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

saying goodbye is hard

Our family has been showered with so much love following us saying goodbye to Keegan. Thank you. Many have asked how Jack is doing and my answer has been, “As well as anybody would be saying goodbye to a dear friend.”

Saying goodbye is hard.

The morning Dan and I agreed that it was time to call our veterinarian, we shared the decision with both of the kids. We explained that Keegan was in pain, he wasn’t eating and was having trouble walking. We needed to let him go. We talked about him always being in our hearts and that he was going to move on and get to be free of his body that was failing. Anna who had been visiting with my folks said she would come right home, and Jack didn’t react for a moment and then made a pained face and cried. Silent but very real heartbreaking tears.

We spent the day lingering in the living-room where Keegan rested on the floor. We gave him love and cried and laughed and watched bad tv. Jack got to spend a few hours with one of his other mothers, Monica, and got home just as the veterinarian arrived to peacefully send Keegan off to his next journey. It was horrible and beautiful.

We’ve spent the last week sharing a lot of stories about Keegan and picturing him up in heaven playing with many of his old friends. Through our tears we’ve laughed about him needing to be careful that Finn doesn’t stop him from having some fun – Finn never liked Keegan getting to play. Be strong Keegan – it’s your turn to be in charge!!

The house feels a little empty, but Tupelo is doing her best to give us the licks we all need right now. And Jack is doing as fine as any of us are right now. We are all going about our days and periodically getting a firm reminder of what is missing.

Saying goodbye is hard.

People often confuse silence and disability with ignorance, even stupidity – Jack is neither of those things. But, times like this, I wonder if a little ignorance (even stupidity) might not be such a bad thing.

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

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

Day +5000 (a post from Dan/Dad)

Day 5000


Lately I’ve been distracted.  Distracted by the lousy weather outside the window.  The cold.  The grey sky.  The snow piling up… Distracted by the inane MTG politico drama playing out on TV every day and night…  Distracted by work stuff ( I just started a new job this week).  Work can sometimes be a positive and useful distraction – especially when living through the first 12 months of a pandemic (Yes, we are now in our 12th month…).  But at the end of the day, it is still a DISTRACTION.   


Sometimes the only part of the day when things come into focus, when my mind clears, when I shed all the distractions is when I get a giant hug from Jack.  It’s the best part of my day – every day. 

 
Even if you haven’t spent a lot of time with Jack, you know that he is non-verbal.  But you probably can’t fully understand how he communicates most directly and most effectively.  It’s when he gives you a hug.  He is extremely strong.  He will literally squeeze the breath right out of your chest.  It’s the best feeling in the world.  It’s when I regain all perspective — as I squeeze back! 


Today is Day 5000 in the Torrey house.  It’s been 5000 days since Jack received his stem-cell transplant in May 2007.  Since the doctors at Columbia Presbyterian Hospital saved my son’s life.  5000 days of a wonderful life.  5000 days of smiles and belly laughs and hugs and dancing to 70’s tunes.  5000 days of watching him and his baby sister grow up to be adults.  5000 days of “our normal life” with Jack.  


Think about what has happened in your life over the last 5000 days.  It’s hard to grasp all the changes, the good and the bad, the ups and downs,  the mundane and the thrilling, Hell, some days I can barely remember life before COVID.  But Jack and his hugs help me remember what is really important in life.  Not the distractions.  That’s nothing but a lot of noise.


Thank you Jack for being in my life. 


Love,
Dad 

MCATS, NYU, Old School Vinyl and Duct Tape

hApPy NeW yEaR!!!! Less than a week into 2021, and our family is starting out strong. Anna completed her junior year at Johns Hopkins a semester early, so she’s taking next semester off to study for the MCATS. Not really … Continue reading

Christmas 2020

Christmas was okay, it just didn’t feel like Christmas.

We did get to enjoy Mymom’s famous sausage/spinach lasagna on Christmas Eve and woke up Christmas morning to made french toast and opened gifts. We ate and drank and listened to Phil Spector’s A Christmas Gift to You All. We spoke with family and friends via Zoom. We even got to spent the day after Christmas like every year — in our PJs watching movies and playing games. The holiday was lovely, but it just wasn’t the same.

The lack of other people felt strange. We were lucky to be able to spend time with my parents (they are our pod, although we are still careful). Our tiny table of six was filled with delicious food and lively conversation, it just felt a little festive then Christmas should be.

The entire holiday season feels a little underwhelming. We weren’t able to see our beautiful nieces and nephews or party with the extended family. There were no December Saturday nights where we Uber from one party to another. There were no lunches with my girlfriends to escape from holiday shopping. There will be no party with close friends to ring in the new year. I didn’t even have the heart or the energy to send out a holiday card. 

COVID was the Grinch that stole the holidays. 

We keep saying to ourselves that next year will be different. It better be. We need to fill this house again! 2020 has taught us all a lot about appreciating the small things AND that nature is powerful and sometimes cruel. Lesson learned 2020 — now let’s move onto 2021 with a new vaccine, a new president and (hopefully) tons of time with friends and family!!!

hApPy NeW yEaR!!!!!!!!!!

Love, Jess