Category Archives: this is ALD

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

I Cry — Anticipating a Call on Anticipory Grief

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I know I have the reputation of being positive. I am a “glass half full” person by nature and I can usually find the bright side of any dark situation, but I do cry. I cry a lot. I cry … Continue reading →

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 →

A complicated, painful and beautiful weekend

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It started last Thursday morning with another fall. Who knows if it was ALD or just stupidity. We’re all guilty of doing stuff that we know we shouldn’t, right? 

Dan had Jack in the shower as I was rushing around trying to get ready for the day – making Jack’s breakfast, setting up his morning medication, getting dressed, prepping for my morning clients, and changing the battery on the outdoor Ring camera.

I had a minute before Jack would be done with his shower and I looked around to see what else I could check off my list. You can picture me as I raced to the back yard and was happy to see that there was already a chair sitting right there below the camera mounted on the side of the house. It did occur to me that the chair had been removed from our outdoor table because it was old and unsteady . . . 

I climbed up on the chair and was able to slip in the new batteries before the chair wiggled. I lost my footing, landed on the slate and felt a loud crack. My tail bone hit first followed by my head smashing backwards.

Within an hour I had the results of a CAT scan with a determination that there was no brain bleed but likely would have a concussion. I was told, “Spend the next few days resting. No screens and not too much thinking”.

Not a great weekend to limit my thinking.

Dan and I were heading out the next day to attend the memorial service for a friend I’ve held dear since childhood. I needed to be there. I needed to celebrate her life and be surrounded with her family and old friends. I also needed to be with two of my best friends– the four of us have shared memories from every part of our lives. Mourning with them in person was something I couldn’t miss.

With Dan’s help, after spending as much time as I could in the dark (trying not to think), I got in the car Friday afternoon. I reclined the passenger seat and closed my eyes until we got there. The weather seemed as upset as we were. What should have been a three-hour drive took us six hours.

By the time we made it to our rental we were exhausted but being able to hug my friends (and their wonderful husbands) seemed to make me feel healed.

The next day we arrived at the same chapel where we celebrated our friend’s wedding 20 years ago. It sits just across the street from the home she treasured (and we had all snuck out of at least once). So odd when a place feels so familiar and so foreign at the same time. So many memories, but her bright smile had always been in the center. How can she be gone?

The service was beautiful — Just as she had asked for. Friends and family sharing beautiful words about a beautiful human. Each eulogy seemed to build on the last. All highlighting her incredible strengths. All sharing stories of her kindness and bright smile and her deep love of her two magnificent children. Each also shared her love of the sun and the ocean and her never missing an opportunity to dive in.

Sunday morning, we took a trip to her favorite beach and half the crew dove into the water. 

I did not go into the water. I had a pile of excuses at the ready, but I didn’t really need one. She knew that cold water and stony beach bottoms may not be my thing, but that I dive into life plenty (a gift taught to me by my JackO). I will continue to dive into life with her memory in my heart. I will, however, not stand on any more old chairs.

I felt her presence all weekend long. I’m grateful that my head and body allowed me to be present and now I’m back to being as careful as I can be. 

I have been hesitant to share my friend’s name. I think I’ve been scared that it would make it too real. 

It is real.

Lisabeth Mohlere Harris

Lizmo 

7/31/69 – 8/4/2023

Love, Jess

Thank you Neris for helping us with Jack on Thursday so that I could get medical care. Thank you Dan for being my driver, therapist, and nurse — this weekend and always. Thank you Kater and Bid for being lifelong friends. AND thank you Lizmo for being in my life.

Missing you Lizmo. Trying to remember you with smiles, not tears.

when everything falls into place

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Seven years ago, I got a direct message from someone on Facebook. She explained she was a mom of a boy with ALD and a founding member of the board of an organization called ALD Connect. Apparently, she had just spent her flight to their annual meeting reading Smiles and Duct Tape.

“You need to join the community.”

I remember thinking that it was cool that my book – which had just been published – had landed in ALD hands.

Within a year I was attending conferences and learning more than I ever imagined about the disease that had infiltrated our family. I was speaking at conferences, helping organize a peer mentor program and facilitating monthly community calls.

When I asked myself several years ago what I wanted my next chapter to look like, I knew I wanted to do more of what I was doing within the ALD community. More within the community and more helping others who were struggling with acceptance/anxiety/depression. I reached out to the same woman who had sent me that message all those years ago (by now a dear friend) and asked her to write me a letter of recommendation for graduate school to study counseling for mental health and wellness.

That was three years ago.

Yesterday I had a full day seeing clients ranging from 10-years-old to 92-years-old and ended the day honored to be facilitating ALD Connect’s first session of The Mental Health Community Call.

While I was busy with my new life, Dan was out in the crypto world, Anna was at a Yankee game — celebrating after her first round of medical school exams, and Jack was with his “other family” where he happily spends a least one night a week.

I went to sleep last night doing an exercise that I often recommend to my clients. “As you close your eyes at the end of the day, think of three things that went well today”. I didn’t stop at three and fell asleep with a smile on my face.

It’s easy to recognize when things aren’t going well and important to give value when things do. I’m grateful for this moment where life just seems to make sense. Lord knows there will be other challenges ahead, but it sure feels good right now. 

Thank you Kathleen for sending that note and starting all this AND for the letter of recommendation AND for trusting me to help our community AND for being you!

Love, Jess

ALD folks — join the call next month. It’s a great addition to The ALD Connect community calls!

It Got ME!

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I’ve done a good job of hiding for three and a half years. It’s come close to finding me before, but I’ve managed to keep it at bay. I thought I was still being careful, but I guess I let my guard down. I’m not sure if it snuck into me when we were at the Yankee game last Sunday or maybe it was hiding on the nice young man who was selling solar panels last week. Either way COVID landed and found a temporary home in me last Tuesday.

It started with what seemed like a stomach bug. A blessing really – not just a jumpstart to my fall diet, but the stomach bug is an illness that makes us react quickly (years ago, Jack had one massive seizure and it was triggered by a stomach flu). So, last Tuesday, as soon as my stomach started churning, I raced upstairs and crawled into the guest room where I stayed for days and days. The vomiting turned to a fever and aches which then turned into a runny nose and cough. By Saturday I started venturing down for visits with the family around the pool but I’m still wearing a mask and sleeping upstairs. I’m following every protocol that the CDC has – I don’t want either of my boys getting this gem. My clients are all virtual this week and Jack and Dan have been on their own for meals and dog care and laundry. 

It’s the second time in less than a year that Dan has needed to take over without warning. In October I broke a rib which ended up being a solid eight-week recovery. This won’t be nearly that long, but I can’t express how grateful I am to be married to a guy that doesn’t miss a beat.

Thank you DanO for everything you do. And, JackO I promise that Mom will be back to herself and mask free on Friday!!!

Stay healthy folks!!!

Love, Jess

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.

Special Siblings

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As many of you know, I have a favorite daughter. It’s not just that she shares my love of Anthropologie and Madewell or that it’s fun watching her excel academically.  I’m in awe of her strength and resilience and her ability to know what people around her need — especially her brother.

When Jack first got diagnosed, Anna was six years old. Our family changed overnight. Her life went from an idealic suburban childhood to her family scattering. We were completely focused on Jack – getting him treatment — saving his life. I don’t really remember much about what Anna did that summer. I know she took some classes at a local camp and that friends included her on many fun summer activities. Ivete arrived from Brazil. I’m not even sure how that happened but we will forever be grateful to her.

Sometimes at night while Jack’s hospital room was quiet, my mind would have a moment to think about something other than blood counts and GVHD testing I would wonder how Anna was coping and how all these changes were going to affect her life. Our nurses allowed us to bring Anna into Jack’s isolation room and turned a blind eye when she would spend the night. She and I would order delicious Dominican food, watch High School Musical and fight over my favorite blanket. There were times she would have me hold her tight and whisper questions she was scared to ask.

Dan and I agreed that we needed to be honest with her. She had lost the luxury of innocents. 

And that summer was just the beginning. Jack came home and his life had changed dramatically, and it meant that all of our lives needed to adjust.

I know we should have done more for Anna, but those of you have gone through ALD (or any other complicated medical or emotional issue) diagnosis or treatment or the aftereffects – you know that the needs of the other kids in the family sometimes get lost. 

Anna has thrived in her life and so many of the special siblings I’ve come to know over the years have also been quite remarkable. I’ve wondered what helps them and what can hurt them. I spent much of my time in graduate school researching these special siblings and appreciating that there is so much we can’t control when going through these complicated times BUT there are some things that we as parents/grandparents/friends can do to help these kids.

ALD Connect has recognized the importance of these special siblings and asked Anna and I if we would host a webinar discussing the topic. Once our community discovered we were working on this project, I’ve heard from countless people sharing their stories. Newborn screening families, early diagnosis, late diagnosis, siblings of folks with AMN and siblings of women with our disease. We are doing our best to represent all potential circumstances, but also hope to have time for discussion during the webinar. Time to learn from other families.

Please consider joining the Webinar this Wednesday at 7 pm. I hope this is the first of many.

CLICK HERE to register for the event.

Love, Jess

When one thing leads to another, and another, and another, and another . . .

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You know those memories that pop up on Facebook? For me they’re usually photos of the kids at younger ages or my friends and I acting foolish. I sometimes pause for a second to remember the memory. I often cringe at the thought of me deciding to post something so silly or wonder how on earth I didn’t appreciate my face before it was full of lines. 

Yesterday I paused for a while for a different reason.

8 years ago, I’d posted a video from Listen to Your Mother from 2015. I’d tried out for the production after some persuading from a friend (thanks Brooke). She’d encouraged me to do more to share my words – to share our family’s story. Eight years ago, I’d started to be more confident in my writing, but the idea of standing up and speaking in front of a couple hundred people made my stomach clench. But, I auditioned for the production trying to push myself, feeling comfortable with the fact I would never actually make the cast.

I made the cast and was forced to work through my fear of public speaking. The rest of the cast was extraordinary. Each of their stories were beautiful and many of those folks remain friends today. Listen to Your Mother ended up being a huge part of my life. Not just the five minutes I spoke on that stage, but what those five minutes led to.

Shortly after the production, thanks to the encouragement of another friend (thanks Alice), I started working on Smiles and Duct Tape. Once that was published, I started to connect more with the ALD community (thanks Kathleen). My work within that community focused me more on working with people. One COVID day while hanging out with a friend discussing what I should do with my next chapter, I found myself starting an application to NYU for a MA in Counseling (thanks Monica).

My Linkedin page has my title as mom/writer/speaker/advocate/therapist. All connected. One led to another, led to another, led to another, led to another.

This is not the life I imagined. My heart wishes that Jack did not need to suffer years of discomfort and need to rely on an army of people to care for him. I wish Anna didn’t get introduced to the power of medicine the way she did. I wish Dan didn’t need to carve out time in his work schedule to bathe Jack in the morning. I wish I didn’t need to know the word ADRENOLEUKODYSTROPHY to be provided with a long list of job titles on Linkedin. I wish I didn’t need to dream to hear my son speak. 

But I’ve learned to accept the cards we’ve been dealt.

I talk about acceptance a lot with my clients. I acknowledge that life is often not fair or easy. I allow people to kick and scream and yell at GOD, but then I help them work on focusing on what in their lives is working. I have them find the positive — even if it’s just a tiny morsel tangled up in a mess of darkness. I have yet to find someone who can’t find at least a sliver of light within their lives and many are able to appreciate a pile of positives.

It’s taken time – and not a straight path —  but our family has been able to appreciate our pile of positives. We’re blessed with the fact that Jack survived and is comfortable in the life he’s living. We’re grateful to have the financial recourses to pay for necessities and care and even wonderful vacations. We’re lucky to have found ourselves at Columbia Presbyterian with doctors and nurses who were brave enough to try a treatment that was out of their comfort zone. We’re blessed to live in a state that supports people with disabilities and we’ve had our choice of wonderful schools and adult programs. We’re fortunate to have a circle of other mothers who care for Jack with dignity and love. We’re thankful to have a wonderful extended family who is always there for us. AND we have friends who don’t just help us create foolish Facebook photos, but help guide and encourage us when needed.

Yesterday, as I watched the video of The Talking Dream on Facebook, I had that strange feeling that I’d shared that story a lifetime ago AND that I’d shared it just yesterday. So much has happened in eight years. The kids are both now adults, Dan is now a crypto guy with a beard, and I have a whole lot more on my resume BUT I still have that dream and still wake up hopeful.

Love, Jess