Birthday love



Today our family celebrates John Redmond Torrey’s 9th birthday. Yes. I know that Jack was born nearly 18 years ago,  on August 5th, 1998. But on May 30th each year, we celebrate the day that Jack was given life – again. Today is his “other birthday. “

Nine years ago, Jack was living at Morgan Stanley Children’s Hospital in NYC. He had been diagnosed with Adrenoleukodystrophy just one month earlier. Thanks to our team of amazing team of doctors and nurses, he received a stem cell transplant from an anonymous donor. The entire procedure took less than 15 minutes. In keeping with Jack’s relentless attitude and irrepressible spirit, we played Aretha Franklin and danced and laughed in his hospital room as the stem cells slowly dripped into his arm…. and eventually gave him a new life.

That was nine years ago. Now my son is a happy and healthy teenage boy. The same old Jack – just taller, and with more and more with facial hair. I am so so proud to be his father. And so thankful for every day that we have him in our lives.

Jack — I love you very much!

Love, Dad

What’s NVRN spell? Nothing.


This is the smile that gets me through the hard stuff.


At my tennis lesson last week, I saw a young woman who looked familiar. She was a little older than Anna, and I was having trouble placing her. I went back to trying to focus on my forehand when it hit me, “Hey. Did you happen to go to Morrow Preschool?”


Suddenly I could picture this slim young woman as a little girl a dozen years ago, with rosy cheeks and a glowing smile, playing with Jack on the playground at their preschool.

“You were in my son Jack’s class.”

“Wow. I’m not sure I remember him. Does he go to the high school?”

I sometimes freeze when I get hit with what’s happened. Maplewood is usually a safe place, where everyone knows our story. Where I don’t need to say things out loud. My stomach turned as I tried to choose my words so that we could simply go back to groundstrokes and drop shots, “No. Jack goes to a special school. His life’s kinda complicated.”

Now that we were both feeling awkward, I wished I hadn’t started this exchange and quickly looked for a transition. Her sweatshirt was bright and new with the name of her future, WESLEYAN, “You’re a senior this year? Heading off to Wesleyan in the fall? That’s wonderful.”

That’s all it took. Her smile grew, as she went from wondering what happened to her old classmate, to thinking about the adventures that lay ahead. We were both allowed to continue with our lesson, focusing on easier things than how complicated life can be.

When I got home from the lesson, I went into Jack’s room to say goodnight. He was sitting up in bed, and as soon as I walked in the door, he gave me a big smile as if he’d been waiting for me to tuck him in. I gave him a kiss on his forehead and laid him back down. As I covered him up, I realized he was wearing the bright purple NORTHWESTERN sweatshirt that we’d gotten him last year while visiting my parent’s alma mater.

The sweatshirt is missing all but 3 1/2 of it’s letters. Jack has somehow managed to eat the rest. He has eaten the O,R,T,H, most of the W, E, S, T, and E.

I can’t make this stuff up. It is a college sweatshirt that’s missing the college.

Love, Jess


Everyone poops



I’m fairly certain that Jack identifies himself as a male, but he never thinks twice about accompanying me into the Ladies’ Room. And, even if the visit is for me, he joins me in the stall because I cannot trust his decision making if left alone, even for a second. It’s not easy, but it’s our reality.

Over the years, there have been times that I’ve been questioned by strangers, even scolded. Just a few weeks ago, I got a tap on my shoulder followed by a, “He looks FAR too old to need to be with his mother.”

Although I was tempted to mention that she looked rather old and cranky, I took a breath and simply explained that my son was “special” and couldn’t safely be left on his own. Then I locked my teenage son and myself into a small stall so that I could poop.

Not sure why there is so much concern over where people do their business, but I want to share that our family has been making our own toilet rules for a long time and we think people should get over their fears. If anyone ever refused to let Jack and I use the bathroom of our choice, I would have a simple solution, and it would require a lot of bleach to clean up.

Love, Jess

We do support a law banning guns from all bathrooms.






It’s a bird. It’s a plane. It’s Jack!

Poor Jack. His life is so limited.

It’s such a shame he needs to go to school every day. He probably just sits there, staring at the clock, hoping for time to pass quickly.

OR, He gets to fly across a stage!



Jack’s school mom, Monica, sends us pictures and videos almost every day of his school adventures. Yesterday’s was particularly amazing. Jack just might be the luckiest kid on the planet!

No need to feel sorry for our boy;)

Love, Jess

Mother’s Day – to Club or not to Club?


Our last brunch at The Club. This was BEFORE the meal.


Brunch is a lovely invitation, especially for Mother’s Day. The idea of not being responsible for the cooking or doing the dishes is always welcome. And who doesn’t love being showered with a little extra love on Mother’s Day (while getting to spend it with Mymom)?

So when my folks called to extend an invitation for Mother’s Day Brunch at their country club, my first reaction was a smile, but quickly my mind started to race.

Does Jack’s sports jacket still fit? I’m fairly certain that he ate his last tie. Could use one of Dan’s? I wonder if he could reach a bow tie with his mouth. Does Target sell bow ties? I’m not spending another $80 at Vineyard Vines for a single-time use.

Then, I started thinking about all the other pitfalls that might be lurking at the country club. We’ve enjoyed many wonderful times there, but Mother’s Day is sure to be a scene, and that just adds to potential problems we could face. A simple outing for brunch can be complicated for our family, especially when there’s a coat and tie involved.

The diaper bag needs to be packed. We’ve changed it’s name to “The Satchel of Freedom” (thank you Peter). The new name focuses the attention on the fact that the bag allows us to rome free, but it’s purpose remains the same. It’s full of diapers and wipes and a change of clothes. The change of clothes includes socks. When Jack goes to the bathroom, it’s not uncommon to require a FULL set of new clothing. Do we have a another set of “fancy clothes” to fill the satchel?

This brings me to the next concern when going out for a meal with Jack. We need to consider the bathrooms for any needed “costume changes”. When Jack was a little younger, I could get away with bringing him into the Lady’s Room and sneaking into the handicap stall without attracting too much attention. At seventeen, Jack is harder to sneak in without creating a lot of puzzled looks. People try to be polite, but I feel the stares as I start to walk Jack toward the bathroom. His hopping gait doesn’t help staying inconspicuous. Sunday at The Club might be crowded. Is there a private bathroom hiding somewhere?

Yikes! Sunday is going to be really REALLY crowded.

A big crowd means that they might squeeze in extra tables. Now that Jack has added hopping to his repertoire of behaviors, if tables are too close together, he tends to knock against people causing quite a scene. It’s particularly awkward when he bumps a table and then tries to snatch a piece of bread off a stranger’s plate. Dan and I have both learned many funny one-liners to try to apologize for such instances, but it’s still not fun.

This isn’t going to work.

“Let’s definitely get together Sunday, but is there any chance we could go somewhere else? Somewhere Jack friendly.”

Mymom gets it. Although she loves showing off her grandchildren, she has helped more than once assisting in a complicated clean up, and she understands that Mother’s Day may not be ideal at a crowed club.

I made a reservation for an early dinner at a local restaurant that has broad isles between tables and large, private bathrooms. We will get ready early in case of any unexpected delays, making sure Jack is wearing dark colored pants to mask any spilling/leaking. No jacket or tie required. The Satchel of Freedom will be packed and ready for any unfortunate events and we will draw straws to see who gets to feed Jack.

I’m much more relaxed with this new plan, but we never leave the house without crossing our fingers. Going out with our boy is always an adventure.

Happy Mother’s Day!

Love, Jess