Does he look happy?

I’m outta here!!!

My alarm went off this morning. At first, I couldn’t figure out where the annoying sound was coming from. I looked around the bedroom confused and irritated until I saw that the loud dinging was coming from my phone. 

Today was our first normal weekday in 18 months! Dan’s away on business, Anna’s at school and Jack needed to get up and dressed so that he would be ready for the bus to take him to his new adult program. I needed to get out of bed and get started! My old morning routine felt so foreign. I kept thinking, What am I forgetting? Toileting, teeth-brushing, shower, dressing, toileting again, laundry, medication, breakfast, pack backpack, toileting again, shoes . . . Tupelo was frantic as she witnessed the flurry of activity. Mornings at the Torrey house haven’t ever been structured since she joined the family.

Once I was fairly certain I remembered everything, Jack, Tupelo and I went outside to the front bench to wait for the bus. We sent Dan a photo just like the old days and within a couple of minutes our new friend, Robert, pulled into the driveway. Jack didn’t miss a beat – he jumped right up to get on the bus. I waved and blew kisses, but he didn’t even look my way. He is so ready to get back to the world!

Jack has FINALLY started his adult program! I hate calling it his adult program — it sounds so cold. Instead, we’re calling it graduate school and Jack seems to love graduate school. He has gone two days with Maria so that she could help everyone learn how Jack works and she reports that (no surprise) everyone is friendly and loves our boy. Today was the first day Jack went solo and we’re all very happy for him. And, for me it was kinda wonderful to watch the bus pull away and to walk into an empty house.

I’ve spent the whole day doing schoolwork, but just knowing I could blast some music or jump in the pool or watch Bravo without anyone judging me feels good. Also knowing that Dan is finally meeting his colleagues in person, Anna is going fraternity parties (and in-person classes) and JackO is spending time with friends at graduate school – makes me feel like we are on the other side of COVID. I can deal with the annoying alarm and crazy mornings if it means that our lives are coming back!

Let’s keep it this way folks! Do your part — Get vaccinated, continue to wear your masks and PLEASE stay home if you are sick. 

Love, Jess

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

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

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

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