Monthly Archives: February 2021

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 

4999 Days

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Day +4999 . . . 

4999 days since Jack received the stem cells that saved his life. 4999 days ago we never could have imaged what our lives would look like now. And if we had, I’m not sure that we would have thought that we could embrace lives that look like this. 

A few days ago incredible members of our ALD community lost their son. It wasn’t ALD that ended the life of this beautiful young man, but an accident. We’ve known many people who have lost loved ones this year. Not ALD, but COVID, cancer, heart attacks. Life is complicated and fragile and we need to appreciate every day. Our family is grateful for the last 4999 days and will treasure each day ahead of us.

I’ve been writing tiny love stories for the last couple of months. The New York Times keeps passing 😏, but I’ll share what I wrote last week. 

I open the door that separates our rooms and look at him lying there. The most beautiful face I’ve ever seen. As if in a trance, I crawl into bed next to him, trying to be careful. His bed is littered with complication. I slowly take his hand and place it between my own. I hold my face against his and I linger over his sour breath. There is always so much I want to tell him and sometimes wonder when we’ll run out of time. Tonight I will just be quiet and enjoy the moment with my beautiful boy. 

4999 days.

Love, Jess

PS Stay tuned — Dan is working on a post for tomorrow.