Category Archives: special needs sibling

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

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

HaPpY 14th Transplant Birthday!

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14 Years . . . Day + 5113 . . .

It’s Jack’s 14th Transplant BiRtHdAy!!!! 14 years since he received the magic cells from the Little Lady from Detroit that would stop the progression of ALD and allow us to not just continue enjoying life with Jack, but appreciate his wisdom and strength. He’s the greatest teacher I’ve ever had and I know he’s the same impact on everyone lucky enough to cross his path.

Here are some sweet words from his family about our boy. PLEASE add a comment about what Jack means to you.

He’s got moves like Jagger. – Dan

He’s a loud, silent human. I love my Booger – Anna

In an age where we’re all on our devices, Jack is living in the moment and loving it. – Aunt April

Yesterday is history, tomorrow is a mystery, and the present is the gift Jack gives us. – Love Aunt Darcy (with help for Eleanor Roosevelt)

We all so remember this day 14 years ago when Jack stayed so calm and so brave as the the Little Last from Detroit came into him and started to do her magic. He smiled back at all the people standing and applauding in his room. What wonderful advantage we all have been able to take from that gift. Jack has been our leader and hero every moment of the way. —  Nonno and Mymom

A quiet guy with a big personality. – Uncle Phil

We both always feel so good around Jack and feel his presence and happy demeanor. He is a gift that makes us all better people. — Love, PopPop and Nanna Sue

A man of few words who says a lot especially with his laughs and smiles. – Aunt Kate

Jack is just a light soul and a whole lot of laughter and smiles. He is also a great dance partner. – Other Mother Orla

Jack is engaged. People think not speaking would isolate him, but it sure doesn’t. – Mymom

Absolutely famntastic! The best friend anyone could ask for. Empathetic, funny, charming. – Other Father Peter

As my grandson and my inspiration as a valiant and brave guy always ready to replace difficulties and tragedy with a laugh. – Nonno

Jack is the best human being ever, my inspiration in life! – Other Mother Lilly

Jack is pure love! The most beautiful soul I have ever met. He means kindness, friendship, strength and sensitivity with a resilient heart. Jack is an example of how to live life with grace and joy no matter the adversities. – Other Mother Monica

Jack is an amazing young man who loves a good laugh more than anyone I know! – Uncle Matt

Once upon a time there was “a Iittle girl from Detroit” who would forever change a little boy by the name of Jack Torrey’s life!  Her gift to Jack has inspired so many and has given Jack the opportunity to be the awesome dude he is – a smile like no other and an awesome sense of humor to boot! – Love Aunt Kim

Jack’s journey shows that happiness and love can win. Jack still has the same attachment he always did. — Uncle Pablo

Our family can’t describe in words what Jacko means to us. He has completed our family. We love him so much. — Other Mother Maria and Family

Time is always a odd when it comes to remembering defining milestones. We will never forget that day in room 505, but it feels like both yesterday and a million years ago. We remember every detail of the anxiety and energy and hope and smell (stem cells smell terrible — who knew?) in the room when the life-saving cells went into Jacks’s body. It’s the day that we saved our son’s life with the help of countless doctors and nurses AND a family that donated precious cells, never knowing that they were going to give the gift of Jack to so many.

Thank you to the mother of the Little Lady from Detroit! Your gift didn’t just save Jack’s life, it changed the lives of many!!

Love, Jess

Banana is 20!

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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!!!”.

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.

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.

She Can’t Sing

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She can’t sing.

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

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

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

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

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

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

My Experience Getting Tested for the ALD Gene

Love you Banana.

Love, Momo

50

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Next month I’m turning 50. I’ve always loved my birthday. For me birthdays are a reminder to reflect on the previous year, an excuse to celebrate the future and … I love presents (honestly, I LOVE PRESENTS). I didn’t just revel in celebrating 10 and 17 and 21, I embraced 25 and 30 and 40, but this birthday feels a little different. It’s 50. 50 sounds so grown-up. 

Shouldn’t I be more responsible? Shouldn’t I know more? Shouldn’t I be able to complete at least the Monday New York Times crossword puzzle? Shouldn’t I have learned to switch to water after the second glass of wine?

Like many of my friends reaching this milestone, I’m finding myself thinking about what I’ve accomplished in the last 5 decades and what I see shaping up for the next half of my life (I could make it to 100).

Overall, I’m fairly pleased with my accomplishments thus far. No fortunes made or much notoriety, but I have plenty that I’m proud of. I survived school (which was tough for me) receiving a bachelor’s and even a master’s degree. I married the love of my life, and with him survived more ups and downs than most couples. I’ve had careers as a photographer, a teacher, a writer and even gotten away with being a nurse when needed. I’ve had three books published (you thought Smiles and Duct Tape was the only one? There’s also Squeeze and Jack and the Pumpkin). I’ve managed to always surround myself with incredible people, who seem to enjoy my company and hold me up when I’m falling. And, I’ve raised two remarkable children – by far, my proudest accomplishment.

Of corse there are things that I regret. I wish that I had learned more languages (at least not lost my first language – Spanish). I wish I had traveled more and not given up on my photography. I wish I invested in Amazon and Apple early on. I wish I had always treated people the way I wanted to be treated. I wish I had learned to always think before I spoke. I wish I had taken more videos of the kids growing up. I wish I had learned how to play the guitar, knit, and sail. . I wish I had pushed for an MRI for Jack, just a few months earlier . . . 

There are things I would change if I could, but for the things I’ve had power over – I’m (mostly) proud. It’s the next half of my life that has me stumped. Dan and I will not have the empty nest that many of our peers are experiencing, but things are quieting down a bit. I’ve been thinking of going back to school to start another career, but am wondering if 50 is too old to start something fresh. I’ve been working further on a few book ideas that have been torturing me from my sleep. I’ve even been thinking about starting a program for adults with special needs – if we can’t find it, we may NEED to build it. All sound ideas, but I’m waiting for that kick in the ass that has always found me when I’ve needed it.

Until then, I am going to busy myself by searching the internet for “good careers for people of a certain age” and “appropriate haircuts for 50-year-old women”. I will also continue to work on finding the perfect adult placement for our boy and maybe sign up for some guitar lessons.

Love, Jess

I will also work on remembering to switch to water after the second glass of wine. No promises.

 

THIS is not Bravo

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Why were a dozen people following us around with cameras and piles of questions for the last couple of days? We can tell just yet, but I can promise you that it will be more real than anything you’ve seen on Bravo.*

 

Love, Jess

* I love Bravo – every last bit of their version of reality – it’s just that THIS is not Bravo.

July 2019

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Yesterday afternoon Dan, Jack and I were cooling off in the pool when I realized it was the first quiet moment we’ve had all month. We were too tired for much conversation, but we all had smiles on our faces. Massachusetts, Block Island, Colorado, New Mexico, a party for Jack’s school friends to celebrate his 21st birthday, and more houseguests that I can count. We are all exhausted, but grateful for everyone in our lives who helped make all this fun happen.

For a family with more than our share of “complications”, we always seem to have a lot to celebrate. I’ll write more details about our summer adventures (and some exciting things coming up in August), but for now I will share some photos. Enjoy!!!

 

Love, Jess

PS Anna didn’t enjoy our quiet swim yesterday, because she had left for Block Island for a couple of weeks. When I grow up, I want to be Anna;)