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🤪

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

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

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.

second wave

I used to love the fall. It’s crisp air and magical light always arrived to some relief after a busy, hot summer. The beginning of the school year always felt like a new beginning and our calendars were filled with annual events — harvest parties and parents’ weekends. And, the fall culminates with a wonderful holiday — my birthday.

This year is different. As the temperatures lower and the leaves begin turning, I’m starting to panic.

I’m worried that we’re approaching the second round of hunkering down as the fall has arrived and the COVID numbers have started ramping up again. This time we know what it looks like to quarantine and, in this case, knowledge is not power — it sucks.

When all this started in mid-March, we thought it would be a couple of weeks. Almost like an extended snow day. We filled our freezers with food and set up the puzzle table in the living-room. Having the four of us home was like an unexpected staycation. Am I the only one that thought it was kinda fun? For a couple of weeks . . .

Then the reality crept in. A few weeks of missed school turned into no prom or graduation for Jack. Anna’s spring semester ended at home and then Hopkins announced virtual learning for the fall. Dan’s office started talking about limited returns to in-person work, but not until 2021 and every single house project I had on my list got finished.

Just as we thought that we would go nuts (with just our tiny pod), the weather warmed and our backyard filled with other people and life was okay again. Different, but okay. We got into a rhythm. Dan realized that he could sneak in some hiking while on calls. We planned at least one dinner a week with friends or family. Anna headed back to study in Baltimore for a change of scenery (and people). Jack got to spend some time with old friends and enjoy long walks and hours in the pool. We even ventured to friend’s yards and restaurant dinners (in parking lots), and snuck in a couple visits to Block Island. Our family realized that we could manage our strange new life of masks and Purell as long as we could see some people. It wasn’t a normal summer, but it was lovely.

Now days are getting shorter and cooler, and except for a few fire-pit nights planned, I see a very empty calendar. It’s hard to make safe plans if we don’t have the ability to be outside.

I hear people saying that things can’t shut down again. The economy will be ruined and people will go insane. I agree, but I’m just not sure my family has a choice.

Jack’s immune system is pretty strong 13 years post-transplant and we are usually able to manage his Addison’s Disease and Epilepsy with medications. Jack might be able to get through COVID without too much harm. But he might not. My parents might do just fine. Or not. And what if I got sick? Not in-the-hospital sick, just really sick. Who would care for Jack? Where would I care for myself?

We’re a family who is erring on the side of caution and I’m worried that it means that we will soon be limited to our home and a tiny pod. I don’t WANT to do it again. I’m just guessing it’s going to happen. So for the next few weeks we’re planning to do as many outdoor activities with friends/family as possible. We are also going to load up on some extra food for our freezer and grab a little extra toilet paper.

I know we are not alone in worrying about friends and family who might be more vulnerable. What are you doing to protect them?

Love, Jess

safe(ish) choices

September is here and it’s been fascinating to see how everyone is getting back into the swing of school/fall — in-person small classes, home schooling, virtual learning, hybrids. Our family is still struggling to find our “back to school” routine. We have a messy, make-shift assortment of activities for JackO that we seem to be constantly changing (although he is happy and busy(ish)). Anna is back in Baltimore, taking classes from her apartment and has already been quarantined twice after being exposed to people who tested positive for COVID. Dan is continuing to work from our home office and seems to enjoy working unshowered in tee-shirts, but I do hear him throughout the day yelling at Fios. I win the award for the least productive family member. I do start each week with a master plan of writing and work-outs, but instead find myself doing everything but. At least my closets are clean.

These are crazy times and I keep reminding myself that things will get back to normal at some point. Maybe NORMAL isn’t the right word. 

Thirteen years in, and our family still refers to our lives as before and after ALD. Two years following Jack’s transplant, we still had a suitcase in the trunk of the car just in case we found ourselves in the hospital. And, when everyone was struggling to find masks in March, all we had to do was go into Jack’s closet where we had our leftover pile from post-transplant isolation days. Having gone through that time in our lives, scarred us and left us always feeling like a shoe could drop at any moment. I resented this unease for years, but I guess it prepared us for this latest sh^tshow (I tried to find another word, but noting really worked as well).

Having learned from our ALD experience, I would imagine the entire world will live for quite awhile referring to life as before and after COVID. I’m guessing that it will be years before a cough is just a cough and the pile of masks at our front door disappears or we allow the Purell in the car to dry up. I know someday we will go back to living again, but when?

Maybe instead of focusing on getting back to normal we should focus on creating a new way of living. I know for some of the country, masks have become a political statement, but here in our area masks are mainstream. It means that I now venture out into the community without too much fear. I do find I am constantly looking around for maskless faces and listening for coughs, but mostly I am just going about my business. Being out — even just to run errands — feels liberating after months of the only non-family member we would see was the UPS deliver person.

Part of our back-to-school/fall plans is seeing more people.

We are trying to have friends over at least once a week and even went out to dinner last weekend — outside. I’m taking walks with friends again and Jack has his “other mothers” and his favorite OT (we love you Mr. Galo) coming to the house again. We are even heading to visit friends and to see my in-laws for a few days this weekend. Not that any of these choices are perfectly safe, but everyone we are seeing has been hunkered down and except for a small crew of people, everyone wears masks when not outside/distanced. We feel there is minimal risk, but do appreciate that some of our choices aren’t perfectly safe. Still, we are willing to take the limited risk. Stretching our comfort level is important for us right now so that we stay sane. We were starting to go a little nuts and within a few weeks, the cold will blow in and entertaining will become harder. The flu season might also complicate re-opening in general and we don’t want to look back in November and wish we had seen more people while we could.

So that is where we are right now. Trying to get in the rhythm of the new season and control what we can. Wear masks when out, wash hands constantly and see people in a safe(ish) way.

It’s Thursday and I still haven’t done much working out, but at least I can say that I did spend an hour writing. Now I can go back to procrastinating my paperwork and organizing another closet. Maybe I’ll also reach out to some friends and see if we can make some dinner plans out on the patio next week.

I just hope that, before too long, we can worry less and hug more. Until then — Happy FALLLLLLL!

Fingers Crossed, 

Jess

ZOOM LIFE and “this is a REALLY happy mom” smile

I’m glad I waited before turning on our camera. I needed a few minutes to get my bearings. My priority was to keep Jack calm and happy. It was hard enough to hide my reaction from him —  I couldn’t risk anybody else witnessing any tears of awkward stares.

It’s one luxury of ZOOM LIFE — People don’t need to see you, until you’re ready.

Once I took a deep breath, I put on my best “this is a REALLY happy mom” smile and hit “start video”.

Last week Jack started logging onto some virtual activities with the adult program he will (some day) attend in person. The lovely staff sent us a list of options ranging from art classes to Zumba to music to virtual outings. We were excited to start participating and eager to have a bit of a schedule; especially with Anna heading to Baltimore before too long.

I knew that once we logged in we would “meet” many of Jack’s new peers, and we also knew his peers ages range from 21 — 70+ and that they all (like Jack) have rather complicated lives. 

Let’s go back 13 years to when we walked into The PG Chambers School for the first time. I managed to keep that “this is a REALLY happy mom” smile, but tears filled my eyes as I was introduced to Jack’s new peers. Our family hadn’t been part of the special needs world until Jack was eight-years-old and thrown in with no time to prepare. We hadn’t known many children with such complicated disabilities before the day we walked into the school. I know it sounds awful, but it made me sad and overwhelmed that Jack was suddenly part of this world.

The same thing happened when Jack started at Horizon High School (now Pillar High School).Teenagers with disabilities were not a population I knew and everything looked bigger and more complicated. My “this is a REALLY happy mom” smile needed to be firmly planted before I walked into the school that first day. Maybe two.

Of corse within weeks, first at The PG Chambers School and then at Horizon High School, the student’s disabilities faded and their personalities shone. Quickly, I found I no longer focused on the wheelchairs and tubes and braces. Instead, I would focus on the smiles and the wonderful energy that always filled the space.

I pride myself on being open-minded and non-judgmental. I don’t define people by their successes or their failures. I don’t judge people by their talents or their challenges. But, once in a while, I need to pause to let my emotions catch up to my brain.

Last week, as we logged on to the virtual program, I needed a second to look around at the boxes of new friends and take a deep breath, before hitting “start video”. Within a few minutes we were dancing Zumba as a family, but we weren’t dancing with our usual Torrey gusto. While ZOOM LIFE can make things a little easier, it is a bit harder to connect and feel part of something new when everyone is just a box on a screen.

If the staff at the program asked how they thought Jack and his family were adapting to their program, I’m guessing they would say that we are a lively family and seem happy. Our family IS both lively and happy, but we are human and sometimes it takes us a moment. Until then, we will dance until we can really boogie — I imagine that the staff will see the difference when it happens. AND, I am guessing it will happen soon.

I hope everyone is enjoying the tail-end of the summer and getting to do a little boogieing!!

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

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.