Tag Archives: love

19 years

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19 years

228 months

6940 days

Nineteen years ago we stood in Room 505 of Columbia Presbyterian’s Morgan Stanley Children’s Hospital watching a bag of donor cells slowly drip into our eight-year-old son’s body. There was no dramatic music (although there was a playlist thanks to Dan). No fireworks. No certainty. Just a team of experts, a frightened family, and a process that somehow felt both incredibly ordinary and impossibly miraculous.

Looking back, I think it may have been the ultimate example of trust and hope.

Trust that the doctors and nurses knew what they were doing. Trust that a stranger’s donated umbilical cord blood cells could find their way to where they needed to go. Trust that this terrifying journey would lead us back to the future that we had always expected.

And there was hope in Room 505 — so much hope.

At the time, I thought we were hoping Jack would get back to the life we had imagined for him before ALD entered the picture. I thought we were hoping things would return to normal – normal meaning typical – what we had known. Nineteen years later, I understand that wasn’t really what we were hoping for at all. What we were truly hoping for was that Jack would survive. That he would experience joy, friendship, laughter, purpose, and love. That he would know he belonged. That he would have more birthdays.

And he has.

Jack’s life may not be the life we once imagined. There are challenges we never anticipated. Piles of medications we still can’t pronounce. There are losses and limitations that ALD brought into our family’s story. But somewhere along the way, we stopped measuring Jack’s life against the life we expected him to have. And, we started appreciating that his life might be different, but that it is wonderful. We learned to sit with reality instead of fighting it. We learned to accept – and that acceptance is not giving up. Acceptance is making room for what is true.

And once we did that, something incredible happened.

We started to be able to enjoy Jack’s life. Not the imaginary version. Not the alternate timeline. His actual life. The one filled with hockey games, family vacations, inside jokes, stubborn determination, and countless moments that make us smile. The life that has brought us friendships we never would have found otherwise, careers we never considered, and an appreciation that a beautiful life may include g-tubes and diapers. It is a life that continues to teach us about resilience, gratitude, and the power of community.

Today, after having a nice morning of TV and yard work, Jack and I sat in the back yard eating lunch. We called Anna on FaceTime and sat for a while making each other laugh. Dan finished his yard work and joined us. I filled him in on what Jack had for lunch, how much liquid he had through his g-tube, and the large poop he’d taken on the toilet. We all cheered! This is our life and we wouldn’t trade it.

Nineteen years ago, as those donor cells entered Jack’s body, we didn’t know where our story would lead. We only knew we had to trust and hope. Today, nineteen years later, I’m grateful for the trust and hope that helped us survive AND I’m also grateful for every poop that lands in the toilet.

Happy Transplant Birthday, JackO! Thank you for showing us that a good life doesn’t have to look the way we expected to be beautiful.

Love, Jess

ALD Connect . . . ions

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There are many things I expected to discuss when we became part of the ALD community nearly two decades ago.

Bone marrow transplants? Sure.
MRI results? Absolutely.
Adrenal insufficiency? Unfortunately, yes. Sharing stories with a screen full of people about peeing myself in public? That one was not on my bingo card.

And yet there I was, with a bunch of ALD folks on the last ALD Connect mental health call — sharing stories, sharing tricks to masking pee stains, and in some cases — laughing with everyone until we all considered whether a quick trip to the bathroom might be wise.

It was perfect.

Not because urinary incontinence is glamorous (spoiler alert: it’s not), but because there’s something incredibly healing about being with people who truly get it. The ALD community has a remarkable ability to turn even the hardest, most awkward, most human experiences into moments of connection.

Nobody had to pretend. Nobody had to be cool. Nobody had to hide the realities of living in bodies that sometimes do unexpected things.

Instead, we laughed.

And beneath the humor was something deeper — safety. That’s exactly what this community has been for our family over the years – a safe place. ALD is heavy. There’s no way around that. But somehow, together, we are able to create spaces where we can all breathe a little easier, laugh a little louder, and feel a little less alone. In the last few months this ALD Mental Health call has included topics like Laughing Through the Leaks, In the Bowels of ALD, Carrying the Invisible Weight of ALD: Fear, Guilt and Resentment, Allowing Anger, Boundaries During the Holidays – Protecting Your Peace — all important topics, all raw topics and all difficult to discuss without feeling safe.

And now ALD Connect is encouraging more ALD connections — opportunities for people in the community to gather in person, share stories, and simply spend time together outside of hospitals, conferences, and Zoom screens.

Grab a sun hat, a bathing suit, and your fav summer shirt and join JackO for some summer fun!

Our family is excited to host one of those gatherings at our home on June 20th.

We would love for ALD folks who live in or near NJ to join us for an afternoon around our pool — eating food, sharing stories, relaxing, and yes, probably laughing harder than our bladders can handle.  Whether you’re a newborn screening family or a family with a beautiful boy with CALD or someone who has lost a loved one to ALD/AMN or a man or woman with ALD/AMN – all ALD folks are welcome!!! And, our house is comfortably accessible for any who may have mobility issues.

No perfection required — just people showing up exactly as they are. Which, in my experience, is where community begins.

Love, Jess

At the end of the mental health call, we always share a guided meditation. Here’s a bit from this month’s script:

Because community is not built through perfection. It’s built through honesty. Through vulnerability. Through laughter… Life is heavy sometimes, but laughter lightens the load. And community reminds us that we never need to carry it alone.

A Shi##y Call

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Most of the time …

I was scrambling yesterday afternoon. I got home from work and had one hour to make dinner, feed Tupelo, feed and medicate Jack and get ready for an ALD Connect call. 40 minutes in I felt like a rock star. Jack and I were eating diecious chicken thighs, egg noodles and even some salad. I was almost relaxed as I left Jack in front of CNN for a minute as I went to put a brush through my hair, but when I walked back into the room Jack was in tears. While lately I too find myself crying while watching the news, this was different. His tears were primal. I looked at the TV screen and there it was – a St Jude’s commercial — it gets him every time. I got Jack up off his stool to give him a hug while I reminded him that those kids are all getting the help they need thanks to science and the generous donations of people like us;-). That is when I noticed that Jack hadn’t just let go of emotion — he had a massive poop in his pants.

I had exactly five minute to get him cleaned up before the start of the call. We were out of wipes which were quickly replaced by wet paper towels and his clothes all landed in the laundry because somehow his diapers (he wears two at a time) hadn’t managed to complete their job. I did a quick clean of the bathroom, sat Jack in front of his show – not CNN – and quickly sent Dan a note explaining why Jack was just wearing diapers and that he could use a shower before bedtime. Then I took a deep breath and sat down to facilitate ALD Connect’s monthly Stuctured Mental Health Call. This month’s topic was In the Bowels of ALD.

If the story above made you cringe, you would not have enjoyed the call. If the story made you laugh and think of some stories of your own, then perhaps you or someone you love has ALD (or another fabulous condition that has glamorous symptoms like fecal incontinence).

I can’t share much from last night’s call, but it was incredible. Some folks gave valuable advice of things that have helped their smelliest of symptoms. Some people shared what they keep on hand when heading out in public. And some people shared their best poop story. The chat was on fire with all sort of added information and everyone on screen was frantically nodding their heads and encouraging each other. And, we all laughed. We laughed a lot.

I left the call as I always do — feeling grateful to have a community where I feel safe. Safe enough to be completely myself. Safe enough to share my fears. AND safe enough to share a shitty story.

I end each of these calls with brief guided meditation. 

Letting Go of the Embarrassment

Take a moment to get comfortable.
Let your body settle… feet grounded… shoulders soft.

Gently close your eyes, if that feels okay.

Take a slow breath in through your nose…
and exhale through your mouth.

Again… in…
and out.

Now bring to mind a moment of embarrassment.
Maybe something small… or maybe something that still makes you cringe a little.

And if it happens to be one of those moments…
a very human, very real, body-related moment…
you’re in the right place.

Just notice what comes up.

Where do you feel it in your body?
Maybe in your chest… your stomach… your face.

You don’t need to push it away.

Just notice… and breathe.

Now gently remind yourself:

“I am human.”

Bodies do what bodies do.
They are not always neat or predictable or convenient.

And every single person you know—every single one—
has had moments like this.

You are not alone in this.

Imagine placing that moment in front of you,
like a small object you’ve been holding tightly.

Notice how much energy it takes to hold onto it.

And now… imagine loosening your grip.

You don’t have to throw it away.
You’re just holding it more lightly.

See if you can add a touch of kindness…
maybe even a hint of humor.

A soft voice inside that says:

“Of course that happened. I’m human.”

Maybe even:

“This is part of our disease but it’s also part of being alive.”

Take another slow breath in…
and out.

Let the tightness soften just a little.

Let the story become less heavy.

You are allowed to be imperfect.
You are allowed to have a body.
You are allowed to let this go.

When you’re ready, bring your awareness back to the room…
your breath… your body.

And carry with you a little more ease…
a little more compassion…
and maybe even a small smile.

You’re doing just fine.

Whether you have ALD or not, you have moments that you may not want to share on a zoom call. BUT if you have ALD, you have a community who is here for you to hear your story – and laugh with you.

ALD = Shi##y Disease + Great People

Love, Jess

ALD Stinks

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Let’s just say it out loud.

ALD stinks.

Not just in the big, life-altering, soul-stretching ways, but also in the very real, very human, very messy, very smelly, very unglamorous ways.

Yes… I’m talking about poop.

If you love someone with ALD — or live with it yourself — you have a poop story. Actually, you probably have many. Stories that make you cringe. The kind you never imagined would become part of your arsenal of cocktail-party stories.

But last month at the ALD Alliance conference, something amazing happened.

At dinner one night, a few of us started sharing our poop stories. The stories continued the next day around the conference and then when we went for drinks and ax throwing (ALD Alliance knows how to plan a fantastic event;-)).

As we shared our stories, instead of embarrassment… there was laughter. Real, deep, can’t-catch-your-breath laughter. The kind that only happens when you’re with people who get it. No explaining. No apologizing. In fact, we were all kind of trying to one up each other.

Telling these stories is not just about telling these stories. Telling these stories allows us to own them. Allows us to stop hiding and appreciate that there should NOT be shame in battling things we can’t control. Finding community that is there to listen and who understands is a gift. AND if we can laugh together, then it’s more than finding glitter in a pile of shit –- it’s proving that we are stronger than our symptoms.

I won’t share any of Jack’s or my personal stories here, but let’s just say that Jack has left gifts at such remarkable places as The Boboli Gardens in Florence and in the parking lot at SPAC following a wonderful Dead and Co show AND I travel everywhere I go with a roll of toilet paper. My family knows when I say the words, “I need to go”, it doesn’t mean let’s make a stop at the rest area five miles ahead. 

As we were trying to come up with the next topic for ALD Connect’s Structured Mental Health call, I thought, let’s dive in and share some poop stories. It may provide people some great advice and treatments AND I know it will also provide us all with a safe space to share AND to laugh together.

Our friends Ken and Christie of ALD No Limits – who each may or not have some stories themselves – are talking about doing a poop episode on their podcast. Can’t wait to hear that one, but for now we will do it a little more privately. The call will not be taped so ALD folks – think of your best I cant’ believe this actually happened story and come join the fun.

The call In the Bowels of ALD is Thursday, April 16th at 7 pm EST. 

Let’s take the shame out of things we can’t control and let’s turn embarrassment into laughter.

I’ve said it before and I’ll say it again — ALD — shitty disease/great people!!!!!!!!!

Love, Jess

AND I know that many of you non-ALD folks have stories of your own … after all, everyone poops. I think the world would be a little better if we all shared that sometimes our bodies have minds of their own.

ALD No Limits

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Mymom and I were recently interviewed by friends and fellow ALD folks, Ken and Christie, for ALD No Limits, and I can confirm: speaking about ALD feels great, but it’s a little distracting when the whole time you’re wondering, “Is it strange that my mother and I have the same haircut?”

But in all seriousness, what Ken and Christie are doing by sharing these stories is incredible.

ALD is complicated. It is medical and emotional and genetic and generational and can be different for every person/family. For our family it is motherhood and frustration and pain and fear and celebration and advocacy all wrapped into one long story. And getting to sit beside Mymom — we are two women connected by more than just DNA — and talk about what this journey felt powerful.

It felt honest.

It felt a little vulnerable.

It felt like we were connecting with community.

I know most of you many know our story, but if you’ve ever wondered what living with ALD looks like across generations… if you’ve ever wanted to understand the human side of this diagnosis… if you’ve ever needed proof that you can carry something heavy and still laugh — I hope you’ll watch.

ALD No Limits

You will see:

  • A mother and daughter trying not to talk over each other.
  • A mother and daughter who share a haircut and ALD and a love for JackO.
  • A few earnest moments.
  • A lot of heart.
  • At least one facial expression I didn’t rehearse.

Most importantly, you’ll see why sharing your story is important. 

Community is not optional in rare disease. It is survival. It is education. It is connection. It is the life vest when the waters feel rough. Thank you Ken and Christie for creating this incredible platform and for inviting Mymom and I to participate!

If the video moves you — even a little — please consider supporting ALD Connect. Your donation funds necessary research, helps families find answers, find each other, and find steadier ground.

DONATE HERE

Watch. Share. Donate.
And maybe forgive my camera face. 😉

Love,
Jess

Summer 2025 — Birthdays, Travel, Words and AI

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I sat down yesterday to write a post about our summer. I was stuck. I kept getting started but the words just didn’t seem to flow. On a whim I asked ChatGPT if they knew the blog Smiles and Duct … Continue reading →

Trust, Trips, Texts and Dance Lessons

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Jack goes to a day program three days a week. Each evening following these days, I face the backpack. The backpack is a mystery box. It often contains soiled clothing (glamorous), an art project, and a note from his classroom … Continue reading →

MAX 5/15/2021-2/6/2025

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We adopted Max just three years ago. He had been fostered by a lovely Maplewood family. We went to their house to meet him and there was something about Max’s big ears and crooked smile that made us fall in … Continue reading →

How many years?

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This morning I sat down at the computer to write. Not a progress note or a treatment plan or a worksheet to help folks introduce mindfulness into their lives. I sat down to write a post on this blog to … Continue reading →