packing up

Craving sun and time just the four of us, we’re heading to Puerto Rico tomorrow for a long weekend. The timing is a little wacky with the start of my new job, but it was planned months ago. Thank goodness for a flexible boss.

I’ve spent every free moment this week preparing for the trip. Making sure we’re all set for our friend to care for the house and the doggies, making sure my fingers and toes are fresh and pretty, picking up sunscreen and travel shampoos, and packing. Packing for a trip is complicated for our family. It’s not just clothes and toiletries, it’s the diapers and medications and pee mattes. It’s the thinking of all the what ifs and making sure we’re ready for anything that might come up. Five days away has somehow created five large suitcases. 

Still – I feel like I’m forgetting something.

We’ve taken big trips with Jack in the past, but it’s been a few years since we’ve flown anywhere with him. We’re lucky (and grateful) to have one set of grandparents with a lovely home just an hour away in Tuxedo Park, NY and another set with a beautiful place in Block Island, RI. Loading up for those trips is a challenge, but there’s no need to worry about a forgotten item or two. There are local stores and Amazon delivers quickly. For this trip we want to make sure we don’t forget a thing. AND then there’s the other lingering concerns – like potential winter weather and getting Jack on and off airplanes without any incidents!!

Crossing our fingers for no poops at 36,000 feet!

Traveling with Jack is not easy, but what great things in life ARE EASY??? There may be a poop emergency along the way or perhaps an extra stop or two for some hydration through his g-tube, but there will also be long, magical walks along the beach where Jack’s mindful pace allows us to relax and really enjoy the view. We’ll get to spend time with Anna and hear all about her gap year escapades. We’ll get to watch Jack’s expression as he tries new foods and witness him charm the locals.

No matter where we are, Jack seems to gain more fans. 

Time with our family of four is always filled with adventure and laughter. Add sand, delicious food and the smell of sunscreen — and we’re all set. I promise to share photos when we get back.

Love, Jess

We’ve rented a lovely little home right on the water. Although the views and beautiful little pool for JackO were selling points — it was the washer / dryer that really sold us. Life with Jack is beautiful, and often a little messy.

a new chapter

Sixteen years ago, Jack was falling apart. He was struggling in school and becoming increasingly withdrawn. He was stumbling to find words and getting lost with any simple task. April of that year we finally received a diagnosis and our lives changed forever. 

The remainder of that year – and several years following — was a blur of hospitals and doctors and blood work and scans. It was also a time of fear and guilt and frustration and anger and sadness.

When we finally got our heads above water, I swore to myself that moving forward I would do whatever I could to help other families who were fighting similar battles. Our family started making Boxes of Fun for children on the BMT floor at Morgan Stanley’s Children’s Hospital at Columbia Presbyterian. We started hosting bone marrow registry drives. I started sharing our story on our blog, in online publications and eventually got a memoir, Smiles and Duct Tape, published. I became more active in the ALD community and the special needs community in NJ. 

In the fall of 2020 (like so many of us during COVID), I felt like I needed a change. I was sitting with one of Jack’s other mothers telling her that I wanted to start a new chapter but not sure what to do next. She asked me what brought me joy. I answered quickly helping other families like ours. She asked me if I could do anything to help, what would I do. Being a therapist seemed like the answer–but what about the money, the time, my age?

Thanks to the support of my family and friends, I didn’t listen to the doubts. I dove in and by January 2021, I was working on my MA in Mental Health Counseling for Mental Health and Wellness at NYU. My goal of working with special families has never wavered, but I did find that I also loved working with children, adolescents, and adults who were struggling with a broad range of issues. 

Helping people who are working through life challenges to reach a place of acceptance and to discover new, empowered perspectives—that may be the best way to describe my strengths as a therapist.

I graduated with my MA in September and survived NJ’s paperwork (I am pretty sure the paperwork alone is a test of how devoted you are to being a therapist). I’m now FINALLY pleased to announce that I’ve started with a wonderful practice.

Thank you to everyone who helped me reach this new chapter — particularly Monica who helped me define my goal, Mymom who supported me and reminded me that you are never too old to make changes, my friends who are my constant cheerleaders, Dan and Anna who were my editors and rarely rolled their eyes as I talked about theories, and Jack who is the best supporter, motivator and a darn good therapist himself!

Love, Jess

Welcome 2023!!!

Welcoming a new year is a great opportunity to start fresh. We’re planning the usual suspects of resolutions – Dry January, exercise more/eat less, books over Bravo – but we also have some huge changes coming up in 2023.

Anna will be starting medical school this year. It’s still unclear as to where she’ll be going, but she has already gotten accepted into six wonderful schools, including Johns Hopkins. It’s safe to say that she is going to be going to a great school and continue to head towards her goal of helping people lead healthier/less complicated/more comfortable lives. She also has her Art by ACT keeping her busy as well as a great research job at Kennedy Krieger. And, she is not finished exploring through travel – just last night she mentioned upcoming trips to VT for skiing, CA for adventure and there was something about a cross country trip. I wanna be ANNA!

I also have some big changes for 2023. I thought I would dive right into working as soon as I graduated with my MA, but I’ve been rather picky. I went into this with a very specific plan in mind – I want to be a therapist for special needs families (even more specifically the siblings of children with special needs). Of course, I look forward to working with any human who is struggling through any challenge, but I wanted to make sure I landed where I could learn and grow while working towards my goal. I found a great fit and should be starting soon (details will follow). I miss being busy. I miss working. I’m ready.

Dan has been on a serious health focus leading up to 2023. I’m hoping it’s as contagious as the stomach flu that went through our house a couple of weeks ago. He continues to work in crypto currency — which has been a challenge but very interesting lately. Dan is also eager to plan some fun family adventures and I can’t wait to see what he comes up with!

Jack is keeping his own plans to himself – an advantage of being non-verbal – but I have no doubt that he is looking forward to fun times at his adult program and spending oodles of time with friends, family, and his other families. Jack may be one of the few people who greets each new year with a simple “Hi. It’s going be another great year!”

We are all wishing everyone a very happy new year and hoping this year brings you all joy, purpose and a whole lot of laughter!!!

Love, The Torrey