Tag Archives: disability

look what we just got!!!

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We’ve lived in SOMA (South Orange/Maplewood) for 25 years. We’ve owned three homes here, had two kids here, and raised 4 dogs here (some more successfully than others). We’ve celebrated many happy moments here and experienced our hardest days here. SOMA will always be our home.

There are many reasons to love our towns — the easy access to NYC, our charming villages filled with cute stores and excellent restaurants, schools that managed to educate our two very different children, South Mountain Reservation, and the people. The people of SOMA are what really make our community a treasure. 

We’re honored to be the cover family in this month’s SOMA Living Magazine. Thank you, Michael Goldberg, Karen Driggs, and Jamie Meier (www.livelovelens.shootproof.com), for putting this all together and sharing our family’s story. We wish Anna could have made it to the shoot, but we did FaceTime her. I wonder if this should be our holiday card this year🤪😂🥰

Love, Jess

If you live in SOMA, you should be receiving your copy of SOMA Living Magazine soon. If you live out of town, you can catch a glimpse here — http://somalivingmagazine.com/

where did the tears come from?

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Every month I speak to medical students from Rutgers University. It’s a small group of third year students who are in their pediatric rotation. I’m a “patient representative” who is there to share our family’s story and the good and bad of what we’ve experienced with doctors. I look forward to these Zoom sessions and am always impressed with the students and appreciate being able to sneak in as much as I can about ALD — the often missed signs of ALD and the importance of newborn screening.

After we go around doing introductions, I share the video that bluebird bio made about our family. It’s a great way for the students to learn a bit about our journey and “meet the family”. While the video plays, I usually take the opportunity to slip away from my desk to make a cup of tea or check in with Dan and Jack. Last night I sat and watched the video with the students.

I found myself in tears.

I did regain my composure by the time the video was over and got through the next hour and a half managing to hold it together as I shared stories of working with many exceptional doctors and some who were lacking empathy and/or the ability to recognize when they may need more education about our not as rare as you might think disease. I always try to be approachable and relaxed, using humor to make everyone as comfortable as possible as I share stories about witnessing our son unravel, searching for answers, receiving a life-threatening diagnosis, watching as our once typical, healthy son fight for his life, and learning to adapt to a life that none of us ever imagined. I’ve done this enough that I can let the words just flow. I did a fine job, but I couldn’t help feeling distracted.

After the session, I got up and went directly into Jack’s room, knowing that time with the boy would brighten my mood. We sat and watched The Impractical Jokers and laughed until it was time for us to get ready for bed. I did feel much better after spending time with him.  Jack is doing great. He loves his adult program and time with his other mothers AND can comfortably live at home. His health continues to be stable and, except for an occasional tear shed while watching those ASPCA ads, he always has a bright smile on his face. 

Although I felt better, as I tried to fall asleep last night, I kept thinking about my reaction to watching the video. My only explanation for yesterday’s tears is that it’s been a while since I let myself really focus on what we went through 15 years ago. Sure – I share it, but I remove myself as much as I can from the story. I fill in as many of the dark spots with humor and light. It’s how I survive.

If I were my own therapist, I would ask myself how this strategy is working, and I think my answer would be that it’s working pretty well — I don’t want to live in the dark. I want to live in the light. I want to enjoy all the good our family has experienced and not waste time with the what ifs. BUT maybe sometimes I should consider allowing myself some time to be frustrated or mad or sad. I’m not sure how or when, but I will sure try to avoid doing it in front of a screen full of students.

Love, Jess

SOMA

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What will be add to our wall?

Lately, every time we travel Dan and I have the “could we live here?” conversation. Is there enough hiking for Dan? Are there enough resources for Jack? How close would we be to an airport? Would we be close enough to Anna? Could I find clients?

It’s not that we do not like SOMA – that’s South Orange/Maplewood for you out of towneres – we LOVE this community. It’s just that we’ve been feeling like, after 25 years (and two kids, three homes and four dogs), we might be ready to start our next chapter. The kids are done with our school district, taxes are high, many of our friends have left, and we no longer need an easy commute to NYC (the crypto world doesn’t require much time in the office and everyone/everywhere needs therapy). We’ve talked about Block Island, the Jersey shore, Massachusetts, Puerto Rico, the Chesapeake and Maine. They all have their benefits, but will anywhere ever be able to compete with SOMA?

This week, we’ve had a reminder of just how special our community is. We were asked to be interviewed by SOMA Living Magazine for their October issue. Each month they choose a local family to highlight and an old friend recommended us. After sitting through the interview and being asked about our journey since we moved from Brooklyn, we found ourselves wondering why/how we could ever leave our beautiful/progressive gem of a town(s). We shared countless stories about our town(s) – the schools that educated our brilliant daughter and supported our son without question, the restaurants that draw people from all over NJ, South Mountain Reservation which allows Dan to disappear when he needs time with trees, and the people – soooo many stories about the people of SOMA. For 25 years, SOMA and it’s people have helped us celebrate wonderful days and held us up during our dark times. These towns are beautiful and progressive and crunchy and accepting.

We know that our future will ultimately lead us to a move, but for now — we are here. I need to get my supervised hours before I can hang my own shingle, Jack has wonderful support thanks to Universal and his other mothers, and we are not yet sure where Anna will land for medical school. We know in a few years we will make a move, but instead of dreaming of our next home, I’m going to start really appreciating what we have here.

Thanks SOMA!!!

Love, Jess

I will be sure to share the article in October!!!

two kids, incredible accomplishments and piles of pride

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Last night our family sat around the kitchen table finishing up Anna’s medical school applications. Anna had already done all the hard work – the essay was written, the recommendations were in, the impressive MCAT scores included, and her transcript (flawless grades, completed in just six semesters from Johns Hopkins) was posted. The only thing missing was the list of schools where the application was headed – and the credit card payment. She will hit send on Tuesday and then the waiting begins. 

Today we will go through Anna’s other project – a six-week journey through Europe. Dan, Jack, and I have heard bits and pieces of the plan, but once again, Anna has taken an idea and run with it. She and her friend are winding their way through Europe wanting to take in as many sites and bites as they can. They want to explore museums and the countryside and the people of as many countries as they can. That’s the thing about Anna, she isn’t one sided. She is brilliant and determined and curious and adventurous and funny and kind. She truly is the most amazing person I know.

Except for MAYBE Jack.

Jack has been Anna’s greatest cheerleader her entire life. Whether it was cheering (silently, but with gusto) from the bleachers at lacrosse games to watching her proudly as she got her diploma last weekend – Jack is always there and always her biggest fan. And, Anna is always there to celebrate Jack’s accomplishments – his graduations, his activities, his strength through medical hell. He is also Anna’s inspiration for all she does. 

The pride I have for these two is profound and I can’t wait to see where life leads them both. BUT today, I just want to sit around the pool, hear about Anna’s trip and watch Jack swim.

Life is good.

Love, Jess

Tomorrow is not just Memorial Day – it is Jack’s 15th Transplant BiRtHdAy!!!! If you have time today – can you send a picture or a video so that I can make Jack a little birthday card/video thing? jctorrey@mac.com

A Gift

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Yesterday I came home from a lovely day with my father in Tuxedo, NY and grabbed the mail. There was a package from an address I didn’t recognize. Curious, I opened it up and pulled out the note and was confused. It was a photocopy of a page from a book with a handwritten note at the bottom. It took me a minute to realize that the photocopy was from a page of Smiles and Duct Tape and that the note at the bottom of the page was from an ALD mom I’ve recently been corresponding with. She was thanking me for sending her a copy of the book. She had been moved by a story I’d shared and wanted to send a gift.

I went back to the package and pulled out a beautiful Rolling Stones tee-shirt.

Through my tears, I held up the shirt and thought about 8-year-old Jack wearing his dad’s Rolling Stones tee-shirt at a town fair just weeks before his transplant. It’s been almost 15 years, but that memory is as clear as day. We were all so scared and overwhelmed but focused on being hopeful.

I’d heard about this mother from a friend from college days. A conversation had revealed that my friend’s neighbor had lost a son to ALD in 1990. My friend put us in touch and since then, this mother and I have shared some texts and stories. Amazing how connected you can feel to a stranger.

Beautiful Alan

Lately, I’ve been feeling a little overwhelmed. Between school and internship and Jack and the dogs and the house and and and — It’s hard to do everything well (or even okay) when you have too much on your plate. When my friend first told me her neighbor’s story, my heart hurt for this ALD mom and I wanted to send her a book and a note. I’m ashamed that it took a couple of weeks to make it happen. Too busy with this and that. I needed to force myself to remember what really matters — relationships, connecting. I’m so glad I sent the book, because what I got back was so much greater. Not just the amazing tee-shirt, but the connection with a remarkable person, and the reminder of what’s important. Alan’s story is very different than Jack’s, but they are forever connected, and I am grateful to know his mom.

I’m not someone who believes in the idea that everything happens for a great purpose, but sometimes I do wonder that even though you can’t always get what you want, if you try sometimes, you just might find — you get what you need.

Love, Jess

The answer is YES!

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Years ago, Jack and I walked into his neurologist office with a question that felt scandalous, “Do you think it would be okay to add CBD to Jack’s list of supplements?” I’d been reading about CBD being a magic cure for everything from seizures to depression to spasms (Jack was suffering from horrible spasms that were affecting his ability to walk). We left her office with the paperwork required to apply for a medical marijuana license. It took months for his license to be granted and several more before we realized that CBD wasn’t what Jack needed to help his spasms. What he needed was pot with high levels of THC. We didn’t tell anyone but family and a few close friends for the first few months, worried about being judged for getting our son high.

But there was no mistaking that it was working. Jack would have one of his magic treats two or three times a day and his spasms were alleviated, his appetite had increased, his sleep had improved, and his appreciation of 70s music was off the charts! 

For years we’ve experimented with different strains of marijuana, and I’ve become a pretty talented baker – we didn’t want Jack to smoke, and NJ didn’t sell eatables until recently. The years have moved on, and so has our country’s attitude towards the benefits of marijuana, and we’ve slowly shared our experience more openly. It may not be a solution for all ailments, but pot is a relatively safe substance with many medical (and recreational) benefits.

Since we’ve added pot to Jack’s list of medications, NJ has made getting a medical marijuana card easier and the number of dispensaries has increased, but we’ve been waiting for the day that we no longer needed a signature from our doctor or our cards to make our monthly purchase. Today NJ has joined the states with recreational marijuana dispensaries and — as Jack’s pot mama — I’m thrilled!

So is Jack. 

So are the folks on the LOOOOONNNGGG line at our local dispensary!!

Love, Jess

Sharing Jack

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I had the honor of meeting a fellow ALD mom on Friday. I say “meeting”, but I’ve known her for a while, and it was more like reconnecting with an old friend. Her family’s ALD story is very different than ours, but she and I are both fluent in a language that few are privy to. I walked away feeling so grateful that she had reached out and looking forward to our next visit.

While we were catching up, she asked how Jack was doing. She knows his life is complicated and as an ALD mom – and an OT – she understands more than most people what complicated looks like day to day for families like ours. I shared with her how well Jack is doing, but how different it is now that he is getting a bit older. She asked if we would ever consider a residential facility for him.

This question used to feel like a punch. The idea of having Jack living outside of our home seemed crazy, callous, even irresponsible. That judgment has faded. I have friends in the special world that have found wonderful places for their adult children to live. Their kids are thriving. It can be the right choice for the child and for the family. We are not nearly ready for a dramatic change in our living situation, but we are starting to share Jack. A little.

With me in school and Dan busy with work, we have tried to fill Jack life with fun activities. Jack goes to a wonderful adult program three days a week. We trust that he is safe and well cared for, but we don’t really know what he is doing from the time his bus leaves our driveway to when he returns home 7 hours later. Jack has afternoons with his new friend/caregiver, Ava, and his Other Mother, Monica. Jack also spends two days a week with Maria and her family. They usually spend those days at their house cooking and eating and having adventures. This week, Maria and her family picked Jack up on Thursday and we didn’t see him until Saturday afternoon.

Dan and I have always managed to sneak away a few times a year for a needed break, but this time it was Jack packing a bag and getting away. It felt so strange for Dan and I to walk by Jack’s room in the morning and see his bed empty. It felt strange not see him perched on his stool at the kitchen island laughing at his Impractical Jokers. But I need to be honest — we did enjoy the time alone together AND Jack loved his time with his other family!

We are a long way from being ready for a full-time placement, but I think time with his other family every now and then is perfect!!! Thank you Maria and fam!!!!!!!!

Love, Jess

HaPpY 2022?!?!?!?!

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There are few things as depressing as taking down the Christmas tree. It literally screams – THE PARTY IS OVER!!!!!!!!

We had a great holiday season, but this year’s celebrations were tainted with a constant fear of being cancelled. We had piles of fun activities planned — family parties, visits with friends and plans to celebrate Anna’s graduation (YES – our Banana is done with school). Leading up to each event we’d scrambled to find a test, swipe our noses and pray — COVID was everywhere!! We were almost resigned to getting it (hoping that our boosters would do the trick). Good news is we managed to sneak in almost all our plans, and so far none of us got sick with anything (but perhaps a little bit of a hangover here and there).

Yesterday when I started taking down the holiday decorations, I thought about all the fun we had over the last few weeks and then heard Anna packing up and Dan starting our 11th load of laundry. 

Anna’s now back in Baltimore, Dan’s upstairs being loud about crypto currency, Jack is out with his other mother, Maria, and I’m sitting at my desk wondering how I’m going to work 20 hours a week as a counseling intern while going to school full time. I have the news on in the background and COVID is continuing to try to cripple the world, there are warnings about threats of violence on the anniversary of January 6th and someone just mentioned it might snow on Friday.

The party is indeed over!

I’m trying to remind myself that 2022 is going to be a great year. Anna starts her life as a grown-up while living/working in Baltimore and applying to medical school. Dan has his job that he loves and his Old School Vinyl Podcast. I will be finishing my master’s program and start my twentieth career as a counselor. And, Jack will continue being the happiest man on the planet☺️!

Here’s to a fantastic 2022! May it bring everyone joy, health 😷and happiness!! I promise I’m toasting with a simple glass of water 😉

Love, Jess

Max Torrey

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We got ourselves an early Christmas gift! 

We adopted Max after seeing him one too many times on our local Dogs of SOMA Facebook page. Our family kept looking at his sweet face and finally decided we needed to meet him. First, we took Tupelo to Max’s foster family’s house for an introduction and then Max came to our house for a day to see how he got along with Jack. Max never left. Look at his face! Look at him with Tupelo! Look at his ears! No way we could say no to this guy.

Lost Paws Animal Rescue is an incredible organization who paired us with both Tupelo and Max. They rescue dogs and cats from all over the country and place them with foster families until these beautiful animals can find their forever home. Tupleo had been in a shelter in South Carolina and Max was found on the streets in Puerto Rico. Now they are loved and well fed and part of our family.

Special thank you to Joe Rispo who is our Lost Paws/dog whisperer and to the foster family – the Pressels — who cared for our boy before we even knew we wanted another dog.

Love, Jess

It was time

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We did something last night that needed to be done. We’ve discussed it as a family for months but were waiting until we were all on the same page. After enjoying a great holiday, we figured we could handle anything. Everything else we had tried hadn’t been working and it was starting to look really bad. It was time. Besides, we needed Anna to be here. She’s not just our family cheerleader, but she’s our family barber.

We shaved Jack’s head last night. His hair has been thinning for a couple of years and there was no magic shampoo or haircut that could hide it anymore. Anna kept reminding us that “bald is beautiful” and showing us photos of handsome men with a “clean look”. Our hesitation had nothing to do with not liking a bald look, it was that we have seen Jack bald before and those are days that we don’t want to remember.

But Jack is NOT sick. I like to blame ALD for most things, but there are other genes lurking in my family tree that might be at work. It was time.

When I walked into Jack’s room this morning, I did need to make sure that I had plastered a believable smile on my face. It’s going to take me a minute to get used to his new look. Change is tough — but he looks very handsome – just different.

Who knows – this shave might be a reset for his hair follicles, and Jack could return to needing shampoo, but for now he is bald and beautiful!! AND, he is in need of some new winter hats!!!

Love, Jess