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

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!!!”.

RIP Finn

For years there have been five dogs roaming my in-law’s property on Block Island every Fourth of July weekend. For the last few summers, we’ve had a contest rating them and awarding The Most Rotten Dog. Finn won most years. He’d run away, he’d jumped on strangers, he’d eat garbage, he’d steal shoes, he’d eat food off platters, he was even known to bite a person or two. And, it wasn’t just while on vacation, even at home, Finn was never the perfect dog — but he was ours and we loved him.

Finn arrived into our lives 14 years ago, when we’d first moved into our house on Clinton Ave. The kids were 7 and 5 and Finn was our way of completing our perfect family. Within a year, Jack was unraveling and Finn didn’t get the attention a puppy should have. Puppy classes were traded in for doctor’s appointments and rules were replaced by yelling, “BAD DOG!”. 

Despite the changes in our house, and our less than exceptional puppy raising skills, Finn was always there for us. When we brought Jack home from the hospital following transplant, PopPop and Sue offered to take him up to Block Island, but we were determined to keep our family intact, so we kept Finn home and watched him like a hawk so that he won’t step on Jack’s IV lines or jump on his g-tube. Finn didn’t – he would just sit quietly by Jack — until the doorbell rang and then he would run like a  bullet and jump on whoever was arriving.

For the last 14 years Finn has been a huge part of our family and he has also been my personal shadow. He slept on my side of the bed and waited for me looking out the dinning room window when I’d leave the house. To avoid him scratching the door, I even learned to keep the bathroom door opened a crack so that he could find me.

Since Christmas, Finn has been suffering from seizures and “episodes”. He was losing his vision and hearing and could no longer enjoy his long walks and his usual routine of mischief. Last week, as a family, we decided it was time. His life was full of more bad days than good days, and at fourteen, his veterinarian didn’t see anything in his future but a quick decline. We wanted to do the best thing for our boy so we found a wonderful vet who could come to the house and ease Finn into his next life.

Our friends and family used to joke about life without Finn. How easy life would be without our trouble maker. Guests could come without being warned. The mailman had a chance at safely delivering mail. We could watch our nighttime shows without Finn constantly barking at the door to be let out – then in – then out – then in. But, when the veterinarian arrived yesterday, we were all in a puddle of tears. Finn had woken up with more energy than he’s had in weeks. He was not the mischievous pooch from his younger years, but he seemed fairly comfortable and happy. I kept thinking we should reschedule our appointment, but then kept remembering his last episode and how I’d promised him that we would do everything we could to have him avoid that pain.

We all sat in our living room, Finn on my lap and cried and gave our boy love as the doctor did her thing.

Dying with comfort and dignity is all that we could provide our four-legged friend after everything he provided for us for 14 years. We are going to miss you Finn and I promise I will always keep that bathroom door open — just a little — in your honor.

Love, Jess

We 

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.

Thirteen is a LUCKY number

13 years (Day +4749) . . .

Thirteen years ago we sat in a crowded hospital room and watched as a small bag of stem cells went into Jack’s central line. We were hopeful, but terrified.

Our doctors had not promised that the transplant would work and they were painfully honest about the risks involved with the procedure. They reminded us again and again, that in the case of ALD, a transplant was not a cure. Instead (if successful) it would stop the progression of the disease — the idea of these new disabilities being permanent seemed surreal. I had also done enough Googling in the four weeks since Jack’s diagnosis to know that a transplant was often followed with complications like infections or Graft vs Host Disease and sometimes with ALD, it accelerated the loss of the myelin.

We found little comfort in any of the information we’d been given, but we had no other option to save our son, so there we were — watching the cells as they entered Jack’s body.

29 minutes. Drip, drip, drip.

Dan made a set-list of our favorite music and we tried to keep our fears at bay. We made small talk with the doctors and nurses and told jokes. Jack was only 8-years-old and we promised him he would feel better soon and focused on the bonus of having a second birthday to celebrate every year.

Our family has been through a lot over the last thirteen years — both good and bad, but we’ve also had a lot of parties for Jack since we watched those cells enter his small body. One gift from ALD is that it has made our family learn to really appreciate the good days.

Today is a good day. We are healthy and the sun has promised to come out so that we can sit outside and jump in the pool. There will not be any food trucks or crowds of people, but we will still enjoy every minute of this day – and every day – with our boy.

Happy Birthday Sweet JackO!!!

Love, Mom

Stay Tuned for Friday – Jack receives his High School diploma. Big week for the Torreys!

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

A year ago today. Really?

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Thank you Speir Drive. Not that spending 49 days inside your walls with limited company* has been super fun, but you’ve made it bearable. Dan has a proper office that’s removed from distraction. Anna has the second floor to herself. Even JackO has found spaces to attend his Zoom classes. We have all settled into our new routine fairly easily. Each day Dan’s at “work”, the kids are at “school” and I’m the cook/housekeeper/teacher/baker/online shopping ninja/puzzle solver (okay, maybe I’m not completely settled in, but at least I’m busy(ish)).
When we’re not working (and the weather is cooperating), we’re all enjoying the quiet oasis that is our backyard. We’ve cleaned things up and built a lovely garden that we’re going to fill with vegetables and herbs as soon as the fear of a frost is off the table. We’ve even had the pool folks out to start fixing it up for a long — hopefully not lonely — season (Dan thinks I am nuts, but I have a feeling that he will appreciate it once it’s open and has a working heater).
We loved Clinton Avenue, and will forever miss our neighbors, but this is our home now and we are grateful for it’s flat living and ability to provide private space for everyone and a nice open living area when we want to meet up at the end of the day.
We bought this house last year to make life a little easier. We sold our 1905 center hall colonial with it’s three floors and traded it for a modified mid-century ranch. Jack could live without steps and it’s open floor plan seemed better suited for keeping an eye on him. Dan and I were excited about an attached garage that fit our cars and our old doggies appreciated being able to get to the yard without steep steps. The pool wasn’t part of the plan, but all of us thought it was a fun plus.
We never imagined when we moved in last year that our first spring in this house would arrive with a pandemic. We never pictured Anna coming home in mid march and taking college classes online from her new bedroom OR Jack doing his classes and therapies from a computer on the kitchen island OR Dan taking zoom business meetings in his pajama pants OR me looking forward to using the new mop that was just delivered by a UPS driver wearing a mask and gloves OR using our dog sheers to cut Dan and Jack’s hair OR freaking out when we’re running low on Clorox wipes OR realizing we haven’t purchased gas in six weeks OR needing to check the computer to see what day it is . . .
We never imagined any of this when we moved in last May, BUT this is where we are, and this house has helped us while we’ve been adjusting to this new TEMPORARY normal.
COVID-19 has made life complicated for everyone on the planet. As strange as it’s been for our family, I know how lucky we are. We are all healthy, Dan is able to work from home, we have a fridge full of food, our bathrooms have extra toilet paper, we have a beautiful yard to enjoy the fresh air, my parents have been able to visit, Maria (Jack’s caregiver) is still coming to help out with Jack, and our family is (mostly) enjoying each other’s company AND our quirky new house.
Happy Anniversary Speir Drive! Thanks for keeping us warm and safe this year. We look forward to many more years living here and can’t wait to fill you up again with friends and family — Jack’s graduation? Anna’s birthday? July 4th? Labor Day? Thanksgiving? 
Love, Jess
* My parents have joined us several times and Maria (Jack’s caregiver) is still coming. All three of them have been safely quarantining at home when not here.

Day 35

What does Jack think about quarantine?

I usually feel confident that Jack understands everything, but sometimes is hard to know for sure. This is one of those times.

I’ve been getting Jack up around 9:00 every morning and when I walk into his room, he pops right up and smiles. He doesn’t have the bags under his eyes that are becoming my new signature look. When I check the camera app to see how many times he woke up in the night, there’s no significant change since the old days (before COVID-19). Dan and I have been experimenting with night-time teas and melatonin and pm medications and one more glass of wine to help with sleep (maybe it’s just me who is trying the “one more glass of wine” method — it doesn’t really work, but I’m gonna keep trying). Jack doesn’t seem to need any help transitioning from the day to a restful nights sleep. 

Jack definitely knows that his family is all home, but that it’s not a normal weekend or vacation. After his morning shower, he marches into the office – where he knows his Dad will be. And after breakfast, he starts walking towards the stairs, wanting to go wake his sister.

He no longer watches out the dinning-room window looking for his school bus to pull into the driveway. Instead he knows it’s time to sit at the kitchen island or out on the patio in front of the computer. When he sees his classmates or friends on Zoom, he smiles and stays on his stool so that he can hear what’s going on.

My parents and Maria (Jack’s wonderful caregiver) are the only other people who have entered the house is 36 days. Jack is always happy to see them, but seems to understand the there are no more hugs or licks and signs I love you from several feet away. 

He definitely knows that life has changed for now, but doesn’t seem too worried. Jack has always lived in the moment. Long before ALD, he was never a kid who stressed too much about what’s coming — or what might be coming. He trusts us and trusts things will be okay.

That trust/faith was strengthened 14 years ago when we promised him that we would keep him safe. With the help of wonderful doctors, nurses, tons of prayer/positive energy and luck, we were able to keep him safe then and we are trying our hardest to keep him safe now. It’s worrying about his safety, and the safety of our entire circle of friends and family, that has me up at night and yelling at the television during the day.

I’m so worried that no matter how careful we are, bad news might find it’s way into our lives. This is a terrible virus and there is still so much unknown and no clear path to reaching the end of it’s horror.

I’m trying to hold it together, but Jack has witnessed me melting down several times over the last five weeks. Just last night he found me in bed, yelling at the television screen and he walked over and climbed onto the bed next to me. I haven’t seen him do something like that so seamlessly in a very long time (any task with more than one step can be a challenge for our boy). It was just what I needed. Jack might be silent, but he is able to share his heart, strength and faith clearly.

So, what does Jack think about quarantine? This is all I know for sure — he’s missing school, but loving having his family around all the time. He’s missing his buddies, but enjoying long walks and the spring weather. And, he’s living in today and trusting that things will be okay.

Stay strong, wash your hands and try to live in today.

Love, Jess