Tag Archives: THISisALD

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

Posted on by

0

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

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

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

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

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

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

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

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

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

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

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

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

Love, Jess

hApPy BiRtHdAy JaCkOOOO!

Posted on by

5

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

Posted on by

0

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

Posted on by

1

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!

Posted on by

1

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

Posted on by

4

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

Posted on by

14

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

Posted on by

0

No photo description available.

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

Posted on by

4

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!

adrenoleukodystrophy Aidan's Law ALD ALD Connect birthday blog blogging BMT bone marrow donor book children college COVID-19 CPNJ CPNJ Horizon High School disability dogs facebook family friends genetic testing graduation health life love medical marijuana newborn screening news parenting school siblings smiles and duct tape special needs special needs family special needs sibling speech summer Surviving THISisALD this is ALD THISiswhatALDlookslike time away travel vacation writing

TOGETHER — ALONE

Posted on by

2

IMG_1755

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