Category Archives: disability

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 →

Proud and Sad — Mostly PROUD

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I got one of those Facebook memories yesterday morning. I almost scrolled by it — there was no picture to capture my attention — but then I glanced at the words.

11 years ago, I was worried (even sad) about Anna. It wasn’t fair that her life had been touched — sometimes torched — by what ALD had done to her brother. BUT I was so proud of her and how she approached her life. 

Although her life was different than most of her peers, she had a pile of extraordinary friends who surrounded her with love and fun and were all amazing to Jack. She was already an exceptional student and athlete. And, even at 12, Anna had an independent streak that presented itself often. If she had a goal, she would make it happen — when she wanted to make some extra money, she found herself babysitting work and even organized (with dear Caroline) a lacrosse camp for some younger kids in town. She was a kid who would paint her own room. I believe middle school were the “Tiffany Blue” years.

But Dan and I DID worry about Anna back them. We would discuss if she was feeling too much pressure to achieve. Was she feeling that she needed to do enough to make up for what Jack couldn’t do? We wondered if her motivation and good attitude would continue.

They did.

I am NOT a believer in “everything happens for a reason” or “Life only gives you what you can handle”. I’ve witnessed too much tragedy to believe that nature is fair or that there is some sort of master plan that makes sense.

What I do believe in is the internal power we all have. The power to make choices. The power to lean into uncomfortable feeling and find hope during dark times. AND – if you’re Anna – you have the power to look a disease that has harmed someone you love and instead of cursing it, work to be a person that helps put an end to it.

Anna is not sure what she will specialize in, and we are NOT pressuring her to work in the ALD space – although we do discuss it . . . often. No matter what she decides to focus on, she will be amazing. We are so proud of our girl. Sometimes we worry (even still get sad), but we are always proud.

Love, Proud. Momo

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

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

Three is Better than One

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Packing for a trip. It’s the first of several coming up and I’m going through the familiar clambering mental list– What to pack? What am I forgetting? If this happens, will we have enough of that?

Unlike my usual day-before-a-trip madness, I’ve realized I’m not particularly stressed out. Perhaps part of it is where we’re headed this weekend — up to Vermont to meet up with family (both my brothers and my beautiful sister-in-law) to see Dead and Co Saturday night at SPAC. It’s hard to combine stress with songs filling the air, but there’s more of an explanation for my relaxed, groovy mood. It’s because there are three of us packing up for this trip.

Three is better than one.

Anna is home for the summer before starting medical school in August. Not only are we all loving her brilliant smile and willingness to listen to our stories and laugh at our jokes, but we’re also loving how helpful she is. She grocery shops and cooks and cleans and organizes and even wallpapered two bathrooms. So today, instead of me scrambling around to buy more diapers, fill Jack’s prescriptions and figure out where we hid our cooler – I just ask Anna.

It was also Anna who decided that we weren’t going to leave Jack behind for this trip. She reminded Dan and I just how much Jack loves music and dancing and any chance to meet new friends who share his love of . . . grilled cheese sandwiches. I’m so excited that the four of us are doing this together. And, with three of us doing the packing and driving and occasional diaper change, this trip will be fun and quite manageable.

Anna has made it clear that her summer of being a “1950s housewife” is getting a little old and that being a doctor seems like a way easier line of work, but until she leaves in August, we are going to enjoy another set of hands at our house.

Thanks Banana. Thanks to you there is nothing left to do but smile, smile, smile.

Love, mom

I want to be clear that we are a family of four and Jack is very much in the center of our circle — it’s just that he is more of the cheerleader than a packer/shopper/organizer/driver.

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