Category Archives: disability

A complicated, painful and beautiful weekend

Posted on by

0

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

Posted on by

0

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!

Posted on by

1

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 . . .

Posted on by

1

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

Posted on by

0

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

Posted on by

1

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

Full Circle

Posted on by

0

Yesterday was the anniversary of receiving Jack’s ALD diagnosis. 16 years since we heard the word Adrenoleukodystrophy for the first time. We were in a small room behind the nurse’s station on the 6th floor of Morgan Stanley Children’s Hospital at NewYork-Presbyterian Columbia. The room was filled with people as Dan and I sat on a small sofa trying to take in the news that Jack’s symptoms were a result of Adrenoleukodystrophy. That Jack may die. That he needed a horrible treatment if we wanted any hope of saving him. That our lives had changed forever.

Later that day, I was taking a walk to clear my head and I saw a sign — AMAZING THINGS ARE HAPPENING HERE.  All I could think was – there better F$%^ING be!

AMAZING THINGS ARE HAPPENING HERE is an ad campaign that continues at NewYork-Presbyterian Columbia. Every time I see it, I take a breath and nod my head. Amazing things are happening behind their walls. Lives are being saved, new treatments are being used, and doctors are being trained.

We learned that NewYork-Presbyterian Columbia was a teaching hospital when a month into our stay there, a pile of young faces marched into our room to meet Jack. We’d been asked if it was okay for a few medical students to stop by with their instructor. They wanted to learn more about ALD. We agreed and, later that day during my nightly call with Anna, I shared how cool it was to watch soon-to-be-doctors learn about our disease.

Anna soaked in the story. She was already thinking that being a doctor was in her future.

For 16 years, Anna’s determination to be a doctor has been incredible to witness. Her brain allowed her to excel in many subjects, but she chose to focus on the sciences. She could have gone to any college, but she chose Johns Hopkins University knowing it was the top pre-med program. She could have made some extra money working as a server or a bartender, but she instead spent countless hours working for extraordinary doctors and researchers. She studied hard, graduated in just six semesters, and nailed the MCAT exam with a top score. Although she reminded us often that there was no guarantee (even with her great resume) that she would be admitted to any medical school, she got offers at many top schools.

The last offer she received was the offer she had been dreaming of since 2007.

Anna will be attending Columbia University Vagelos College of Physicians and Surgeons!

Our family has always tried to focus less on her accomplishments and more on who Anna is in her core — a beautiful human who is kind and empathetic and knows how to get us all laughing when we need it — but today we want to focus on this incredible accomplishment!

Anna — We are so proud of who you are as a human and all the beauty add to the world. AND we are super proud of your determination and hard work and brilliant mind. YOU are going to do amazing things!

AMAZING THINGS are indeed HAPPENING!!!!!!

Love, Jess

Ever wonder?

Posted on by

5

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

It’s not easy bein’ BLUE

Posted on by

0

It’s not that easy bein’ green
Having to spend each day
The color of the leaves
When I think it could be nicer
Bein’ red or yellow or gold
Or something much more colorful like that

Kermit the Frog

It’s not easy being BLUE either.

ALD makes a lot of people in our community blue. It’s a disease that effects 1/17,000 people worldwide and causes symptoms including adrenal insufficiency, loss of vision and hearing, learning disabilities, seizures, loss of speech, fatigue, bladder and bowel issues, loss of mobility, and if not treated early (** and without a certain amount of luck) can lead to death.

While there’s so much to make us all blue, there is reason for our community to celebrate.  ALD is a disease that has made some HUGE strides in the last few decades – improved treatments, new treatments, and newborn screening. The momentum is has started and we can’t let it slow down.

A year ago, my friend – and ALD warrior, Janis Sherwood, – had a magical idea. We always discuss possible ways of how the ALD community can better spread the word about our disease. Blue being the color connected to leukodystrophy awareness, Janis’s plan was — ALD Makes Me Blue. She wanted to turn our ALD blues into ALD BLUE — Dye our hair BLUE, paint our nails BLUE, wear BLUE, paint our whole darn bodies BLUE. She wanted our community to turn BLUE and then pass it on, like a dare. 

Janis didn’t stop there with her plan. She wanted to have a way for the public to learn more about ALD and even make a small (or HUGE) donation to one of the many ALD organizations.

ALD organizations connected. A website was created. ALDMMB got itself onto social media. Some sore of fancy filter was put on Instagram: https://www.instagram.com/ar/538958721328767/

Today is the day!!!

February is Rare Disease Month and it’s time to turn the world BLUE!! Our family is going to start our month of BLUE and we want you – our duct tape – to do the same. Make yourself BLUE and don’t forget to take a photo and post it on Facebook and/or Instagram and TAG friends!!! 

Please take a peek at the site, learn more about ALD, be BLUE, and make a donation.

CLICK HERE — ALD MAKES ME BLUE

GO BLUE!!!

Love, Jess

packing up

Posted on by

1

Craving sun and time just the four of us, we’re heading to Puerto Rico tomorrow for a long weekend. The timing is a little wacky with the start of my new job, but it was planned months ago. Thank goodness for a flexible boss.

I’ve spent every free moment this week preparing for the trip. Making sure we’re all set for our friend to care for the house and the doggies, making sure my fingers and toes are fresh and pretty, picking up sunscreen and travel shampoos, and packing. Packing for a trip is complicated for our family. It’s not just clothes and toiletries, it’s the diapers and medications and pee mattes. It’s the thinking of all the what ifs and making sure we’re ready for anything that might come up. Five days away has somehow created five large suitcases. 

Still – I feel like I’m forgetting something.

We’ve taken big trips with Jack in the past, but it’s been a few years since we’ve flown anywhere with him. We’re lucky (and grateful) to have one set of grandparents with a lovely home just an hour away in Tuxedo Park, NY and another set with a beautiful place in Block Island, RI. Loading up for those trips is a challenge, but there’s no need to worry about a forgotten item or two. There are local stores and Amazon delivers quickly. For this trip we want to make sure we don’t forget a thing. AND then there’s the other lingering concerns – like potential winter weather and getting Jack on and off airplanes without any incidents!!

Crossing our fingers for no poops at 36,000 feet!

Traveling with Jack is not easy, but what great things in life ARE EASY??? There may be a poop emergency along the way or perhaps an extra stop or two for some hydration through his g-tube, but there will also be long, magical walks along the beach where Jack’s mindful pace allows us to relax and really enjoy the view. We’ll get to spend time with Anna and hear all about her gap year escapades. We’ll get to watch Jack’s expression as he tries new foods and witness him charm the locals.

No matter where we are, Jack seems to gain more fans. 

Time with our family of four is always filled with adventure and laughter. Add sand, delicious food and the smell of sunscreen — and we’re all set. I promise to share photos when we get back.

Love, Jess

We’ve rented a lovely little home right on the water. Although the views and beautiful little pool for JackO were selling points — it was the washer / dryer that really sold us. Life with Jack is beautiful, and often a little messy.