a ski weekend, the Jack Pack, and next year


Just getting back from a ski weekend in Vermont with friends. Over the years we’ve done a lot of these weekends. We rent a house with a few families. Most everyone skis, but there are always a couple of people who linger with me and Jack. Our days are filled with quieter activities, but we always manage to have fun.

Each morning the house scrambles to life as the kids all frantically run around searching for their gear while the parents try to get some breakfast into everyone and make the lunches for the mountain. Depending on how late the previous night’s festivities went, the skiing crew heads out the door between 9:00 am and 10:00 am — then the house falls silent. That’s when the non-skiing crew makes a plan.

This trip included an awesome hike, a three hour/10,000 calorie lunch, an adventure to visit my oldest friend and her daughter AND a whole lot of girl talk – the rest of non-skiiers were ladies (sorry Jack). Jack is accustom to hanging with the ladies, and knows more than his share about the local gossip and just how many Weight Watchers points are in a margarita, but he always knows that by the end of the day he will be reunited with his peers. They will all walk in the door and, without missing a beat, find JackO to greet him and fill him with stories from their day’s escapades. Anna is always the leader of the Jack Pack – the best sister on the planet.


But what about next year?

THAT’S the question that seems to fill my mind constantly these days. We just had an amazing weekend in a beautiful log cabin in Vermont — enjoying friends and the landscape and late nights singing along with music from our high school years (sorry I am not allowed to post any activities that took place after 9:00 pm). A perfect weekend and my biggest take-away is — What about next year?!?

Anna will be starting her second semester of college by February next year. Will Dan, Jack and I still head up to a mountain for a long winter weekend? What will it be like to travel with Jack as the only Torrey kid? Is it worth trying to continue these annual traditions or is it better to start new ones?

I know what you’re thinking — Anna isn’t moving away permanently. She’s going to college. College kids are home as much as they are gone AND she is only going to be 180.6 miles away. There will be many more family trips.

BUT, it is going to be different once she heads off to Baltimore. Her priorities will be — should be — on her life, on her future. It will be the beginning of her life as an adult and the beginning of our nest changing – again. The house is going to be so quiet when she isn’t around. Who is going to remind us what Jack should be wearing and listening too? Who is going to protect Jack from the endless hours in front of Bravo (with me) and PBS (with Dan)?

We will figure it out. Anna will only be a phone call away with her fashion advice and Dan and I will learn to control our TV habits (we know how to find TruTV). And, as far as the ski trip goes — we can go earlier in the winter if a ski trip is a “must do” Torrey activity. We can also forgo skiing altogether and go down to Baltimore and eat some crabs with Anna.

THIS is the real issue. THIS seems to be my go-to solution to all “my nest is changing” worries. Sorry Anna.

Love, Mom



CHANGE is a four-letter word


CHANGE has six letters, but for me it’s a four-letter word.

Lately, adapting to changes around here has proved difficult. Dan has a new job which has him traveling a ton. I’m missing my partner. For 21 years (really 23, but don’t tell my parents) we’ve been together most nights. Now there are a lot of nights where it just me, the kids and the pooches. The house has been lonely. And, it’s not just Dan that’s often out. Anna has a schedule that’s pulling her in a lot of directions that all seem to be far from Clinton Ave. Don’t get me wrong, Jack and the dogs are great company, but the normal Torrey liveliness has been lacking around here.

It doesn’t help that I’m working on “Jack’s 18th Birthday Project”. Unfortunately, this birthday project doesn’t involve planning cakes or presents. Instead, I’m dealing with lawyers and doctors and paperwork. When you’re profoundly disabled, 18 doesn’t arrive with it’s usual benchmarks. There is no graduating from high school (that comes at 21) or registering to vote. Instead,  Dan and I are registering to gain custody of our adult son. We need to hire two lawyers (one for us, one for Jack) to prove to the State that Jack is disabled. Apparently a simple introduction to our handsome, non-verbal, g-tube attached, diaper-wearing boy is not enough proof.

Once the State determines that Jack is in fact too disabled to care for himself, we move along to other 18th birthday highlights. First, we file for Social Security. The idea of collecting money on Jack’s behalf initially felt odd, until we were reminded that Jack will never work, never earn an income, never pay for his own expenses. We live in a country who helps the less fortunate, and Jack is part of that list. After Social Security, we file for Medicaid. Yet another reminder of Jack’s lack of independence.

I was sharing this list with my writer friend (who often acts as my therapist), Jenny, and she (once again) put into words what I was feeling, “I wonder if there is still hope in your heart, a little flicker of hope that someday Jack’s condition might change? Going to court puts a label on Jack’s future and makes it all permanent.”


It’s heartbreaking that we find ourselves at this juncture. Eight years ago, I never imagined being here. I still have hope (and it’s more than just a flicker), but it is super hard to keep hope alive when you are looking at this pile of “proof” that says otherwise. So, I’m upset and then I’m over thinking everything in our quiet house. A perfect storm to bring me to a sour mood.

Last night, Anna and I had a conversation that gave me the kick in the ass that I needed. She was being a brat (the way only a teenager can be), but then she said some words that hit my core. I won’t go into the details, but basically she reminded me that our family is stronger than our circumstances and it was time for me to stand up and deal. Anna has always been smarter than I am and she’s right. Life isn’t always easy, but our days are moving along whether we embrace them or curse them. It’s time for this Torrey to start embracing them again.

Dan’s new job is wonderful and we will find a new groove. Anna’s changes are moving her along towards her goals: to rule the world, cure ALD and not miss a single party along the way. And, our dear Jack is getting along just fine. All this ridiculous “18th Birthday Project” goes right by him. He is just waiting for August so that he can get some presents and a huge slice of cake.

My kids are great teachers. I needed them to remind me that our family is WAY stronger than our circumstances and focusing on cake is WAY more important than the other crap.


Love, Jess

Anna just keeps pedaling



When Anna was five years old, she came home from her friend Zoe’s house and told me that I needed to take the training wheels off her bicycle, “Today Mommy. You need to take them off today.”

Even as a little girl, Anna would get a look in her big blue eyes and I would know that she meant business, but I was curious about the timing, “Why Anna? Can’t we wait a bit longer? Don’t you like the safety of the extra wheels?”

“Moooommmm. I’m five. Besides, Zoe showed me today that she can ride her bike ALL BY HERSELF!”

That was it. There was no way that my daughter was going to let someone else enjoy even a second of glory without jumping into the game. That’s Anna. She was born determined to prove that she could do anything. It’s who she is to the core. And, it’s never been just to show off. She never really even required a witness. She just needs to prove it to herself.

That afternoon, I dug Anna’s bike out of the garage and took off the training wheels. We strapped on her Dora the Explora helmet and off she went. She started on our front lawn, “This is what Zoe said worked for her.”

There were a few spills on the soft grass before she got the hang of it. Within a half hour she progressed to the sidewalk and she’s been pedaling ever since.

Anna is now in high school, and her determination seems more indestructible than ever. It’s not just in the classroom and on the lacrosse field that she has a need to succeed. She seems equally determined to master everything from a Rubix Cube to memorizing presidents, country capitals and the Periodic Table. To date, she has yet to find something that she cannot master, but Dan and I can’t help but worry.

When is too much — too much?

I was never much of a shining star as a girl. One benefit of being mediocre is that no one expects too much from you. In fact, you get all sorts of encouragement and support and plenty of “clap outs” for every small accomplishment (I do love this). Dan, like Anna, was born determined, and it certainly reflected positively on his school work and career, but it has caused some disappointments and significant stress along the way. And, he did not have the added pressure that we fear Anna carries.

Anna is our only child who gets grades and plays sports. She is our only child who will go to college and have a career. She is our only child who will fall in love and have a family.* Dan and I try our best to alleviate the pressure and not focus too much on “being the best”, but it’s there. It’s been part of who Anna is since she was a little girl. As much as she does it for herself, Anna also loves to see her parents applauding her accomplishments. She knows we have our plates full with Jack, and is determined to make parenting her as easy as possible. This silent pressure must be stressful, but I’m not sure what to do about it.

How do we proceed? Do we stop posting her report cards on the fridge or cheering loudly at her lacrosse games? Do we discourage her from signing up for another AP class or stop her from all of her extracurricular activities?

We have tried praising more of her behavior and less of her accomplishments. We also try to remind her that she is not a grade on a paper or goal on a field. She is Anna, our daughter, Jack’s sister, a wonderful friend and beautiful human.

Special needs siblings are taught early that life is not fair and that their needs aren’t always the priority. They learn that their parents can’t take too much extra nonsense without potentially cracking. I’ve seen it again and again — special needs siblings grow up early, carrying more than their share. So far, this extra weight has added to Anna’s muscles, I just hope it doesn’t some day weigh her down.

For now, Dan and I just keep reminding her, to take it easy. “Work hard, try your best, but remember you’re just a kid.”

We keep talking and talking, but no matter what we say, I’m not sure we will change anything in our girl. Anna is Anna. She just smiles at us and keeps on pedaling.

Love, Jess


* In fact, Jack falls in love often and has plenty of girlfriends to prove it. I’m not sure how realistic it is that Jack will have a family of his own, but stranger things have happened – just turn on CNN.

The mischievous grin



I sometimes forget that Jack can’t speak. He’s very much part of the conversation here on Clinton Avenue with his bright eyes and broad smile. Days can go by without so much as a thought about his lack of words. Then, something happens that has me desperate to climb into that brain of his and get some information.

Usually, the need for intel is surrounded with worry, especially when there’s a something brewing in his health. Fevers, pain, lethargy – not knowing the source of the problem can be both frustrating and potentially dangerous. And, sometimes it’s that I know something has happened, but I can’t figure out how. Like the mysterious bite marks that Jack came home with a few years ago. I kept showing him pictures of potential culprits, as though they were mugshots and not pictures of his classmates. All I got from him was either a blank stare or a giggle (there was finally a confession and his bus assignment was switched).

Now, thanks to Jack’s whiteboard and pointing power, we are able to get many questions answered without too much trouble. He can answer “yes” or “no” and even “ears” or “throat” when he’s not feeling well. It’s making life much easier, but still the answers that require broader explanations are hard to obtain.

The last couple of days I have been curious about what’s going on in Jack’s mind. He’s had the most mischievous grin planted on his face from the time he wakes up in the morning until he goes to bed. Last night I checked on him in the middle of the night, and there it was. The grin. Even while Jack was sound asleep, it was shinning up at me.

Every time I mention the grin to Jack, it grows even bigger. I’ve asked him about school and girls and funny jokes. I’ve racked my brain and nearly worn out the whiteboard with all my questions, but Jack’s refusing to share any news. He’s such a teenager.

I was thinking about how unfair it is that he’s not able to share what’s sparked this glittery mood, when it occurred to me that Anna doesn’t always share her life with me either. I swear some days Anna seems to avoid even glancing at me, as though she’s worried she might accidentally let something slip. She’s a great girl, and I trust any secrets are of the pure/legal/good-kid variety, but still I’d love to get some nitty gritty details out of her. Getting information out of teenagers can be a challenge, and now both my kids seem to have secrets.

I’m sure my friends with teenagers can relate. Us moms aren’t always advisors, counselors, friends. We’re sometimes just the cooks, chauffeurs, and wallets as our kids tackle (or enjoy) their lives without asking us for any input. It’s natures way, I just thought that my complicated boy would not follow this path. I though he would always be willing to share whatever he could, but this week I think he’s enjoying having a little secret. He seems to love all my eager questions and watching me suffer from ignorance.

Not fair — I share all my secrets with him. Oh well, at least I get to spend time with the grin.


Love, Jess