Tag Archives: this is ALD

Jack’s Other Family

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I’ve been writing more than ever but none of it seems to make its way to this blog. Unless you want to learn a bit more about bipolar disorders or various treatments for anxiety, I’m not sure anyone but my professors would find any of it interesting. But, it’s been a month since I posted so I wanted to take a moment to fill you in on JackO.

I miss Jack. 

Ever since I started school, I’ve noticed that Jack is spending less and less time at home. At first it was every few days Maria would say that they were going to just swing by her house to check in on her daughter and then Dan and I would get texts with pictures of Jack sitting down at a glorious meal or out taking a hike or watching Maria’s daughter play softball. Every few days turned into every day and sometimes I need to send a text reminding them that it’s bedtime. Maria well exceeds her paid hours because they are in the middle of a movie or making pizza or they are waiting for a cake to get out of the oven. I’m now convinced that Maria and her family are planning on stealing Jack for good. I can’t blame them – he’s good company.

It’s now been over a year since Jack had a formal schedule. 411 days since he would hop on a bus and have a day full of adventures and instruction with peers and therapists and teachers. It’s been an adjustment for the rest of us, but Jack never seemed frustrated by the new COVID reality. The first few months he just loved having his whole family around all day. And then he enjoyed every show we introduced him to – The Office, Cheers, Seinfeld, Full House, The Wonder Years, That 70s Show. But by the time I started school Jack was running out of television, Anna had returned to Baltimore and the house felt rather boring with Dan working and me buried in my studies. Maria saw a need and she filled it. 

Over the years Jack has had “other mothers” who have loved and cared for him – Taryn, Sabrina, Peter (other father), Sara, Lilly, Celia, Ivete, Monica, and on and on. Jack has been so blessed to have these “other mothers” and now Jack has a whole “other family”.

For a school project I needed to interview someone going through a developmental stage that we’ve been studying. I sat down with Maria’s beautiful 10-year-old daughter, Jamilla. I’ve known her since she was born and thought I knew every detail of her life but hearing someone’s story in their own words is always fascinating. I enjoyed every second of our talk, but it was the last bit that nearly brought me to tears (happy/beautiful tears). When asking her what it was like to be an only child, she quickly told me that she wasn’t, “I have Jack.”

I miss Jack but there is a lot of him to go around. His love and licks and contagious positive attitude need to be shared. As much as I miss having him here all day, I am so happy that he has another family to keep him busy while Dan is working and I’m trying to get my 51-year-old brain to retain crazy amounts of information.

AND we’re opening the pool next week, so I feel pretty confident that they may start having more adventures over here for the next few months!!

Love, Jess

ALD Camp at Home Family Weekend with the Painted Turtle

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Calling all ALD families!!! PLEASE register today for this year’s CAMP AT HOME ALD FAMILY WEEKEND (March 19-21). A weekend full of great activities for kids, interesting information for adults, and groovy music and dancing family fun!!!

The Adler family is incredible. Their beautiful son was diagnosed with ALD through CA’s newborn screening program in 2017 and without pause they dove into, not just helping their son, but helping the entire ALD community. They started The Lucas Project which has raised over $130,000 for ALD research and has raised international awareness for the disease. And, along with Dr. VanHaren and The Painter Turtle, the Adler family has organized this incredible annual event.

If you would like to learn more about ALD, or how to help our community, or connect with other people, or make lovely artwork, or just dance and sing — THIS is your weekend!!

We look forward to seeing you all there!!!

Love, Jess

2 shots (8 total) and 1 shoulder

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It’s hard now to find the time to sit down and write something that’s not about a specific therapy or therapeutic practice, but I wanted to sneak away form my studies and fill everyone in on some BIG news — The Torreys of MAPSO are now fully vaccinated!!!!

You may have heard that the second dose of either COVID-19 vaccine often results in a crappy day – fever, joint pain, chills and other “crappy” stuff. Both Dan and I each had a day feeling the effects and were worried about how Jack would do. We spoke with his doctors and decided the minimal risk of a reaction was outweighed but the HUGE reward of protecting him from the virus. We did stress dose him with his steroids for a day following the second dose and kept him super hydrated. Then we watched him like new parents watching their newborn breathe. The only one who had any side effects from Jack’s second dose was me, because I was waking up constantly to check on him. Jack got through it like a champ!

We are so relieved to be on the other side of the vaccine. We are not planning any big trips just yet, but looking forward to not freaking out about every trip to the grocery store. AND, we are excited to be part of history and part of the solution to reaching the end of this crazy pandemic.

In other medical news – Dan had a shoulder replacement today. It’s been a long time coming and he is eager to see how this new one works. Not sure he will be pitching for the Yankees any time soon, but he is excited to be able to raise his arm over his head.

Back to my school work for now. Look out for another post soon about the next Camp-at-Home ALD Family Weekend at the Painted Turtle!

Love, Jess

Day +5000 (a post from Dan/Dad)

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Day 5000


Lately I’ve been distracted.  Distracted by the lousy weather outside the window.  The cold.  The grey sky.  The snow piling up… Distracted by the inane MTG politico drama playing out on TV every day and night…  Distracted by work stuff ( I just started a new job this week).  Work can sometimes be a positive and useful distraction – especially when living through the first 12 months of a pandemic (Yes, we are now in our 12th month…).  But at the end of the day, it is still a DISTRACTION.   


Sometimes the only part of the day when things come into focus, when my mind clears, when I shed all the distractions is when I get a giant hug from Jack.  It’s the best part of my day – every day. 

 
Even if you haven’t spent a lot of time with Jack, you know that he is non-verbal.  But you probably can’t fully understand how he communicates most directly and most effectively.  It’s when he gives you a hug.  He is extremely strong.  He will literally squeeze the breath right out of your chest.  It’s the best feeling in the world.  It’s when I regain all perspective — as I squeeze back! 


Today is Day 5000 in the Torrey house.  It’s been 5000 days since Jack received his stem-cell transplant in May 2007.  Since the doctors at Columbia Presbyterian Hospital saved my son’s life.  5000 days of a wonderful life.  5000 days of smiles and belly laughs and hugs and dancing to 70’s tunes.  5000 days of watching him and his baby sister grow up to be adults.  5000 days of “our normal life” with Jack.  


Think about what has happened in your life over the last 5000 days.  It’s hard to grasp all the changes, the good and the bad, the ups and downs,  the mundane and the thrilling, Hell, some days I can barely remember life before COVID.  But Jack and his hugs help me remember what is really important in life.  Not the distractions.  That’s nothing but a lot of noise.


Thank you Jack for being in my life. 


Love,
Dad 

MCATS, NYU, Old School Vinyl and Duct Tape

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hApPy NeW yEaR!!!! Less than a week into 2021, and our family is starting out strong. Anna completed her junior year at Johns Hopkins a semester early, so she’s taking next semester off to study for the MCATS. Not really … Continue reading →

Christmas 2020

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Christmas was okay, it just didn’t feel like Christmas.

We did get to enjoy Mymom’s famous sausage/spinach lasagna on Christmas Eve and woke up Christmas morning to made french toast and opened gifts. We ate and drank and listened to Phil Spector’s A Christmas Gift to You All. We spoke with family and friends via Zoom. We even got to spent the day after Christmas like every year — in our PJs watching movies and playing games. The holiday was lovely, but it just wasn’t the same.

The lack of other people felt strange. We were lucky to be able to spend time with my parents (they are our pod, although we are still careful). Our tiny table of six was filled with delicious food and lively conversation, it just felt a little festive then Christmas should be.

The entire holiday season feels a little underwhelming. We weren’t able to see our beautiful nieces and nephews or party with the extended family. There were no December Saturday nights where we Uber from one party to another. There were no lunches with my girlfriends to escape from holiday shopping. There will be no party with close friends to ring in the new year. I didn’t even have the heart or the energy to send out a holiday card. 

COVID was the Grinch that stole the holidays. 

We keep saying to ourselves that next year will be different. It better be. We need to fill this house again! 2020 has taught us all a lot about appreciating the small things AND that nature is powerful and sometimes cruel. Lesson learned 2020 — now let’s move onto 2021 with a new vaccine, a new president and (hopefully) tons of time with friends and family!!!

hApPy NeW yEaR!!!!!!!!!!

Love, Jess

Thanks JackO

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This morning I was sitting in my office feeling overwhelmed as I poured through my syllabi for the winter term. I was busy second-guessing my decision to return to school at my age and wondering how on earth I was going to manage, when I heard Maria (Jack’s caregiver), “JackO – why are you crying?”

I race downstairs to find our boy in front of Maria’s phone, watching a video with big tears rolling down his face.

Shakira singing John Lennon’s Imagine.

You may say I’m a dreamer

But I’m not the only one

I hope some day you’ll join us

And the world will be as one

Don’t ever confuse Jack’s silence with not understanding. He recognizes powerful words when he hears them and sometimes his emotions take over. Perhaps his silence allows him to listen even closer than many of us. I’m always amazed by the beauty of these moments. Maria offered to turn off the song, but I insisted that we continue. Tears aren’t always such a bad thing — beside I needed a little perspective this morning.

Love you JackO. And, John Lennon and Shakira too;)

Love, Jess

Holidays + COVID = 0

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Not sure how I can feel so exhausted when I do so little. Each morning I write a list of what I hope to accomplish. Some days go by where I don’t complete anything, so I return to the list and add things like — shower, walk the dogs, feed Jack — just so I can cross a couple of things off the list. With the holidays around the corner, my daily list gets longer and less seems to be getting done. Today, instead of Christmas shopping for the family, I ordered some bras and an eyebrow kit (not even sure what that is).

Love, Jess

our relationship in 100 words

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As the music plays, I lay my head on his shoulder and feel his breath on my face. I wrap my arm around him so I can stroke his hair and wonder when he’ll lose the rest. He doesn’t seem to know that he’s aged, but the years have come and gone and he’s showing signs of a complicated life. He loves this song. I can tell by the way his body is rocking. He’s not been able to speak for many years, but I’m able to translate. Our connection is deeper than the scars his disease has left behind.

Two Days

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Loving my new fancy ALD Connect mask!

I rarely check my calendar anymore. What’s the point? Plans aren’t really being made anymore. We live our lives playing everything by ear. All my sentences with friends and family start with — Let’s see or If the weather is good or Hopefully.

But this morning without thinking, I opened up my yellow 2020 monthly calendar and there it was — ALD Connect Patient Learning Academy. I should be packing my bags today to go down to Baltimore for their annual conference. Not this year. This year — like everything else — the conference will be on Zoom.

The 2020 conference was scheduled to be in Baltimore. My mother and I planned to head down early to steal Anna away from her college apartment, spoil her with a nice hotel room and explore Charm City for a day before hunkering down at the conference. Being in Baltimore and getting to see Anna for the weekend was going to be icing on the cake for what is always a wonderful few days with the ALD community. It’s an opportunity to sit with people who understand our disease — families, doctors, nurses, advocates, pharmaceutical companies, biotech firms — all with one mission — to win the war against ALD. It’s always an exhausting few days, but every year I leave counting the days until the next one.

Oh well.

It’s not perfect, but I will log in on Friday, and for two days get to listen to the latest news about ALD treatments and protocols. I will get to hear all the updates about newborn screening and hear stories of people’s struggles and triumphs over our disease. And, I will get to at least catch a glimpse of some of my favorite ALD folks on my computer screen.

Fingers crossed that next year we can reunite in person. Until then, I will enjoy the two days and try to appreciate the fact that I don’t need to take off my sweatpants and can get away with just a little mascara.

Love, Jess