I apologize to anyone who was at the Millburn CVS on Sunday. All the pharmacist said was that our prescription would not be ready until the next day. She didn’t know that it was my third attempt to pick up … Continue reading
Rainbows and Poop
Author Archives: smilesandducttape
It shouldn’t be a secret
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!
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
DecemBLUR Magic!
We’re off for a week in Miami to visit my older brother, Pablo, and his family. Dan, Jack and I are beyond excited with the idea of getting out of town for the holiday and spending time with family in weather over 30 degrees, but Anna gave me a little bit of a hard time, “We’re gone on Christmas? What about Santa?” I did hesitate for a quick minute before realizing that she was more concerned about missing fun parties than the old man with a white beard not being able to find her stocking.
The truth is that I don’t think our children ever believed in Santa Clause.
And I can’t even blame ALD. Long before ALD entered the equation, our kids were realists. They went through the motions, but they weren’t fooling anyone, “Mom – it just doesn’t make any sense.” It’s as if they came into the world a little jaded.
Or, maybe it’s just that Dan and I were too lazy to create a truly “magic” holiday.
Sure, we’ve always gotten a tree and decorated the house. We even put out cookies every year – and carrots for the reindeer. But, Jack and Anna always knew it was a charade. They went up to bed early on Christmas Eve without a fight so that Dan and I could set things up for the morning, and neither could really mask their rolling eyes as they saw the plate of half eaten cookies and the note left from Santa (even since ALD, Jack can still roll his eyes when he needs to).
Dan and I love family time and creating traditions and memories, but we aren’t very good at all the hocus-pocus required to create real holiday magic. Once we get through the planning and the cards and the gifts and the decorating, we’re too exhausted to keep up the performance. We also have done a terrible job at focusing attention on the religious stories behind the holiday. Yet another thing we have managed to mess up.
Despite scaring our children by not fulfilling our parental duties, we do appreciate the holiday season around here. More then the trees and lights and candles, it’s the holiday feeling that I most appreciate. Opening the mail every day and seeing whose faces are hiding in the envelops. The music that is always lingering in the air. How (most) people take an extra moment to thank you and wish you a “Happy Holiday”. With all the ugly in the world right now, a pleasant moment with a stranger can be a pretty magic thing.
Try to pause for a second this DecemBLUR – look past the lights and the trees and appreciate all the real magic that is around us.
Wishing everyone a very MERRY, HAPPY and JOYFUL season!
Love, Jess
I want to be like Harry’s mom
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
A Room Full of Duct Tape
I’m not sure of the best word to describe Thursday’s reading at WORDS – but unreal and overwhelming keep coming to mind. The reading took place in the basement of our local bookstore (that makes it sound depressing – it’s … Continue reading
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!
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
What I realized while in Paris
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.
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.
B Nice
The Eagle has landed. Smiles and Duct Tape has been released. It’s out of my hands and out there for all to see – and read – and judge – AHHHHHHHHH!
I have lived my life trying to keep expectations low. If you strive for an A and end up with a B, you’re disappointed. If you strive for a C and end up with a B, you’re thrilled. I‘ve been a solid B most of my life and proud of that accomplishment. I pat myself on the back almost every day. Even days when I’m making dinner still unshowered in my yoga pants, if my family made it through the day and is being fed, it’s been a successful day!
Smiles and Duct Tape is the first time that people have rather high expectations for me. I do think that my writing has improved over the last ten years, and I’m proud of my 500 word essays on this blog, but the book is 49,000 words – in a row, it’s about the worst 1000 days our family has ever been through, AND I’ve never written a book. I hope people are looking for a solid C performance and give me a big high-five when they discover it’s a B, maybe B+.
If you read Smiles and Duct Tape and enjoy it, I encourage you to write a review on Amazon and/or Goodreads. If you read it and think I should stick to 500 words at a time, please keep that information to yourself.
The book is currently available at Deeds Publishing, at our beautiful local bookstore WORDS, Amazon (paperback and eBook) and my basement. Please contact me for quantity purchases (i.e. book clubs/super fun holiday gifts for the whole family) and I will give you a deal.
Love, Jess
Guardianship – Jack made it easy(ish)
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.
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)
Jack makes things easy(ish)
smiles and duct tape 