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

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

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

New Tricks

I often chalk stuff up as a happy accident or a funny coincidence when Jack has a new trick. It’s not that I’m not proud of our boy or that I don’t pray with every ounce of my soul that he will make improvements and develop new skills. I’m just being careful. It’s my way of protecting myself from disappointment. For years, I would see small successes and think it was the beginning of a huge transformation. I was often left disappointed when a new trick vanished as quickly as it had arrived. So I’ve learned to focus on and celebrate what Jack is doing well and consistently.

Over the years there have been some things that have proved to be more than a trick. Jack relearned how to walk with purpose, eat solid food, hug. A few years ago, after being told repeatedly from the folks at his high school that Jack could read, I watched as Jack pointed correctly to a word on a sheet of paper. I paused and then pushed down the excitement, reminding myself that he had a one-in-four chance of choosing the right word — not crazy odds to have guessed the correct answer. Then he did something similar the next day. I tentatively held up word after word to test the skill. I was delighted — and shocked — to see that his teachers were right.

Lately we’ve witnessed another new skill that at first had us laughing.

Last week I got a flurry of text messages from friends asking me what was going on? “What are you saying?” “You okay?” “What’s THAT photo?”

When I scrolled through our correspondences, I saw odd comments and strange photos. I couldn’t figure out what was going on — had my phone been hacked? And, then I saw something that solved the mystery. A large nose.

It was Jack.

I went into the bathroom where Jack was sitting on the toilet with his iPad on his lap. Jack isn’t consistent with his toileting and we find that if we sit him for a bit every few hours we can often save a diaper (adult diapers are about $1/per — and we are cheap). We sit him with his iPad so that he can stay entertained AND stay seated (he has startled more than one guest over the years by walking out of the bathroom with his pants around his ankles).

After the random texts, I realized that Jack’s iPad is linked to my phone and that he was writing to people. How on earth? He must have just been lucky as he hit some buttons.

Then it happened again. And again. Apparently Jack likes texting and sharing photos of his nose and thighs (thank goodness it hasn’t been of anything else).

Then this morning I heard Anna’s voice coming from the bathroom. Having just delivered her to Baltimore, I wondered how it was possible until I walked into the bathroom to find Jack smiling at his sister’s face on FaceTime. Apparently he doesn’t just like to write notes.

So folks, I need to apologize in advance for any odd correspondence you might receive from me. It wasn’t a butt dial and I haven’t been day drinking. It’s just Jack saying hello.

AND, if you get any photos . . . I’m really, really, really sorry. PLEASE do not alert the authorities.

Love, Jess

hApPy BiRtHdAy JaCkOOOO!

When I was 22, I had just moved to New York City and was working for an advertising agency. I had my last “first date” — with Dan at the Democratic National Convention (because he’s always been the coolest guy on the planet). I was busy contemplating whether I should continue working in advertising, return to being a photographer’s assistant or apply to graduate school. Nothing was set in stone, but I was happy and my adult life was underway. 

Today Jack turns 22. He’s living at home and working on getting through Season 4 of Jersey Shore. He has ongoing dates with Maria, Monica (his caregivers) and Anna. He’s not sure wether he’ll be going to an adult day program this year, doing virtual activities via zoom, or just hanging out for the next few months. It’s not the life I would have imagined my son would be living at this age, but he’s happy and his adult life is underway. 

While Dan and I are stressed about what’s next for our boy, Jack continues to enjoy every inch of his life. He’s not worried about when his adult program will open or running out of hand sanitizer. He’s not fighting with people on social media about wearing masks. He’s not wondering if our country is heading into a depression or if we will ever feel comfortable getting on a plane again.

Jack enjoys today and trusts that tomorrow will be even better. For a silent person, he’s my loudest teacher. 

Yesterday we lost power — as did many as Isaias managed to rip it’s way up the east coast. I spent most of last night worrying about whether our power would be restored quickly and if the generator we’d set up would somehow leak carbon monoxide into the house. I worried about if the branch that had taken down the power line had first hit our house and that there was a leak that we hadn’t yet seen. I worried about how I would be able to clear out the branches from the pool so that Jack could swim and what I was going to make for Jack’s birthday dinner. I got up this morning and looked at Jack’s sweet smile and decided that for Jack’s birthday I’m going to honor him by adopting his beautiful attitude — at least for a day;)

Today there will be no worries on Speir Drive — just gonna hang out and embrace the day. Oooooh, and swim in a pool full of branches and leaves and order some food for dinner!

Happy Birthday JackOOOOOO!!!!

Love, Jess

Too Many Variables

Last week I had meeting with Jack’s support coordinator to organize his plan for the fall — via Zoom, because that’s how we meet with people now. 

Although we love our support coordinator (she’s organized, smart, kind AND she returns my phone calls), I got off the phone feeling exhausted and not really sure if we had accomplished anything productive. We kept throwing out dates and ideas and then going back to other dates and ideas. Honestly, I’m not really sure what we came up with or if it makes sense.

The only way I can describe it is as a giant algebra problem without enough information to solve it. Too many variables.

Now that Jack is an adult, he receives a budget, through DDD, to pay for activities. Last winter we’d found a wonderful day program and he was scheduled to start on July 6. We had budgeted for him to attend the program 5 days a week for 6 hours a day and then knew exactly how much we had left for other things like at-home support and a variety of therapies.

Then COVID-19 arrived.

The day program closed and the last we heard they’re hoping to reopen after Labor Day. If life were normal, we could plan accordingly. We would correct the budget and plan to start on September 8 — but life isn’t normal.

Not only does the program not have a definite opening date, they don’t know exactly how they plan to open and whether or not they will be excepting new clients right away. And, this being a new program for us, we’re not sure if we will feel comfortable starting immediately once they open their doors. So many safety concerns. We can’t send Jack until we are completely confident that the program is safe. 

BUT what does SAFE mean now?

Perhaps it means that the program is smaller and thoroughly cleaned every day. Perhaps it means they will stagger the hours for their clients, so that social distancing will be easier. Perhaps it means that every client will be provided a one-to-one to help keep everyone socially distanced and wearing masks. Perhaps it means there’s a good vaccine and/or treatment options. Perhaps it means that COVID-19 disappears magically.

Once we decide what SAFE means,  Jack might be able to start a day program, but will that be in October or November? It’s more likely that we won’t feel confident until January or February or March or . . . . ahhhhh!

How do we make a plan when we don’t have any dates?

Jack’s budget does provide at-home support and Jack’s caregiver, Maria, (and Anna, when she’s home from school) will continue to work for us, but we need to be careful about how many hours we use. If we use too many hours, we may not have enough in the budget for a day program once we are ready.

Since COVID-19 burst into our lives, I’ve gone through a lot of emotions. For a while, fear was all I could focus on — fear of leaving the house, fear of the groceries carrying germs, fear of opening the mail. Then I went through weeks of being exhausted from washing down groceries and by the energy it took to plan simple outings like going to the post office. Then, I seemed to flip and felt bored and useless — checking off days on the calendar when I couldn’t think of one significant thing that I’d accomplished. Depression was creeping in, and last week’s phone call with our support coordinator didn’t help.

It’s not just the unknown about Jack’s plans. As I look at the next couple of months, we have plans, but know that they are subject to change at any time. Our trip to Block Island, Anna’s return to school, Dan’s office reopening. Everything is fluid these days and it’s starting to really get to me.

Our family is pretty good at adjusting. We’ve been able to zig and zag through a lot of things that have come our way, but the problem is that COVID-19 doesn’t have — even a hint of — a timetable that we can glance at to know when life will return to something that feels normal.

I like to wrap up these posts with some “glass half full” statement or something to make you laugh, but I can’t think of anything today. Sorry. This suck. I hate COVID-19.

Love, Jess

Wear a mask. It might not be perfect, but at least it makes many of us feel a little safer.

Okay — I won’t leave you on a bad note. Here’s a fun picture of our new dog, Tupelo.

Special Education Mom

Joanne’s beautiful boys in their younger years

I adore my friend Joanne for many reasons. She’s an extraordinary blend of Brooklyn tough, brilliant mind, and the warmth that comes when you’re faced with caring for your special child (in her case two children with special needs). She also has no fear of sharing a large pizza, farmer’s salad and an order of crostini with me at Arturo’s without mentioning the calories (ohhhhhhhh, how I miss those lunches).

When COVID hit, while I was focusing on how I was going to manage getting groceries and how long my hair would hold up before showing it’s true colors, Joanne was researching the law and contacting the State about resources for her sons. 

Four month into this, I’m finally in a full blown panic about what’s next for Jack and I haven’t been sure how to share it in words.

I don’t need to. Joanne has done it for me AND she shared it on CNN.

Keep fighting/advocating Joanne. Ben and Sebastian need you. Jack needs you. No pressure — but the entire special needs community needs you!!

Please click below to read her post and don’t forget to watch the CNN piece!

CNN

Love, Jess

Just as Sweet as Tupelo Honey

People mourn in different ways. For me, saying goodbye to our dog, Finn, was one of the hardest things I’ve ever done. I knew I loved him, but the level of pain was unexpected. Everything in the house felt empty and I kept thinking Finn would race out from the corner of the yard when he heard there might be a guest arriving. The tears kept coming and my stomach was sour. I swore I would never let our family get another dog.

That lasted a few days.

Then, I found myself pausing every time I saw a dog on TV or on the computer screen. I tried to picture what life would look like with another friend hanging out on the sofa and playing with Kee in the yard. But, it was too soon to jump into any spontaneous decisions.

It’s not like I was calling shelters or checking Petfinder. I wasn’t even talking to the family about the idea of getting another dog, I would just pause at the pictures of pups if they happened to stumble onto a screen.

Then, one face in particular made me pause a little longer, as if she was speaking to me. A local friend was posting on Facebook that she was fostering a puppy for Lost Paws Animal Rescue, “New foster pup. Six month old girl, hound mix with possible Italian Greyhound in there, getting over a skin condition. 20 pounds. Come and meet her, she needs kids!” Something about the eyes and those floppy ears. I shut off the computer.

Two days later, my friend posted another photo. This time I wrote a comment, politely asking my Facebook friend to stop sharing images of the unbelievably precious pooch that she was fostering. 

She asked, “hmm. If I took her for a walk in Newstead, where shouldn’t I walk past back and forth until you run outta the house… 😉” 

I laughed, walked away from the computer and then quickly returned to give my friend our address and tell her that I would be out front pulling weeds all afternoon. I told the family what I had done, expecting someone to be the voice of reason, but everyone seemed to think “just meeting a puppy” would be fine.

That was Monday.

An hour later we were all on the driveway playing with the puppy. She was lovely. That night I wrote my friend and asked if maybe the little pooch could come for a playdate the next day, “just to see”. I also wrote another friend who works for Lost Paws Animal Recovery and explained that we were filling out an application for the dog, “just in case.” 

Anna and I went to pick up the doggie Tuesday and my friend loaned us a crate, “just in case” we wanted to do a sleep over “just to see”. As we pulled away she said good-bye to the doggie.

I had a checklist for the visit. I needed to use my brain with this one — my heart couldn’t be trusted with her velvety floppy ears.

1. She must get along with Keegan

2. She must be (at least close to) housebroken

3. Not a huge barker

4. Jack needed to approve

As soon as she arrived, our visitor and Keegan frolicked in the backyard, stopping only to take a pee on the grass. When we brought her inside, she jumped onto Jack’s lap and sat there letting Jack rub her head. And, she didn’t bark, even when we put her in the crate for her “just to see” sleepover — I swear she wanted to make sure she was very clear to check every box.

I wrote both our friends the next day and told them that this magical pooch needed to be a Torrey.

The brief history we’ve been given is that she was raised in the family home in South Carolina where she’d been born, but she and her brother were recently taken to a shelter because their family was going through something and could no longer care of the pups. Lost Paws Animal Rescue rescued her from the shelter and brought her up to NJ last week. She is a six month old mutt and clearly has been well-cared for. Pretty housebroken, doesn’t bark or jump, just wants to play and cuddle. 

Her original name was Margaret and then my friend was calling her Ladybird or Birdie. We tried all three, but she didn’t respond. We played with other names all day, but there was one that seemed to suite her best. A Torrey doggie family name that happens to be Elvis Presley’s hometown, the name of a band we love (Uncle Tupelo), a delicious honey and a song by Van Morrison.

She’s as sweet at Tupelo honey

She’s an angel in the first degree

She’s as sweet as Tupelo honey

Just like honey from the bee

Welcome to the family Tupelo Torrey III

Love, Jess

Special thanks to Joe Rispo and Alia Covel and Lost Paws Animal Rescue for bringing sweet Tupelo into our lives.

ALD Connect Peer Mentor Program

No photo description available.

Thirteen years ago we were in the hospital living through transplant. We’d only heard the word Adrenoleukodystrophy for the first time four weeks earlier. We didn’t know anyone who had ALD or who had even heard of the disease. Our doctors didn’t even have much information to share.

We were terrified and we were completely isolated.

It took months to connect with any other ALD families — it was a time before social media and Googling ALD simply lead us to horrifying stories and even more horrifying statistics. Once we found a couple of other ALD families, we did find some comfort, but it was often short-lived as their journey’s took turns down dark paths. Fear and guilt weighed heavy in continuing those relationships.

It took years before our family really found our ALD community. Smiles and Duct Tape – the blog, then the book – found it’s way into the hands of a member of the board of ALD Connect and she reached out to encouraged me to go to their next meeting (thanks Kathleen). Attending a panel of ALD patients and caregivers and then my first ALD Connect Annual Meeting was empowering. It was years after Jack’s diagnosis and transplant and it was when I first realized that our family had reached another chapter in our ALD journey. Being surrounded by people who knew our disease – who lived our disease – was inspiring. And, we were no longer weighed down by fear and guilt and were finally strong enough to be able to provide help. Sharing our story with other families and doctors and organizations studying our disease — it’s (I hope) helped other people, but it’s absolutely helped our family find strength and take some power back.

ALD Connect asked me to attend a meeting last year to find out more about peer to peer support programs and how they can help rare diseases like ours. I was honored to be asked to represent ALD Connect and found the conference fascinating and reminded me of how our family felt thirteen years ago. Scared and alone.

The first speaker at the conference talked about the added stress of feeling isolated that families go through when facing a rare disease. They’re not just battling the disease, they are often battling the disease without any support from people who understand the disease the way ONLY PEOPLE WHO HAVE LIVED IT can understand.

ALD is a horrible disease, but the people effected are an incredible group. It took me a while, but most ALD families don’t take years to find the strength to help others. AND, thanks to social media, our community has been able to more easily find each other. Informally, many in our community have been acting as mentors, but ALD Connect is now rolling out a more formal program.

The ALD Connect Peer Mentor Program is now welcoming our ALD community to reach out if they would like to be paired with someone within our community who has experienced a similar path with the disease. A group of incredible mentors have been selected, representing each phenotype of our disease, and they are looking forward to being a resource for support, encouragement and a shoulder when needed. Please contact me or admin@aldconnect.org if you are interested.

TOGETHER — ALONE

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Yesterday we just received Jack’s cap and gown with a note regarding his graduation celebration. Each graduating student will be scheduling a time when their teachers/therapists/principle will arrive at our homes and, from the safety of their cars, the staff will play Pomp and Circumstance. The students, dressed in their graduation finery, will pick up their diplomas from the lawn as the school films them. There will be a virtual graduation in June to watch Jack and all his classmates TOGETHER — ALONE.

I’m proud of his school for organizing such a thoughtful event, but unpacking the cap and gown brought me to tears. It’s so unfair that these kids, who have each suffered so much in their lives, are having yet another thing stolen from them.

I know we are supposed to focus on being ALONE — TOGETHER, but this virtual reality we are living sometimes feels more TOGETHER — ALONE.

Our family has done very well for the last 69 days. We’ve not complained (too much) about our current circumstances. Instead, we’ve focused on being grateful for our health and full fridge and paychecks and toilet paper. I think part of our positive attitude has been because our family has dealt with being quarantined before — first in a hospital and then at home for months and months following Jack’s stem cell transplant. This time, we haven’t been in charge of IV medications and taking turns sleeping in Jack’s room to make sure he was still breathing. AND, this time we haven’t been alone. All our friends and family have been doing the same thing. Most of the world has been at home.

So, instead of feeling sorry for ourselves, our family has taken the opportunity of this crazy time to slow down and do what we can. We’ve created a rather magical garden in our backyard. We’ve cleaned out closets and revisited hobbies like yoga and puzzles and painting.

Sure, we’ve all missed some things. Anna missed much of her second semester living at school. She missed parties and lacrosse games and The Preakness. Dan missed business travel and planned hikes and baseball. I missed teaching and spending time with my new nephews and trips and being in Listen to Your Mother. Jack’s missed school and friends and hugging (and licking) people other than his family.

Now he’s missing his graduation.

Like being quarantined, I’m trying to remember that he’s not alone in missing his graduation at school. Many of our friends have children celebrating their high school/college graduations virtually, and that does make it a little easier. There is power and strength in numbers, but it still stinks. I do hope that once this crazy time is over, Jack can return to his beloved high school and march in a ceremony with his classmates. They deserve it.

Until then, we will continue to settle down and continue to settle in, but we are starting to open our lives a little. Starting to plan some time with friends — is a SAFE way (or safeish). Dan met a friend to go fishing for an afternoon and, from a distance, got to catch up and share stories. Anna had a couple friends over the other night and they sat 6 feet apart around a fire pit. I sat out with them longer than I probably should of, craving in-person conversation (sorry girls). I can forgo haircuts and restaurants for a while longer, but I’ve missed my  friends terribly. I’ve started to make some safe (ish) plans with pals and I can’t wait for Jack to get to do the same with his friends. Not sure when, but we are going to get the graduating class of Pillar High School together again.

Until then — Congratulations Class of 2020!!!

Love, Jess