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.

Special Education Mom

Joanne’s beautiful boys in their younger years

I adore my friend Joanne for many reasons. She’s an extraordinary blend of Brooklyn tough, brilliant mind, and the warmth that comes when you’re faced with caring for your special child (in her case two children with special needs). She also has no fear of sharing a large pizza, farmer’s salad and an order of crostini with me at Arturo’s without mentioning the calories (ohhhhhhhh, how I miss those lunches).

When COVID hit, while I was focusing on how I was going to manage getting groceries and how long my hair would hold up before showing it’s true colors, Joanne was researching the law and contacting the State about resources for her sons. 

Four month into this, I’m finally in a full blown panic about what’s next for Jack and I haven’t been sure how to share it in words.

I don’t need to. Joanne has done it for me AND she shared it on CNN.

Keep fighting/advocating Joanne. Ben and Sebastian need you. Jack needs you. No pressure — but the entire special needs community needs you!!

Please click below to read her post and don’t forget to watch the CNN piece!

CNN

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.

ALD Connect Peer Mentor Program

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Thirteen years ago we were in the hospital living through transplant. We’d only heard the word Adrenoleukodystrophy for the first time four weeks earlier. We didn’t know anyone who had ALD or who had even heard of the disease. Our doctors didn’t even have much information to share.

We were terrified and we were completely isolated.

It took months to connect with any other ALD families — it was a time before social media and Googling ALD simply lead us to horrifying stories and even more horrifying statistics. Once we found a couple of other ALD families, we did find some comfort, but it was often short-lived as their journey’s took turns down dark paths. Fear and guilt weighed heavy in continuing those relationships.

It took years before our family really found our ALD community. Smiles and Duct Tape – the blog, then the book – found it’s way into the hands of a member of the board of ALD Connect and she reached out to encouraged me to go to their next meeting (thanks Kathleen). Attending a panel of ALD patients and caregivers and then my first ALD Connect Annual Meeting was empowering. It was years after Jack’s diagnosis and transplant and it was when I first realized that our family had reached another chapter in our ALD journey. Being surrounded by people who knew our disease – who lived our disease – was inspiring. And, we were no longer weighed down by fear and guilt and were finally strong enough to be able to provide help. Sharing our story with other families and doctors and organizations studying our disease — it’s (I hope) helped other people, but it’s absolutely helped our family find strength and take some power back.

ALD Connect asked me to attend a meeting last year to find out more about peer to peer support programs and how they can help rare diseases like ours. I was honored to be asked to represent ALD Connect and found the conference fascinating and reminded me of how our family felt thirteen years ago. Scared and alone.

The first speaker at the conference talked about the added stress of feeling isolated that families go through when facing a rare disease. They’re not just battling the disease, they are often battling the disease without any support from people who understand the disease the way ONLY PEOPLE WHO HAVE LIVED IT can understand.

ALD is a horrible disease, but the people effected are an incredible group. It took me a while, but most ALD families don’t take years to find the strength to help others. AND, thanks to social media, our community has been able to more easily find each other. Informally, many in our community have been acting as mentors, but ALD Connect is now rolling out a more formal program.

The ALD Connect Peer Mentor Program is now welcoming our ALD community to reach out if they would like to be paired with someone within our community who has experienced a similar path with the disease. A group of incredible mentors have been selected, representing each phenotype of our disease, and they are looking forward to being a resource for support, encouragement and a shoulder when needed. Please contact me or admin@aldconnect.org if you are interested.

TOGETHER — ALONE

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Yesterday we just received Jack’s cap and gown with a note regarding his graduation celebration. Each graduating student will be scheduling a time when their teachers/therapists/principle will arrive at our homes and, from the safety of their cars, the staff will play Pomp and Circumstance. The students, dressed in their graduation finery, will pick up their diplomas from the lawn as the school films them. There will be a virtual graduation in June to watch Jack and all his classmates TOGETHER — ALONE.

I’m proud of his school for organizing such a thoughtful event, but unpacking the cap and gown brought me to tears. It’s so unfair that these kids, who have each suffered so much in their lives, are having yet another thing stolen from them.

I know we are supposed to focus on being ALONE — TOGETHER, but this virtual reality we are living sometimes feels more TOGETHER — ALONE.

Our family has done very well for the last 69 days. We’ve not complained (too much) about our current circumstances. Instead, we’ve focused on being grateful for our health and full fridge and paychecks and toilet paper. I think part of our positive attitude has been because our family has dealt with being quarantined before — first in a hospital and then at home for months and months following Jack’s stem cell transplant. This time, we haven’t been in charge of IV medications and taking turns sleeping in Jack’s room to make sure he was still breathing. AND, this time we haven’t been alone. All our friends and family have been doing the same thing. Most of the world has been at home.

So, instead of feeling sorry for ourselves, our family has taken the opportunity of this crazy time to slow down and do what we can. We’ve created a rather magical garden in our backyard. We’ve cleaned out closets and revisited hobbies like yoga and puzzles and painting.

Sure, we’ve all missed some things. Anna missed much of her second semester living at school. She missed parties and lacrosse games and The Preakness. Dan missed business travel and planned hikes and baseball. I missed teaching and spending time with my new nephews and trips and being in Listen to Your Mother. Jack’s missed school and friends and hugging (and licking) people other than his family.

Now he’s missing his graduation.

Like being quarantined, I’m trying to remember that he’s not alone in missing his graduation at school. Many of our friends have children celebrating their high school/college graduations virtually, and that does make it a little easier. There is power and strength in numbers, but it still stinks. I do hope that once this crazy time is over, Jack can return to his beloved high school and march in a ceremony with his classmates. They deserve it.

Until then, we will continue to settle down and continue to settle in, but we are starting to open our lives a little. Starting to plan some time with friends — is a SAFE way (or safeish). Dan met a friend to go fishing for an afternoon and, from a distance, got to catch up and share stories. Anna had a couple friends over the other night and they sat 6 feet apart around a fire pit. I sat out with them longer than I probably should of, craving in-person conversation (sorry girls). I can forgo haircuts and restaurants for a while longer, but I’ve missed my  friends terribly. I’ve started to make some safe (ish) plans with pals and I can’t wait for Jack to get to do the same with his friends. Not sure when, but we are going to get the graduating class of Pillar High School together again.

Until then — Congratulations Class of 2020!!!

Love, Jess

Social Distancing – Day 1

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I got to sleep a little later than usual. There is something nice about not having to frantically get Jack organized with the deadline of a bus pulling into the driveway at 8:20. It was raining and foggy, so even the dogs seemed okay with having a slow morning. I checked my phone and spent a few minutes reading through emails before getting out of bed. When I peeked into Jack’s room, he was still asleep. A quiet cup of coffee before the morning madness is always a treat, so I quietly walked into the living room.

Our usually tidy living room coffee table was littered with paints, brushes and a remarkable painting of Michelle Obama — Anna’s major is Molecular Biology but she minors in Art. There was a deck of cards thrown carelessly on the couch and there were empty wine glasses and soda cans on the side table. I turned to the kitchen and Dan was sitting at the table in his pajamas, cup of tea in his hand and his laptop open.

This is social distancing Day 1.

Dan’s office is closed with the majority of the company working from home. Hopkins sent Anna home on Wednesday and, although Jack’s school remains open for now, it’s seeming like a good idea just to hunker down. 

Jack would have a difficult time fighting the symptoms of COVID-19. That’s a nice way of saying that he likely would not survive. We’ve worked very hard for 13 years to avoid germs and COVID-19 — IS NOT THE FLU. We are going to avoid any unnecessary outings and try to just hang out here and enjoy some quiet family time. It’s the right thing to do for our family and the right thing to do for our community.

Anna and I did have a long and LOUD conversation yesterday about our family and social distancing. She thinks I’m crazy, but I think we are all on the same page now. At least for today.

Besides, perhaps slowing down for a few weeks as we wait this out will be a good thing. As long as we don’t focus too much on the news or the stock market or the giant mess in my living-room.

Good luck folks, try to hunker down and don’t forget to wash your hands!!!

Love, Jess

In other news — Jack’s school released this wonderful video. You might recognize some of the people.

Class of 2020 Challenge & Rare Disease Day

Are you sick of the Class of 2020 Challenge on Facebook?

I found all the baby photos adorable, but started to get a little tired of all the prom, varsity sport and college sweatshirt photos. ln fact, I was getting ready to toss my laptop out the window (although in our new ranch it might not have been such a big deal). I’ve already been through the torture of watching Jack’s former classmates have their photos posted all over social media as they graduated high school and moved on to their next adventures. And, now I was sitting watching their younger siblings move on, feeling a little sorry for Jack – for myself, until my friend Jen asked if I wanted to join in. “Jack’s class of 2020”, she reminded me.

Thanks Jen. 

When your child has special needs, they get the luxury of three extra years of education paid for by the state (we can only hope that that continues – don’t forget to vote in November).  Thanks to Jen, I realized that Jack IS class of 2020 and who cares if he’s three years older!

As I sort through the photos of Jack over the years, it’s a constant reminder of before and after ALD. A reminder of what life could have been. What life could have been had we known that ALD was lurking in his body. Had we known and treated him a year earlier, Jack would likely have been class of 2017. He would be in college asking for an emergency Venmo for the Uber he had to take to go to the Trader Joes to get Riced Cauliflower. Now we just have Anna making that request.

Saturday is Rare Disease Day – or as I like to call it – The Day When People with Rare Diseases get to Remind People WITHOUT Rare Diseases that We Exist.

I’m not asking for donations, just to read about Aidan’s Law , sign THIS and pass it along to every single person you know (I was asked to send it to 5 people, but that’s lame).

If you haven’t seen what a rare disease looks like at our house, take a peek HERE.

And, if you want to see Jacko’s Class of  2020 Challenge – here you go!

Love, Jess

She Can’t Sing

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She can’t sing.

I mean that seriously. She’s terrible. Like – hurt your ears bad. What makes it worse is that she tries. Sings loud and proud, but she shouldn’t. Because she’s dreadful.

I know it sounds mean, but we point it out whenever we have the opportunity. After all, isn’t that our job as parents? We can’t always just be applauding her.

Anna excels at academics, athletics, and artistic ability. She’s kind and graceful and beautiful. She’s generous and funny. It’s a little obnoxious, so we feel like it’s important to remind her that she will never be on The Voice or on Broadway. And, if she cares about people’s hearing — she should never even sing karaoke.

I wish I could take credit for half of who Anna is, but I think she is who she is because everything just came together and fit — like one of those 1000 piece puzzles with a huge amount of sky. You think there’s no way anyone can make it happen, but it does (at least on Block Island with Nana Sue taking the lead).

Anna was born determined and smart and when life changed for our family, she managed to get what she needed and continued growing and learning. I’m proud of all of her accomplishments, but when she does something that I can actually understand, I’m in awe.

Anna wrote a blog piece for Remember the Girls — an incredible organization founded by Taylor Kane, created to give a voice to women/carriers of x-linked diseases. Anna wrote about being tested for ALD. Her voice shines through in this piece and I couldn’t be prouder. She can’t sing, but she can write.

My Experience Getting Tested for the ALD Gene

Love you Banana.

Love, Momo