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.

Banana is 20!

Today is Anna’s 20th birthday. Like so many people, she isn’t celebrating it the way she had planned. Anna loves her birthday almost as much as I do, and she has been talking about her birthday plans since last June. Piles of her Hopkins crew would fill our house and then her childhood friends would join in and fill the yard and pool. Driving the neighbors crazy was really the only thing we worried about until COVID arrived. 

We modified the plan and then modified it again. Now we are hoping that the weather holds so that a few of her friends can come for some from a distance/Purell-filled fun in the pool. If that doesn’t work ,out at least she can celebrate with her three biggest fans – me, Dan and Jack.

The last four months have been filled with cancelled plans and profoundly adapting everything else. It wasn’t just her birthday, Anna’s entire summer has been altered. She was going to be waitressing here in town and then working in NYC with a doctor who works with children with neurological disorders (specifically Leukodystrophies). The waitressing job disappeared and then Anna got word that the hospital where she was doing her internship was only allowing “essential staff” on premises. Luckily the doctor was willing to adapt his plans and Anna is spending hours a day in her room working on a project that I don’t really understand, but she finds fascinating.

Anna has also found a job with the Department of Developmental Disabilities working with a handsome young man with special needs — Jack. She has hikes planned and has already been working on swimming lessons for our boy. Jack has had a lot of caregivers over the years, but I can say, without a doubt, that he has found his new favorite. And, for Anna, it is incredible to actually be getting paid for something she has always done without complaint. She adores spending time with her brother. She is a truly special — special sibling.

Anna is such a special young woman and I’ve always been proud of her heart and brain and determination, but COVID has shown me another quality she has that I appreciate. Anna is able to adapt. Our family tends to be “glass half full” people, but Anna seems to look at every glass as over-flowing.

Love you Banana and hope that you enjoy your quiet(ish) birthday!!! It may not be the birthday party of the year, but we promise that when the dust settles, we will P-A-R-T-Y!!

Love, Mom

PS As I have been writing this, I’ve been seeing friends sneak through the backyard gate. I need to go out there and start screaming, “Six Feet!!” and “Purell!!!”.

Day 2

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I haven’t been this out-of-sorts in years — since 2007/2008, when we lived with a suitcase always loaded in our car in case of an unexpected trip to the hospital. The difference is that this time it’s not just our family that’s living with the anxiety of the unknown. It’s our entire country/planet.

Like an eerie calm before the storm, and we don’t know what the storm is going to bring. There are limited cases of COVID-19 in our area, but we assume that it’s just a matter of time. Will things get as bad as China or Italy? Who knows, but this has already effected school and work and parties and conferences and trips and Dan’s beloved March Madness.

Our family is social distancing because we’re scared that the virus can be lurking without symptoms for days and COVID-19 seems to be very contagious. There’s so much we don’t yet know and I don’t want to look back and wish we had done more to protect ourselves — to protect our community.

I’m scared about Jack’s health and about the health of all of our friends and family. I’m scared about hospital beds filling and a lack of respirators. I’m scared about small businesses suffering and the entire economy crumbling. I am also a little scared that Anna and I are going to kill each other.*

It’s not that our family is just sitting in front of the news all day. We’re all trying to distract ourselves. Anna is heading out to play some tennis with friends, I’m going for a long walk with JackO and Dan has a pile of yard work (we figure outside is safe). My folks even came today for lunch and we had a nice time, but there were no hugs. I can’t wait to go back to normal — I could really use a Mymom/Nonno hug right now. 

Love, Jess

* Kids are suffering terribly. Their lives have halted indefinitely. They’re missing school and work and parties and games. My heart goes out to my sweet girl and to all of her peers. IT’S HORRIBLE. Now, get home, wash your hands and be nice to your parents.

 

 

ALD Family Weekend 2020

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It took our family a while to feel like part of the ALD community. Part of it was that the ALD community was hard to find in 2007 — Facebook was just for the cool college kids back then and, although the internet was already full of information, it was tough to sort through and finding communities  like ours was a challenge. To be honest, we were also completely overwhelmed with what we were going through.

Early on, I did find a few other parents whose sons were struggling through transplant. It was difficult because this disease (especially with a late diagnosis)  didn’t lead to many happy stories. So I hid for a long timed. Just focused on Jack and his ALD journey (oh, and raising Anna and walking our dogs and keeping house and teaching art and writing). I didn’t really become super active with the ALD community until Smiles and Duct Tape was published and Kathleen O’Sullivan-Fortin (one of my ALD heroes and board member of ALD Connect) reached out and encouraged me to be more active. Thank you Kathleen;)

I’m so impressed by the ALD newborn screening parents. Many of them have jumped right in. Speaking at conferences, talking to legislators, and bringing the ALD community even closer together. I’m inspired by them and very optimistic that their families are the beginning of the next chapter of this disease. A great chapter.

Alison and Nic Adler’s son, Lucas, was diagnosed through newborn screening in California and they wasted no time. No only is their beautiful boy is being monitored by top doctors, but they are working tirelessly to spread the word and bring our community even closer together. They have organized an ALD Family Weekend at the Painted Turtle Camp in Lake Huges, CA May 1-3.

Make sure to check out the video on the link below:

www.aldfamilyweekend.com

Our family is looking forward to this wonderful event. ALD folks – sign up today!!!!

Love, Jess

PS Our first ALD friends, the Cousineaus, are also working to make this happen. We can’t wait to see them again in person!

What is a REAL Disability?

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Jack is blessed with many friends, but he has one bestie. A guy that shows up to our house and Jack doesn’t hesitate to get up and race to greet him at the front door. Even, like today, when Jack had been sitting on the toilet. I apologize to any neighbors who happened to be looking in our windows at the time. Jack can’t help himself when Peter arrives.

But that is not today’s story.

Today’s story is about what happened when Peter and Jack left Speir Drive to head to their favorite spot — The Able Baker. Maplewood Village being a weekend destination for many local folks, the boys needed to do a few loops before finding a free parking spot. It was a handicap space nice and close to their favorite bakery. It’s not just Jack who qualifies for the “luxury” of convenient parking. Peter – Jack’s buddy and Community-Based Instructor/Mentor – also has some challenges. Peter got out of the car and then helped Jack out of the passenger-side, when a women in a minivan stopped her car and loudly ask if they would please, “empty the spot for someone with a real disability. Someone with a wheelchair or walker.”

I don’t know what exact words were exchanged, but Peter was forced to explain that he and Jack were REALLY disabled. That they both qualified to fill the spot and for safety reasons they needed to be close to their destination. I’m sure that Peter said it in a way that was polite and clear. THAT’S who Peter is.

I might not have been polite, but I would have been clear. Judging peoples limitations from the front seat of a minivan is ridiculous and ranking disabilities is crazy. I’m the first person to shame people for needlessly using parking reserved for people with disabilities, but if someone has the placard who am I to need to know WHY they have it. Maybe their disability requires them to use a wheelchair or a walker. Perhaps it’s a heart issue or a back problem OR maybe it’s that maneuvering their companion through a crowded parking lot is dangerous.

So, if you were in Maplewood today and happened to see two handsome young men, enjoying some large cupcakes before getting into a car that was parked in a handicap spot – don’t worry. They earned the spot.

Love, Jess

hApPy NeW dEcAdE!!!!

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We are prepping for a new year full of celebrations and new beginnings — a new nephew arriving, Jack’s graduation, finding and sending Jack to the best adult program on the planet (we’re getting closer) and Anna surpassing her Chilean-born mother in her ability to speak Spanish (Anna left for Salamanca on Saturday).

We’re also prepping for a new decade full of celebrations and new beginnings. There will be many. I’m sure there will be many, but I know how life works. You can’t plan life too far in advance. It’s a waste of time that just leads to the universe laughing at you. So, I will leave it at . . . 

The 20s are going to be wonderful — LET’S CELEBRATE!!!!

Wishing everyone a very happy, hApPy holiday from our home to yours. May 2020/the entire decade be filled with joy, love and peace. And, laughter . . . lots of laughter!!

Love, Jess

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Grateful for Laundry

I’ve been grateful for so many things this last week – my heart is full. Dan threw me one hell of a birthday party last weekend and my only complaints were that I wasn’t able to get a proper visit with everyone and it ended too early (4:00 am . . .). Then, just five days later, we hosted a big Thanksgiving with all three sides of the family represented — the Torrey/Perrys, the Cappellos and the Mackays. Our house was so filled with guests all week that I never really knew how many people would be there for dinner or where everyone was sleeping. All I knew for sure was that it was amazing.

Today I’m grateful for laundry. 

Anyone else get that awful feeling lurking in the pit of their stomach when a fun time has reached it’s end (no – not a hangover, but that too)? I’ve gotten this feeling while driving home from Block Island on Labor Day and when Dan and I drag the Christmas tree to the curb in January each year. It’s part exhaustion and part relief BUT mostly it’s just knowing it was a great time and it’s over.

Our last guest left today around 1:00 and I’ve been loading and unloading the laundry and the dishwasher more times than I can count. I’ve been vacuuming and making beds and folding towels AND I am so grateful to have a distraction. 

Anna is home for one last night and we’re going to enjoy it just the four of us, around our little kitchen table. We’re ordering in, watching a movie and going to bed early. One last hoorah before the holiday is officially over.

I hope everyone had a wonderful Thanksgiving and has some laundry to do.

Love, Jess

I would like to thank everyone who made a donation to CPNJ – Pillar Care Continuum High School in honor of Jack for my birthday. We raised over $2500!!! It’s not to late if you want to help a great cause — CLICK HERE!

 

50

 

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Next month I’m turning 50. I’ve always loved my birthday. For me birthdays are a reminder to reflect on the previous year, an excuse to celebrate the future and … I love presents (honestly, I LOVE PRESENTS). I didn’t just revel in celebrating 10 and 17 and 21, I embraced 25 and 30 and 40, but this birthday feels a little different. It’s 50. 50 sounds so grown-up. 

Shouldn’t I be more responsible? Shouldn’t I know more? Shouldn’t I be able to complete at least the Monday New York Times crossword puzzle? Shouldn’t I have learned to switch to water after the second glass of wine?

Like many of my friends reaching this milestone, I’m finding myself thinking about what I’ve accomplished in the last 5 decades and what I see shaping up for the next half of my life (I could make it to 100).

Overall, I’m fairly pleased with my accomplishments thus far. No fortunes made or much notoriety, but I have plenty that I’m proud of. I survived school (which was tough for me) receiving a bachelor’s and even a master’s degree. I married the love of my life, and with him survived more ups and downs than most couples. I’ve had careers as a photographer, a teacher, a writer and even gotten away with being a nurse when needed. I’ve had three books published (you thought Smiles and Duct Tape was the only one? There’s also Squeeze and Jack and the Pumpkin). I’ve managed to always surround myself with incredible people, who seem to enjoy my company and hold me up when I’m falling. And, I’ve raised two remarkable children – by far, my proudest accomplishment.

Of corse there are things that I regret. I wish that I had learned more languages (at least not lost my first language – Spanish). I wish I had traveled more and not given up on my photography. I wish I invested in Amazon and Apple early on. I wish I had always treated people the way I wanted to be treated. I wish I had learned to always think before I spoke. I wish I had taken more videos of the kids growing up. I wish I had learned how to play the guitar, knit, and sail. . I wish I had pushed for an MRI for Jack, just a few months earlier . . . 

There are things I would change if I could, but for the things I’ve had power over – I’m (mostly) proud. It’s the next half of my life that has me stumped. Dan and I will not have the empty nest that many of our peers are experiencing, but things are quieting down a bit. I’ve been thinking of going back to school to start another career, but am wondering if 50 is too old to start something fresh. I’ve been working further on a few book ideas that have been torturing me from my sleep. I’ve even been thinking about starting a program for adults with special needs – if we can’t find it, we may NEED to build it. All sound ideas, but I’m waiting for that kick in the ass that has always found me when I’ve needed it.

Until then, I am going to busy myself by searching the internet for “good careers for people of a certain age” and “appropriate haircuts for 50-year-old women”. I will also continue to work on finding the perfect adult placement for our boy and maybe sign up for some guitar lessons.

Love, Jess

I will also work on remembering to switch to water after the second glass of wine. No promises.

 

the last FIRST day

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Not a traditional FIRST DAY photo, but it’s pure Jack

Today was Jack’s last FIRST DAY of school. In June he’ll be graduating CPNJ Horizon High School and starting life as an adult. An adult who is funny and sweet and handsome AND and adult with special needs. Twelve years in, and we’re finally comfortable with having a child with special needs, but still — we’re bracing ourselves as we approach this new chapter.

I know we will figure this out – that’s what we do – but as Jack got on the bus this morning, I couldn’t help but get struck with that feeling that we’re just ten months away from a new unknown. Trying to distract myself from the panic, I sat on the black iron bench that was once my grandmothers and looked at the last FIRST DAY photos of JackO. What a life this kid has led.

Not able to shake the feeling all day, I dug through our not-yet-unpacked boxes in the basement for hours until I found it. Jack’s first FIRST DAY picture — Morrow Memorial Preschool. Dan had arrived at the church’s Baker Street entrance at midnight on a cold, early spring night, wanting to be sure that Jack’s name would be at the top of the list (in fact, he was the 7th or 8th, but he made it in). It was the school that all our neighbors had promised was the best and we knew our boy deserved the best. When we walked Jack into the doors of the preschool the first day of class*, Jack was a little nervous, but he was so proud. 

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I know today as Jack walked through the doors of his beloved high school he wasn’t nervous one bit. Jack rules that school — his magical smile making up for his lack of words. I’m so proud of our boy, who’s life has changed in more ways that we could have ever imagined 18 years ago. I just want all of his first days to be wonderful.

We have ten months to figure out the best plan for our boy. We will make it happen — even if it means we need to camp out for a week to make sure his is top of the list.

Love, Jack’s mom

* Jack’s first day of school was September 11th and we will always be grateful that Dan took the later train into work that day. ALD aside, we are a very lucky family.