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!!!!

I need more time!

I have never been busier. In fact, I have no business writing anything right now that does not require APA citations. I just need to rest my brain and am hoping that writing here will calm me.

The last five days have been wonderful but nuts! We’ve been to Tuxedo Park to hang with the Cappello Crew, hosted a dinner party, hosted a brunch, facilitated an ALD Caregiver’s call, written a 12-page paper digging deep into my cultural identity, listened to three lectures, read 73 pages of research articals (at least I said I read them), attended three classes, spent an hour at PT for my shoulder, completed forms for Jack’s adult program, completed forms for my internship, and made and canceled at least 5 doctor’s appointments.

In the next five days we are having my nephews and sister-in-law over for some fun, going to Tuxedo Park to hang with my folks and celebrate Jack’s birthday – while the family is boating and hiking and swimming, I will be going to NYU’s Virtual Emersion (hours and hours of intensive group therapy). On Saturday when I wrap up the Emersion, I log on the ALD Connect’s Bootcamp for Women with ALD. Sunday we are having Jack’s “other mothers and fathers” for some more birthday fun.

Jack turning 23, fascinating experiences in my MA program, a trip to my parent’s lovely new home, seeing friends and family – so much great stuff, just so little time to enjoy it. 

I need more time!!!!!!!

Okay – that did not work. My heart is now racing. Gotta run and put some clothes on so that I can log on to my class.

I promise to share photos of Jack’s birthday (and maybe a couple of me sitting at a desk with a box of tissues next to me).

Love, Jess

Want to help?

I am honored to know many people in the ALD community that are changing the face of our disease. Doctors who are searching for a cure, researchers creating new treatment options, parents raising awareness and piles of money, even some folks that are running for our cause (THAT is nuts but wonderful).

One organization, ALD Alliance, was started by a mom on a mission and has done the unthinkable — they have fought to get ALD on the newborn screening panel in many states. The job isn’t done yet and that is why I’m writing today.

Many of you have asked, “How can I help.” — Here you go folks! Please open the link HERE and if you live in one of the states of one of these subcommittee members, PLEASE reach out to the ALD Alliance and they will provide you with everything you need to help make this necessary addition to the newborn screening panel. 

It won’t take more then a few minutes and will save lives (1 in 15,000 isn’t so rare for a rare disease). And, remember — if Jack had been diagnosed earlier, his life would look very different today.

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

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.