Monthly Archives: May 2020

Thirteen is a LUCKY number

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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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TOGETHER — ALONE

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Yesterday we just received Jack’s cap and gown with a note regarding his graduation celebration. Each graduating student will be scheduling a time when their teachers/therapists/principle will arrive at our homes and, from the safety of their cars, the staff will play Pomp and Circumstance. The students, dressed in their graduation finery, will pick up their diplomas from the lawn as the school films them. There will be a virtual graduation in June to watch Jack and all his classmates TOGETHER — ALONE.

I’m proud of his school for organizing such a thoughtful event, but unpacking the cap and gown brought me to tears. It’s so unfair that these kids, who have each suffered so much in their lives, are having yet another thing stolen from them.

I know we are supposed to focus on being ALONE — TOGETHER, but this virtual reality we are living sometimes feels more TOGETHER — ALONE.

Our family has done very well for the last 69 days. We’ve not complained (too much) about our current circumstances. Instead, we’ve focused on being grateful for our health and full fridge and paychecks and toilet paper. I think part of our positive attitude has been because our family has dealt with being quarantined before — first in a hospital and then at home for months and months following Jack’s stem cell transplant. This time, we haven’t been in charge of IV medications and taking turns sleeping in Jack’s room to make sure he was still breathing. AND, this time we haven’t been alone. All our friends and family have been doing the same thing. Most of the world has been at home.

So, instead of feeling sorry for ourselves, our family has taken the opportunity of this crazy time to slow down and do what we can. We’ve created a rather magical garden in our backyard. We’ve cleaned out closets and revisited hobbies like yoga and puzzles and painting.

Sure, we’ve all missed some things. Anna missed much of her second semester living at school. She missed parties and lacrosse games and The Preakness. Dan missed business travel and planned hikes and baseball. I missed teaching and spending time with my new nephews and trips and being in Listen to Your Mother. Jack’s missed school and friends and hugging (and licking) people other than his family.

Now he’s missing his graduation.

Like being quarantined, I’m trying to remember that he’s not alone in missing his graduation at school. Many of our friends have children celebrating their high school/college graduations virtually, and that does make it a little easier. There is power and strength in numbers, but it still stinks. I do hope that once this crazy time is over, Jack can return to his beloved high school and march in a ceremony with his classmates. They deserve it.

Until then, we will continue to settle down and continue to settle in, but we are starting to open our lives a little. Starting to plan some time with friends — is a SAFE way (or safeish). Dan met a friend to go fishing for an afternoon and, from a distance, got to catch up and share stories. Anna had a couple friends over the other night and they sat 6 feet apart around a fire pit. I sat out with them longer than I probably should of, craving in-person conversation (sorry girls). I can forgo haircuts and restaurants for a while longer, but I’ve missed my  friends terribly. I’ve started to make some safe (ish) plans with pals and I can’t wait for Jack to get to do the same with his friends. Not sure when, but we are going to get the graduating class of Pillar High School together again.

Until then — Congratulations Class of 2020!!!

Love, Jess

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.