Tag Archives: COVID-19

Does he look happy?

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I’m outta here!!!

My alarm went off this morning. At first, I couldn’t figure out where the annoying sound was coming from. I looked around the bedroom confused and irritated until I saw that the loud dinging was coming from my phone. 

Today was our first normal weekday in 18 months! Dan’s away on business, Anna’s at school and Jack needed to get up and dressed so that he would be ready for the bus to take him to his new adult program. I needed to get out of bed and get started! My old morning routine felt so foreign. I kept thinking, What am I forgetting? Toileting, teeth-brushing, shower, dressing, toileting again, laundry, medication, breakfast, pack backpack, toileting again, shoes . . . Tupelo was frantic as she witnessed the flurry of activity. Mornings at the Torrey house haven’t ever been structured since she joined the family.

Once I was fairly certain I remembered everything, Jack, Tupelo and I went outside to the front bench to wait for the bus. We sent Dan a photo just like the old days and within a couple of minutes our new friend, Robert, pulled into the driveway. Jack didn’t miss a beat – he jumped right up to get on the bus. I waved and blew kisses, but he didn’t even look my way. He is so ready to get back to the world!

Jack has FINALLY started his adult program! I hate calling it his adult program — it sounds so cold. Instead, we’re calling it graduate school and Jack seems to love graduate school. He has gone two days with Maria so that she could help everyone learn how Jack works and she reports that (no surprise) everyone is friendly and loves our boy. Today was the first day Jack went solo and we’re all very happy for him. And, for me it was kinda wonderful to watch the bus pull away and to walk into an empty house.

I’ve spent the whole day doing schoolwork, but just knowing I could blast some music or jump in the pool or watch Bravo without anyone judging me feels good. Also knowing that Dan is finally meeting his colleagues in person, Anna is going fraternity parties (and in-person classes) and JackO is spending time with friends at graduate school – makes me feel like we are on the other side of COVID. I can deal with the annoying alarm and crazy mornings if it means that our lives are coming back!

Let’s keep it this way folks! Do your part — Get vaccinated, continue to wear your masks and PLEASE stay home if you are sick. 

Love, Jess

Do you feel ready?

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When will we feel ready?

Most days I feel like COVID is over. Besides grabbing my mask to walk into Target or the doctor’s office, COVID seems to be a thing of the past. I watch the news and hear stories about outbreaks of the Delta variant and know that people are still getting sick around the world, but here – in our little northeast, suburban bubble – we’re starting to relax. Everyone we know has been vaccinated and I don’t know anyone who has been sick for months.

So why are waiting to send Jack back into the real world?

We are traveling again, we are eating out, we are having friends over and even letting them inside the house. We no longer wash down our groceries or cover ourselves in hand sanitizer every five minutes. There are days that go by that I don’t worry about much, including Was that a hot flash or a fever?!?!?

Still – I’m worried about sending Jack back into the real world.

Jack graduated from high school from our driveway last May and at the time the adult program he was due to start was closed to in-person clients. It was closed for over a year, and we got rather used to this new, slower pace. Jack gets to sleep in and hang out with Maria and her family. He gets to take walks and spends time in the pool. He seems content. I know that he would love to spend some time with his old buddies and perhaps he might be a little tired of his loving family, but every time I think about a bus pulling into the driveway and taking him off to a day program, I start to panic. How many people will he be with throughout the day? Has everyone been vaccinated? Who is going to feed him, and will they wash their hands . . . for twenty full seconds . . . or more?

Is Jack trying to tell me something?

I know all parents can relate. Many felt that way the first time they dropped their babies off at day-care. Leaving your precious love in someone else’s hands can be scary. At almost 23 years old, Jack is still my precious love. As much as I researched the program and am very impressed with everything that they’ve done to protect their clients, I can’t seem to pull the trigger. I’m worried about new variants and careless coughs and a lot of other What ifs?. I think I ‘m also a little worried that if we send him back that somehow, we’re jinxing everything for EVERYONE (I’m sure my professors would have a field-day over that ridiculous sense of power)!!

Is it nuts if we wait until September? Isn’t September a good time for us all to dive back into real life again? Anna will be heading back for her last term at Hopkins and Dan will start going into the City a couple of days a week. I’m starting my internship in-person at a clinic in Newark. Waiting until September will allow a little more time to see what’s going on, and it’s right around the corner — RIGHT?

Writing this has made me feel like I’m being a little cautious. I reached out to them and next week Jack, Maria and I are going to go see the adult program in person. Perhaps it will make me breathe a little easier. I still think September sounds good, but who knows!

I’ll keep everyone posted. Meanwhile, please tell us — Do you feel ready?

Love, Jess

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

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

second wave

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I used to love the fall. It’s crisp air and magical light always arrived to some relief after a busy, hot summer. The beginning of the school year always felt like a new beginning and our calendars were filled with annual events — harvest parties and parents’ weekends. And, the fall culminates with a wonderful holiday — my birthday.

This year is different. As the temperatures lower and the leaves begin turning, I’m starting to panic.

I’m worried that we’re approaching the second round of hunkering down as the fall has arrived and the COVID numbers have started ramping up again. This time we know what it looks like to quarantine and, in this case, knowledge is not power — it sucks.

When all this started in mid-March, we thought it would be a couple of weeks. Almost like an extended snow day. We filled our freezers with food and set up the puzzle table in the living-room. Having the four of us home was like an unexpected staycation. Am I the only one that thought it was kinda fun? For a couple of weeks . . .

Then the reality crept in. A few weeks of missed school turned into no prom or graduation for Jack. Anna’s spring semester ended at home and then Hopkins announced virtual learning for the fall. Dan’s office started talking about limited returns to in-person work, but not until 2021 and every single house project I had on my list got finished.

Just as we thought that we would go nuts (with just our tiny pod), the weather warmed and our backyard filled with other people and life was okay again. Different, but okay. We got into a rhythm. Dan realized that he could sneak in some hiking while on calls. We planned at least one dinner a week with friends or family. Anna headed back to study in Baltimore for a change of scenery (and people). Jack got to spend some time with old friends and enjoy long walks and hours in the pool. We even ventured to friend’s yards and restaurant dinners (in parking lots), and snuck in a couple visits to Block Island. Our family realized that we could manage our strange new life of masks and Purell as long as we could see some people. It wasn’t a normal summer, but it was lovely.

Now days are getting shorter and cooler, and except for a few fire-pit nights planned, I see a very empty calendar. It’s hard to make safe plans if we don’t have the ability to be outside.

I hear people saying that things can’t shut down again. The economy will be ruined and people will go insane. I agree, but I’m just not sure my family has a choice.

Jack’s immune system is pretty strong 13 years post-transplant and we are usually able to manage his Addison’s Disease and Epilepsy with medications. Jack might be able to get through COVID without too much harm. But he might not. My parents might do just fine. Or not. And what if I got sick? Not in-the-hospital sick, just really sick. Who would care for Jack? Where would I care for myself?

We’re a family who is erring on the side of caution and I’m worried that it means that we will soon be limited to our home and a tiny pod. I don’t WANT to do it again. I’m just guessing it’s going to happen. So for the next few weeks we’re planning to do as many outdoor activities with friends/family as possible. We are also going to load up on some extra food for our freezer and grab a little extra toilet paper.

I know we are not alone in worrying about friends and family who might be more vulnerable. What are you doing to protect them?

Love, Jess

Too Many Variables

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Last week I had meeting with Jack’s support coordinator to organize his plan for the fall — via Zoom, because that’s how we meet with people now. 

Although we love our support coordinator (she’s organized, smart, kind AND she returns my phone calls), I got off the phone feeling exhausted and not really sure if we had accomplished anything productive. We kept throwing out dates and ideas and then going back to other dates and ideas. Honestly, I’m not really sure what we came up with or if it makes sense.

The only way I can describe it is as a giant algebra problem without enough information to solve it. Too many variables.

Now that Jack is an adult, he receives a budget, through DDD, to pay for activities. Last winter we’d found a wonderful day program and he was scheduled to start on July 6. We had budgeted for him to attend the program 5 days a week for 6 hours a day and then knew exactly how much we had left for other things like at-home support and a variety of therapies.

Then COVID-19 arrived.

The day program closed and the last we heard they’re hoping to reopen after Labor Day. If life were normal, we could plan accordingly. We would correct the budget and plan to start on September 8 — but life isn’t normal.

Not only does the program not have a definite opening date, they don’t know exactly how they plan to open and whether or not they will be excepting new clients right away. And, this being a new program for us, we’re not sure if we will feel comfortable starting immediately once they open their doors. So many safety concerns. We can’t send Jack until we are completely confident that the program is safe. 

BUT what does SAFE mean now?

Perhaps it means that the program is smaller and thoroughly cleaned every day. Perhaps it means they will stagger the hours for their clients, so that social distancing will be easier. Perhaps it means that every client will be provided a one-to-one to help keep everyone socially distanced and wearing masks. Perhaps it means there’s a good vaccine and/or treatment options. Perhaps it means that COVID-19 disappears magically.

Once we decide what SAFE means,  Jack might be able to start a day program, but will that be in October or November? It’s more likely that we won’t feel confident until January or February or March or . . . . ahhhhh!

How do we make a plan when we don’t have any dates?

Jack’s budget does provide at-home support and Jack’s caregiver, Maria, (and Anna, when she’s home from school) will continue to work for us, but we need to be careful about how many hours we use. If we use too many hours, we may not have enough in the budget for a day program once we are ready.

Since COVID-19 burst into our lives, I’ve gone through a lot of emotions. For a while, fear was all I could focus on — fear of leaving the house, fear of the groceries carrying germs, fear of opening the mail. Then I went through weeks of being exhausted from washing down groceries and by the energy it took to plan simple outings like going to the post office. Then, I seemed to flip and felt bored and useless — checking off days on the calendar when I couldn’t think of one significant thing that I’d accomplished. Depression was creeping in, and last week’s phone call with our support coordinator didn’t help.

It’s not just the unknown about Jack’s plans. As I look at the next couple of months, we have plans, but know that they are subject to change at any time. Our trip to Block Island, Anna’s return to school, Dan’s office reopening. Everything is fluid these days and it’s starting to really get to me.

Our family is pretty good at adjusting. We’ve been able to zig and zag through a lot of things that have come our way, but the problem is that COVID-19 doesn’t have — even a hint of — a timetable that we can glance at to know when life will return to something that feels normal.

I like to wrap up these posts with some “glass half full” statement or something to make you laugh, but I can’t think of anything today. Sorry. This suck. I hate COVID-19.

Love, Jess

Wear a mask. It might not be perfect, but at least it makes many of us feel a little safer.

Okay — I won’t leave you on a bad note. Here’s a fun picture of our new dog, Tupelo.

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.

Day 35

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What does Jack think about quarantine?

I usually feel confident that Jack understands everything, but sometimes is hard to know for sure. This is one of those times.

I’ve been getting Jack up around 9:00 every morning and when I walk into his room, he pops right up and smiles. He doesn’t have the bags under his eyes that are becoming my new signature look. When I check the camera app to see how many times he woke up in the night, there’s no significant change since the old days (before COVID-19). Dan and I have been experimenting with night-time teas and melatonin and pm medications and one more glass of wine to help with sleep (maybe it’s just me who is trying the “one more glass of wine” method — it doesn’t really work, but I’m gonna keep trying). Jack doesn’t seem to need any help transitioning from the day to a restful nights sleep. 

Jack definitely knows that his family is all home, but that it’s not a normal weekend or vacation. After his morning shower, he marches into the office – where he knows his Dad will be. And after breakfast, he starts walking towards the stairs, wanting to go wake his sister.

He no longer watches out the dinning-room window looking for his school bus to pull into the driveway. Instead he knows it’s time to sit at the kitchen island or out on the patio in front of the computer. When he sees his classmates or friends on Zoom, he smiles and stays on his stool so that he can hear what’s going on.

My parents and Maria (Jack’s wonderful caregiver) are the only other people who have entered the house is 36 days. Jack is always happy to see them, but seems to understand the there are no more hugs or licks and signs I love you from several feet away. 

He definitely knows that life has changed for now, but doesn’t seem too worried. Jack has always lived in the moment. Long before ALD, he was never a kid who stressed too much about what’s coming — or what might be coming. He trusts us and trusts things will be okay.

That trust/faith was strengthened 14 years ago when we promised him that we would keep him safe. With the help of wonderful doctors, nurses, tons of prayer/positive energy and luck, we were able to keep him safe then and we are trying our hardest to keep him safe now. It’s worrying about his safety, and the safety of our entire circle of friends and family, that has me up at night and yelling at the television during the day.

I’m so worried that no matter how careful we are, bad news might find it’s way into our lives. This is a terrible virus and there is still so much unknown and no clear path to reaching the end of it’s horror.

I’m trying to hold it together, but Jack has witnessed me melting down several times over the last five weeks. Just last night he found me in bed, yelling at the television screen and he walked over and climbed onto the bed next to me. I haven’t seen him do something like that so seamlessly in a very long time (any task with more than one step can be a challenge for our boy). It was just what I needed. Jack might be silent, but he is able to share his heart, strength and faith clearly.

So, what does Jack think about quarantine? This is all I know for sure — he’s missing school, but loving having his family around all the time. He’s missing his buddies, but enjoying long walks and the spring weather. And, he’s living in today and trusting that things will be okay.

Stay strong, wash your hands and try to live in today.

Love, Jess

 

Knock, Knock

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Yesterday our Ring camera alerted me that there was someone approaching our front door. I looked out Jack’s bedroom window to see my friend, Gail, with a bag in her hand. I glance down to my phone and noticed a text from her, “I’m going to drop a few masks in your mailbox in a minute. They have been washed in hot water using scent free detergent and softener, but I would wash again just to be safe. I delivered using disinfectant wipes.”

As she walked back to her car, I knocked at the window and waved. We gave each other the sign for I love you.

Last week my friend, Blake, knocked at our dinning room window. I’d been fighting with our cable box and the knock had startled me, but once I realized who it was I opened our front door. She stepped away from the house so that we could talk from a distance. She told me that she had stopped by the day before and had knocked at Jack’s window and waved with Jack, “Did he tell you I stopped by?”

Jack’s good at keeping secrets, but he must have loved seeing another person in the flesh. And, Jack and I have been doing yoga with Blake every morning for the last couple of weeks. Her yoga studio has made online versions of their classes and her calm voice and goofy sense of humor is always welcome – especially now.

The beauty of having friends who are spending their days creating masks for hospitals and people in need. The generosity of friends who are turning their local businesses into helpful additions to long days. The frustration of being trapped in the house. The horror of not knowing how long this will last. These are the thoughts that are scrambling around my mind these days. These are the thoughts that have me feeling extremely grateful and really scared/frustrated/overwhelmed – depending what moment you catch me.

How did we get here?

Just a few weeks ago our lives were frantic. Our spring calendars were packed with travel plans, school events and parties. Now our days are filled with Zoom calls, online yoga classes, cleaning out drawers, Tiger King and watching friends through windows.

Sending love from Speir Drive.

Love, Jess

Day 14

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Writing has always helped me process difficult times. Finding words to describe what I’m feeling has allowed me to work through my emotions. Sometimes it’s like figuring out a complicated puzzle — when I realize I’ve broken the code, I’m often exhausted but relieved.

The last couple of weeks I’ve had trouble finding the right words.

I’ve shared our family’s journey for 14 years. I’ve shared our struggles and triumphs. I’ve shared so that people could understand what it’s like to live a complicated life. Now everyone’s life is complicated. We are all in the same boat, so I guess I don’t really need to find the right words.

It’s surreal to live in the most powerful country on the planet and within weeks, we’ve all been brought to our knees. We are all home, watching the news, worried about our health and our country and our 401Ks. Although some people are suggesting that we will reach the other side of this within a few weeks, I think most of us understand that this will not be over by Easter. This may not be over by Memorial Day or Thanksgiving or New Years. It may be years before we nonchalantly give a hug to an old friend or meet up with pals at a crowded bar or travel abroad (or locally for that matter).

It’s been two weeks since our family has left the house (except for a few errands run by Dan – clad in a mask and gloves). Day 14 makes me a little less worried about anything lurking here, but I am worried about plenty. I’m worried about our family and friends. I’m worried that if anyone I love does get sick, I can’t be there with them. I’m worried about all of the doctors and nurses we adore putting themselves in harms way daily — without the proper protective gear. I’m worried that we will run out of toilet paper.

But, life needs to march on.

Life at home has been strange, but we are finding our rhythm. We’re on our third puzzle and are all taking long walks every day. When I’m not cooking (LOTS of cooking and dishes) we’re ordering in from our favorite restaurants (trying do help them stay in business). Dan has his office set up and seems to be getting a ton done and Anna is up in her room attending college. Not sure how labs or Life Drawing is going to work, but so far it’s been okay. Jack and I are keeping busy with online yoga classes, bad TV,  and (If Jack’s teachers ask) he and I are doing 7 hours of school work a day.

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We’ve also been catching up with friends and family every day. It’s one nice benefit of this crazy time. Everyone’s eager to connect with each other. JackO really looks forward to these calls. He’s kinda sick of us at this point  – thank goodness for FaceTime and Zoom.

We hope everyone is doing okay and heeding the recommendations to stay home. Sending a huge shout-out to all the doctors and nurses and grocery store workers and EMTs and postal workers and UPS drivers and everyone else who is out there so that we can stay home.

Stay safe!!

Love, Jess