Sharing Jack

I had the honor of meeting a fellow ALD mom on Friday. I say “meeting”, but I’ve known her for a while, and it was more like reconnecting with an old friend. Her family’s ALD story is very different than ours, but she and I are both fluent in a language that few are privy to. I walked away feeling so grateful that she had reached out and looking forward to our next visit.

While we were catching up, she asked how Jack was doing. She knows his life is complicated and as an ALD mom – and an OT – she understands more than most people what complicated looks like day to day for families like ours. I shared with her how well Jack is doing, but how different it is now that he is getting a bit older. She asked if we would ever consider a residential facility for him.

This question used to feel like a punch. The idea of having Jack living outside of our home seemed crazy, callous, even irresponsible. That judgment has faded. I have friends in the special world that have found wonderful places for their adult children to live. Their kids are thriving. It can be the right choice for the child and for the family. We are not nearly ready for a dramatic change in our living situation, but we are starting to share Jack. A little.

With me in school and Dan busy with work, we have tried to fill Jack life with fun activities. Jack goes to a wonderful adult program three days a week. We trust that he is safe and well cared for, but we don’t really know what he is doing from the time his bus leaves our driveway to when he returns home 7 hours later. Jack has afternoons with his new friend/caregiver, Ava, and his Other Mother, Monica. Jack also spends two days a week with Maria and her family. They usually spend those days at their house cooking and eating and having adventures. This week, Maria and her family picked Jack up on Thursday and we didn’t see him until Saturday afternoon.

Dan and I have always managed to sneak away a few times a year for a needed break, but this time it was Jack packing a bag and getting away. It felt so strange for Dan and I to walk by Jack’s room in the morning and see his bed empty. It felt strange not see him perched on his stool at the kitchen island laughing at his Impractical Jokers. But I need to be honest — we did enjoy the time alone together AND Jack loved his time with his other family!

We are a long way from being ready for a full-time placement, but I think time with his other family every now and then is perfect!!! Thank you Maria and fam!!!!!!!!

Love, Jess

HaPpY 2022?!?!?!?!

There are few things as depressing as taking down the Christmas tree. It literally screams – THE PARTY IS OVER!!!!!!!!

We had a great holiday season, but this year’s celebrations were tainted with a constant fear of being cancelled. We had piles of fun activities planned — family parties, visits with friends and plans to celebrate Anna’s graduation (YES – our Banana is done with school). Leading up to each event we’d scrambled to find a test, swipe our noses and pray — COVID was everywhere!! We were almost resigned to getting it (hoping that our boosters would do the trick). Good news is we managed to sneak in almost all our plans, and so far none of us got sick with anything (but perhaps a little bit of a hangover here and there).

Yesterday when I started taking down the holiday decorations, I thought about all the fun we had over the last few weeks and then heard Anna packing up and Dan starting our 11th load of laundry. 

Anna’s now back in Baltimore, Dan’s upstairs being loud about crypto currency, Jack is out with his other mother, Maria, and I’m sitting at my desk wondering how I’m going to work 20 hours a week as a counseling intern while going to school full time. I have the news on in the background and COVID is continuing to try to cripple the world, there are warnings about threats of violence on the anniversary of January 6th and someone just mentioned it might snow on Friday.

The party is indeed over!

I’m trying to remind myself that 2022 is going to be a great year. Anna starts her life as a grown-up while living/working in Baltimore and applying to medical school. Dan has his job that he loves and his Old School Vinyl Podcast. I will be finishing my master’s program and start my twentieth career as a counselor. And, Jack will continue being the happiest man on the planet☺️!

Here’s to a fantastic 2022! May it bring everyone joy, health 😷and happiness!! I promise I’m toasting with a simple glass of water 😉

Love, Jess

Max Torrey

We got ourselves an early Christmas gift! 

We adopted Max after seeing him one too many times on our local Dogs of SOMA Facebook page. Our family kept looking at his sweet face and finally decided we needed to meet him. First, we took Tupelo to Max’s foster family’s house for an introduction and then Max came to our house for a day to see how he got along with Jack. Max never left. Look at his face! Look at him with Tupelo! Look at his ears! No way we could say no to this guy.

Lost Paws Animal Rescue is an incredible organization who paired us with both Tupelo and Max. They rescue dogs and cats from all over the country and place them with foster families until these beautiful animals can find their forever home. Tupleo had been in a shelter in South Carolina and Max was found on the streets in Puerto Rico. Now they are loved and well fed and part of our family.

Special thank you to Joe Rispo who is our Lost Paws/dog whisperer and to the foster family – the Pressels — who cared for our boy before we even knew we wanted another dog.

Love, Jess

It was time

We did something last night that needed to be done. We’ve discussed it as a family for months but were waiting until we were all on the same page. After enjoying a great holiday, we figured we could handle anything. Everything else we had tried hadn’t been working and it was starting to look really bad. It was time. Besides, we needed Anna to be here. She’s not just our family cheerleader, but she’s our family barber.

We shaved Jack’s head last night. His hair has been thinning for a couple of years and there was no magic shampoo or haircut that could hide it anymore. Anna kept reminding us that “bald is beautiful” and showing us photos of handsome men with a “clean look”. Our hesitation had nothing to do with not liking a bald look, it was that we have seen Jack bald before and those are days that we don’t want to remember.

But Jack is NOT sick. I like to blame ALD for most things, but there are other genes lurking in my family tree that might be at work. It was time.

When I walked into Jack’s room this morning, I did need to make sure that I had plastered a believable smile on my face. It’s going to take me a minute to get used to his new look. Change is tough — but he looks very handsome – just different.

Who knows – this shave might be a reset for his hair follicles, and Jack could return to needing shampoo, but for now he is bald and beautiful!! AND, he is in need of some new winter hats!!!

Love, Jess

THIS was a holiday!!!!

Last year we went to my parents’ house in Tuxedo Park for Thanksgiving. It was just the six of us humans and three dogs – Keegan was still with us. We had a great day, but it didn’t quite feel like a holiday. This year we filled our house. Torreys, Perrys, Cappellos, Palets – 21 people and 5 dogs!!! 

There was food in the oven, on the stove, on the grill — even in the toaster. We had mattresses everywhere and used a beer pong table as an extra table. We needed our extra fridge for food, so our patio was filled with beer, wine and soda. I kept encouraging people to go take a nice walk in the reservation while I got things ready, but then more people would wander into the kitchen. Dan played music a little too loud and we played dice until later than we should have.

THIS was a holiday!! I hope everyone else experienced some chaos yesterday and is enjoying some delicious leftovers today!!!!

Happy Thanksgiving!!!!

Love, Jess

What’s Jack doing right now?

I have no idea what Jack is doing right now. In fact, I have no idea what Jack is doing between the hours of 9-4 on Tuesdays or Wednesdays or Thursdays. He comes home happy, but I don’t know what he’s eaten or who he’s seen. I don’t even know if he’s gone to the bathroom unless I have a hint because he’s wearing a new set of clothes. 

Since Jack’s post-ALD-life started in 2007, he always had a one-to-one aide at school. Each one of those amazing people became part of our family quickly and their daily correspondence was a welcomed part of our day. We knew what Jack had eaten and when. We knew if he had had therapy that day or spent time on the playground or in the pool. We knew if he had celebrated a friend’s birthday and we always knew if there was a party that involved music and dancing. Taryn/Sabrina/Sara/Monica would send pictures and notes and it was the next best thing to being right there with JackO.

Now Jack is attending Universal – it’s an adult program and it’s different. At first, I hated the different, but I’m starting to apricate that it is good for me to let go a little. Jack is 23 and I know that his program is filled with staff that care for their clients. They know how to keep everyone safe and well-fed and entertained. Besides, Jack would let us know if he didn’t like the program. He might be lacking speech, but he has a way of telling us plenty through his beautiful eyes.

I would love a story or two about his day, but I’m willing to give our boy a little independence. After all, I am not sure what Anna has eaten today OR if she has gone to the bathroom — Why shouldn’t JackO get some privacy?!?!?!

Having a child with disabilities is challenging. It took us years to get accustomed to our new life, but we did. Having an adult child with disabilities is taking a little time to adjust, but we will. That’s what we do. And, Jack will — once again — lead the way!

Love, Jess

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