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