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at your computer and Googling a disease where much of the information floating around the internet is frightening and out of date.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

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 

4999 Days

Day +4999 . . . 

4999 days since Jack received the stem cells that saved his life. 4999 days ago we never could have imaged what our lives would look like now. And if we had, I’m not sure that we would have thought that we could embrace lives that look like this. 

A few days ago incredible members of our ALD community lost their son. It wasn’t ALD that ended the life of this beautiful young man, but an accident. We’ve known many people who have lost loved ones this year. Not ALD, but COVID, cancer, heart attacks. Life is complicated and fragile and we need to appreciate every day. Our family is grateful for the last 4999 days and will treasure each day ahead of us.

I’ve been writing tiny love stories for the last couple of months. The New York Times keeps passing 😏, but I’ll share what I wrote last week. 

I open the door that separates our rooms and look at him lying there. The most beautiful face I’ve ever seen. As if in a trance, I crawl into bed next to him, trying to be careful. His bed is littered with complication. I slowly take his hand and place it between my own. I hold my face against his and I linger over his sour breath. There is always so much I want to tell him and sometimes wonder when we’ll run out of time. Tonight I will just be quiet and enjoy the moment with my beautiful boy. 

4999 days.

Love, Jess

PS Stay tuned — Dan is working on a post for tomorrow.

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

Thanks JackO

This morning I was sitting in my office feeling overwhelmed as I poured through my syllabi for the winter term. I was busy second-guessing my decision to return to school at my age and wondering how on earth I was going to manage, when I heard Maria (Jack’s caregiver), “JackO – why are you crying?”

I race downstairs to find our boy in front of Maria’s phone, watching a video with big tears rolling down his face.

Shakira singing John Lennon’s Imagine.

You may say I’m a dreamer

But I’m not the only one

I hope some day you’ll join us

And the world will be as one

Don’t ever confuse Jack’s silence with not understanding. He recognizes powerful words when he hears them and sometimes his emotions take over. Perhaps his silence allows him to listen even closer than many of us. I’m always amazed by the beauty of these moments. Maria offered to turn off the song, but I insisted that we continue. Tears aren’t always such a bad thing — beside I needed a little perspective this morning.

Love you JackO. And, John Lennon and Shakira too;)

Love, Jess

Holidays + COVID = 0

Not sure how I can feel so exhausted when I do so little. Each morning I write a list of what I hope to accomplish. Some days go by where I don’t complete anything, so I return to the list and add things like — shower, walk the dogs, feed Jack — just so I can cross a couple of things off the list. With the holidays around the corner, my daily list gets longer and less seems to be getting done. Today, instead of Christmas shopping for the family, I ordered some bras and an eyebrow kit (not even sure what that is).

Love, Jess

our relationship in 100 words

As the music plays, I lay my head on his shoulder and feel his breath on my face. I wrap my arm around him so I can stroke his hair and wonder when he’ll lose the rest. He doesn’t seem to know that he’s aged, but the years have come and gone and he’s showing signs of a complicated life. He loves this song. I can tell by the way his body is rocking. He’s not been able to speak for many years, but I’m able to translate. Our connection is deeper than the scars his disease has left behind.

shi^ty disease/amazing people

Years ago my mother and my best friend, Enger, planned a surprise party for my birthday. It was just a keg, some balloons and a pile of friends, but it meant the world to me — I was so surprised when I walked into my dirty, second floor apartment at The Woodrow and saw all those smiling faces. It’s been a while since that day (30 years!!), but yesterday I felt that same feeling of overwhelming confusion and love.

I’m not someone who ever had a bookshelf full of awards, but now I have one, and it is proudly sitting on my mantel. 

Folks at ALD Connect asked me earlier in the week if I would help them as they gave an award to my friend Kathleen O’Sullivan-Fortin. I jumped at the chance of applauding her for all of her hard work — she’s a founding member of the the board of directors of ALD Connect and is responsible for bringing me into this community, while showing me tons of love and support. When it was time for the award ceremony, and I went upstairs to sit at the computer and brought Jack with me figuring that Jack could help me cheer for Kathleen. 

The call started. Suddenly Dan danced into the room with balloons and Anna congratulating me via his cell phone. Then Kimmy V walked up the stairs with streamers, holding a trophy.

Holy smokes!

I’ve sat through these award ceremonies and always felt that the awards were so earned. Amazing people who have done so much for the ALD community. Yesterday I was honored along with Nic and Alison Adler, Kathleen O’Sullivan- Fortin and Dr. Keith Van Haren — some of my ALD heroes. To share such an honor with that crew seems a little odd to me. ALD Connect has done far more for me and our family than I would ever be able to do. They have educated us and supported us and given us a community. 

Community.

If you are reading this, I want you to stop and ask yourself if you have a community. If you don’t — find one. 

ALD is the worst thing that has ever happened to our family. It’s a shitty disease that stole so much from Jack and is now effecting my mother. It has me in constant fear of when I will develop symptoms that might make caring for Jack difficult. It’s a disease that has taken the lives of so many sons, nephews, brothers, fathers. I hate every ounce of this disease, but I’m so lucky to have found this community of remarkable people. They hold me up and provide support. They share information and are always there when I need to yell and scream or laugh and cry.

If I could, I would return this beautiful blue trophy — but I can’t, so I will put it on my mantel and remind myself every time I see it that ALD sucks — but the people are amazing — and maybe a little nuts to recognize me;)

ALD — shitty disease/amazing people.

Love, Jess

There is an angel donor that is matching donations this week. I would like to ask you to consider to making a small donation to this incredible organization.