Tag Archives: family

Welcome Home.

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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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Now really matters

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Remember when Facebook was a safe place to scroll through photos of old friends and cute puppy videos? Now I find myself taking a deep breath before sitting down at the computer and diving in.

Apparently, our family has been living in a bubble. A beautiful, diverse, inclusive bubble. A place where all people are accepted and we all believe in science (climate change is a FACT). Where everyone feels safe and neighbors are always there the help or lend some sugar. Where you walk down the street and you are greeted with smiles and hellos. Where teenagers get busted for their parties because they recycle their empties (true story – it’s happened more than once. Teens here risk getting grounded just to be Green). It’s called Maplewood. I’m not saying that our town is perfect, but it’s pretty darn close.

Unfortunately, the last two weeks have made it clear that some people in our country really want to pop our bubble. I’m getting scared.

Building walls, defunding NPR and the National Endowment for the Arts, potential (very conservative) judicial nominees, changes to immigration, Sessions, DeVos. Politics used to be background noise in my life and now it’s center stage — there’s so much information – my brain is spinning!

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It takes a lot to get me to talk about politics. Part of it is that I want everyone to love me and being opinionated can discourage love, but the biggest reason I’ve avoided political talk is because I don’t want to be questioned. I know what I believe, but have always been a little fuzzy on the details necessary to have a chance of winning a debate.

Now that Facebook has gone from being a fun place to a scary civics lesson, I realize that it’s time for this mom to start being informed and prepared to defend her beliefs. Anna and I marched together in New York last weekend. It was a beautiful day and the energy from the crowd was like nothing I’ve ever experienced. Thousands of people marching as one. Marching is a good start, but walking with sweet signs is just the beginning. I have a feeling this is going to be a long road.

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This blog is about our family. Our family is the one thing in the world where I AM an expert. I am not an expert when it comes to politics, but I do know when I feel that my family is at risk – when the country that I treasure is at risk. I have done a lot for my children. I have fought with doctors and insurance companies (even an occasional pharmacist), but fighting for my children can’t stop now. Now really matters.

Love, Jess (the mother of a strong, independent young woman and a teenage boy who has special needs and more “preexisting conditions” than I can count. Oh, and a human that loves the arts, choices, our melting pot and our planet)

It shouldn’t be a secret

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If you’ve come to our house lately you may have noticed some changes. There are signs all over food in our kitchen saying “JACK ONLY” and there’s a lingering smell in the air. We had someone working on the alarm … Continue reading →

GOODBYE 2016!

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I’m pretty sure all of us feel that 2016 hasn’t been quite what we expected. Years rarely live up to their promises, but this year has been particularly tough. So many heartbreaking losses. And, I don’t just mean the folks … Continue reading →

I want to be like Harry’s mom

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Twenty years ago (years before I was even pregnant with Jack), I was a middle school art teacher in a suburb on Long Island. One day, the principle asked me to come down to his office to discuss something. He told me that there was a boy in the district who was profoundly autistic. He wasn’t mainstreamed in any classes, but he really loved art. The principle asked if I would be willing to have the boy join my seventh grade class.

I didn’t know much about Autism, but I did know about tenure, so I nodded my head and said that I would love to.

The next day I was introduced to Harry. Harry could barely speak, couldn’t look me in the eye and had a host of very unusual behaviors. Initially, I thought HOW is this going to work? I was a new, inexperienced teacher and had 26 other seventh graders in the class – seventh graders!

I was surprised and delighted that over the next couple of weeks I didn’t just get used to Harry and his quirky behavior, I kinda fell in love with him. There was something magical about the way that he was able to tune out the chaos around him and focus on his work. And, the feelings where mutual — before long, part of Harry’s daily routine was to stop by my classroom several times a day to hug me. Long awkward AND awesome hugs.

As Back to School Night approached that year I was super excited about meeting Harry’s mom. I felt like I needed to tell this overwhelmed/exhausted women that she was doing a great job – that Harry was a great kid. I was going to make her day.

The night arrived, and as my seventh grade class of parents filed in, I scanned the room for Harry’s mom. I’m not sure what I was looking for but I was certain I didn’t see her. There was not one person in the crowd wearing a “I’m a special needs mom” hat. I was disappointed, but moved on with my “Why Art is the most important subject in your child’s curriculum” speech. When it was over and the class started to empty, a woman walked up to me and introduced herself, “Hi, I’m Harry’s mom”

I was floored. She’d been there the whole time and I hadn’t recognized her. She wasn’t at all what I expected – she was showered and had make-up on. She was even smiling. I paused a little too long and then made things worse by hugging her and telling her how much I adored her son and great I thought she was. That hug made Harry’s hugs seem pretty normal.

As she removed herself from my arms she said, “Thank you so much Mrs Torrey. THAT is great to hear, but I know how amazing Harry is. I’m not just a special needs mom – I’m Harry’s mom. Harry’s life might be a little more complicated than his peers, but I have always tried to not let Autism take over our family. I have other kids, I have a job and a husband and friends. If I let Autism define us, I am letting Autism win.”

I’m not much of a believer in “all things happen for a reason” but Harry’s mother’s words have stayed with me for over twenty years.

When Jack got sick and it started to become apparent that his disabilities weren’t temporary, I remembered that day meeting Harry’s mom and thinking that if I could just keep her attitude my family just might survive.

Love, Jess

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

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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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Guardianship – Jack made it easy(ish)

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I guess there are worse reasons to take your eighteen-year-old son to court, BUT today was a tough day.

When a person turns 18, they legally become an adult and are expected to make decisions about their life – medical treatment, finances, education, etc. Guardianship is a legal proceeding in which the court is asked to find the person in question unable to manage his/her affairs effectively. A guardian (or guardians) is/are appointed to make all decisions on behalf of the person.

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Today Dan, Jack and I went to court to prove to the State of NJ that Jack is too disabled to care for himself. He is too limited to make decisions regarding his care and well-being. He is (and will always be) dependent on us. Heartbreaking.

Like most heartbreaking things having to do with Jack – it was Jack that made it bearable. He was in a great mood this morning as we got him scrubbed and ready to make a good impression on the judge. He smiled the whole way to Newark, eager to see his buddy Adam (our lawyer) and to meet a few new friends. Jack always loves an adventure.

When we told Jack it was going to be like Law and Order he didn’t seem impressed, but when Dan said, “I wonder if Judge Judy works here”, our boy laughed and laughed. It’s hard to take things too seriously when you have Jack chuckling next to you, but when we needed to go in front of the judge, I could feel the tears start filling my eyes.

Everything went off without a hitch. We just needed to sit as the judge read through all the paperwork – proof that Jack needs us to be his legal guardians (doctor’s notes, school information, interviews with us and others who know Jack). I did my best to ignore the details of Jack’s limitations get repeated over and over again. I’ve developed a talent of keeping a smile on my face and nodding politely as I block out information. Dan’s bruised hand was the only evidence that any of the words actually made it to my ears.

I’ve accepted Jack’s challenges and understand that, as a special family, we need to do this stuff. The only thing that really bothered me about the whole experience today was the use of the word, incapacitated. It was used through the hearing over and over and over again.

incapacitated
(adjective)
 Ivan did not expect to be incapacitated for more than a few days: disabled, debilitated,           indisposed, unfit, impaired; immobilized, paralyzed, out of action, out of commission,    hors de combat; informal laid up. ANTONYMS fit.

I know that words need to be attached to circumstances, but of all things to call Jack — incapacitated is not one I would ever use. He’s more full of life than anyone I know. I understand that he needs (and will likely always need) our care, but as I heard that word I couldn’t help but want to stand up and scream “I OBJECT!”

I didn’t – I played the role of calm mom and didn’t even let myself even cry until I kissed Dan goodbye and dropped Jack safely off at school. I am so #$%^ing glad that it’s over.

Love, Jess (proud guardian of JackO)

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Jack makes things easy(ish)

Morning Selfies

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Every morning Jack and I take a selfie. It’s a gift we give ourselves for surviving the morning chaos.

I’ve described our mornings before, but here’s the short version — teeth, toilet, laundry, shower, get dressed, toilet, downstairs, dogs, medication, hydration, waffles (don’t judge), say good-bye to Anna, toilet (often followed by cleaning the bathroom floor), shoes, jacket, breathe AND sit on the stairs and take a selfie.

This morning’s routine was particularly messy and Jack and I were feeling a little discouraged until we looked at some of our most resent masterpieces. Jack can always turn a sour mood around with his smile – and his scrunchy face.

 

Happy Friday!

Love, Jess

 

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another week walking on eggshells

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Good news, bad news.

I will start with the bad so that I can end on a high note (that’s my thing, in case you haven’t noticed).

I had a mild freak-out last week and asked my poor publisher to make some changes to the manuscript. It may have been my way of delaying the production of SMILES AND DUCT TAPE – it’s been hard for me to let go of this project. Anyway, it worked. We’re about a week behind with the release of the book.

The good news is that the book is now with the printer and it should be in your hands by the end of next week. It’s not too late to pre-order – CLICK HERE!

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Now I can spend another week walking on eggshells.

I’m guessing all first-time authors are nervous as they brace themselves for the public’s reaction to their writing. Add that I’m a girl who couldn’t really read until fifth grade AND I was not born a writer — just ask my high school English teachers. I feel almost ridiculous adding the title of author to my resume. And, it’s not just my words that I’m worried about releasing for judgment – it’s my family. I’m hoping that people find our story inspiring, but who knows . . .

It’s too late now. The book will be out there soon and, whatever happens, our family will survive. THAT is one thing that I can always count on.

Love, Jess
I promise that I AM NOT looking at the book again – no more delays.

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