror and saw that my cheek and jaw was so swollen that I couldn’t see the ear on my right side. And it was growing.

I was forced to throw my entire day aside and raced to Urgent Care.

Apparently your salivary gland duct can actually get blocked. Often times it’s connected to an infection, but not in my case  (I’m just lucky).  It looks like the mumps, but only one side is affected so it’s extra startling to look at me. And, the pressure on my teeth, my ear and my head are intense. I go to another doctor today to find out when/if/how to treat this. Until then I will try to remember the sun on my shoulders and stay away from the mirror. Tan chipmunk is my current look.

 

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Monday

 

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Wednesday

I am trying really hard to keep a good attitude, but if one more thing gets added to my plate or my face, I may have a full blown nervous breakdown.

Love, Jess

P.S. Keegan seems much better. He did have one more episode, but has been good now for about 20 hours – although he is currently mad at me for only feeding him rice for his last two meals.

HAPPY BIRTHDAY DANO (AKA FATHER OF THE YEAR/GREATEST HUSBAND ON THE PLANET)! PLEASE HURRY HOME. WE NEED YOU!!!!!!!!

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When “Thank you” isn’t enough – THANK YOU!!!!!

I hope everyone had a great Thanksgiving. Four days on Block Island in a house full of family, has us all feeling super grateful (and maybe a little exhausted). All things considered, we are one lucky family!

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The support our family has received over the last ten years has been amazing and with the release of Smiles and Duct Tape, it’s all been magnified. I’ve been receiving notes for the last two weeks from friends and family and strangers who have stumbled on the book. I’m so touched by the kind words and thrilled that the book is finding an audience.

The words “thank you” aren’t really enough, but THANK YOU!!!

If you are local, please join our family at WORDS for a reading/signing/Q&A this Thursday, December 1 at 7:30. I can’t promise that I won’t be super nervous (and I will definitely end up in tears at some point), but at least I can THANK YOU in person.

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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Thank yous and big news.

Jack would like to thank everyone for all of his birthday wishes. He had an amazing day and, in typical Torrey style, he’s planning on celebrating all month!!

 

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We’ve had other exciting news here on Clinton Avenue and I’m finally ready to share it. Drum roll please . . .

Smiles and Duct Tape THE BOOK is going to be released this fall. I’ve been working on the project for over five years and I can’t believe that the finish-line is approaching. I received my edits from the publisher last week and we’re busy sorting out the details about the cover art. Holy smokes – this is really happening! I’m honored and excited and a whole lot of scared.

What happens when your world falls apart? Do you simply lay down and take the blows, or do you try to figure out a new way of living? When our son, Jack, was first diagnosed with a rare disease, I wasn’t sure that our family would survive. And, once we realized that life would never return to “normal”, I questioned if it was realistic to strive for ever really being happy again. It took us a while, but thanks to the help of our friends, family, doctors, teachers, neighbors, and a lot of smiles, we managed to mend our family. It’s like we’re held together with duct tape – not pretty, but super strong.

We don’t have the release date yet, but I’m hoping that everyone will have a great go-to gift idea for the holidays. Who doesn’t want a memoir about a ALD family for the holidays?

Love, Jess

 

 

“special” moms

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What happens when you put 8 special needs moms at a table? You hear a whole lot of swearing and laughter.

Last night I went out with a group of moms to celebrate an incredible woman who is leaving HHS (she’s not a special needs mom herself, but she gets us and we miss her already). The mood was mixed as we arrived — goodbyes are never easy and change is particularly hard for us special needs moms. Our friendships vary from close to barely acquaintance, but we all share one thing – being the mom to a special kid (or two).

The hostess showed us to a table in the back of the restaurant, where we were less likely to bother other patrons. I guess a table full of ladies always has the potential for loud voices and racy chitchat. Within moments of sitting down, several conversations started at the same time. Far from the discussions I have with my “typical” mom peers, that center around our kids GPAs, prom, college applications and juicy town gossip, most of the discussions around the the table last night were about guardianship, social security and how many seizures in a day is normal in our given homes.

Such different words, but the tone felt similar to any other moms’ night out. I imagine if you couldn’t hear the particulars of our conversations, we looked and sounded just like any other group of middle-aged women. And, once we got settled and the wine got poured, the laughter started.

I’ve never had many “special” mom friends. Remember – Jack was typical until he was eight. By the time our family was thrown into the special needs world, our dance card was full. Besides, I didn’t think I could possibly have much in common with a group of women I felt vaguely sorry for. I figured they must be so sad all the time and overwhelmed and have no time for anything except doctoring and complaining.

Then, one day I realized that I WAS a special needs mom. I’d earned my title and I wasn’t completely buried under the job requirements. Perhaps there were others like me. Other moms with special kids who were still living life and wanted friends who understood them in a way that their typical friends couldn’t.

I started slow and found a couple moms at our last school and was amazed to discover that they were just normal women who happened to know the difference between a grand mal and an absence seizure and what the letters AAC stood for . I had a lot in common with some and absolutely nothing in common with others – just like “typical” people. Amazing!

It’s taken some time, but I finally have a little circle of women that I can call my friends who know one side of me that’s still foreign to most people in my life. We can bounce off ideas about alternative therapies and strategies for shaving/haircutting/and all-around-grooming our teenagers AND we can bitch about our husbands (not me Dan, it was the other ladies) and talk about our new diet plans. AND, we can laugh about (almost) all of it!

I left dinner feeling lucky that I’ve found this group of ladies. I wish it hadn’t taken me so long to realize that “special” moms are just “typical” moms with more patience and a better sense of humor. I look forward to my next “special” moms’ night out!!
Love, Jess

I did learn a few things last night. Wondering what words you should never use? “Retarded” and “normal”. What words are A-OK with special needs moms? “Intellectually delayed” and “asshole”.

Life is work.

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Every time I think I have a handle on this new life, it slips out of my grasp.

The last couple of months I have been getting a little cocky. Feeling like nothing was getting me down and I was managing so well. I got through the holidays without procrastinating on my Christmas cards or forgetting a gift. I was looking forward to my spring art classes with new lessons and an eager attitude. I was averaging 15,000 steps a day on my Fitbit. I even started a new writing class, determined that 2016 was the year of getting published. I was on top of the world.

Then, things started falling apart. I’m not sure what happened, but I am fairly certain that full hours were snatched from my days. I couldn’t seem to sleep enough or get even half of my “list” done on any given day. My pile of bills started mounting into a tower in the office. Laundry seemed to never leave the heap on the chair in our bedroom. The kitchen sink was always full. Every room of our house had a reminder that I was losing a battle.

What do I do when I’m overwhelmed and feeling nuts? I pretend. If anyone asks – “I’m doing great!”. I walk around with a big smile and hope that conversations don’t get too deep so that I’m not forced to reveal anything. The last thing I really want to do is to talk about feeling that I’m losing my grip. I’m Jesse – I’ve got this.

Of corse there are hints. I don’t return phone calls, I drink more than I should, I avoid anything involving intimate conversation. I can easily disguise my mood from most people, but my close friends and family usually pick up on the signals. Dan has been asking “You okay?” so much that I started feeling kinda bad for him.

Time for a change.

This week, I’ve been avoiding the vino, tackling the laundry, sorting through the pile on my desk and searching for whatever it is that’s gotten me out of sync. It’s going pretty well, but have you ever noticed that laundry and bills are never really done?

 

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One of the things I do to keep myself on task is I write with a friend every Thursday morning. She and I have been devoted for two years to our Thursday morning ritual of meeting online, selecting a topic and diving in to a 30 minute “flash” writing session. Once we’re done, we exchange our work and then catch up on our lives. She and I have become quite close, although we’ve never met in person (we met while taking an online writing course two years ago). I think sometimes those anonymous relationships allow us to be more honest. She knows almost as many of my secrets as Jack does.

Yesterday morning she asked if there was anything on my mind. “Keeping up with change” was the subject I came up with. It was easier to suggest than, “I think that life is swallowing me.” She and I each poured our coffee and told each other that we’d be back in 30.

The beginning of this piece is what I got through. I’m always amazed how writing can help me better understand what I’m feeling. Once I find the words, my mood always seems to improve. Now, I just need to sort through what put me into the sour mood so I can avoid it happening again.

The “C” word (college) keeps coming up and it’s certainly not helping, but I don’t think that’s all of it. I think I’m just feeling overwhelmed with normal, every day, I’m a grown-up shit. I won’t play the ALD card here.

Just because you have BIG crap going on doesn’t mean that the SMALL crap doesn’t bother you too.

My writing friend has a great way with words. She ended her note to me with “Life is work, and boy does that work take time.”

Indeed.

Love, Jess

First Twitter, now this

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It’s adorable. I keep finding my almost 50-year-old husband sitting at the computer yelling, “You’re not gonna believe who I just found!”

Dan has taken up social media. Perhaps it’s his version of a mid-life crisis. I’m not complaining — It’s way cheaper than a new car and much nicer (for me) than a young girlfriend. It started with Twitter a couple of months ago. He swears that it’s just for “real time news”, but he seems much more in the know about celebrity gossip these days. Then, over the weekend he asked me to help set him up on “The Facebook”.

I thought he was kidding. Dan’s not just been one of those people who didn’t care about “The Facebook”, he resented it. Dan’s old school. A vinyl guy who thinks that the written word (on paper, in ink) is somehow superior. He’s still offended by losing the extra space after a period and HATES that his daughter doesn’t use punctuation to complete a text message.

But, I was curious enough to see what Dan was planning, that I set up a page and showed him the basics. He dove right in. Within a couple of minutes, I could hear him from the other room – giddy as he found old friends. The sweetest thing I’ve ever heard. He poured through his friend’s pages searching for familiar names. He went from, “I’m just looking for some particular people.” to “Did you know how many people are on this thing?”

Downloading old pictures is where he is now. He started with a few family photos, but then he stumbled on some old albums. Now he’s reliving his youth, one photo at a time. Wilton days, Block Island shenanigans and college. Many of the images are not oriented properly and I did tell him that maybe he should make some albums so that he avoided taking up news feeds. “But WHO wouldn’t want to see this stuff?”

I felt like his mom yesterday when I sat down at the computer and found that his Facebook page was opened. It was like that day when I accidentally found that Anna left her iPhone at home (It’s not snooping, just checking). I looked at all the old photos – so many great memories, but there were a few pictures that made me pause. I gave Dan a call and suggested that some of the images might be a little inappropriate for a broad audience, “Dan, if you wouldn’t want Jack and Anna to see it, it’s shouldn’t be on Facebook.”

I’ve used a similar line with Anna, “If you wouldn’t want your grandparents to see it . . . “. It hasn’t always worked with Anna and I wasn’t convinced it worked for Dan, so I found myself doing a little “editing”.

When Dan got home yesterday he told me that he heard what I was saying and that there were a few pictures we was going to take down. I quickly confessed that I had already taken care of it and promised not to do it again, “Unless you start making bad choices.”

WHEN did I become this wife? If I’m not careful, he’s gonna unfriend me.

 

Love, Jess

A dead iPhone and a new goal

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Thanks to a dead iPhone, I finally have my goals set for 2016.

I only read books in the summer. I need to be in a folding chair, with sand between my toes, sun on my shoulders and the sound of the ocean in the background. I’ve tried to read at home in front of the fire, but I instantly fall asleep. And reading in bed doesn’t work for me either. The bed is for other activities — like television.

Of course I read a ton of blogs and magazines, and I never let my need for sand hold me back from the latest bestseller. When I’m not on the beach, I listen to audiobooks as I walk. It gets me and the dogs out of the house, puts steps on my fitbit, and lets me get lost in a good story. It also allows me to avoid too much thinking. I like to leave wandering thoughts for when I sit down with my journal or this blog.

This morning something horrible happened while I was out on my walk. Two miles from home, my iPhone died. I stopped in place, staring at the screen and didn’t know what to do. I thought about calling Dan to pick me up, but my iPhone WAS DEAD! Two miles takes me about 40 minutes. 40 minutes to think. I took a deep breath and decided I would take the opportunity to think about my goals for 2016.

The usual suspects came easily to mind. More walking, less drinking, getting published (my fingers have been crossed for so long that it hurts), less carryout, more kale. This list took me less then a minute. 39 minutes to think a little deeper.

It took a while, but I think the walk allowed me to come up with something. Here it is – my goal for 2016 – SLOW TIME.

I’ve spent most of my life looking forward. Looking forward to the weekend, to the next vacation, to the next paycheck. I would like to start living more in the moment. Appreciating every slow Tuesday and every quick conversation and every little hug — especially from my kids.

When Jack and Anna were babies, I felt so buried in sore boobs and laundry that I loved hearing from older woman who told me that “the years would fly by”. That sounded pretty good to me. I fantasized about the day that I could throw away the pacifiers and rid of the baby gates. Once that day arrived, I looked forward to the first day of preschool and watching the kids learn to read. That day came and went and  I was already gearing up to lose the carseats and start planning adventurous family trips.

Life, of course, didn’t follow the path exactly as expected. It wound around and filled with experiences. Not all were welcome, but I proud of where we are. Now, I find that I’m on the other side of the “years flying by” equation and I’m worried that it’s all going too fast.

I’ve got two teenage children with very different futures, but they are both speeding towards adulthood. Jack’s cord may stay closer to home, but even he will find some sort of independence. My days of raising little (big) kids is numbered.

My goal for 2016 is to learn how to slow the momentum. I think I can do this by learning to breath and taking time to appreciate more. Probably not every moment, but all the moments that don’t include poop or sassy teenage chatter (although if Jack wants to give me some sassy teenage chatter, that’s okay).

Love, Jess

HAPPY NEW YEAR!!

 

46 ain’t so bad

There is nothing sexy about being 46. You’re neither young and spry or old and wise. You still need to cover your gray and squeeze into skinny jeans, but you can’t really compete with the 20-year-old crowd (or the 30-year-old crowd). You’re just middle-aged. But here I am, and I’m doing just fine.

I’m not sure when I’ll get used to the increasing amount of lines on my forehead or how my legs crack when I stand up after sitting on the floor, but I feel blessed for the life I woke up to this morning.

A gentle kiss on my cheek from my husband with a “Happy Birthday” whispered in my ear. Then my sweet Banana came tiptoeing into my room and crawled in my bed to give me a birthday hug. As she left the room, I noticed that she had slipped a note under my pillow. I would share what she wrote, but I can’t – 1. She would kill me 2. It’s mine and I don’t want to share the magic. Jack can’t sneak into my room or write me sweet notes, but he did share his brilliant smile when I walked into his room this morning. He knows it’s his mama’s birthday.

It’s not just my family that warms me, my friends are an incredible bunch. I’ve always heard that when learning a sport you should practice with better players. I’m not an athlete, but I’ve always thought of this when choosing friends. Since I was a little girl, I’ve managed to surround myself with people who teach me, encourage me and make me want to be my best.

Not that my friends have been a group of saints. “Best” hasn’t always included intellectually interesting endeavors, or even healthy activities, but my friends have always been an assortment of people who I find remarkable. I just had a great lunch with a dear friend (thanks Kim) and look forward to celebrating more this weekend. And, thanks to technology, friends from all over my life have remembered my birthday. I’m feeling extra loved.

Lately I’ve been watching the two generation on either side of me and wondering where I fit. My parents and in-laws are spending their retirement years traveling so much that I have trouble remember where everyone is on a given day. And, Anna and her pals get to enjoy the benefits of teenage life, where their only real priorities are working hard in school and make it home before curfew.

Sometimes, I feel a little buried under the responsibilities of being a middle-aged grown-up, but today I’m just trying to enjoy the fact that I’ve accomplished quite a bit in 46 years AND hoping that I have another 46 or so years to go.

Thanks for the Birthday love! I’m a lucky (kinda old) gal!!

Love, Jess

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