Tag Archives: family

All Good

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He’s fine.

Good as new.

All smiles.

These are the answers I’ve been giving all week as people have reached out. Social media spread the word that our boy landed in the hospital over the weekend and people were worried.

We were so confused that Dan and I didn’t really have much time to worry.

Over the last 6 weeks Jack’s had many sick days. Some cold symptoms, a few vomit days and random spiking fevers. We managed to keep everything under control thanks to stress dosing his steroids and over-the-counter medication. We did take him to the doctor’s office a couple of times and also visited the local urgent care, but nobody seemed particularly worried. They ruled out the usual suspects – COVID, Flu, Strep and finally prescribed a round of antibiotics which we gave him and it seemed to resolve whatever was going on.

Then Jack spiked another fever last Thursday. We called his doctor who asked us to come in for some bloodwork. The results led to a call no parent wants. We were told to go to the ER. Now. Something was wrong. We were told his white blood count was 32 — dangerously high.

Dan and I didn’t pause. I guess it’s some sort of muscle memory that takes over when you’ve been a hospital parent. We went to the ER, described his symptoms, and started educating everyone about ALD. They started running tests – bloodwork, urinalysis, x-ray, CAT scan. As the hours ticked by, the doctors ruled out a ton of things, but by the afternoon they all agreed that we needed to be admitted, “Just to be safe”.

By this point Jack was feeling great. His fever was gone, and he was really enjoying his time with doctors and nurses and a marathon of Friends. He didn’t seem the least bit upset by the news that we were being admitted. Dan and I were less than excited.

Sleeping in a chair is not something I’ve missed. Neither are the bells and whistles constantly signaling on a hospital floor. But, getting news over and over that test results were normal kept us together.

They sent us home on Saturday afternoon with no answers. The hope is that whatever it was self-resolved. We do have an appointment with an infectious disease doctor in a couple of weeks, just to be safe.

So Folks – Jack is fine. Good as new. All smiles.

And, please cross your fingers that I haven’t somehow jinxed us by writing this☺️🤞🫣🤞

Love, Jess

ALD Family Weekend!

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I realize I haven’t written in a while. Work is one excuse and we had JackO fighting a monster cold/flu thing for a couple of weeks. Luckily, he’s good as new. I promise to fill everyone in on everything JACK … Continue reading →

remembering to pause

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I spend a lot of time encouraging my clients to pause. Pausing to take a deep breath before they face something challenging. Pausing as they consider their next move. Pausing to enjoy the sunset, a hug from their child, a … Continue reading →

The word AND and the word ONWARD

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This week has been a good reminder that life is often full of the word AND. You can be struggling AND be successful. You can be proud of someone AND disappointment in them. You can be full AND eat the entire pint of Ben and Jerrys. You can have joy in your life AND sorrow. 

Our lives are always filled with ANDs, but this week joy AND sorrow have collided in a way that’s been unsettling.

We’ve been hit with the loss of a dear friend that has us all feeling shattered. A friend from my childhood – more of a sister really. Someone who knew me before I was me. We were part of each other’s families – our histories. She had a way of making the world seem brighter. Dan loved her too and of course so did Jack and Anna because this beautiful person was one of those people that everyone loved.

We’d been bracing for her loss, but you can never really be ready to hear the news that the world has lost a human that you treasure. 

We got the call that she was gone as I was setting up for Jack’s birthday party. Jack turned 25 last weekend. Seemed inappropriate to be celebrating but how could we not? Jack is 25 and doing great and beat so many odds. So, we plastered on some smiles, went through the motions, and got through the party. I felt a little guilty at one point when I found myself laughing with his other mothers. 

Am I allowed to be happy when part of my heart is missing?

Today we have another occasion to celebrate. Anna has started medical school and has her white coat ceremony. We’re returning to Washington Heights where we lived that summer of 2007, but this time we’re going to start a new chapter as Anna works towards being Dr. Banana. Again, I’m feeling strange — almost guilty — trying on dresses and making dinner reservations, but what choice do I have?

Life isn’t fair and I can’t really appreciate that it makes sense in any way. But, I will deal with all the ANDs and keep on moving forward. My friend used the word ONWARD a lot this last year.

Nothing I’ve done this week has been without my friend at the top my mind. She was a beautiful person, but she also had a way of calling me on my billshit. The last time we spoke, she held my hand and we reminisced about our long history. I was a mess and she told me I needed to be strong and to remember her with a smile, not tears. I promised her I would, but it might take a little time.

ONWARD!

For now, I will feel sorrow AND joy. As I get ready to watch my daughter receive her white coat, I have tears in my eyes AND a smile on my face. I will wear something fabulous – my friend had impeccable taste and told me that I needed to break up with StichFix or “at least up your budget and go do some real shopping”. Today I will wipe away my tears and cheer on Banana as I sit with family, including my 25 year old son.

ONWARD!

Love you Friend. You are so missed and always will be. I’m trying to be strong but can’t promise there will not be tears — they are sneaking out without much notice. But, behind the tears there are so many wonderful memories and there will always be a smile when I think of you.

ONWARD!

Love, Jess

Photos will follow at a later date. I have limited energy dealing with the ANDs.

16 years

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16 years.

5844 Days.

Two homes. Four dogs. Eight schools. Seven graduations. Many jobs. Trips to Ireland, Cape Cod, Vermont, Charm City, Disney, Massachusetts, Yankee Stadium, Italy, Maine, Block Island, Puerto Rico, Florida, New Mexico, Colorado. We’ve been skiing/tubing, kayaking, surfing, swimming, sailing, and hiking. Many tears. More laughter.

16 years ago Jack had the transplant that saved his life, but before it did it’s magic ALD stole a lot from Jack. It stole a lot from our family. 

For 16 years we’ve done our best to grab back what we could – to live big, bold, bright lives. I think we’ve done a darn good job.

Happy 16th Transplant birthday JackO! Thank you for your guidance and strength for all these years.

And to ALD – F*CK you!!!

Love, Jess

a new routine

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The house is too quiet.

It’s weird not having Booger here.

When is he getting back?

My new work schedule had us needing to adjust Jack’s care. Many of my clients are teens, so I’m working late afternoons/evenings several days a week. After juggling things around, we decided the best idea was for Jack to sleep at his other family’s house on Thursday nights.

Jack loves leaving the house on Thursday mornings knowing his other mother, Maria, will pick him up from his adult program and bring him to her home where he gets to enjoy her wonderful cooking, feeding their chickens and spending time with his other sister, Jamilla. 

Initially, Dan and I were rather excited about having a little taste of an empty nest one day a week. Over the years we’ve watched our peers have freedom that we thought we would never experience.  And, the last few weeks we have enjoyed being able to have spontaneous late dinners out and not being in charge of medication and bathing and diapers on Thursdays, but these Friday mornings are strange. Our boy may not talk, but his energy is loud. 

So, every Friday morning Dan and I have the same conversation. The house is too quiet. It’s weird not having Booger here. When is he getting back?

Last night Anna came home to celebrate Dan’s birthday (HaPpY bIrThDaY Dan!) and her latest medical school acceptances. We were tempted to cancel Jack’s Thursday plan, but he seemed angry when I brought hit up, so he was with his other family last night as the three of us spent time together trying to fill in the gaps of Jack’s laughter. It was a nice night, but he was missed.

As soon as Anna came downstairs this morning she repeated our Friday morning mantra — The house is too quiet. It’s weird not having Booger here. When is he getting back?

I just got off of Facetime with Jack and he was all smiles as Maria filled us in on how they made pizza last night, listened to Jamilla play her guitar and had a big breakfast. He loves his weekly adventures. And Dan and I do like our new routine, but it is going to take us a while to become accustomed to these quiet Friday mornings.

Love, Jess

Ever wonder?

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Ever wonder what life would look like if the worst thing hadn’t happened?

Ever close your eyes and try to picture yourself going through the motions of life as it was supposed to be?

When Jack first got sick, I would wake up each morning forgetting our new reality briefly. Then it would sink in.

That first year, I could easily picture what life would have looked like had Jack not been diagnosed with a disease that within months had left him both medically fragile and fully dependent. Jack would have finished second grade over at the Marshall School. He would have continued playing little league for another year or so (but was probably getting close to breaking the news to Dan that it wasn’t really his sport). Anna would have had hair down to her waist instead of missing that 10 inches that she’d donated to Locks of Love. I would have been dreading those crazy weekends before the holidays when everyone in town NEEDED their family portraits done. And Dan’s job would have been flourishing, knowing all his ducks were in a row at home. 

We also would have taken that trip to Puerto Rico that we had to replace with an extended stay in the hospital.

A couple of years into our new life, I needed to concentrate a little more to get the visual of what life would have looked like if the worst thing hadn’t happened. Even before his disease made a mess in Jack’s brain, he was never into organized sports — certainly not the way kids play sports these days. By middle school, I pictured him being one of those kids with a skateboard in hand and holes in his jeans that were earned, not purchased. His beautiful smile making even the cranky neighbors forgive him for cutting through their lawn and paying music too loud with his buddies. Without being exposed so early to the power of science, Anna may have chosen to focus on her other love — art. She might have had parents who paid a little more attention to her – to her schedule, her needs. I might have given up family portraits to go back to teaching art full time. As a family we might have even gone abroad for a few years taking advantage of a job opportunity for Dan.

Now this fictional story of how life was supposed to be is impossible to imagine. As much as I tried not to let it happen, Jack’s disease has been the center of our lives for 16 years. It has defined our family. Jack didn’t finish his time at the Marshal School, he never returned to little league or rode a skateboard. He didn’t go to college or trade school. Instead, he went to special schools for the multiply disabled, has become accustomed to needing help with everything from eating to toileting, and had to learn how to make that magical smile of his be his only source of communication. 

But things aren’t so bad.

Jack’s in an adult program now where a typical day involves pushing his friend’s wheelchairs, doing simple arts and crafts, being fed by an aide, and laughing. Anna is on her way to medical school in a few short months (her likely focus is reproductive endocrinology – a specialty we’d never known existed before this new life). Dan has enjoyed a wonderful career in finance, but his priorities include having the flexibility to be able to get Jack up in the morning – hearing them in the bathroom listening to 70s on 7 as Dan bathes his only son is how I wake up each morning. And my life is completely a result of the worst thing that ever-happened to us. I’m a writer, an advocate, a therapist – all things that would have been — not just unlikely, but impossible 16 years ago. Impossible without living through the worst thing in our lives.

If I could — I would change our journey. I would trade all this for what life had promised us before the worst thing happened. There is a reason I still call it the worst thing that ever happened. BUT it did happen and it left, not just scars, but the knowledge that we can heal. That we can survive and even thrive. 

So I try to look at our family now without thinking too much about the before and after the worst thing. I try to focus on who we are and what we are doing now. Maybe this is life as it is supposed to be.

Last month our family finally took that trip to Puerto Rico. It may not have been the trip it would have been without the worst thing, but it was beautiful. 

Love, Jess

tHaNkS Team Torrey!!!

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How many people does it take to care for our boy?

A lot.

Day 14 with a broken rib. Although I’m healing, I’m still not able to do much for Jack these days. Showering, changing, toileting, medicating, feeding – none of these things are particularly difficult, but there’s the Jack factor. Jack moves and grabs and hugs – it’s the hugs that scare me most – they’re magical, but I worry they could be dangerous!! 

Some samples of the (potentially dangerous) Jack HUG!!!!!

So, I haven’t been doing much other than watching bad tv, studying for the National Counselors Exam, and counting my blessings that Jack has an amazing team of people who have stepped up to help out.

Dan has taken on the brunt of the responsibilities, but he has a job. Anna is home now for a few days – yahoo (she had offered to come home sooner, but she had a cold – if you’ve ever broken a rib, you will understand that a cold is terrifying). Luckily, Jack also has an arsenal of other mothers, and they’ve been amazing! Maria, Monica, and Lilly have all been keeping Jack entertained, fed and clean. And, we have a new addition – Natalie. We’ve known Nat since she was a tiny thing. She’s one of Anna’s best friends and she’s now a nurse. She offered to bring her skills and hang with our boy as needed. Lucky Jack – lucky us!

So, I continue to sit, watch bad tv, study for the National Counselors Exam, and count my blessings.

Thanks everyone for being me! I look forward to being able to care for our boy again (and enjoy one of Jack’s magical/dangerous hugs), but it sure is nice to know that Jack has a team who is ready, willing and able to help!!!

Love, Jess

where did the tears come from?

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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

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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!!!