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 

Jack’s Graduation

First there was a pandemic that stole Jack’s last three months of high school. Then we were told that instead of a traditional graduation, there would be an “At Home” ceremony. Then it rained on the scheduled date. I was starting to think that nature was determined to completely ruin the end of senior year for our boy.

BUT the “At Home” graduation turned out to be an unbelievable day. 

Check out Jack getting his diploma!

Watching Jack as he excepted his diploma and Pillar High School’s Presidential Award was beautiful and then seeing his eyes widen every time he saw another friend arrived, warmed our hearts. After the ceremony, he wandered around the driveway reuniting with so many people he adores – IN PERSON. 

We did break some rules. 

Everyone wore masks and there was plenty of Purell, but there were more than 25 people on our driveway. And, there were hugs – LOTS of hugs. We couldn’t help it. It’s been three months since Jack has gotten to see these folks in the flesh and pulling him off of them seemed like torture, so we gave in (a little). 

After the celebration, we blew kisses to everyone as they drove away, and we put Jack directly into the pool — figuring the chlorine would kill off any germs. He sat on his favorite float as Anna swam him around. He had his hands claps behind his head and was all smiles, like he was reliving his fun day. Later in the afternoon we had another surprise when Peter arrived, bottle of champagne in hand, to toast to our boy’s latest accomplishment. What a perfect way to wrap up the day!

Jack’s life is complicated and there are many things he can’t do, but he has an exceptional ability to connect to people. Yesterday was proof that you don’t need to speak or write or be able to feed/bathe/toilet yourself to have a wonderful life full of people who smile every time you walk into a room (or onto the asphalt).

Thank you to everyone who made the day special and to Pillar High School for 7 unbelievable years of learning, growing and licking. I know that we are now not officially part of the Pillar Care Continuum, but I know in my heart, that our connection is not over just yet.

Love, Jess

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

 

Knock, Knock

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Yesterday our Ring camera alerted me that there was someone approaching our front door. I looked out Jack’s bedroom window to see my friend, Gail, with a bag in her hand. I glance down to my phone and noticed a text from her, “I’m going to drop a few masks in your mailbox in a minute. They have been washed in hot water using scent free detergent and softener, but I would wash again just to be safe. I delivered using disinfectant wipes.”

As she walked back to her car, I knocked at the window and waved. We gave each other the sign for I love you.

Last week my friend, Blake, knocked at our dinning room window. I’d been fighting with our cable box and the knock had startled me, but once I realized who it was I opened our front door. She stepped away from the house so that we could talk from a distance. She told me that she had stopped by the day before and had knocked at Jack’s window and waved with Jack, “Did he tell you I stopped by?”

Jack’s good at keeping secrets, but he must have loved seeing another person in the flesh. And, Jack and I have been doing yoga with Blake every morning for the last couple of weeks. Her yoga studio has made online versions of their classes and her calm voice and goofy sense of humor is always welcome – especially now.

The beauty of having friends who are spending their days creating masks for hospitals and people in need. The generosity of friends who are turning their local businesses into helpful additions to long days. The frustration of being trapped in the house. The horror of not knowing how long this will last. These are the thoughts that are scrambling around my mind these days. These are the thoughts that have me feeling extremely grateful and really scared/frustrated/overwhelmed – depending what moment you catch me.

How did we get here?

Just a few weeks ago our lives were frantic. Our spring calendars were packed with travel plans, school events and parties. Now our days are filled with Zoom calls, online yoga classes, cleaning out drawers, Tiger King and watching friends through windows.

Sending love from Speir Drive.

Love, Jess

Day 14

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Writing has always helped me process difficult times. Finding words to describe what I’m feeling has allowed me to work through my emotions. Sometimes it’s like figuring out a complicated puzzle — when I realize I’ve broken the code, I’m often exhausted but relieved.

The last couple of weeks I’ve had trouble finding the right words.

I’ve shared our family’s journey for 14 years. I’ve shared our struggles and triumphs. I’ve shared so that people could understand what it’s like to live a complicated life. Now everyone’s life is complicated. We are all in the same boat, so I guess I don’t really need to find the right words.

It’s surreal to live in the most powerful country on the planet and within weeks, we’ve all been brought to our knees. We are all home, watching the news, worried about our health and our country and our 401Ks. Although some people are suggesting that we will reach the other side of this within a few weeks, I think most of us understand that this will not be over by Easter. This may not be over by Memorial Day or Thanksgiving or New Years. It may be years before we nonchalantly give a hug to an old friend or meet up with pals at a crowded bar or travel abroad (or locally for that matter).

It’s been two weeks since our family has left the house (except for a few errands run by Dan – clad in a mask and gloves). Day 14 makes me a little less worried about anything lurking here, but I am worried about plenty. I’m worried about our family and friends. I’m worried that if anyone I love does get sick, I can’t be there with them. I’m worried about all of the doctors and nurses we adore putting themselves in harms way daily — without the proper protective gear. I’m worried that we will run out of toilet paper.

But, life needs to march on.

Life at home has been strange, but we are finding our rhythm. We’re on our third puzzle and are all taking long walks every day. When I’m not cooking (LOTS of cooking and dishes) we’re ordering in from our favorite restaurants (trying do help them stay in business). Dan has his office set up and seems to be getting a ton done and Anna is up in her room attending college. Not sure how labs or Life Drawing is going to work, but so far it’s been okay. Jack and I are keeping busy with online yoga classes, bad TV,  and (If Jack’s teachers ask) he and I are doing 7 hours of school work a day.

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We’ve also been catching up with friends and family every day. It’s one nice benefit of this crazy time. Everyone’s eager to connect with each other. JackO really looks forward to these calls. He’s kinda sick of us at this point  – thank goodness for FaceTime and Zoom.

We hope everyone is doing okay and heeding the recommendations to stay home. Sending a huge shout-out to all the doctors and nurses and grocery store workers and EMTs and postal workers and UPS drivers and everyone else who is out there so that we can stay home.

Stay safe!!

Love, Jess

Suspended Classes, Learning from Home and Sex in the 80s

Yesterday Johns Hopkins University announced that in-person classes were suspended through the end of the semester. No spring formals or sorority secret week or lacrosse games or baseball games or ordering Insomnia Cookies for late night study sessions. Anna will be completing her second semester sophomore year of college, in her bedroom at home. Alone (except for her wonderful, super fun family).

We sat around the kitchen island last night and I asked Anna how she was taking the news. She told me that she had been prepared. All the schools had been making the same decision, “It stinks for all of us, but I feel REALLY bad for the seniors. Their missing their last spring on campus and now a virtual commencement.”

I looked at Jack and my stomach fell. Jack’s a senior. His school has not yet made the announcement that in-person school is suspended through June, but I know it’s going to happen. How could it not? Jack and his classmates are the definition of “medically fragile”. Jack will likely not return to school this year – his senior year. No prom, no celebrations, no graduation. On top of that, he’s stuck at home with just the three of us for months. We’re fun company, but we’re not therapists or special needs educators. 

Jack’s school, Pillar High, has created an “academic binder” that’s being delivered today. At first, I laughed at the idea that we would be homeschooling our children with special needs. Jack and his classmates can’t log in and sit in front of a computer to do their work, and none of us are experts in special education. A binder’s advice couldn’t come close to recreating what they get at school — the education, the experiences, the therapy AND the connections.

But, last night when I was up at 2:32 am (the time my body decides it’s gotten just enough sleep to wake up and let my mind spin), I started imagining all the work that went into creating a binder for each individual student. I thought about all the love and devotion I know that the staff at Pillar has for the students. I realized I needed to take it seriously. We’re now in charge of Jack’s education for the next few weeks/months and Jack needs us to try to mimic at least some of what he gets in school. And, a schedule might not be such a bad thing right now.

I’m looking forward to see what the school is recommending. I’ll keep you all posted on how it goes with teaching JackO at home. I’m sure relieved that Anna isn’t counting on me for any help with Physics II.

ONE MORE THING —

I’m begging everyone to PLEASE listen to all the recommendations about social distancing. The more people comply, the quicker we can get to the other side of this. It’s going to be hard on all of us, but we NEED to be in this together!!!

My brother described the danger of people dismissing the importance of social distancing as “People don’t really know who they’re in contact with and who those people have been in contact with.  It’s like having sex in the 80s with someone you met at a nightclub. You weren’t just sleeping with one person, you were sleeping with everyone they’d slept with.”

Great point Brother, but weren’t you only 14 when the 80s ended . . . 

Love, Jess

If you haven’t seen it already – take a LOOK at Jack’s school, Pillar High, in action.