Tiny Tim?

Mia and Noah at Universal Studios

For the last ten years or so, we’ve been blessed to be able to spend a couple of weeks in Cortez, Florida over Christmas. My brother Michael and I use to visit for a month every summer with our grandparents in Sarasota. The trips always feel very nostalgic. My uncle lives there, Mom flies down and we are able to eat, fish and make memories at the ‘Mullet House.’

Malia has always been a huge Harry Potter fan, so one year we promised to take her and Noah to Universal Studios. Joe and I prefer a quiet beach over tourist traps, so Noahs never really experienced anything like the Magic Kingdom!

We started at the entrance, and as any parent of a special needs child knows, you get a ‘cut to the front of the line’ pass. We had a plan of dividing our time between Noah’s two loves: Transformers and dinosaurs and Malia’s obsession.

It just so happened that Bumblebee was walking around patrolling the perimeter. He came up to Noah, who was blown away by seeing his seven foot tall hero in action. He was giddy when the Deceptacon arrived on the scene to do battle. Watching life through Noah’s eyes is always so refreshing. He gets swept up into the story and is absorbed in every detail. It’s contagious!

We witnessed parades, stegosaurus coming to life, Hogwart’s Castle and a dragon breathing real fire! When we stopped for lunch, Noah declared that he was too tired to walk anymore. Joe looked at me and shook his head. There was no way he was going to carry Noah on his shoulders on a sunny day in Florida. Joe sweats…a lot! Noah was pushing a hundred pounds…I couldn’t carry him! Malia, started to panic thinking that we would have to leave. Finally I decided I would go back to guest relations and ask for a wheelchair! Problem solved.

Noah was beyond content. He was able to see the park without exerting the least bit of effort. He had a drink, a snack, and his windbreaker covering his legs…life was good.

We watched men on stilts and followed the crowd to a alleyway. We came out on the streets of New York City? There was a huge crowd surrounding a waitress who was singing the blues. The crowd looked at poor Noah in his wheelchair and began to part so that he could see the stage. Joe and I sheepishly pushed his chariot wheelchair close to the action.

Mable, the waitress and Jazz the sax player were unbelievable. The crowd was clapping and singing along, it was a great break from Bumblebee and the rides.

No sooner did Mabel finish her song when a police car drove up Delancey Street. Out of the Bluesmobile came Jake and Elwood—wearing their trademark black suits, porkpie hats, and dark shades. Gimme Some Lovin started playing and the crowd went wild. The Blues Brothers started shimming around and everyone was dancing and twisting.

All of a sudden, Noah threw off the windbreaker from his legs, jumped down in front of the stage and started cutting loose. People began pointing, they whispered to one another. Everyone was looking from Noah’s dancing legs to us. Were they witnessing a miracle?

Just as I was about to grab Noah, Joe and the wheelchair…Jake jumped from the stage and started dancing with Malia and Noah. The crowd’s attention was on the stars, so Joe and I slinked to the back row.

From behind everyone we could still see a few people pointing to Noah and his very capable legs and pantomime pushing a wheelchair…

After the song, Noah pushed through the crowd, grabbed his drink from my hand and jumped back into his chariot and covered his legs.

We waved goodbye to ‘the boys’ and left the Big Apple. Noah wanted to visit the Transformers….again…

It’s funny, after almost a decade, the thing I remember most about our Universal trip is the street party with Jake, Elwood!

Word of the Year

New Years Eve Cortez, Florida

It’s the end of 2022, I’m hoping to finish softly. For the past decade or so I God has chosen a word of the year for me. Some years, the word comes fast and furious, I’m looking at you overcomer.

As I am debating on what word to choose, the phrase ‘Begin Again’ keeps coming to me. What am I beginning, again?

I know not to dig too hard or question too much. Things are always revealed in due time. As I was climbing into bed tonight, thinking about my word, I realized with a start, that my word last year was adventure! I even got a bracelet stamped with the word on it.

Adventure….Noahscaping Adventure! When I finally landed on the word NYE 2021, I was envisioning a year of shark fishing, ceynote exploring, manatee petting escapades. While that was a part of last year’s legacy, adventure has manifested itself in a much more personal way.

Without consciously thinking of my word of the year, I stepped out in faith and began writing about my perspective on life with Noah. Having three adult children, their story is just that, theirs. Opening up to strangers, family and friends, this guarded part of my heart, has been hard. Vulnerability has never been my strong suit. Essentially, I’m learning about myself through writing.


For years I taught Malia and her friends high school English. One year I was challenging them to choose a word to reflect their heart for the upcoming year. In the class I began showing them how powerful words were. I had them write on separate pieces of paper the name of their favorite food, show, friend and the name of their mother. We went through each category and as they revealed the answer to the question, I had them crunch the paper up and throw it into the fireplace.

Food: pizza, tacos, sushi…read and then torched. Shows: The Office, Adventure Time, Dr. Who, again burned. Then we read the names of our mother’s. When it came time to burn the papers, no one could do it. Why? Words are powerful.

Whether we like to believe it or not, our subconscious mind is the driver of our decision-making and action-taking.The brain is constantly looking to solve the problem, fill the void. So when we choose our word, or it is given to us in neon flashing lights, pay attention!! Commit to it.

Resolutions are great, but they are often confining, we set ourselves up to fail. A word of the year allows for fluidity.

If you are having trouble narrowing down your word, here are some ideas:

  • What could I use more of in my life?
  • What could I use less of in my life?
  • What characteristics would I like to have?
  • By the end of the day, I feel (fill in the blank).
  • How do I want to feel?

The most beautiful part of choosing a word is there is no mistake! Perhaps it will take you a whole year as it has taken me to discover the why behind the word. Keep pressing in, it will become apparent.

As we entered into the last week of 2022 my new word was already working it’s way into my vernacular. Sicknesses, hospitalizations, old traumas resurfacing, had left me feeling shaky and emotional. Each day mistakes were made, things were said…and through it all, begin again kept swirling around in my head.

Apologize, and begin again. Make the call, and begin again. Prepare the soup, and begin again. For a just (wo)man falls six but rises seven, Proverbs 24:16. The older I get, the more I realize that failing isn’t the problem, I’m going to fail. It’s the not trying.

It’s impossible to get through life without having your heart broken. Marriages end, friendship fade, we grow older and more feeble, kids grow up…and we begin again.

Abraham Lincoln said, “Success is going from failure to failure without losing your enthusiasm.” If you read my post, The Wedding you know Abe and I have a life connection so anything he says I take as gospel truth.

May we be surprised by joy and steadied by peace. May we trust in the dark what we know to be true in the Light, and may we never stop watching for redemption. May we dare to laugh, long and loud. May we rest without prerequisites. May we learn to build altars in the ruins and may we always find a hand reaching out when all falls apart. -Kaitlyn Bouchillion

I’d love to know if you choose a word of the year. If so, what is it? Please share in the comments.

Did someone say cheese?

Soon after Christmas we settled into wintertime in Delaware. as anyone who has lived here for any length of time knows, it’s a crap shoot. We can go years with just an inch or two of snow or have so much snow roofs collapse and we are snowed in for days.

Our farm has a very long driveway, the property is shaped like an axe, with the drive being the handle. Woods surround both sides. It winds between mounds of daylily, hence the name Daylily Farm. Up the drive about a quarter mile you see my house on the left. If you continue on the path, it veers around and Mom’s house sits in front of one of two pastures with ponds.

This particular winter was brutal. We seemed to have had an unusual amount of snow and bad weather. January is a notoriously bad month for homeschooling, monotony sets in and the kids are coming back from Christmas break. The weather channel was predicting a snow storm that could produce record amount of snow. Joe and the kids were beyond excited. Whenever there was a couple inches on the ground, he tied the sleds and snowboards to the back of the tractor and raced down the drive with the kids falling being pulled behind.

The days are spent with one eye on their studies, one eye on the weather. We woke up to a winter wonderland. The trees were sparkling with fresh snow. Our four horses were delighted and were galloping through the snow drifts. It was breathtakingly beautiful.

The big kids suit up, while I bundled up Noah. Joe revved up the John Deere and attached the sleds. Everyone was waiting on Noah, who couldn’t remember ever seeing so much snow. I opened the door to the deck and placed him on top of the snow, and he fell face first into the pile unable to move his arms or legs.

They were finally all on a tube, sled, trash can lid or snowboard. Everything that was not tied down is fair game for sledding. Marley built snow mounds over the picnic table and practiced his twists and turns on his board. Days seemed to go by and the snow was still as beautiful and deep. We had no idea what was going on in the outside world. Our farm is so far off the beaten track, our roads are among the last to be plowed.

Joe went back to work. Life still revolved around the snow. Wet gloves, snow pants, and hats were everywhere! The woodstove was running continuously. Mom called mid day with a slight edge of panic to her voice. They were dangerously low on propane. She called for a delivery but the would not come unless the driveway was clear. Even with Joe and the kids going up and down the drive a zillion times, there was no way a delivery truck was going to make it to deliver the fuel.

Mom and I are modern day Lucy and Ethel. We have gotten ourselves into and out of so many zany capers. When Ethel a.k.a Mom gets ramped up, it doesn’t take long for me to join in the hysterics. I call Ricky Joe and start screaming! The winter wonderland is not so wonderful anymore. Mom and I decided if the heat runs out they would come over here, and we will just have to make the best of it.

No sooner were the words out of my mouth when I saw my husband coming up the driveway spraying liquid out of the hose of his truck! You know you’re a redneck when….

Every Tuesday Joe emptied the cheese waste from a little shop in town. I guess it is steaming hot and right around the corner! It was a sight to behold. Joe driving this huge truck down the winding driveway melting the colossal amount of snow with this gray concoction! I am both horrified and thankful.

He got to our entrance, tooted his horn, waved and drove to his next job. My hero?! Mom got her propane in the nick of time, crisis avoided for now. The driveway now a grey sludgy mess, no longer held the appeal it did earlier in the week. Studies resumed. To honor my hero, I made fondue for dinner!

A Beloved Christmas Classic?

The infamous train ride

Christmas Eve with all its talent show shenanigans was always at Mom’s house. I had the privilege of hosting Jesus’s birthday breakfast at my home. We would begin the morning with cinnamon rolls shaped like a Christmas tree and sing Happy Birthday to our Savior. After that the presents and mayhem would begin.

Stockings, even to this day have always been my kids favorite. It was a good transition for us to sort gifts, grab our coffees and get settled. We tried to do round robin, where we took turns ooohing and ahhhing as each person opened their presents, but it never worked. Noah tore into each gift like a bulldozer. Chris, my step-father’s OCD kicked in and he would try to match Noah’s unwrapping with equal parts clean up.

This particular year Noah was not enjoying the season as he usually had. Every time I brought out decorations, he would hide and shake. We would ask what was wrong, but he didn’t have the ability to communicate what was troubling him. We had mechanical deer we would put out by our side yard each winter. We would string lights along the fence and around the arbor and the deer would light up and move their heads up and down. In Christmas’ past Noah had tried to put the leash on them and take them for a walk. Sometimes he would try to feed them dog food. However this year, he had an absolute meltdown! He screamed and cried until we finally put them away. What in the world was wrong? No one in the family could get to the bottom of Noah’s aversion to the deer and the decorations.

The week before Christmas we joined the Down Syndrome Community-and took a holiday train ride through Hockessin. All the homes were lit up, carols were being sung. It was a picturesque night! Noah was subdued but wearily watching everyone at a safe distance. As we rounded the corner everyone started clapping and whistling, there on the side of the track, was a house with a zillion lights. It was an absolute feast for the eyes. It had inflatables, Santa and all his reindeer…I inhaled ready for a meltdown…..it never came. Hmmmm, maybe we had moved past the hysteric festival phase?

The thing about the Western Railroad is, on the ride out you get to view one side of the tracks. When they come to Mt. Cuba, the caboose becomes the engine and you switch seats to see the other side. Santa came through the cars handing out candy canes, Noah waved cautiously to him. Joe and I locked eyes, congratulating each other. Noah and Malia were looking out the window as we were almost to the end, when Noah out of the blue, started his Christmas Meltdown, but this time it was a level 1,000! Thankfully the Down Syndrome community was very understanding and parents gave us encouraging glances instead of condemning glares.

We hurried off the train, as soon as it stopped. What in the world happened? Malia, our special needs expert, started to recall the events that led up to his hysterics. She told us the house had cartoon cutouts of the figures from Rudolph. Weird, Noah had never seen that movie. Why would he be afraid of a cartoon cutouts?

The next day, Stacey and her kids came to exchange presents with my kids. I started telling her about the train ride and Noah’s outburst. All of a sudden her son Alex, chimed in….”Noah doesn’t like Rudolph!”

After asking Alex for an explanation, he told us that he was Noah’s buddy at Embrace Ministry. For the December respite, they played the reindeer classic. When it got to the part of the abominable snowman Noah freaked out!

Light bulb! So that explains the sudden fear of the deer. The cartoon cutouts had the yeti right by the tracks! Thanks to Alex the mystery was finally solved. To this day if Rudolph the Red Nosed Reindeer plays on the radio or in a store, Noah covers his ears and cringes.

As we opened our presents that minimally decorated Christmas, ( thanks, Bumble) Noah’s one request was to get a tool belt, just like Daddy’s. We found a cute little leather one with mini tools, a hard hat and rainbow suspenders. Noah wanted to put on an encore from the previous nights show. He went into our bedroom to put on his fixer gear. We all were eating and drinking waiting for Noah to appear. All of a sudden, Noah strides into the room completely naked sans suspenders and tool belt!

Now that would have been a winner at our family talent show for sure! 😳

Devil In Disguise?

Christmas Talent Show Trophy

Sometime within Noah’s first few years, we began having a family talent show on Christmas Eve. Anyone who came to dinner had to participate in the festivities. For a family that had little to no actual skill, you can imagine what we came up with. As the 24th of December loomed closer, it was all we talked about. Who would perform what with whom. Since performing was a prerequisite for eating, everyone begrudgingly brainstormed.

Ingenuity would be required for three of our family members…Gram, P-Pop and Noah. Mom decided she would incorporate Pop, Joe and I took Gram, and Zoe snagged Noah! ( the ringer)

Once you decided on your talent, it was top secret! You had to rehearse and get your props without anyone seeing or hearing you. Very, very difficult when we are all with each other 24/7. I would sneak over to Mom’s house and lock the door to Gram’s room…while Zoe and Noah would be over at our house stomping away upstairs. Malia had it easy because she could play the piano!

We celebrated the Talent Show over a decade long time period. My sister-in-law won over my heart the first year she performed, props, Toots! My son-in-law’s first Christmas with our family, was met with head shakes and guffaws. Word would spread and invites were begged for! It really was a spectacle to behold. My favorites by far: Mom crooning Santa Baby to Chris with her feather Boa and sparkly dress. Mia, Zoe and Noah changing the words to My Favorite Things , and of course my brother, Michael’s guitar strumming parody on the kid’s teenage life.

One year Marley, Noah and I taped glow sticks to our bodies, turned out the lights and went crazy to: Wild Cherry! We of course won for that one! Joe somehow managed to become prop and sound man. He rarely made his acting debut.

With Noah as mischievous as ever, he would wake up each day into everything and anything he could get his hands on. Extra locks had to be put on the doors because he was an amazing escape artist. If we were out shopping he would hide under the clothes racks, while we frantically searched for him!

When Christmas Eve finally rolled around, Zoe ingeniously incorporated this trait of Noahs into her act. The evening began with appetizers, champagne and the highly anticipated spot pick. This would determine the order the talents would be performed. Zoe and Noah’s slot was the grand finale, lucky pick.

Costumes were put on, chairs assembled, lights dimmed. Let the show begin! Pianos played, guitars strummed, Gram sang, we laughed until we cried. Finally Zoe came out dressed in a black party dress, waltzing with Noah in a cute angel costume with a halo. Everyone oohed and ahhed at out little blond cupid. Elvis crooned in the background, walked like an angel, talked like an angel….all of a sudden, Zoe ripped off the angel costume to reveal a shiny devil costume with a tail and horns! But he’s the devil in disguise, oh yes he is! Noah was dancing around, at a level ten for sure! Zoe had coached him so well, there was no denying it was the perfect act to end the night.

Secret voting began. The annual dispute of whether we were allowed to vote for ourselves was discussed. Ballots were then counted, Mom came out to announce the winner, in third place, winning a ten dollar gift card to Dunkin Donuts….Cathy and Chris! Second place with a twenty five dollar gift card to Olive Garden goes to….Kristen and Gramma Kate! Gram had a stroke in her late fifties and couldn’t speak but could sing a few bars, so I used that to my full advantage, sympathy vote, works every time! Finally the winner of the Nacrelli-Hunt-McGinnis Christmas Talent Show was…Zoe and Noah a.k.a Devil In Disguise.

Everyone sighed a relief that the show was behind us. We now had 365 days to scheme, plan and win back the coveted gnome trophy. This Christmas our family will be in Canada, St. Pete, Fort Walton Florida and Delaware.The gnome has been residing in Miami since before Covid hit. Even though we will be physically apart, the videos and memories of the Christmas Eve Talent Show live on!

Do you have a favorite memory or tradition that your family celebrates? I’d love to read about it.