Interesting = Funny

Life with Jack is always interesting. If you see us out and about you might notice some quirky behavior. Watching a balding, 23-year-old dude being fed by his parents or how when Jack walks, he often takes a giant hop every few steps. His behavior is unusual enough that people sometimes pause before quickly looking away OR giving him a broad smile – we prefer the smile. It’s the stuff that happens without getting people’s attention that’s sometimes the most interesting. If you can learn to think of interesting as funny, it can make life much more manageable. Saturday was one of those days filled with interesting/funny.

We started the day with a beautiful hike in Rodman’s Hollow and then went off to The Oar to get some lunch. A two hour wait left us driving around trying to find an alternative. The Kittens had a line to the street and the Beach Head didn’t have any tables. Finally, we found a good spot where we’d never been with a table for three available. When we got to the table, I asked Dan if he could take Jack to the bathroom. Dan shook his head, “No need. He just went while we were waiting in line. Remind me that we need to wash his shoes when we get home.”

I looked out the window and saw that it was starting to rain. I figured that Mother Nature was taking care of the clean-up and wet shorts at the beach aren’t so unusual. Oh well — we just ordered lunch and all had a good laugh.

That night we met old friends to watch the sunset and enjoyed some delicious drinks and fun conversation before deciding it was time for us to go get some dinner. As we were leaving, we realized that Jack had once again left his mark. Going home to change him was a possibility but we were starving. Using the bathroom at the rather fancy location risked them knowing that what was spilled on a chair was not chardonnay. It was dark and nobody was in the parking lot so I handed Dan Jack’s bag and told him I would stand guard. Five minutes later we were on our way to dinner as if nothing had happened. We had another laugh.

People sometimes ask how we manage our complicated lives. Being a special family isn’t always easy, but if you can have a sense of humor and not fear a little pee, then you can do just about anything. AND Block Island – with all it’s magic, relaxed people, and dark parking lots – makes it that much easier!

We’re enjoying our last couple of days here on Block Island, then seeing friends in MA before heading back to reality. We’ve miss Anna, but this has been a wonderful week. Thank you PopPop and Sue!

Love, Jess

PS If anyone knows of adult diapers that actually work, please let us know🤪

Jack is 23!!!!!!!

Jack is 23 and we are sure about that number because we celebrated a whole bunch! Lunches, dinners, pool parties, even a cooking class – our boy has been busy!!

There are a whole lot of photos to share and two videos that are sure to put a smile on your face. Enjoy!!!

We love you Jamilla!!!!!!😘

Love, Mom

PS We will see the Torrey family soon and will celebrate again. The party never ends!!!!

Do you feel ready?

When will we feel ready?

Most days I feel like COVID is over. Besides grabbing my mask to walk into Target or the doctor’s office, COVID seems to be a thing of the past. I watch the news and hear stories about outbreaks of the Delta variant and know that people are still getting sick around the world, but here – in our little northeast, suburban bubble – we’re starting to relax. Everyone we know has been vaccinated and I don’t know anyone who has been sick for months.

So why are waiting to send Jack back into the real world?

We are traveling again, we are eating out, we are having friends over and even letting them inside the house. We no longer wash down our groceries or cover ourselves in hand sanitizer every five minutes. There are days that go by that I don’t worry about much, including Was that a hot flash or a fever?!?!?

Still – I’m worried about sending Jack back into the real world.

Jack graduated from high school from our driveway last May and at the time the adult program he was due to start was closed to in-person clients. It was closed for over a year, and we got rather used to this new, slower pace. Jack gets to sleep in and hang out with Maria and her family. He gets to take walks and spends time in the pool. He seems content. I know that he would love to spend some time with his old buddies and perhaps he might be a little tired of his loving family, but every time I think about a bus pulling into the driveway and taking him off to a day program, I start to panic. How many people will he be with throughout the day? Has everyone been vaccinated? Who is going to feed him, and will they wash their hands . . . for twenty full seconds . . . or more?

Is Jack trying to tell me something?

I know all parents can relate. Many felt that way the first time they dropped their babies off at day-care. Leaving your precious love in someone else’s hands can be scary. At almost 23 years old, Jack is still my precious love. As much as I researched the program and am very impressed with everything that they’ve done to protect their clients, I can’t seem to pull the trigger. I’m worried about new variants and careless coughs and a lot of other What ifs?. I think I ‘m also a little worried that if we send him back that somehow, we’re jinxing everything for EVERYONE (I’m sure my professors would have a field-day over that ridiculous sense of power)!!

Is it nuts if we wait until September? Isn’t September a good time for us all to dive back into real life again? Anna will be heading back for her last term at Hopkins and Dan will start going into the City a couple of days a week. I’m starting my internship in-person at a clinic in Newark. Waiting until September will allow a little more time to see what’s going on, and it’s right around the corner — RIGHT?

Writing this has made me feel like I’m being a little cautious. I reached out to them and next week Jack, Maria and I are going to go see the adult program in person. Perhaps it will make me breathe a little easier. I still think September sounds good, but who knows!

I’ll keep everyone posted. Meanwhile, please tell us — Do you feel ready?

Love, Jess

HaPpY 14th Transplant Birthday!

14 Years . . . Day + 5113 . . .

It’s Jack’s 14th Transplant BiRtHdAy!!!! 14 years since he received the magic cells from the Little Lady from Detroit that would stop the progression of ALD and allow us to not just continue enjoying life with Jack, but appreciate his wisdom and strength. He’s the greatest teacher I’ve ever had and I know he’s the same impact on everyone lucky enough to cross his path.

Here are some sweet words from his family about our boy. PLEASE add a comment about what Jack means to you.

He’s got moves like Jagger. – Dan

He’s a loud, silent human. I love my Booger – Anna

In an age where we’re all on our devices, Jack is living in the moment and loving it. – Aunt April

Yesterday is history, tomorrow is a mystery, and the present is the gift Jack gives us. – Love Aunt Darcy (with help for Eleanor Roosevelt)

We all so remember this day 14 years ago when Jack stayed so calm and so brave as the the Little Last from Detroit came into him and started to do her magic. He smiled back at all the people standing and applauding in his room. What wonderful advantage we all have been able to take from that gift. Jack has been our leader and hero every moment of the way. —  Nonno and Mymom

A quiet guy with a big personality. – Uncle Phil

We both always feel so good around Jack and feel his presence and happy demeanor. He is a gift that makes us all better people. — Love, PopPop and Nanna Sue

A man of few words who says a lot especially with his laughs and smiles. – Aunt Kate

Jack is just a light soul and a whole lot of laughter and smiles. He is also a great dance partner. – Other Mother Orla

Jack is engaged. People think not speaking would isolate him, but it sure doesn’t. – Mymom

Absolutely famntastic! The best friend anyone could ask for. Empathetic, funny, charming. – Other Father Peter

As my grandson and my inspiration as a valiant and brave guy always ready to replace difficulties and tragedy with a laugh. – Nonno

Jack is the best human being ever, my inspiration in life! – Other Mother Lilly

Jack is pure love! The most beautiful soul I have ever met. He means kindness, friendship, strength and sensitivity with a resilient heart. Jack is an example of how to live life with grace and joy no matter the adversities. – Other Mother Monica

Jack is an amazing young man who loves a good laugh more than anyone I know! – Uncle Matt

Once upon a time there was “a Iittle girl from Detroit” who would forever change a little boy by the name of Jack Torrey’s life!  Her gift to Jack has inspired so many and has given Jack the opportunity to be the awesome dude he is – a smile like no other and an awesome sense of humor to boot! – Love Aunt Kim

Jack’s journey shows that happiness and love can win. Jack still has the same attachment he always did. — Uncle Pablo

Our family can’t describe in words what Jacko means to us. He has completed our family. We love him so much. — Other Mother Maria and Family

Time is always a odd when it comes to remembering defining milestones. We will never forget that day in room 505, but it feels like both yesterday and a million years ago. We remember every detail of the anxiety and energy and hope and smell (stem cells smell terrible — who knew?) in the room when the life-saving cells went into Jacks’s body. It’s the day that we saved our son’s life with the help of countless doctors and nurses AND a family that donated precious cells, never knowing that they were going to give the gift of Jack to so many.

Thank you to the mother of the Little Lady from Detroit! Your gift didn’t just save Jack’s life, it changed the lives of many!!

Love, Jess

RIP Keegan

Keegan on Block Island last weekend

We said goodbye to Keegan yesterday. I owe him some beautiful words, but I can’t find them and it’s hard to write through my tears. All I can say is that we will miss him with every inch of our hearts.

Rest In Peace beautiful soul. I know you are running around right now and enjoying endless bacon and belly rubs. Don’t let Finn steal your fun.

Love, Jess

a long goodbye

I wake up in the middle of the night and listen. His labored breaths are troubling but it’s the silence that gets me out of bed. I go over to him, kneel down and put my hand on his belly. … Continue reading

Jack’s Other Family

I’ve been writing more than ever but none of it seems to make its way to this blog. Unless you want to learn a bit more about bipolar disorders or various treatments for anxiety, I’m not sure anyone but my professors would find any of it interesting. But, it’s been a month since I posted so I wanted to take a moment to fill you in on JackO.

I miss Jack. 

Ever since I started school, I’ve noticed that Jack is spending less and less time at home. At first it was every few days Maria would say that they were going to just swing by her house to check in on her daughter and then Dan and I would get texts with pictures of Jack sitting down at a glorious meal or out taking a hike or watching Maria’s daughter play softball. Every few days turned into every day and sometimes I need to send a text reminding them that it’s bedtime. Maria well exceeds her paid hours because they are in the middle of a movie or making pizza or they are waiting for a cake to get out of the oven. I’m now convinced that Maria and her family are planning on stealing Jack for good. I can’t blame them – he’s good company.

It’s now been over a year since Jack had a formal schedule. 411 days since he would hop on a bus and have a day full of adventures and instruction with peers and therapists and teachers. It’s been an adjustment for the rest of us, but Jack never seemed frustrated by the new COVID reality. The first few months he just loved having his whole family around all day. And then he enjoyed every show we introduced him to – The Office, Cheers, Seinfeld, Full House, The Wonder Years, That 70s Show. But by the time I started school Jack was running out of television, Anna had returned to Baltimore and the house felt rather boring with Dan working and me buried in my studies. Maria saw a need and she filled it. 

Over the years Jack has had “other mothers” who have loved and cared for him – Taryn, Sabrina, Peter (other father), Sara, Lilly, Celia, Ivete, Monica, and on and on. Jack has been so blessed to have these “other mothers” and now Jack has a whole “other family”.

For a school project I needed to interview someone going through a developmental stage that we’ve been studying. I sat down with Maria’s beautiful 10-year-old daughter, Jamilla. I’ve known her since she was born and thought I knew every detail of her life but hearing someone’s story in their own words is always fascinating. I enjoyed every second of our talk, but it was the last bit that nearly brought me to tears (happy/beautiful tears). When asking her what it was like to be an only child, she quickly told me that she wasn’t, “I have Jack.”

I miss Jack but there is a lot of him to go around. His love and licks and contagious positive attitude need to be shared. As much as I miss having him here all day, I am so happy that he has another family to keep him busy while Dan is working and I’m trying to get my 51-year-old brain to retain crazy amounts of information.

AND we’re opening the pool next week, so I feel pretty confident that they may start having more adventures over here for the next few months!!

Love, Jess

what a WeEkEnD!!!!

I had trouble falling asleep Sunday night. Ever had a big day that you just didn’t want to end? We had a whole weekend of fun and my mind was spinning with entertaining memories and picturing the giant smile on Jack’s face. This weekend was The Camp at Home — ALD Family Weekend thanks to The Painter Turtle, the wonderful Adler family, Dr. Van Haren and all the other ALD heroes/folks that made it happen. Watching the computer screen all weekend and getting to see some of our favorite ALD families was great, but for me it was seeing all the new families that really got to me.

I was told almost half of the people were families new to ALD. Most of them have been recently diagnosed through newborn screening (thanks to the incredible work of the Aidan Jack Seeger Foundation/ALD Alliance). These are perhaps the luckiest, unlucky folks around. Thanks to newborn screening their children have been diagnosed early with Adrenoleukodystrophy They have time to educate themselves, set up a team of doctors who understand the disease, and monitor their sons so that when – and IF – the disease starts to progress, they can start treatment quickly. 

Lucky.

Unfortunately, this knowledge often comes out of nowhere. Imagine having a new baby and receiving a call a few weeks later saying that there was something that came up on their newborn screening panel. Imagine then doing more tests to confirm that your beautiful healthy son has a disease you can’t pronounce. Imagine sitting down at your computer and Googling a disease where much of the information floating around the internet is frightening and out of date.

Unlucky . . . But back to lucky.

My hope is that not long after getting the terrible news, these families stumbled on a Facebook page or found websites like https://aldconnect.orghttps://www.aldalliance.orghttps://www.bluebirdbio.com. They then met a few other families who were maybe several months are years ahead of them in their journey. They started learning that there are incredible doctors working with ALD and that with an early diagnosis, there are treatments and trials and hope. Then they heard about this incredible weekend where the entire community was invited to attend, free of charge, to meet more people, to hear from doctors about current trials and research, to hear from other families, to cook and to make art and to dance. Billie Eilish and Neil Young even gave the ALD community a shout out during the Saturday night “camp at home fire pit”.  

I hope these new ALD families feel a little better about this “club” they were just forced to join.

I was asked to speak on a panel on Sunday that included several people who I’ve known and admired for years and one man who I have added to my list of ALD heroes. When discussing the plans for the panel, we were told that we should share our stories keeping in mind that many in the audience would be new families. My first thought was, it’s hard to make Jack’s story seem easy and light. Then I thought – I’m talking about Jack. Nobody is lighter than Jack! I started sharing our story with why Jack wasn’t sitting next to me.  He was out for a quick lunch with his friend Monica and her beautiful/brilliant daughter, “If you think for a second that a life full of complicated challenges is sad and limited, think again. There is nothing sad or limited about Jack’s life.”

ALD = crappy disease/amazing people!

Love, Jess

ALD Camp at Home Family Weekend with the Painted Turtle

Calling all ALD families!!! PLEASE register today for this year’s CAMP AT HOME ALD FAMILY WEEKEND (March 19-21). A weekend full of great activities for kids, interesting information for adults, and groovy music and dancing family fun!!!

The Adler family is incredible. Their beautiful son was diagnosed with ALD through CA’s newborn screening program in 2017 and without pause they dove into, not just helping their son, but helping the entire ALD community. They started The Lucas Project which has raised over $130,000 for ALD research and has raised international awareness for the disease. And, along with Dr. VanHaren and The Painter Turtle, the Adler family has organized this incredible annual event.

If you would like to learn more about ALD, or how to help our community, or connect with other people, or make lovely artwork, or just dance and sing — THIS is your weekend!!

We look forward to seeing you all there!!!

Love, Jess

2 shots (8 total) and 1 shoulder

It’s hard now to find the time to sit down and write something that’s not about a specific therapy or therapeutic practice, but I wanted to sneak away form my studies and fill everyone in on some BIG news — The Torreys of MAPSO are now fully vaccinated!!!!

You may have heard that the second dose of either COVID-19 vaccine often results in a crappy day – fever, joint pain, chills and other “crappy” stuff. Both Dan and I each had a day feeling the effects and were worried about how Jack would do. We spoke with his doctors and decided the minimal risk of a reaction was outweighed but the HUGE reward of protecting him from the virus. We did stress dose him with his steroids for a day following the second dose and kept him super hydrated. Then we watched him like new parents watching their newborn breathe. The only one who had any side effects from Jack’s second dose was me, because I was waking up constantly to check on him. Jack got through it like a champ!

We are so relieved to be on the other side of the vaccine. We are not planning any big trips just yet, but looking forward to not freaking out about every trip to the grocery store. AND, we are excited to be part of history and part of the solution to reaching the end of this crazy pandemic.

In other medical news – Dan had a shoulder replacement today. It’s been a long time coming and he is eager to see how this new one works. Not sure he will be pitching for the Yankees any time soon, but he is excited to be able to raise his arm over his head.

Back to my school work for now. Look out for another post soon about the next Camp-at-Home ALD Family Weekend at the Painted Turtle!

Love, Jess