Category Archives: family

where did the tears come from?

Posted on by

0

Every month I speak to medical students from Rutgers University. It’s a small group of third year students who are in their pediatric rotation. I’m a “patient representative” who is there to share our family’s story and the good and bad of what we’ve experienced with doctors. I look forward to these Zoom sessions and am always impressed with the students and appreciate being able to sneak in as much as I can about ALD — the often missed signs of ALD and the importance of newborn screening.

After we go around doing introductions, I share the video that bluebird bio made about our family. It’s a great way for the students to learn a bit about our journey and “meet the family”. While the video plays, I usually take the opportunity to slip away from my desk to make a cup of tea or check in with Dan and Jack. Last night I sat and watched the video with the students.

I found myself in tears.

I did regain my composure by the time the video was over and got through the next hour and a half managing to hold it together as I shared stories of working with many exceptional doctors and some who were lacking empathy and/or the ability to recognize when they may need more education about our not as rare as you might think disease. I always try to be approachable and relaxed, using humor to make everyone as comfortable as possible as I share stories about witnessing our son unravel, searching for answers, receiving a life-threatening diagnosis, watching as our once typical, healthy son fight for his life, and learning to adapt to a life that none of us ever imagined. I’ve done this enough that I can let the words just flow. I did a fine job, but I couldn’t help feeling distracted.

After the session, I got up and went directly into Jack’s room, knowing that time with the boy would brighten my mood. We sat and watched The Impractical Jokers and laughed until it was time for us to get ready for bed. I did feel much better after spending time with him.  Jack is doing great. He loves his adult program and time with his other mothers AND can comfortably live at home. His health continues to be stable and, except for an occasional tear shed while watching those ASPCA ads, he always has a bright smile on his face. 

Although I felt better, as I tried to fall asleep last night, I kept thinking about my reaction to watching the video. My only explanation for yesterday’s tears is that it’s been a while since I let myself really focus on what we went through 15 years ago. Sure – I share it, but I remove myself as much as I can from the story. I fill in as many of the dark spots with humor and light. It’s how I survive.

If I were my own therapist, I would ask myself how this strategy is working, and I think my answer would be that it’s working pretty well — I don’t want to live in the dark. I want to live in the light. I want to enjoy all the good our family has experienced and not waste time with the what ifs. BUT maybe sometimes I should consider allowing myself some time to be frustrated or mad or sad. I’m not sure how or when, but I will sure try to avoid doing it in front of a screen full of students.

Love, Jess

SOMA

Posted on by

0

What will be add to our wall?

Lately, every time we travel Dan and I have the “could we live here?” conversation. Is there enough hiking for Dan? Are there enough resources for Jack? How close would we be to an airport? Would we be close enough to Anna? Could I find clients?

It’s not that we do not like SOMA – that’s South Orange/Maplewood for you out of towneres – we LOVE this community. It’s just that we’ve been feeling like, after 25 years (and two kids, three homes and four dogs), we might be ready to start our next chapter. The kids are done with our school district, taxes are high, many of our friends have left, and we no longer need an easy commute to NYC (the crypto world doesn’t require much time in the office and everyone/everywhere needs therapy). We’ve talked about Block Island, the Jersey shore, Massachusetts, Puerto Rico, the Chesapeake and Maine. They all have their benefits, but will anywhere ever be able to compete with SOMA?

This week, we’ve had a reminder of just how special our community is. We were asked to be interviewed by SOMA Living Magazine for their October issue. Each month they choose a local family to highlight and an old friend recommended us. After sitting through the interview and being asked about our journey since we moved from Brooklyn, we found ourselves wondering why/how we could ever leave our beautiful/progressive gem of a town(s). We shared countless stories about our town(s) – the schools that educated our brilliant daughter and supported our son without question, the restaurants that draw people from all over NJ, South Mountain Reservation which allows Dan to disappear when he needs time with trees, and the people – soooo many stories about the people of SOMA. For 25 years, SOMA and it’s people have helped us celebrate wonderful days and held us up during our dark times. These towns are beautiful and progressive and crunchy and accepting.

We know that our future will ultimately lead us to a move, but for now — we are here. I need to get my supervised hours before I can hang my own shingle, Jack has wonderful support thanks to Universal and his other mothers, and we are not yet sure where Anna will land for medical school. We know in a few years we will make a move, but instead of dreaming of our next home, I’m going to start really appreciating what we have here.

Thanks SOMA!!!

Love, Jess

I will be sure to share the article in October!!!

Interesting = Funny

Posted on by

2

Life with Jack is always interesting. If you see us out and about you might notice some quirky behavior. Watching a balding, 23-year-old dude being fed by his parents or how when Jack walks, he often takes a giant hop every few steps. His behavior is unusual enough that people sometimes pause before quickly looking away OR giving him a broad smile – we prefer the smile. It’s the stuff that happens without getting people’s attention that’s sometimes the most interesting. If you can learn to think of interesting as funny, it can make life much more manageable. Saturday was one of those days filled with interesting/funny.

We started the day with a beautiful hike in Rodman’s Hollow and then went off to The Oar to get some lunch. A two hour wait left us driving around trying to find an alternative. The Kittens had a line to the street and the Beach Head didn’t have any tables. Finally, we found a good spot where we’d never been with a table for three available. When we got to the table, I asked Dan if he could take Jack to the bathroom. Dan shook his head, “No need. He just went while we were waiting in line. Remind me that we need to wash his shoes when we get home.”

I looked out the window and saw that it was starting to rain. I figured that Mother Nature was taking care of the clean-up and wet shorts at the beach aren’t so unusual. Oh well — we just ordered lunch and all had a good laugh.

That night we met old friends to watch the sunset and enjoyed some delicious drinks and fun conversation before deciding it was time for us to go get some dinner. As we were leaving, we realized that Jack had once again left his mark. Going home to change him was a possibility but we were starving. Using the bathroom at the rather fancy location risked them knowing that what was spilled on a chair was not chardonnay. It was dark and nobody was in the parking lot so I handed Dan Jack’s bag and told him I would stand guard. Five minutes later we were on our way to dinner as if nothing had happened. We had another laugh.

People sometimes ask how we manage our complicated lives. Being a special family isn’t always easy, but if you can have a sense of humor and not fear a little pee, then you can do just about anything. AND Block Island – with all it’s magic, relaxed people, and dark parking lots – makes it that much easier!

We’re enjoying our last couple of days here on Block Island, then seeing friends in MA before heading back to reality. We’ve miss Anna, but this has been a wonderful week. Thank you PopPop and Sue!

Love, Jess

PS If anyone knows of adult diapers that actually work, please let us know🤪

Do you feel ready?

Posted on by

3

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

Christmas 2020

Posted on by

1

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

Holidays + COVID = 0

Posted on by

2

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

Posted on by

12

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.

second wave

Posted on by

0

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

safe(ish) choices

Posted on by

2

September is here and it’s been fascinating to see how everyone is getting back into the swing of school/fall — in-person small classes, home schooling, virtual learning, hybrids. Our family is still struggling to find our “back to school” routine. We have a messy, make-shift assortment of activities for JackO that we seem to be constantly changing (although he is happy and busy(ish)). Anna is back in Baltimore, taking classes from her apartment and has already been quarantined twice after being exposed to people who tested positive for COVID. Dan is continuing to work from our home office and seems to enjoy working unshowered in tee-shirts, but I do hear him throughout the day yelling at Fios. I win the award for the least productive family member. I do start each week with a master plan of writing and work-outs, but instead find myself doing everything but. At least my closets are clean.

These are crazy times and I keep reminding myself that things will get back to normal at some point. Maybe NORMAL isn’t the right word. 

Thirteen years in, and our family still refers to our lives as before and after ALD. Two years following Jack’s transplant, we still had a suitcase in the trunk of the car just in case we found ourselves in the hospital. And, when everyone was struggling to find masks in March, all we had to do was go into Jack’s closet where we had our leftover pile from post-transplant isolation days. Having gone through that time in our lives, scarred us and left us always feeling like a shoe could drop at any moment. I resented this unease for years, but I guess it prepared us for this latest sh^tshow (I tried to find another word, but noting really worked as well).

Having learned from our ALD experience, I would imagine the entire world will live for quite awhile referring to life as before and after COVID. I’m guessing that it will be years before a cough is just a cough and the pile of masks at our front door disappears or we allow the Purell in the car to dry up. I know someday we will go back to living again, but when?

Maybe instead of focusing on getting back to normal we should focus on creating a new way of living. I know for some of the country, masks have become a political statement, but here in our area masks are mainstream. It means that I now venture out into the community without too much fear. I do find I am constantly looking around for maskless faces and listening for coughs, but mostly I am just going about my business. Being out — even just to run errands — feels liberating after months of the only non-family member we would see was the UPS deliver person.

Part of our back-to-school/fall plans is seeing more people.

We are trying to have friends over at least once a week and even went out to dinner last weekend — outside. I’m taking walks with friends again and Jack has his “other mothers” and his favorite OT (we love you Mr. Galo) coming to the house again. We are even heading to visit friends and to see my in-laws for a few days this weekend. Not that any of these choices are perfectly safe, but everyone we are seeing has been hunkered down and except for a small crew of people, everyone wears masks when not outside/distanced. We feel there is minimal risk, but do appreciate that some of our choices aren’t perfectly safe. Still, we are willing to take the limited risk. Stretching our comfort level is important for us right now so that we stay sane. We were starting to go a little nuts and within a few weeks, the cold will blow in and entertaining will become harder. The flu season might also complicate re-opening in general and we don’t want to look back in November and wish we had seen more people while we could.

So that is where we are right now. Trying to get in the rhythm of the new season and control what we can. Wear masks when out, wash hands constantly and see people in a safe(ish) way.

It’s Thursday and I still haven’t done much working out, but at least I can say that I did spend an hour writing. Now I can go back to procrastinating my paperwork and organizing another closet. Maybe I’ll also reach out to some friends and see if we can make some dinner plans out on the patio next week.

I just hope that, before too long, we can worry less and hug more. Until then — Happy FALLLLLLL!

Fingers Crossed, 

Jess

ZOOM LIFE and “this is a REALLY happy mom” smile

Posted on by

0

I’m glad I waited before turning on our camera. I needed a few minutes to get my bearings. My priority was to keep Jack calm and happy. It was hard enough to hide my reaction from him —  I couldn’t risk anybody else witnessing any tears of awkward stares.

It’s one luxury of ZOOM LIFE — People don’t need to see you, until you’re ready.

Once I took a deep breath, I put on my best “this is a REALLY happy mom” smile and hit “start video”.

Last week Jack started logging onto some virtual activities with the adult program he will (some day) attend in person. The lovely staff sent us a list of options ranging from art classes to Zumba to music to virtual outings. We were excited to start participating and eager to have a bit of a schedule; especially with Anna heading to Baltimore before too long.

I knew that once we logged in we would “meet” many of Jack’s new peers, and we also knew his peers ages range from 21 — 70+ and that they all (like Jack) have rather complicated lives. 

Let’s go back 13 years to when we walked into The PG Chambers School for the first time. I managed to keep that “this is a REALLY happy mom” smile, but tears filled my eyes as I was introduced to Jack’s new peers. Our family hadn’t been part of the special needs world until Jack was eight-years-old and thrown in with no time to prepare. We hadn’t known many children with such complicated disabilities before the day we walked into the school. I know it sounds awful, but it made me sad and overwhelmed that Jack was suddenly part of this world.

The same thing happened when Jack started at Horizon High School (now Pillar High School).Teenagers with disabilities were not a population I knew and everything looked bigger and more complicated. My “this is a REALLY happy mom” smile needed to be firmly planted before I walked into the school that first day. Maybe two.

Of corse within weeks, first at The PG Chambers School and then at Horizon High School, the student’s disabilities faded and their personalities shone. Quickly, I found I no longer focused on the wheelchairs and tubes and braces. Instead, I would focus on the smiles and the wonderful energy that always filled the space.

I pride myself on being open-minded and non-judgmental. I don’t define people by their successes or their failures. I don’t judge people by their talents or their challenges. But, once in a while, I need to pause to let my emotions catch up to my brain.

Last week, as we logged on to the virtual program, I needed a second to look around at the boxes of new friends and take a deep breath, before hitting “start video”. Within a few minutes we were dancing Zumba as a family, but we weren’t dancing with our usual Torrey gusto. While ZOOM LIFE can make things a little easier, it is a bit harder to connect and feel part of something new when everyone is just a box on a screen.

If the staff at the program asked how they thought Jack and his family were adapting to their program, I’m guessing they would say that we are a lively family and seem happy. Our family IS both lively and happy, but we are human and sometimes it takes us a moment. Until then, we will dance until we can really boogie — I imagine that the staff will see the difference when it happens. AND, I am guessing it will happen soon.

I hope everyone is enjoying the tail-end of the summer and getting to do a little boogieing!!

Love, Jess