Five Years ….

Published on by Kristen McGinnis1 Comment
Five Years…

I have the memory from when I was a child. My father was a lifeguard at Smyrna Pool and every day I would ride up the steep hill on South Street to meet him while he worked.

I loved being there because there were few rules and even less enforcement of them.

Here are the rules we lived by at the pool:

Number one, don’t run! Not because we would get in trouble but because we would get ‘hot foot’. ‘Hot foot’ got its name because when you ran on whatever medieval wrap they put down around the pool, the skin on the bottom of you foot would start to peel off.

Number two, obviously, don’t pee in the pool. My Dad was a prankster and had found a chemical that he could put in the water so that when it mixed with urine, it would leave a purple trail! No one wanted to be caught with a purple trail behind them!

Number three, you weren’t allowed to dive off the diving board until you could swim across the length of the pool without taking a breath! (I later learned that my Father made up this rule specifically for me. )

The memory I have is from this one day when Dad, was sitting in his usual chair around the pool, and I was playing in the water surrounded by a group of boys. I was never one to shy away from good trouble, so I began dunking them as payment for them tormenting me.

Soon the group of four boys had completely overpowered me. One dunk, up for air, a look at my Dad…nothing! Two, same thing. Three…Dad, “a little help here” …four…and…Dad officially lost it!

He started grabbing the boys pushing their heads under the water and holding them there a tad bit longer then necessary. He was making the point: don’t mess with my daughter!’

That’s the image I had in my head January 10, 2018 as I received the news that they had found a cyst in my right breast. “Lord, a divorce, a son with Juvenille Diabetes, a daughter with a traumatic brain injury, a son with Down Syndrome….and now …this?

Breast cancer had never even crossed my mind. I was healthy and young and I had nursed my four babies for a total of eight years ( yes, I nursed each baby for two years!) plus we had no history of it in our family. How could this happen?

Through a series of genetic testing it was determined that I amJewish, Ashkenazi to be exact. There were rumors that my great grandfather Michael had come to America to escape persecution, for a better life. Yet it was murmurings, hidden.

I sat in the doctor’s office and was told that I carried the BRACHA gene. That it could lay dormant for generations and then suddenly appear within a ‘suspicious carrier’. Yes, my mom found a t-shirt.

When the doctor did the lumpectomy, they found a trace amount of cancer cells in one lymph node. Me being the more-is-more girl that I am, I decided that we would throw everything at the disease we could so I signed up for the ‘Red Devil’.

This specific drug got its name because of its color ( bright red) and it comes with harsh side effects including hair loss, severe nausea and vomiting. I also thought it was appropriate that the dose of the Red Devil should begin on my 50th birthday.

On the first day of treatment, also my 50th birthday, the nurses came out in Hazmat suits, while my youngest daughter, Mia looked on. At only 18 years old she had volunteered to do the driving and chemo rounds with me while Joe worked and Mom and Marley watched Noah.

After the first dose, as predicted, my hair started to fall out, and Stacey held my hand while Laura shaved my head. I don’t remember mourning the loss of my hair as much as I remember being so grateful to have someone I love to do it.

Week after week of treatment, I got thinner and thinner. My arms became stick-like. My eyes were huge in my face. Noah would cry if he saw my bald head but I hated wearing the wigs, so I began wearing the little crochet caps the ladies would bring to cancer center.

Finally on May 10th, the chemo was done and the radiation was set to begin. I thought that radiation would be the easier of the two.

Every day I drove to Christiana for the next six to receive my treatment, then back home.

The nerves in my arms were so damaged by the PIC line and treatment, that I could barely move them. Thankfully, God provided me a masseuse, who faithfully rubbed my arms three times a week so that I could at a minimum, function.

I watched the clock, as I lost my mind. When people say that, and you think it’s a superlative…that people don’t really lose their minds. But whatever it was at the time, I was holding on to my life, myself and my reality by my fingertips. I was underwater with too many hands holding me, but unable to gasp for breath.

Even though it was the summer, life was gray. I tried to smile. To laugh, to say, ‘fuck you cancer’ …as survivors do. But time passed, and the sky remained gray.

The time came to ring the bell that you’re supposed to ring after you had received the last of the radiation treatments. What is supposed to be a momentous occasion is in reality, eerily lonely.

The morning of my next to the last treatment, I called the radiologist and told him I could not do one more treatment…not one more. Then he asked if after the 39th treatment that morning, if I could wait six hours and do the 40th treatment that same day. I agreed.

That day after number 39, I waited in my car in the parking garage in the middle of July. Watching the clock tick down…the radiologist stayed late, it was a Friday in the middle of the summer. No one was happy to have to do this.

I dutifully climbed up and allowed my self to be burned once again.

Once the treatment was done, I got off the table, and went into the dressing room. The technicians were already discussing their big plans for the night.

I walked out of the room, and there on the wall was the gold bell. The gold bell that you’re supposed to ring when you complete treatment. The bell signifies the end….but, I walked by it without a second glance.

For weeks all I did was sleep.

All I wanted to do was sleep. There was never enough sleep.

My mom would graciously wake me only to find me asleep fifteen minutes later. It was decided that my family would they take me to my happy place, otherwise known as the beach.

As soon as we got to Cape Henlopen, I made a nest and curled up,zoned out. After a while, Joe woke me just to move my chair to the other side of the pier. As I was trying to move my chair, I ended up with my head on the bottom of the seat. I looked and acted like a inebriated sap.

That’s when I started seeing a psychiatrist who told me that I had situational depression. I learned that our brains have a ‘lever’ and the lever gets triggered when something happens and then pops back into position after the trauma. When cancer hit, mine pressed down and never resumed its rightful place. My take away from my time with her was, to make a move change a thought. She told me I was perseverating on thoughts. The thoughts would then spiral into out-of-control emotions. But if I moved, it would change the track my brain was on. So, move I did.

My poor mama walked more trails, beaches, and loops that summer than she ever expected! We went on endless hikes, and aimless wandering through marshes and farmlands. Me, deep in thought, and her faithfully by my side.

I eventually found ‘Even’ again. With the help of Joe, the kids, the outdoors, the Lord, and especially my sweet Mama we limped onward.

Fast forward five years, and I’m sitting at what I call my soul doctor’s office retelling her my childhood memory of that one summer being dunked at the Smyrna Pool by a group of boys, when I finally realize that my Heavenly Father has let many bullies pull me asunder but the final blow was unequivocally His! I ..am…still…standing! There is still more to be done!

Linking arms at the jetty
Summer 2018
Cortez 1 year anniversary
Mar standing in solidarity with me March 16, 2018

Special thanks to Kira Jean-Simon for taking the time to edit this piece. My editor a.k.a Mom found it too painful. If you need any copywriting please reach out to her on Instagram at kirawrites_copywriting

The Bite

Published on by Kristen McGinnis1 Comment
Noah on the Dover YMCA Swim Team Circa 2016

This past week, while at lunch with Joe’s family, Aunt Millie was retelling an oldie but goodie of Noah’s. I told her I would include the story in my next post.

Noah from a very early age was a great swimmer. His oldest sister, Zoe had him swimming in the deep end of Maple Dale Pool at three years old. Having three older siblings who loved the water led to most summer days in the pool or ocean.

Zoe and Malia were both on swim team at the Y in Dover. Zoe was also a lifeguard. We seemed to live at swim meets. One year they were having tryouts for the younger swimmers, and the girls implored me to let Noah try.

He knew all the strokes, it was getting him to swim from one end to the other that was the problem. He would often get distracted and ‘duck dive’ to the bottom of the pool. Splashing while doing laps was the norm. Some parents would grumble during practices and say under their breath that he should be in Special Olympics instead of the Dover Dolphins. (I am looking at you Tracey!)

The coach of the team asked if I would sit on the board, since the girls were on their fourth year. Since the team had been run for decades by the same cliquey group, Brendan thought it was a perfect time to bring in fresh ideas.

It was decided that I would coordinate the volunteers and get them plugged in to open positions. The day before the first meet, the kids were swimming, the adults were all lined up and I was ‘on’!

I had parents learning to time, others learning to run the scoreboard. I had a group that was stocking the concession table, others making the lists of donations that were needed for the meet the next day. I was inwardly giving myself a pat on the back for how smoothly things were running. I can do this!

Somehow I lost the ‘why” of why I was doing this!

The next day was the big meet. People were checking in, balls were in the air. I was large and in charge, just the way I like it. I got Noah lined up on the block. Goggles, swim cap, suit, stroke all checked. I gave him a hug and told him to do his best.

Joe was running late at work. This was my nudge to slow down and focus on why we were there. It wasn’t so that I could run the show, which of course I could. It was to support our kids and give Noah any extra instruction he might need to successfully compete.

The races started! I missed it! That’s o.k. I’ll catch the next event. Uh-oh their was a problem at the grill. While I sorted that out, Noah was getting ready to swim his next event.

As I walked to the pool a very angry father came over to me. He started screaming at me and pointing at Noah. What. In. The. World. I looked at my son, trying to gauge what happened. He nonchalantly looked back. The man’s son was sobbing beside him with a huge bite mark on his thigh!

Apparently he was racing Noah in the butterfly (Noah’s best event?) and when he started to pass him, Noah turned his head and bit him!

Mortified, I stammered, apologized and took Noah’s goggles off so that he could look his victim in the eyes while he apologized. That’s when the father saw Noah’s disability and quickly walked away.

Joe walked into the pool entrance and was quickly filled in on what had just taken place. My man was MAD! Not at Noah, at me! He started to raise his voice (which he seldom does) and told me my priorities were all wrong! Our oldest friends came by and tried to usher us in a corner, but Joe wouldn’t have it.

He wanted me to resign my ‘important” position and do what only I could do, parent Noah. Ever since Joe married me at 23, he has worked tirelessly to provide for the four kids and I. Often working 60 hours a week to allow me to homeschool our children. Often that means he misses out on events and programs.

I sheepishly went to Brendan and resigned from my position. I spent the remainder of the season, cheering on our kids and being on bite patrol. It’s a mistake I repeatedly make. I want to believe that parenting a child with special needs is just like parenting my typical children. It is…until its not. It is during those times where things go off kilter, that I need to be ready to step in and give the extra support needed.

Noah, now at 16 needs me less and less. Still the text, call or email comes where extra love and care is essential. I am so grateful for the grace given to me by my family, Noah’s teachers and friends as we grow up together. Doing hard things with great love.

Tiny Tim?

Published on by Kristen McGinnis2 Comments
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

Published on by Kristen McGinnis4 Comments
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.

Baby Shark… do, do, do…

Published on by Kristen McGinnis1 Comment
Assateague Island 2012

Floor 22 left all of us badly shaken. Yet the day was young, the weather balmy, and the beach was beckoning. We loaded everyone up and headed down to the private beach.

Malia our resident mayor went in search of seashells. On her expedition, she began a conversation with a diver. He started to explain all the intricacies of the sport. Next thing we knew, she was out with a mask and snorkel, finding beautiful sea treasures.

The gentleman gave Malia a bag to dive with, waved and set her loose!

Mom and I were taking shifts with Noah, shift taking still goes on to this day! I was ‘on duty’. All of a sudden, I heard commotion up the beach. People were scrambling out of the water and a black fin was swimming parallel to the shore!

I looked down the beach at Mia who was about fifty feet off shore, grabbed Noah and started running! She of course was diving and clueless to what was happening on the beach. I’m running, screaming at her, dragging Noah behind me.

This next part sounds like it’s made up, but Boy Scout promise, I assure you it’s not! Three stoners came up to me with guitar, and ask what I was yelling about. I pointed to the ominous black fin slowly making its way up the shoreline, and told them it’s a shark! They don’t miss a beat and the three of them began strumming the Jaws theme. Yes, yes they did.

My fight or flight had already been depleted from the floor 22 experience. Now it was in overdrive because a shark was coming after my baby girl. What world was I living in???

Malia finally heard my screams, saw my panic, and used all her swim prowess to swim to shore. At that moment a six foot shadow passed us, it’s tail swishing, it’s fin gliding through the waves. We just stared at each other wide eyed.

We walked back to our compound, and our family was completely unaware of the mayhem we just endured. We began retelling them about the shark, the musicians, Malia swimming to avoid being eaten! No one believes us! My twinsie, Mia and I both speak in superlative, this always makes for interesting storytelling, but our kin always take us with a grain of salt.

The musicians walked past us, still playing the Jaws theme ✔️ then, the ‘shadow’ turned and started making its way up the coast in the opposite direction, Mom and the kids saw the fin with their own eyes. ✔️

I called Joe, for the second time that day with another outlandish but true tale. My husband, the forever realist, told me it was probably a tarpon or at the very most a benign sand shark!

Regardless of the true nature of the 10 foot behemoth, we survived and lived to tell the tale! Just another family vacation, nothing to write home about!

Merry Christmas! Until next time!

The fake shark used in the movie Jaws!

Floor 22

Published on by Kristen McGinnis2 Comments

I hate winter! Can I just get that out of the way? Anyone who knows me, knows that the beach is my happy place. Cold, winter months have me craving Florida sunshine. Knowing this, Mom would often do a winter rental somewhere in the sunshine state. This particular year it was in Miami so that we could be close to my brother and his family.

Mom got a cute little condo facing the ocean. The kids and I flew down excited to be spending a week in South Beach. When we got to the hotel, it was sprawling! A circular drive led to a forty story building with multiple pools and a private beach. The valet took our luggage and we headed up to our suite.

Noah was about 6 years old and had a propensity to wander away. With Mom, Renee, Zoe, Marley, Malia and I all taking Noah shifts, we were confident that someone would always have an eye on him.

Going up in the elevator I took the opportunity to review Noah’s numbers. We talked about how we were on floor 22, and how it was a repeating number. The elevator was pretty full, but I’m so oblivious to spectators observing our unconventional life. I asked Noah to recite our floor and to show me the number. We counted the floors as we went higher and higher.

A week of elevators was Noah’s dream, not to mention our view was of a drawbridge on the Intercoastal Waterway. The sights and sounds were a six year old’s dream!

His favorite thing about the hotel was the garbage chute. His chore each day was to walk the trash to the foyer of the floor, open the hatch and drop the bag down the conveyor.

Since there were seven of us in our condo, we were generating a lot of refuse. Noah was using the chute multiple times a day! An escort would make sure he was not attempting to slide down it himself.

One morning, Noah told me the trash needed to go out, I was the only one up. He and I walked down the corridor, I stopped at the corner, he continued a couple more yards to where he was to drop the days waste and come back.

I waited a second, nothing. I looked around the corner and Noah was gone! That quick! I ran down the hall, no sign of him. Every parents worst nightmare was flashing before my eyes.

I ran back to our suite, and screamed at everyone to wake up! Noah was lost. We all spread out, some checking our floor, others walking down the emergency staircase.

Each minute felt like days. I was having a panic attack while I was running around our hotel in my nightgown, barefoot. I asked all the service personnel if they had seen a little blond boy anywhere. Most spoke Spanish, so no one understood my question.

I ran to the front lobby which lets out on a very busy street. Could he have left the building? Do I run through the streets?

I needed to call the police, then call Joe. Shakily I got on the elevator to make two calls I dreaded. Time was of the essence.

I got off on our floor and there was a handsome gentleman holding Noah’s hand waiting in the foyer of our floor!

I rushed to Noah crying, sweeping him in my arms. The man told me the day we arrived he was in the elevator with us. As I was going over Noah’s numbers, I kept repeating that we were staying on floor 22, double digits.

He found Noah wandering the downstairs lobby. Apparently he dropped the trash in the chute, got on the elevator and escaped to the front desk, all in nanoseconds.

The kind stranger said he recognized Noah’s tow head, and almond eyes immediately and knew to bring him back to floor 22. Slowly, one by one, the rescue party came back to our suite overjoyed to find Noah was safe.

From that day forward, all the service people, front desk workers and hotel guests would call out and greet Noah by name wherever we went. Mr. Mayor took his notoriety in stride and greeted everyone with high fives and fist bumps.

Crisis 10,001 averted. Mom and I caught our breath, thanked the Lord and headed to the beach. You would think the day had enough excitement, but there was much more in store for us that day!

To be continued….

Something About Ezra

Published on by Kristen McGinnis2 Comments
Biking in South Beach Miami

Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up. Also, if two lie down together, they will keep warm. But how can one keep warm alone? Ecclesiastes 4:9-12

One of the many blessings that happened from the Little Red School House was that Noah was always surrounded by friends. Some came for the school year then drifted out of our lives, others are still friends to this day 13 years later.

Ezra and his family came into our lives from Virginia Beach. His family came up to help with a church plant we were involved in. Since Ezra and his brother Titus were about Noah’s age and homeschooled, I extended an invitation for the boys to become part of our class.

Right away Ezra became Noah’s guard. Noah was a runner. When he was little he would escape the securest of settings. We had to install keyed locks on all our doors, and if he went to any event, he would have to have a sibling or friend on Noah duty.

Noah was 4 and Ezra was 3 so most interactions were short play dates or co-op classes on Thursdays. But as the boys began to mature, sleepovers and weekends with our family became the norm.

One day Ezra told us he was moving to Oklahoma. His father had been offered a pastoral position at a church in the area, and the family was moving. We were heartbroken! We knew that long distance friendships were hard and at such a young age, it would be almost impossible to keep the boys close.

Noah talked about Ezra daily often. Little did we know that hundreds of miles away, Ezra was doing the same thing! Ezra’s middle name is David and Noah’s is Jonathon and just like in the Bible, this friendship was destined to be for life!

My incentive to get Noah to read, was a trip to visit Ezra in Oklahoma. Everyday he would struggle with phonics and sight words, knowing if he accomplished his goal, he would get to see his friend. Months went by with little progress.

One day there was talk of the family moving back to Delaware! Could it be? Even if Ezra was somewhere in the state, that was better than half way across the county!

It turned out that Ezra moved a mere seven minutes from our farm! Reunited and it feels so good …The boys picked up their friendship as if no time had passed. They were inseparable. Ezra came everywhere with us. He knew all of our extended family and friends. I knew his likes and dislikes. When I’d do my grocery order, I’d always include Ezra’s favorites.

Trips to Miami, our beach house, birthdays, Longwood…you name it Ezra was there. He has prayed for Noah through countless hospital stays, and often modeled correct ways to handle chick buffets!

As the boys reached high school, their friendship looks completely different than it did years ago. We don’t see Ezra as often, but when we do, the visits are filled with laughter and inside jokes. For years, Ezra would go with mom, Noah and I to the beach house. we would refer to it as The Office. Soon a group chat titled the office was started between all of us. Touchdowns were shared, dates and times of games given, invitations extended.

Our last big visit with Ezra included a family dinner where Noah was presented a harmonica ( thanks Mom) soon the boys had set up stools, and were holding coat hangers (for microphones) in their toes while singing!

The Office

Minecraft camp, fishing at The Point, the infamous Jitters, Wawa run ….I could write a book filled with the boys capers. This brother from another mother will always hold a special place in our families lives. Not only did he help Noah grow up to be the amazing sixteen year old he is today, he completed our family! Ezra means helper and help he does!

Did someone say cheese?

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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?

Published on by Kristen McGinnis3 Comments
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?

Published on by Kristen McGinnis2 Comments
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.