Jack is 23 and we are sure about that number because we celebrated a whole bunch! Lunches, dinners, pool parties, even a cooking class – our boy has been busy!!
There are a whole lot of photos to share and two videos that are sure to put a smile on your face. Enjoy!!!
We love you Jamilla!!!!!!😘
Love, Mom
PS We will see the Torrey family soon and will celebrate again. The party never ends!!!!
I have never been busier. In fact, I have no business writing anything right now that does not require APA citations. I just need to rest my brain and am hoping that writing here will calm me.
The last five days have been wonderful but nuts! We’ve been to Tuxedo Park to hang with the Cappello Crew, hosted a dinner party, hosted a brunch, facilitated an ALD Caregiver’s call, written a 12-page paper digging deep into my cultural identity, listened to three lectures, read 73 pages of research articals (at least I said I read them), attended three classes, spent an hour at PT for my shoulder, completed forms for Jack’s adult program, completed forms for my internship, and made and canceled at least 5 doctor’s appointments.
In the next five days we are having my nephews and sister-in-law over for some fun, going to Tuxedo Park to hang with my folks and celebrate Jack’s birthday – while the family is boating and hiking and swimming, I will be going to NYU’s Virtual Emersion (hours and hours of intensive group therapy). On Saturday when I wrap up the Emersion, I log on the ALD Connect’s Bootcamp for Women with ALD. Sunday we are having Jack’s “other mothers and fathers” for some more birthday fun.
Jack turning 23, fascinating experiences in my MA program, a trip to my parent’s lovely new home, seeing friends and family – so much great stuff, just so little time to enjoy it.
I need more time!!!!!!!
Okay – that did not work. My heart is now racing. Gotta run and put some clothes on so that I can log on to my class.
I promise to share photos of Jack’s birthday (and maybe a couple of me sitting at a desk with a box of tissues next to me).
Love, Jess
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
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!!!”.
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!
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I’ve been grateful for so many things this last week – my heart is full. Dan threw me one hell of a birthday party last weekend and my only complaints were that I wasn’t able to get a proper visit with everyone and it ended too early (4:00 am . . .). Then, just five days later, we hosted a big Thanksgiving with all three sides of the family represented — the Torrey/Perrys, the Cappellos and the Mackays. Our house was so filled with guests all week that I never really knew how many people would be there for dinner or where everyone was sleeping. All I knew for sure was that it was amazing.
Today I’m grateful for laundry.
Anyone else get that awful feeling lurking in the pit of their stomach when a fun time has reached it’s end (no – not a hangover, but that too)? I’ve gotten this feeling while driving home from Block Island on Labor Day and when Dan and I drag the Christmas tree to the curb in January each year. It’s part exhaustion and part relief BUT mostly it’s just knowing it was a great time and it’s over.
Our last guest left today around 1:00 and I’ve been loading and unloading the laundry and the dishwasher more times than I can count. I’ve been vacuuming and making beds and folding towels AND I am so grateful to have a distraction.
Anna is home for one last night and we’re going to enjoy it just the four of us, around our little kitchen table. We’re ordering in, watching a movie and going to bed early. One last hoorah before the holiday is officially over.
I hope everyone had a wonderful Thanksgiving and has some laundry to do.
Love, Jess
I would like to thank everyone who made a donation to CPNJ – Pillar Care Continuum High School in honor of Jack for my birthday. We raised over $2500!!! It’s not to late if you want to help a great cause — CLICK HERE!
Patient support materials you may see in the future . . . I was told to say that. I prefer the caption “Love and laughter make 50 easy”
At 9:30 last night my brother, Pablo, sent me a text, “In 2.5 hours you will officially be in the back nine. Well played, Girl.” Then I received my first Facebook birthday wish from an ALD friend who lives in Australia.
I went to bed next to my husband of nearly 25 years and woke up to the sound of the two dogs marching around our bedroom (their nails make a click, click, click at day break) and Dan muttering, “F*cking dogs”. I fell back asleep for another hour until that same mouth that had cursed at the dogs gave me a gentle kiss on my forehead, “Happy Birthday Luvo”.
I poured myself out of bed around 7:00 am to start my morning routine — a busy hour of bathing, brushing, dressing and laundry. Jack’s sweet smile let me know that he knew that today was a special day and peeing in the toilet was his version of a perfect birthday gift. By the time we were done with the first half of our routine and made our way into the kitchen, there was a birthday message from Anna, “Gotta run take an exam, but HAPPY BIRTHDAY MOMO! I’ll call as soon as I’m done”.
The rest of the day included a long walk, a beautiful lunch with two and a half of my best friends (one was on Facetime), teaching art to kindergarteners who think I’m turning “some sort of grandma age”, and I just ordered sushi for dinner with my boys (Anna will join us on Facetime). I also have enjoyed countless phone calls, emails, texts and silly Facebook birthday wishes.
I’m not entirely sure how I imagined myself at 50 when I was young, but it definitely didn’t look like this. I’m guessing I pictured a bit more maturity and certainly wouldn’t have guessed that I would be excited by my 21-year-old’s toileting skills, but here I am and honestly, I wouldn’t trade my life.
My family – both immediate and extended, my friends, our community, our dogs (even with their annoying morning clicks), our quirky new house, — I am beyond grateful for everything and everyone in my life as I start the back nine.
Thanks for all the birthday love.
Love, Jess
If I had the power to change certain things, of corse I would. I wish we’d never heard of ALD and that Jack’s life had taken a different path. But I can’t, so I embrace what I have and what I have is amazing.
Special siblings are a remarkable lot. Many people assume that these children grow up with something missing. Lack of attention and fear course through their veins, leaving them lost or even resentful and angry. I understand why people might make that assumption, but I’ve found that it couldn’t be further from the truth. The special siblings I’ve come to know are incredible people. Thoughtful, independent, hardworking, understanding, patient, and compassionate – just like Anna.
I did worry about Anna when Jack got sick. She was only six-years-old when our family’s attention was suddenly completely focused on Jack and his survival. We only had a few weeks to prepare for transplant following the diagnosis, and then Dan and I weren’t just not emotionally present for Anna, we were rarely physically there either.
Even after Jack got home from the hospital, the entire dynamic of our family had changed. We had been a family who was very focused on evenly dividing our attention, love and patience to our two kids — we never wanted to be accused of having favorites. After ALD screamed into our lives, the disease crumbled our “even-steven” approach to parenting.
We have always done our best to be there for Anna. We cheered loudly at lacrosse games (Dan was lovingly called “Loud Dan” for years), we tried never to miss parent conferences and would sit with her for hours over the dinner table discussing the trials and tribulations of childhood. She’s always known we adore her BUT she’s also always known we were just one diaper change or stomach flu away from dropping everything.
Jack’s illness/challenges trump everything (too bad that expression is so complicated now). If Jack needs to be medicated or changed, we need to take care of it and if he starts throwing up or looks like something is brewing, we don’t have the luxury of waiting. No matter if Anna needed help with her homework or we are knee deep in a project – ALD could interrupt our plans without any warning. We’ve all become accustomed to the interruptions — especially Anna. It’s part of being a special sibling.
Anna learned early that if she needed to get something done, she needed to know how to do it herself – just in case. Don’t tell the MAPSO schools, but I didn’t sign any school paperwork once Anna hit middle school. Permission slips, notes from teachers – even those nightmare “Information Packets”. Anna took care of them herself. It was safer than putting it on my pile. It might have gotten lost in the medical bills/social security/gaurdianship paperwork.
This early independence translated to a teenager who handled her college applications with minimal help and now that she’s in college, she doesn’t ask us for much help, other than making sure the bills are paid on time. Not that she doesn’t turn to us for guidance, but she knows how to handle things on her own. It’s how she has survived the ALD part of our family. It’s part of being a special sibling.
Independence has not been the only gift from being a special sibling.
I was getting my boobs squished yesterday (by a professional boob squisher — a mammogram) and I was trying to distract myself by making conversation. I asked if they had any fun plans for the weekend as they tightened the panel, “just one more little bit”. When she asked what my weekend plans were I mentioned that my daughter was coming back from college and we were celebrating her birthday. This, of corse led to where she was in school and what she was studying.
“Pre-Med at Hopkins? Are either you or your husband in medicine?”
I simply answered that her older brother is.
Anna was born strong and determined and Dan and I can take a little credit for who she has become, but Jack has been the biggest influence in her life. It was Jack who inspired Anna to study medicine. It was learning at only six-years-old that nature can be cruel. It was knowing that science saved her brother’s life. It was knowing that there is still so much unknown and she wants to be part of unraveling the mysteries of the human body.
Dan and I try to remind Anna that she’s only 19, and that there’s no need to know what she wants to do with her life, “I’m almost 50 and still trying to figure it out.” Anna’s a talented artist and I encourage her to continue making art. Dan and I both want her to study languages and travel and get the broadest education she possibly can. As much as we put in our two cents, but we know our sweet daughter and when she gets an idea, she can’t turn back. She sets a goal and she exceeds it. It’s who she is. BUT BANANZ IF YOU ARE READING THIS, PLEASE KNOW THAT YOU CAN MAKE CHANGES TO THE PLAN. ANY TIME.
Anna is driving up the NJ Turnpike from Baltimore as I am writing this. I can’t wait to get my hands on her and wish her a happy birthday in person. I can’t wait to watch as Jack jumps out of his chair to throw his arms around her until she screams for mercy. I also can’t wait to see where her life takes her. I wish Special Sibling didn’t need to be one of Anna’s titles, but it is and I appreciate some of the things that it’s taught her. With the combination of Jack’s inspiration to go into medicine and what Anna has learned as a result of being a special sibling, I have no doubt that she will do amazing things.
Happy Birthday Anna Banana – our very favorite special sibling.
Love, MoMo
After writing the sweet birthday story about Jack CLICK HERE IF YOU MISSED IT, I got started on our morning routine. Getting Jack up and out for school takes 2000 steps – even in the new house. There’s laundry and showering and teeth brushing and dressing and breakfast and medication. By the time we’re done with medication, we’re close to the finish line. The last steps are putting on his shoes (Jack wears AFOs so it takes some time) and few minutes on the potty – just in case.
I hadn’t realized that Jack had the last bite of cake in his mouth when I sat him down on the toilet (don’t judge – it’s his birthday). I left the room for a minute to grab some coffee and I heard a loud sneeze. When I walked back into the bathroom, there was chocolate cake EVERYWHERE. All over Jack, the floor, even the freshly painted, super cool and modern, white walls.
At first, there was a bunch of swearing on my part, but it quickly turned to laughter and joking with Jack that if someone hadn’t known what had happened, they might think it was poop. Several Clorox wipes and a new tee-shirt later, Jack and the bathroom were as good as new. I decided that – just in case – I would leave Jack on the toilet for just a few more minutes. The phone rang so I left the room and spent a couple of minutes chatting with Dan about the birthday boy. As I walked back into the bathroom I interrupted Dan by saying, “Holy crap. There’s sh%t everywhere!! Gotta go.”
This time there was poop everywhere. POOP EVERYWHERE!
When I cleaned up for the second round of mess, I can’t say that it was all laughter, but once I was finished, I called Dan back and we all found the humor when I said, “I just cleaned him up again. He still has some stuff on his pants. Not quite sure if it’s poop or cake. The bus just pulled up, so let’s assume that it’s cake.”
Is it poop or is it cake? Let’s assume it’s cake. THAT is real story of (our) ALD.
Love, Jess
Yesterday I woke up to a tap on the arm. I was confused before I opened my eyes. Why was Dan back home – he’d left so early? Then I heard the hop hop as my human alarm walked away.
I wondered how long it would take for our boy to figure out how to climb out of his new bed. Just less than a month isn’t bad. We’ve been living this life for twelve years now and a month is remarkably quick for learning a new skill. Not that I’m assuming that Jack will manage this new trick again for a while, but I ordered some side rails for his bed, just in case.
In our old house I worried about Jack climbing out of bed and falling down the stairs. Now I worry about Jack roaming around the house unattended and God forbid escaping and finding his way into the pool. Progress can be complicated at our house – wherever it is. I’m so proud when Jack accomplishes a new goal, but each improvement can come with a list of worries.
Dan and Anna think I am nuts, but along with the side rails, I’ve recently installed an alarm system so that I can hear every time a door opens, cameras in Jack’s room and at the front and the back of the house and an alarm for the pool. Having a child with special needs can be complicated and expensive, but piece of mind is priceless.
Twelve years ago I never imagined that our family would look like this today. I was living in the “everything is going to go right back to normal” mode. I never thought I would secure our house — not from outside threats, but from our boy and things as simple as climbing out of a bed.
THIS is ALD.
Today is Jack’s 12th Transplant Birthday. 4383 days since those cells from the “Little Lady from Detroit” (in case you missed our story 12 years ago – Jack’s stem cells came from a cord donation. All we know about the donor was she was born in Detroit in 2005. She needed a name, so we gave her one) saved Jack’s life. So much has happened since them. Loads of good, plenty of bad – but mostly good. Although we never imagined living this life, we have a lot to celebrate today. This year we are planning on celebrating big for his 21st “typical” birthday, so we told Jack we are keeping things tame today. Don’t tell him, but we did get him a few gifts. Just trying to figure out how to wrap those side rails.
Love, Jess
PLEASE send Jack a birthday note AND consider making a small donation to CPNJ Horizon High School in his name. His Wheeln n Walkin Challenge is tomorrow and we are only half way to our goal . CLICK HERE.
smiles and duct tape 