Category Archives: laughter

Meaning, Purpose, Connection

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When I first meet with a client, I always share that creating a healthy life – not a life of rainbows and sunshine, but a life where we struggle less – is creating a life where we have meaning, purpose and connection.

Viktor Frankl, a Holocaust survivor and renowned psychiatrist, said, “Life is never made unbearable by circumstances, but only by lack of meaning and purpose.” I add connection to the list because without connection we’re simply floating solo on this journey.

Meaning is the why behind what we do. It’s the lens through which we view our existence. It represents our priorities and values. Purpose is the how we honor our meaning – it’s the what we do. Purpose gives life structure and motivation, keeping us moving in a positive direction towards our meaning — even during difficult times. Connection is the DUCT TAPE that holds us together. It’s the relationships we build, the communities we nurture, and the experiences that bring us closer to others. Connection allows us to collaborate, support, and celebrate alongside others, reinforcing our sense of belonging. And, our connections often help us to find our meaning and work towards our purpose.

These are some questions to get started:

  • What experiences in your life have you found fulfilling?
  • Which activities or causes make you feel like you are contributing to something bigger than yourself?
  • What are your strengths and passions that can help others or contribute positively to the world?
  • When do you reach out to friends and loved ones, not just when you need something, but simply to connect?
  • What are the communities or groups that share your interests and values?

I just returned from this year’s ALD Connect Annual Meeting and Patient Learning Academy. All weekend I thought about meaning and purpose and connection. I thought about how meaning, purpose and connection have allowed me to survive – even thrive – following the diagnosis.

When you’re facing a complicated diagnosis like ALD, many find themselves caught up with concerns about their health and their future. It’s easy to get lost in a pile of what ifs and the cycle of daily routines, often leaving little time to reflect on what truly matters. We chase test results and tick off checklists, but without understanding what drives us, we risk feeling unfulfilled. Meaning, purpose and connection allow us new insights about what is truly important, gives us direction and motivation and provides us emotional support. It helps us take some power back and pay it forward.

17 ½ years ago ALD shattered our family. It took years to adjust to our new circumstances and appreciate the need for taking control of what we could. We couldn’t change our genes, but we could find meaning. We could move forward towards our purpose, and we could add to our connections. 

I’ve said many times that ALD is a crappy/shitty/terrible disease, but the people are amazing. I want to thank the ALD community for allowing our family to find meaning and purpose and connection. I want to thank the ALD community for helping us struggle less.

Love, Jess

the laughter continues thanks to the (impractical) JOKERS

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We have the most amazing friends. Love and support always, dinners when needed – even offers to walk the dogs (well, not EVERYONE offers to take Finn, but people do fight over Keegan). We’re always astonished by all the love and generosity, but sometimes we’re really blown away.

Our dear friend, Alice, is far cooler than most of us and knows “people”. She shared Jack’s laughter with her buddies at truTV and look what happened.

           

For a boy who hasn’t spoken in almost ten years, it’s amazing how many people he’s able to reach with something as simple as a laugh.

Think about it folks – sometimes a laugh is all it really takes.

Tru TV should be on everyone’s radar. It’s CHANGING lives folks! And, they didn’t just send us these videos, they have invited us to a live show on 11/3 at the Prudential Center. The Jokers and Nitro Circus. Everyone should order tickets now!!

Thank you Alice and Michael and the greatest (impractical) Jokers on the planet!

 

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Love, Jess

PS Please don’t judge my messy desk and Jack is NOT picking his nose. That’s his “I’m really into what I am watching face”.

Poop, shower and shave

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Jack’s school, Horizon High School (HHS), is having their annual fundraiser and I wanted to write a post encouraging everyone to make a donation. My first draft was filled with all the extraordinary experiences offered to the children at HHS. Physical therapy, occupational therapy, speech therapy, a school store, student government, theater, aqua therapy, an outdoor garden. This is all on top of academic subjects (modified versions of Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math).

Horizon High School is amazing for all those reasons, but there is one other reason that not all parents will admit. Horizon High School gives me a break.

I’m always happy when the small white van (no yellow bus for us) arrives, and today when I saw the bus out our front window, I started crying happy tears.

This morning was particularly tough at 26 Clinton Avenue. I knew it would be as soon as I walked into Jack’s room. Even Jack’s brilliant smile couldn’t mask the odor. “Come on JackO! This is gonna require a long shower and some extra cologne.”

If I keep Jack laughing, I have a chance at survival.

Eight years into this new life and I have developed an amazing skill where I can almost shut off my eyesight and sense of smell, so that I can go through motions required to clean up after a messy situation. I can’t even describe this morning’s shower fully, but we went through a half dozen washcloths and I needed to wash the tub when we were finished.

Just as I was getting Jack out of the shower, he surprised us both by peeing on the bathroom floor. One more quick rinse in the shower and I added the floor to my list of cleaning duties. As I got Jack dressed, I glanced at my watch and realized that we had lost valuable minutes and needed to rush through the normal “upstairs routine” in record time – teeth, deodorant, hair brushing. If only I hadn’t told Dan my plan for today. We still had our “downstairs routine” – breakfast, medication, hydration, and those cumbersome leg braces to deal with. And, now I had to shave Jack too. Alone.

I’m not entirely sure why I thought telling Dan that I would shave Jack was going to make the chore disappear. Jack was already in bed when I shared my plan. I couldn’t have expected Dan to wake up his son to shave him. And, I knew the fuzzy hair wasn’t going to evaporate on it’s own. But, it had been over a week since his last shave and Jack was starting to sport a look that was a cross between gangster and homeless. I couldn’t help but mention the need for a shave and that “I guess I will be the one to do it.”

After our “upstairs routine” was over, I helped Jack down the flight of stairs and I fed him, gave him his medication and 12 ounces of water through his g-tube. Then I sat him down on our steps to put on his leg braces and sneakers, already cursing as he did very little to help with the process. Once we were done, I took a deep breath, put Jack in a headlock and took out the electric razor.

As soon as Jack heard the motor, he started wrestling. If anyone had witnessed the scene, I would defiantly have lost my parental rights. He was wiggling and trying to grab my hand as if I was pummeling his face. I did my best to keep him safe and I attacked the beard while yelling one four letter word after another. After about five minutes we were both exhausted and Jack’s face looked better – not great, but better.

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Now, we were ready for the bus. Just an hour since the alarm went off and I was already in need of a nap. Horizon High School to the rescue!

Horizon High School is amazing for so many reasons – it’s individualized curriculums, warm and brilliant staff, beautiful facilities, but sometimes the thing I love most is that it’s a place that Jack can go every day, be safe and loved AND I’M NOT IN CHARGE. I love our boy and can deal with a lot of crap, but sometimes I need a break.

Love, Jess

Please consider supporting our wonderful school.  DONATE TO HORIZON HIGH SCHOOL

 

 

 

Coming home is even better.

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Jack laughs with his whole body. His eyes water, his mouth opens and he utters a hardy chuckle, as his entire soul shakes. It’s one of the few noises our boy produces and the sound melts my heart.

The only time we want to quiet the giggles is when he’s eating. Jack’s laughter is so strong that anything in it’s way gets displaced. Food gets spit out, even through his g-tube (the little hole in his belly used to medicate and hydrate). It’s hard to feed Jack around Nonno, Uncle Matt, Uncle Pat or Ronny V. Those men say a word and Jack is in a frenzy.

Dan and I went away last weekend. Our annual excursion to see our dear friends, the Fitzgeralds. We spent the weekend enjoying the scenery of Maine and catching up with old college friends. Time with people who knew us “before” is critical to our survival. Yes – they ask about the kids and we share photos and stories, but it’s a fraction of the weekend. A relief to just be Jesse and Dan for a few days. In our real life, sometimes our identity gets lost in a pile of medical jargon and politically correct words for “disabled” and “handicapped”. With this crew, most of our chats are about music and memories.

The weekend away had the added benefit of no medication, diapers, or early morning dog duties. So odd waking up with nothing on my mind except a bit of a headache. It was perfection. Great meals and wine, hikes, boat rides and even a tour of Portland (thanks JK). But, when Monday rolled around, we were more than ready to get on the plane, anxious to hear Anna’s stories of the weekend and hear the sweet sound of Jack’s laughter.

We walked into the house on Monday to find Maria (Jack’s sitter/my favorite person EVER) cooking a beautiful dinner and Jack holding court at the island. When Anna heard the door, she flew down the stairs and there were hugs all around. We had dinner as Dan and I told the kids stories about the weekend. Anna loves hearing tales of her parents pretending to be twenty and Jack was so thrilled to have his parents home that anything we said was greeted with a smile. Once we were done eating, it was time for some real laughs. It was so good to be home.

Getting away is wonderful, but coming home is even better.

Love, Jess

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